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thic

IS

habi

1

of


Issues

Ethical

in

Disability

and

Rehabiltation

1989

conference

international

report of a

by

Edited

Duncan, Rehabilitation International

Barbara

and

E. Woods, World Rehabilitation Fund

Diane

volume is published as a collaborative project of the World Institute on Disability,

This

International and the World Rehabilitation Fund.

Rehabilitation


volume was supported in part by the following two international grants by

This

U.S. National Institute for Disability and Rehabilitation Research:

the

Disability Exchanges And Studies (IDEAS) Project, Grant

International

administered by the World Institute on Disability in collaboration with

#G0087C2013,

Rehabilitation International.

Exchange of Experts and Information in Rehabilitation, Grant

International

administered by the World Rehabilitation Fund.

#G0087C0227,

Additional copies available as follows:

from USA: $10, World Rehabilitation Fund, 400 East 34th Street, New

Orders

New York 10016

York,

from other countries: $20, including airmail postage, Rehabilitation Inter-

Orders

25 East 21st Street, New York, New York 10010, USA.

national,

available from: World Institute on Disability, 510 16th Street, Oakland, CA

Also

USA.

94612,

ISBN#0-9605554-7-1

Kathy Marchael

Typesetting:

Printing Production Services, Inc., New York City

Printing:


Table of Contents

contents of this monograph, "Ethical Issues in Disability and Rehabilitation," consist of five parts:

The

Introductory Material: Acknowledgements, Preface, Foreword, Conference Overview

1)

Papers presented to an international symposium on this topic, held in Denver, Colorado in June 1989 as

2)

section of the annual conference of the Society for Disability Studies.

a

Responses to the symposium, prepared by four of the participants.

3)

Selected additional papers which offer views from perspectives or cultures not represented at the Denver

4)

conference.

Annotated lnternational Bibliography.

5)

I Introductory Material 1

Section

Preface

Institute on Disability 3

World

and Special Note

Acknowledgements

Rehabilitation Fund 5

World

Overview

Conference

International 7

Rehabilitation

Foreword

H. Mather, M.D., Chief Medical Director, U.S. Social Security Administration 13

John

2 Conferenea Pars 15

Section

Engineering-The New Eugenics?

Genetic

Medical Attitudes Towards the Quality of Life

Evolving

Gregory Gallagher, author of By Trust Betrayed:

Hugh

and Physicians in the Third Reich, 1990, Henry Holt 17

Patients

of the Decision-Making Project

Description

Evans, Ph.D., Project Director, The Decision Making Project, University of Kansas 27

Daryl

and Nontreatment Decisions with Respect toExtremely Premature,

Treatment

Low Birthweight Infants (5000-7000g)

Very

Young, Ph.D., Chairman, Ethics Committee, Stanford University Hospital 29

Ernl

of Resources and Distributive Justice

Allocation

H. Mather, M.D., Chief Medical Director, U.S. Social Security Administration 35

John

Assurance as an Aid to Ethical Decision Making in Disability Management:

Quality

from Recent Ethical Issues Involving Disadvantaged Groups in New Zealand

Lessons

J. Gow, MBChB, BMedSc, FRACP, FACRM, President,

Peter

Zealand Rehabilitation Association 47

New

and Ethical Issues: A Point of View from the Netherlands

Disability

Yolan Koster-Dreese, Vice President, Dutch Council of the Disabled, Utrecht 55


Shall Live or How Shall They Live?

Who

and Professional Perspectives on Treatment Decisions

Consumer

M. Kaufert, Ph.D. and Patricia A. Kaufert, Ph.D.,

Joseph

of Manitoba, Canada 63

University

Across Social Movements on Reproductive Technologies

Debates

Engineering, and Eugenics

Genetic

Theresia Degener, LL.M., Frankfurt, Federal Republic of Germany 73

3 Conference Commentaries 83

Section

Meeting of Disability and Bioethics: A Beginning.Rapprochement

The

Asch, New Jersey Bioethics Commission 85

Adrienne

Plea for More Dialogue: Commentary on Ethics Conference

A

J. Slater, M.D., Health Decisions USA, National Health Council 91

Robert

Our Wounds

Healing

Lentz Walker, Ed.D., C.R.C., Professor, Kent State University 95

Martha

and Values: Ethics and Contrasting Perspectives on Disability

Theories

Hahn, Ph.D., Department of Political Science,

Harlan

of Southern California 101

University

Example of Ethical Dilemma

Current

Lacetti, Staff Writer, The Atlanta Constitution 105

Susan

4 Selected Additional Papers 107

Section

Medicine Is Basic Care

High-tech

R. Abrams, M.D., Chairman, Colorado Health Decisions Project 109

Frederick

of Disabilities as a Medical Question

Prevention

G. Schioler, M.D., DPH, Deputy Director General, Danish National Board of Health 113

Ethics of Disability Prevention: A Parent's Point of View

The

J. Baker, Faulconbridge, NSW, Australia

Mrs.

Reference Matrix for Issues of Life & Personhood

A

Miles, Director, Mental Health Center, Peshawar,

Mike

Frontier Province, Pakistan 123

Northwestern

Scientists and Ethics of Today

Nazi

Wilkerson, New York Times 131

Isabel

& Policy Issues in Rehabilitation Medicine (Hastings Center Report)

Ethical

L. Caplan, Daniel Callahan and Janet Haas 135

Arthur

Approaches to Prevention of Disability and Treatment

Differing

Impaired Infants Creates Controversies Worldwide

of

Duncan, International Rehabilitation Review 155

Barbara

Section 5 Annotated International Bibliography, 157

.

119


1

Section

Material

Introductory

Drawing by Walt Henry, American MedicalNews, June 6, 1986


Preface

Institute on Disability (WID),

World

International (RI), and the World

Rehabilitation

Fund (WRF) are proud to bring

Rehabilitation

these conference proceedings concerning

you

questions facing disabled and non-dis-

ethical

people in the United States and around

abled

world today. We hope the material will be

the

compelling to you the reader as it was for

as

of us who put it together and participated

those

the conference. We would like to thank the

in

for Disability Studies for welcoming

Society

event as an integral part of its annual meet-

this

and helping to ensure its success.

ing

conference came about because Hugh

This

carried out an IDEAS fellowship

Gallagher

WID and RI to research 'q?he Impact of the

from

Program since World War II on

Euthanasia

Attitudes, Disability Rights, and the

Disability

Relationship in the Federal

Patient-Doctor

of Germany". We believed that his

Republic

brought to light several significant is-

research

that could serve as the basis for a stimulat-

sues

conference and report. We invited the

ing

International Exchange of Experts and

WRF's

in Rehabilitation (IEEIR) project to

Information

with WID and RI. These joint efforts

collaborate

enabled us to put together a conference

have

international in scope.

truly

people, family members, profes-

Disabled

and societies as a whole are facing

sionals,

complicated ethical questions. As or-

many

WID and RI have been participat-

ganizations

in discussions concerning some of these

ing

ethical questions. We hope this

complicated

will give you food for thought about

report

of the ethical questions we as a society are

many

today. These are some of the questions

facing

were thinking about when planning this

we

and report: who shall live; who shall

conference

who shall make these decisions; what, if

die;

handicappist biases are built into our

any,

that result in prejudicial treatment

society

towards the disabled person; how has the

3

of society to provide such services as

failure

assistance, adequate housing, techni-

personal

aids, durable medical equipment, transpor-

cal

and employment opportunities resulted

tation,

disabled people giving up hope for an ade-

in

life and subsequently requesting assis-

quate

in committing suicide; is the role the court

tance

currently playing with assistive suicides ap-

is

is society obligated to ensure that it

propriate;

reasonably easy for a person, regardless of the

is

of disability, to live a comfortable and

severity

life in the United States; what role should

safe

disabled community be playing in further-

the

these discussions; what role should profes-

ing

play; how can we determine if the bias

sionals

a professional or the court is resulting in

of

treatment for the person with a

detrimental

disability?

welcome your feedback on the format of

We

report. Are you usingit? Is this a document

this

staff and consumers of independent living

that

disability and rehabilitation organiza-

centers,

professors, researchers and students at

tions,

women's groups, ethicists, health

universities,

religious organizations, labor

professionals,

policy makers etc. find useful? Do you

unions,

have suggestions for how a

document of this

could be more helpful to you?

type

hope that this document, and those

We

we will publish in the future, will enable

which

to learn how other people around the

people

world are

defining and resolving problems

people with disabilities.

facing

you.

Thank

E. Heumann

Judith

President

Vice

and International Affairs

Domestic

Institute on Disability

World

Conly

Mark

Manager, IDEAS

Program

World Institute on Disability


Acknowledgements and Special Note

co-publishers of this monograph on

The

would like to acknowledge the role that

Ethics

Society for Disability Studies played in

the

the arrangements for the sym-

facilitating

at which most of the main papers which

posium

in this monograph were presented. Ir-

appear

Zola and John Seidel were particularly

ving

to the sponsoring organizations in con-

helpful

the International Ethics Symposium at

vening

Second Annual Society for Disability

the

meeting in Denver, Colorado in June

Studies

1989.

World Rehabilitation Fund's Interna-

The

Exchange of Experts and Information in

tional

(WRF-IEEIR) would also like to

Rehabilitation

two WRF-IEEIR fellows whose

acknowledge

study-visits in the early 1980's

fellowship

to bring to the awareness of the U.S.

helped

community the need to consider ethi-

disability

issues more fully.

cal

1980, Ruth Purtilo, R.P.T., Ph.D. was

In

a WRF-IEEIR study fellowship for the

awarded

of engaging her analytical skills as an

purpose

to (1) further examine moral reasoning

ethicist

will support "humane" medical care

that

persons with chronic illnesses and (2)

toward

the trade-offs and limits encountered

evaluate

trying to formulate rehabilitation-

when

and long-term-care policies that reflect

oriented

held ethical ideals and values. This

widely

was carried out in Sweden and her report

study

so well received by the (then) National

was

of Handicapped (NIHR) that it was

Institute

to invite Dr. Purtilo to contribute to the

decided

monograph series, usually

WRF-IEEIR

for foreign authors. The result was

reserved

Liberty, Compassion-"Humane"

Justice,

Care and Rehabilitation in the U.S.:

Health

Some Lessons from Sweden, published in 1981.

also in 1981, a utilization con-

Subsequently,

was convened by the WRF-IEEIR to

ference

with U.S. ethicists, rehabilitationists

discuss

consumers the ideas elucidated in Dr.

and

Purtilo's report and monograph. Mr. Ed

5

Co-director of World Institute on Dis-

Roberts,

and at that time State Director of

ability

Office of Vocational Rehabilitation,

California's

one of the twenty-five participants at this

was

meeting.

was Ernl6 Young, Ph.D., Chaplain and

So

Lecturer in Ethics at Stanford University,

Senior

later in 1983 applied for and was awarded

who

WRF-IEEIR fellowship to investigate societal

a

for the long-term needs of people

provision

disabilities in Great Britain and Sweden

with

to decision-making in new-born inten-

relative

sive care units.

Dr. Young's report was prepared at

Because

time of growing interest in Baby Doe and

the

it was again decided to publish his

"hot-lines",

in the WRF-IEEIR monograph series and

report

include a variety of "voices" in response to

to

report in a commentary section in the

his

Thus, this controversial topic was

monograph.

and a cross-section of persons concerned

aired

these issues in the U.S. had the oppor-

about

to speak out.

tunity

the WRD-IEE1R has a tradition, as it were,

So

engage in dialogue around ethical issues

to

to disability, which made the offer to

related

in the co-sponsorship with World Institute

join

Disability and Rehabilitation International

on

the conference that sponsored this

of

one we couldn't refuse.

monograph

we would like to acknowledge

Therefore,

thank both Ruth Purtilo and Ernl6 Young

and

those individuals who promoted consider-

as

interest in ethical issues in the U.S. dis-

able

community in the early 1980's. Also, we

ability

like to express, our appreciation to

would

now the National Institute for Disability

NIHR,

Rehabilitation Research (NIDRR) for its

and

and support these early inter-

encouragement

fellowship exchanges which stimu-

national

considerable interest in Ethics.

lated

continuing support by NIDRR for the

The

Exchange of Experts and Infor-

International


in Rehabilitation and now the IDEAS

mation

has made it possible to bring to the U.S.

project

community ways of thinking about

disability

that come from other countries.

disability

are indebted to Hugh Gallagher whose

We

fellowship study was the stimulus for

IDEAS

June 1989 conference which brought

the

all of the individuals whose papers are

together

in this monograph.

presented

all of those meeting presenters, par-

To

ticipants and contributors to this monograph

express appreciation for providing us with

we

that we feel certain will make it pos-

material

for this extremely important dialogue to

sible

continue.

F. Garrett, Ph.D.

James

President

Vice

World Rehabilitation Fund

E. Woods

Diane

Director

Project

Exchange of Experts and

International

in Rehabilitation

Information


Conference Overview

is a summary of the key issues presented at the conference, reprinted from the Interna-

Following

Rehabilitation Review, VoL XL, Nos. 2 & 3, written by Barbara Duncan, Assistant Secretary

tional

General, Rehabilitation International

Disabled People and

Doctors,

Specialists

Bioethics

Debate in Denver

there parallels between the eugenics

Are

of yesterday and the genetic en-

movement

momentum of today? Is society

gineering

to accommodate the choices presented

ready

genetic engineering? Who is making the

by

about medically treating or not

decisions

infants with severe impairments? If

treating

of health care is on national agen-

rationing

who is advocating for the disabled

das,

to receive equity? How do

population

centers decide which clients are

rehabilitation

medical and vocational services?

allocated

people with disability expertise ade-

Are

represented on bioethics committees?

quately

group of approximately 60 participants

A

10 countries metto discuss these and other

from

issues in the disability and rehabilitation

ethical

at an international symposium held in

fields

Colorado, USA. The symposium,

Denver,

took place June 23-24, was developed to

which

provide a

forum for suggestions on how the

constituency can become more active

disability

influential in groups and processes impact-

and

ing on decisions in the bioethical arena.

Sponsors

the meeting were the World

Cosponsoring

on Disability, Rehabilitation Interna-

Institute

and the World Rehabilitation Fund. The

tional

was a joint activity funded by the

Symposium

grants awarded to the organiza-

international

by the U.S. National Institute of Disability

tions

Rehabilitation Research.

and

following article is a summary of the

The

meeting.

7

Topics

Symposium

topics of papers and discussions were:

Main

from and parallels between the

lessons

movement of the early 20th century

eugenics

the genetic intervention and disability

and

technologies of today; ethical con-

prevention

in neonatal intensive care of infants

siderations

impairments; treatment decisions in

with

facilities; and reports on dis-

rehabilitation

focuses of bio-ethics committees

ability-related

and commissions and health decision groups.

symposium was divided into five ses-

The

on the following themes: social policy

sions

allocation of resources: ethical issues;

issues;

can the disability community become

how

active in deliberations about the ap-

more

uses of new technologies and health

propriate

distribution in society?; medical tech-

resource

in search of a social consensus; and

nologies:

and rehabilitation groups: case histories,

health

the middle session as an open discussion

with

all related topics.

on

following individuals played key roles

The

speakers or chairpersons:

as

Abrams, M.D., Chairman,

Frederick

Health Decisions Project

Colorado

Asch, Associate in Social Science

Adrienne

Policy, New Jersey Bioethics Commission

and

Berrol, M.D., Chief, Rehabilitation

Sheldon

Service, San Francisco General

Medicine

Hospital

Degener, LL.M., Federal Republic

Theresia

Germany

of

Evans, Ph.D., Associate Professor of

Daryl

Sociology, University of Kansas

Medical

G. Gallagher, author of FDR's Splendid

Hugh

and By Trust Betrayed: Patients and

Deception

in the Third Reich (Holt 1990)

Physicians

Gow, M.D., President, New Zealand

Peter


Association

Rehabilitation

Hahn, Ph.D., Dept. of Political

Harlan

University of Southern California

Science,

Heumann, Vice President, World In-

Judy

on Disability

stitute

Kaufert, Ph.D., Faculty of Medicine,

Joseph

of Community Health Sciences, Univer-

Dept.

of Manitoba, Canada

sity

Koster-Dreese, Vice President, Dutch

Yolan

of the Disabled

Council

H. Mather, M.D., Chief Medical Officer,

John

Social Security Administration

U.S.

Menter, M.D., Project Director, Rocky

Robert

Regional Spinal Cord Injury System

Mountain

Slater, M.D., Health Decisions USA,

Robert

Health Council

National

W.D. Young, Ph.D., Chairman, Ethics

Ernl6

Stanford University Hospital

Committee,

Zola, Ph.D., Chairman, Dept. of

Irving

Brandeis University

Sociology,

Highlights

Program

purposes of the Symposium were

The

(1) to bring together representatives of

twofold:

medical community involved in bioethical

the

of decision-making, of disability ad-

aspects

groups, of rehabilitation professionals,

vocacy

researchers, to establish a dialogue and (2)

and

present some information about related

to

in several countries. The ex-

developments

of the Netherlands, Canada, New

periences

the Federal Republic of Germany and

Zealand,

USA were selected for presentation.

the

Gregory Gallagher, author of a just

Hugh

book on the relationship between

published

and physicians in Germany's Third

patients

presented a paper on "Genetic Engineer-

Reich,

New Eugenics: Evolving Medical At-

ing-the

towards the Quality of Life.." Mr.

titudes

1988 investigations in Germany

Gallagher's

Austria were supported by an IDEAS* fel-

and

Mr. Gallagher's paper for the Ethics

lowship.

concentrated on his concern that

symposium

as yesterday's eugenics "experts" were

just

by the Third Reich to institute un-

elevated

social policy aimed at cleansing a

monitored

contaminated national "gene

supposedly

today's genetic engineering specialists

pool",

the supporting bio-engineering industry is

and

towards unfettered manipulation of

moving

gene pool of the future. He stated,

the

our free society, it is the duty of both the

"In

and the citizenry through a

government

of checks and balances, both formal and

series

to insist upon the primacy of the

informal,

convenience, health, and safety.

public

point is most particularly true in the

This

of genetic engineering. The stakes are

case

and if the game must be played, it

high

be played fairly. Informed regulations

should

be equally applied. There should be

should

attention and public discussion of

political

issues, followed by wide participation

genetic

decision making on genetic policy. It can-

in

be left to the doctors or the scientists."

not

H. Mather, M.D., Chief Medical Direc-

John

of the U.S. Social Security Administration

tor

a comprehensive overview of the

presented

U.S. health care system and of public

current

governmental pressures to capture costs

and

ensuring some measures of fairness to all.

while

his paper, "Allocation of Resources and Dis-

In

Justice," Dr. Mather points out that,

tributive

demands of medical consumers and

"The

seem to be increasingly at odds

providers

the willingness of governments or

with

insurers to pay the bill. The evidence

health

a mounting tension has been the increased

of

of providers as each lobbies for

dissatisfaction

larger share of limited resources: geriatrics

a

neonatal intensive care, AIDS versus

versus

medicine, physical rehabilitation

preventive

transplant surgery, mental health ver-

versus

trauma and emergency care. The struggle

sus

inevitable with one economist (E. Rein-

seems

observing the emergence of "bad man-

hart)

at the health care trough.'"

nets

Disability Exchanges and Studies (IDEAS) Project, administered by the World Institute on Disability

*International

Rehabilitation International

and

8


Evans, Ph.D. is Director of the

Daryl

Project, a five year federally

Decision-Making

investigation into the social

sponsored

of the "Baby Doe" cases (involv-

ramifications

withdrawal of treatment for severely dis-

ing

infants). He stressed that,

abled

health care rationing more discernible

"With

many settings, laws designed to protect

in

rights of citizens with disabilities-some of

the

require great material and technologi-

whom

resources to survive-may be all that

cal

between the provision of medical care

stands

these persons and a reemergence of some

for

the more untoward aspects of the eugenics

of

movement."

Evans' report concentrated in part on

Dr.

parents arrive at their decisions regarding

how

treatment for their infants with impair-

medical

He commented,

ments.

if these parents were to look into a

"Perhaps,

mirror more willing to nurture their

societal

their determination, even their happi-

hope,

we might take the greatest step in des-

ness,

disability, and transcending the

tigrnatizing

for "Baby Doe" Amendments."

need

W.D. Young, Ph.D., Chairman of the

Eml6

Committee of Stanford University

Ethics

California, presented a paper on

Hospital,

and Non-Treatment Decisions with

'qreatment

Respect to

Extremely Premature, Very Low

Infants (500-750 g)." Dr. Young

Birthweight

on trends he had observed in a World

reported

Fund International Exchange of

Rehabilitation

and Information fellowship to Sweden

Experts

England. In brief, trends noted were: in

and

the tendency was essentially not to

Sweden

vigorously infants unde r 750 grams unless

treat

countervailing evidence was present;

strong

British approach could be summarized as

the

treatment and then re-evaluating the

beginning

regularly on the basis, of clinical indica-

decision

and the USA approach as one which en-

tions;

vigorous treatment for all infants until

courages

is clear they are not bcilg benefitted or are

it

being harmed. Concerning the future,

actually

concludes:

Young

a society, we need to redefine the nature

"As

significance of autonomy in the context

and

medical care. Surely it does not give to the

of

or, in the case of the neonate, the

patient

surrogate, the right to practice

patient's

without a license-become involved

medicine

the technical decisions that caregivers

in

are properly able to make. Surely

alone

is inherently limited by considera-

autonomy

affecting the community... And surely

tions

requires that the relationship be-

autonomy

caregivers and parents be collaborative

tween

mutualistic, with parents helping to define

or

overall goals of treatment but not neces-

the

becoming involved in medical decision-

sarily

As inappropriate as is

making.

paternalism on the part of

benignly-intended

in our time is unbounded

physicians

on the part of the recipients of

autocracy

care-in asserting that either more or

medical

be done for the infant than seems to be

less

indicated. Both extremes reduce

medically

the parents or the caregivers to subser-

either

But once physicians and parents,

vience.

have agreed to a strategy for treat-

together,

or nontreatment, this ought not to be

ment

to arbitrary veto by interested third

subject

pro-life lobbyists or federat

parties-whether

If this be not conceded, it is dif-

bureaucrats.

to see how we can both honor and

ficul

the limits of the principle of

respect

autonomy."

Forum

Open

open forum evening session took place on

An

23 to allow the participants time to explore

June

of the more controversial issues in an

some

setting. The session was co-chaired by

informal

Harlan Hahn and Ms. Judy Heumann. The

Prof.

which came to the fore included: (1) fear

issues

the new genetic engineering momentum is

that

Societies to expect that the human body

leading

"perfectable'; (2) concern that the expendi-

is

on disability prevention machinery (re-

tures

personnel, equipment) will far

search,

the support offered to families with

outweigh

members; (3) the need to improve in-

disabled

formation to demystify disability and dispel the


that life with a disability is a tragedy,

folklore

by persistent sorrow; (4) the im-

characterized

of allying with other groups (such as

portance

elderly) who feel threatened by the new

the

on "allocation or rationing of limited

emphasis

resources"; and (5) the importance of

health

people with disabilities in bioethical

training

so they can serve on medical ethics com-

issues

mittees.

from Netherlands, Canada,

Views

Republic of Germany

Federal

Yolan Koster-Dreese, Vice President of

Mrs.

Dutch Council of the Disabled, based in

the

Netherlands, described her experien-

Utrecht,

as a representative to recent international

ces

on ethical issues and the health and

meetings

field. She outlined her perception of

disability

major ethical dilemmas and why it is impor-

the

that disability advocacy organizations be-

tant

involved in these issues. She emphasized:

come

is debatable whether a social consensus

"It

ever arise around the ethical dilemmas

will

which we are confronted because of the

with

developments in the natural sciences.

rapid

the first time in the history of mankind it

For

possible to influence the form of life: fun-

is

involvement both before conception

damental

during pregnancy as well as in the later

and

of life is now possible by means of

stages

or replacement. This technical

manipulation

must be seen against the background

ability

current medical practices. This medical

of

is based on two pillars, namely

practice

and the urge to treat, to execute

epidemiology

therapy. On the basis of epidemiology it is

a

what should be considered as

determined

and current medical training en-

"defective"

that a doctor will want to treat such

sures

This, added to the government view

defects.

health is an absence of illness, opens a

that

Pandora's box. It would appear that just

new

everyone has been dragged along into

about

"eternal life syndrome" and the drive for

the

From an old socialistic dream

"perfection".

society is makeable we have now landed

that

an individualistic dream, or perhaps

in

that life is makeable. This dream

nightmare,

10

little or no room for "being different".

leaves

because "being different" is the basic

And

of departure of an organization such as

point

Dutch Council of the Disabled, we now

the

serious problems."

experience

also listed some possible future

She

scenarios:

everything develops according to the ex-

"If

trends then we will soon know a great

pected

about the expected defects, the cause or

deal

of sicknesses and defects, and about the

origin

some people have to certain

susceptibility

of sicknesses and defects.

types

the society level, decisions may be taken

At

on this new information. I will try to il-

based

this with a number of examples.

lustrate

The government says it supports the

a)

of its citizens to choose in freedom, but

ability

the same time takes such measures that the

at

of health care drops, so that it becomes

level

"unattractive" for parents to allow

especially

child with a handicap to be born.

a

Insurance companies will base their

b)

on hereditary information.

tariffs

In dividing up the funds in the health-

c)

sector, someone with a favorable prog-

care

will be more eligible for life-increasing

nosis

quality-improving treatment than some-

or

not expected to live much longer: he

one

would be a bad investment."

Degener, LL.M. of the Federal

Theresia

of Germany presented her views as a

Republic

of Finrrage (Feminist International

member

of Resistance Against Reproductive

Network

Genetic Engineering) and of the Federal

and

of Germany's Forum of Disability

Republic

Finrrage, comprised mostly of scien-

Groups.

lawyers, health specialists, sociologists,

tists,

has members in approximately 30 countries

etc.

participate in conferences, political fora,

who

parliamentary discussions about human

and

and reproductive technologies. Fol-

genetics

is a summary of the Finrrage outlook.

lowing

of Finrrage believe that what is

"Women

by those who support these tech-

promised

i.e. that these new technologies

nologies,


women to exercise greater control over

enable

reproduction and thus give them greater

their

false. Rather, the organization feels

liberty-is

these technologies deprive women of con-

that

of what has been their domain: childbear-

trol

and motherhood. Women to whom these

ing

are applied, who "consume" these

technologies

reproductive technologies find themsel-

new

reduced to egg donors, (surrogate)

ves

fetal environments, reduced to inter-

wombs,

raw materials in the process of

changeable

reproduction. Women regain the

human

of personhood only when it comes to

status

point of making selective (and mostly

the

choices, such as selective abortion...

eugenic)

all women are left with is being in

And

of quality control over their offspring.

charge

a disabled child isn't a true option to

Having

Every woman knows the social status

them.

disabled people and their families all over

of

world: it is determined by discrimination,

the

foreclosed from the mainstream of

being

society and being denied basic rights."

Degener, whose impairment was caused

Ms.

thalidomide, also described activities of

by

German disability groups which actively

West

against professional discussions of dis-

protest

prevention campaigns and policies

ability

the involvement of advocacy organiza-

without

tiOnso

M. Kaufert, Ph.D. of the Department

Joseph

Community Health Sciences, University of

of

Canada, presented a paper entitled,

Manitoba,

Shall Live or How Shall They Live:

"Who

Ethics, the Consumer and the

Biomedical

Professional." Prof. Kaufert's

Rehabilitation

concern is that much of today's ethical

central

in the medical field is focused on the

debate

right to die balanced against the

"individual's

of life supporting machinery and

availability

the obligation of the physician to preserve life."

feels that equal emphasis should be

He

on the ethical aspects of assuring a cer-

placed

"quality of life" to those individuals who

tain

survive (chronic illness or disabling condi-

will

but require long term care and tech-

tions),

support. He emphasized that,

nological

11

care decisions are less clear cut,

"Community

they are also less visible. From the point

but

view of an ethicist, they lack the drama and

of

choice points associated with turning off

clear

life support system. Yet, for consumers

a

with the loss of independence and move

faced

an institutional setting, the withdrawal of

to

supports may be critical not to

technological

per se, but to many forms of mean-

survival

survival as determined by the quality

ingful

their lives

of

we may be acquiring the right to deter-

While

when we will die, we are all (the tem-

mine

able-bodied as well as those who are

porarily

losing the right to determine how we

not)

live independently and with dignity."

will

J. Gowj BMedSc, FRACP, FACRM,

Peter

of the New Zealand Rehabilitation

President

delivered a paper on "Quality As-

Association,

as an Aid to Ethical Decision-Making

surance

Disability Management: Lessons from

in

Ethical Issues Involving Disadvantaged

Recent

in New Zealand." Dr. Gow's paper

Groups

a number of illustrations of recent

provided

problems in New Zealand service

ethical

and descriptions of their resolution.

provision

included deficient medical services

Examples

to people with mental illness and a case

offered

persistent undertreatment of a group of

of

with cancer. His paper also suggested

women

to set standards in the future, as follows:

means

means by which rehabilitation service

"The

groups and service advisory

development

might work together with the as-

committees

of a manager to set standards is sug-

sistance

by Shaw (1987) as follows:

gested

the subject...

"Define

the common wisdom...

Research

local practice...

Assess

the difference...

Reconcile

the guidelines...

Test

the guidelines as standards'.

Adopt

summary, both quality assurance and

In

are intimately linked with the rights of

ethics

human individual and his or her inter-

the

with society. The task of all of us,

dependence

as providers and consumers of services, is to


together to determine the criteria and

work

which will provide at least the

standards

requirements of a meaningful life and

basic

outcome measures to monitor the success

the

interventions which society introduces to

of

these. We are then in a position to

achieve

rationally with those responsible for

negotiate

allocation of funds, in order that these

the

may be met in the most cost-effec-

standards

manner. With the consumers providing

tive

into the factors which will provide

input

with good quality care, service

them

accepting thes responsibility to

providers

this care, and health economists

deliver

note of these principles, it should be

taking

to provide the most cost effective

possible

to deliver good quality care of an ac-

means

standard at anaffordable cost. By

ceptable

of formal monitoring with quality as-

means

programs dedicated to correcting

surance

deficiencies, the requirements of

identified

decision making and social justice

ethical

should be achieved."

Session

Concluding

fifth session featured presentations by

The

specialists who also have respon-

medical

on hospital ethics committees or with

sibilities

decision groups.

health

Menter, M.D., Project Director of the

Robert

Mountain Regional Spinal Cord Injury

Rocky

and Ethics Facilitator for Craig

System

Hospital, showed a videotape of

Rehabilitation

of a Craig case requiring an extraor-

discussion

level of involvement of the ethics com-

dinary

Although it is difficult to summarize the

mittee.

briefly, the case involved a person who

tape

simultaneously become a high-level quad-

had

riplegic and lost his wife through a

vehicular

Deeply depressed, the man wished to

accident.

suicide and .after intensive therapies

commit

by the hospital staff had no effect on

provided

outlook, his suicide was staff-assisted.

his

of the Conference participants ob-

Many

to the handling of the situation. The most

jected

voiced criticisms were that: the tape did

often

indicate that people with high level quad-

not

riplegia had been brought in as role models to

12

the possibilities of a productive life in

illustrate

of the physical limitations, and secondly,

spite

usual period of bereavement for the double-

the

of losing a spouse and physical func-

trauma

seemed not to have been fully taken into

tion,

account.

Adrienne Asch responded that this was

Ms.

the sort of situation which had

exactly

her participation in the New Jersey

prompted

Commission. Her main objection to

Bioethics

handling of the case was that she felt the

the

center personnel in charge had not

rehabilition

the man a vision of a "good life" in spite

offered

his disability. She felt they could have done

of

by bringing other people with similar in-

this

who were living satisfying lives to talk

juries

the patient. Ms. Asch and many par-

with

felt that the tape revealed an attitude

ticipants

too often by the medical community, in-

held

rehabilitation personnel, that life with

cluding

disability was a devalued life and one perhaps

a

worth living.

not

participants felt that the presenting

Other

were being unfairly critiqued for

physicians

handling of an unusually complex situa-

their

Dr. Frederick Abrams reminded the group

tion.

"Ethics is the logic of tragedy. No one can

that,

an ethical dilemma feeling happy."

leave

a period of somewhat heated exchange,

After

Project Director Judy Heumann closed

IDEAS

conference, stating that this first interna-

the

opportunity to bring together a select but

tional

group of specialists on ethical issues

diverse

shown that the need to continue the

had

was crucial and that the topic would

dialogue

high on the agenda for the future.

remain

Proceedings

Symposium

sponsoring organizations agreed to

The

jointly the proceedings of the sym-

publish

posium.

NIDRR grants to the sponsoring or-

The

enabled financial support of

ganizations

speakers from outside the USA. The

several

was also utilized to showcase two

symposium

travel grants awarded by the or-

research

ganizations.


Foreword

into the street and give one man a lecture on morality and another a shilling,

"Go

see which will respect you most."

and

convening of a conference on Ethics and

The

must, at first blush, appear to many

Disability

be an unnecessary endeavor. Of course,

to

recognizes the first claim the disabled

everyone

has on the allocation of resources by

person

for the alleviation of suffering and sus-

society

them at the maximum level of function-

taining

independence. Wrong; the historical

al

is such that President Bush is entirely

evidence

in calling for a "kinder and gentler na-

correct

and this call will need to be heeded by

tion"

in meeting the needs of the disabled

everyone

population.

it is probably overdue to have

Consequently,

a conference to explore "Ethical Issues in

held

and Rehabilitation: How are

Disability

Made?" with the participation of an

Decisions

faculty and attendees. The topics

international

are pertinent to the several and

discussed,

aspects of ethical decisions for, by and

various

the disabled. The papers, when presented

with

as reflected in this volume, demonstrate an

and

13

Samuel Johnson

balance between the theoretical and

interesting

the academic and pragmatic, scholar-

practical,

inquiry vis-a-vis strident advocacy.

ly

collaborating organizations, World In-

The

on Disability, Rehabilitation Internation-

stitute

and World Rehabilitation Fund are to be

al

on giving such a great impetus

congratulated

bringing these issues of vital interest "out of

to

closet." Also, the National Institute for Dis-

the

and Rehabilitation Research, U.S.

ability

of Education is to be commended

Department

its foresight in providing the support for

for

this international exploration of these

initiating

concerns. Hopefully this begin-

cross-cutting

can be moved forward with a simul-

ning

addressing of the need for sound

taneous

constructs as well as the continuing in-

ethical

of the disabled themselves.

volvement

H. Mather, M.D.

John

Medical Director

Chief

U.S. Social Security Administration


2

Section

Papers

Conference

Drawing by Susan Wise, American Medical News, October 24/31, 1986

15


Engineering-The New Eugenics?

Genetic

Medical Attitudes Towards the Quality of Life

Evolving

by Hugh Gregory Gallagher

Part

Engineering-the New

Genetic

Eugenics

is difficult to define, but central to any

Science

of science is surely data that is both

definition

and replicable. The material

measurable

in the name of eugenics was, for the

produced

part, neither measurable nor replicable.

most

defines eugenics as the "science

Webster's

deals with influences that improve the

which

inborn or hereditary qualifies of a

race." The

itself illustrates eugenics failing as a

definition

what constitutes improvement of a race

science:

a value judgment made by the eugenic

was

according to the values and stand-

scientists,

of their place and time. Which personal,

ards

or "racial" qualities are "inborn and

ethnic,

and which are not, was a question

hereditary"

unanswerable in the 1930's and by no

largely

satisfactorily answered today. As for the

means

of race, there is no ethnological term

concept

subject to confusion and disagreement.

more

purported to be a science, but it was

Eugenics

it was a value system.

not:

has been said that the underlying purpose

It

the eugenics movement was to make the

of

safe for white, Anglo-Saxon, Protestant

world

The eugenicists told each other they

gentlemen.

to reduce or eliminate human suffering-

sought

crime, stupidity, ugliness, and inherited

vice,

various selective breeding

disease-through

As part of the process, the eugenicists

policies.

and graded mankind. White

categorized

were better, superior to black people;

people

Europeans were superior to South

North

men were better than women; edu-

Europeans;

people were better than non-educated; fit

cated

were better than disabled people, and so

people

eugenicists sought to "improve the

forth..When

qualities" of other people, what they really

17

to do was to make these people over into

hoped

of themselves. This may or may not

images

been desirable. It may have been

have

and up-lifting and, indeed, often it

charitable

nevertheless, it was patronizing, bigoted,

was;

and by no stretch of the imagina-

ethnocentric,

tion could it be called scientific.

the Third Reich physicians got hold of

When

they made it something else-murder.

eugenics,

have just completed a book on the Aktion

I

euthanasia program by which the

T-4

of Germany in the years of the Third

physicians

participated in a program which killed

Reich

than 300,000 of their patients, all of them

more

citizens, who were permanently dis-

German

or chronically insane. The book, By Trust

abled

was published by Henry Holt Co., Inc.

Betrayed,

in January 1990.

program was called euthanasia, even

The

those killed were neither dying

though

in many cases, were they in pain. In

nor,

cases they were killed against their will

all

and without regard to their legal rights.

euthanasia program was developed by

The

managed by doctors, and the killing-

doctors,

medical therapy, as they called it-was ad-

final

by doctors.

ministered

for the killing was sought in

Justification

doctrine: it would strengthen the race,

eugenic

the gene pool, etc.

improve

program was called euthanasia, even

The

those killed were neither dying nor, in

though

cases, were they in pain. In all cases they

many

killed against their will and without

were

to their legal rights.

regard


eality eugenics was not much more

In

a set of values intended to govern the

than

of social policy. Genetic engineer-

making

is a far more significant endeavor.

ing

advances in man's ability

Extraordinary

understand and to alter the genetic code

to

which the human endowment is passed

by

one generation to the next will make

from

possible, soon enough, for the species to

it

its progeny.

shape

disabled resisted the killing. They heroi-

The

took part in street demonstrations which

cally

put down with brutal efficiency by the

were

Gestapo.

not many, medical personnel helped

Some,

handicapped to escape. Some churchmen

the

out in opposition. In time there

spoke

such a public outcry that Hitler or-

developed

dered the program halted.

the centralized program was

Officially

but the killing went on. Physicians

stopped;

Germany, throughout the war, con-

throughout

to kill such of their patients as they

tinued

They killed by the thousands, but be-

wished.

they acted on their own in secret, there

cause

no accurate figures on the number killed.

are

personnel and the techniques developed in

The

T-4 program were transferred to the con-

the

camps, where they became the in-

centration

struments of the Holocaust.

"children's program" was operated paral-

A

to the adult euthanasia program. Doctors

lel

thousands of disabled neonates over

killed

than a six year period. Some doctors con-

more

to kill their infant patients even after the

tinued

end.

war's

the war many of the very physicians,

After

and hospitals which had been killing

nurses,

patients in the program returned to their

their

practice of treating them. Only a few

prewar

ever prosecuted; fewer still were ever

were

No apologies were ever made by the

punished.

profession or-so far as I can deter-

medical

individual doctors.

mine-by

18

detailed chronological summary of the T-4

A

program is attached to this paper as

euthanasia

1.

Appendix

was it that made these euthanasia kill-

What

possible? There is no one answer to this

ings

yet elusive, question. Here are three con-

large,

factors:

tributing

The German respect for authority is very




it was particularly so in the Third

strong;

The physicians' role was Olympian,

Reich.

This state of affairs encouraged

god-like.

to believe that, indeed, they knew

physicians

was right for their patients, and that

what

had absolute right to direct and control

they

their patients' lives.

did not so much authorize doctors to

Hitler

their patients, as he impressed upon them

kill

whatever the fate they might choose for

that

patients, they, indeed, had no fear of

their

or punishment. Physicians' ac-

persecution

were placed beyond the reach of law.

tions

society in the 1930's, swept by a kind

German

demented idealism, was seeking to perfect

of

Master Race society. Health foods, fresh air,

a

vigorous exercise were promoted as

and

"goods". Youth, health, and sports

universal

glorified; and on the other hand, the

were

and sick were devalued and lumped

disabled

with the other "asocials" as a sort of

together

enemy whose very existence posed,

internal

a threat to the achievement of a

somehow,

society.

healthy

reality eugenics was not much more than

In

set of values intended to govern the making

a

social policy. Genetic engineering is a far

of

significant endeavor. Extraordinary ad-

more

in man's ability to understand and to

vances

the genetic code by which the human en-

alter

is passed from one generation to the

dowment

will make it possible, soon enough, for the

next

to shape its progeny. It will become

species

to stamp out genetically passed dis-

possible

and to genetically fashion cures for virus

ease

microbe caused disease. It is also conceiv-

and

that intelligence, body strength and skill,

able

even good looks may be genetically

and

For the first time it will become

programmed.


to actually produce-as it was not pos-

possible

in Nazi Germany-a Master Race.

sible

knowledge and the power of such

This

gives genetic engineering an impor-

knowledge

far beyond anything attempted under the

tance

of eugenics.

banner

regulations should be equally

Informed

There should be political atten-

applied.

and public discussion of genetic is-

tion

followed by wide participation in

sues,

decision making on genetic policy.

potential benefit to mankind is great. The

The

issues raised are quite as great. Genetic

social

will be expensive. Its benefits will

engineering

be equally available to all. As a friend com-

not

"If there is to be a Master Race, who is

mented,

to carry out the trash?" And, indeed,

going

the concept of a Master Race, there lies

within

the idea of a subsidiary race of drones

implicit

purpose is to serve the masters. This is a

whose

idea for a democracy, whose

dangerous

is capitalism-based.

economy

is quite possible that the r.ch will indulge

It

in what might be called boutique

themselves

ordering "designer" model

genetics-special

the poor will be unable to afford

progeny-while

from genetic diseases or treatment

protection

expensive patented genetically en-

with

drug therapies.

gineered

therapies, again, promise great benefit,

Such

concomitant with this comes the danger of

but

accidents-accidents such as the inad-

dreadful

creation of an untreatable disease or an

vertent

organism.

uncontrollable

genetic engineering presents

Clearly,

government-all governments-with a

chal-

lenge.

German euthanasia experience during

The

Third Reich demonstrated that it is unwise

the

the extreme to exempt the members of a

in

profession-from responsibility

profession-any

their actions. When the doctors were given

for

19

understand they might kill whom they

to

without fear of prosecution or punish-

wished

given our understanding of human na-

ment,

it is perhaps not surprising that many

ture,

went out and did so. The additional

promptly

that doctors were allowed to operate in

fact

away from the cleansing sunlight of

privacy,

exposure, further sealed the fate of many

public

of chronic patients.

thousands

recent decades, Americans have become

In

aware of the wide range of ecologi-

increasingly

hazards produced by industrial society. Dis-

cal

such as Chernobyl, Bhopal, potential

asters

such as Three Mile Island and Rocky

disasters

right here in Denver, underscore the point

Flats

and over again that it is unwise to expect

over

interests to regulate themselves in the

special

interest. Ralph Nader made that point

public

General Motors; Racher Carson made it

with

Silent Spring; Dr. Frances Kelsey proved it

with

Thalidomide. Today, Ivan Boesky, Frank

with

and "Robin HUD" remind us, all over

Lorenzo,

of the point. In our free society, it is the

again,

of both the government and the citizenry

duty

a series of checks and balances, both

through

and informal, to insist upon the primacy

formal

the public convenience, health, and safety.

of

point is most particularly true in the case

This

genetic engineering. The stakes are high; the

of

mustbe played. It should be played fairly.

game

regulations should be equally ap-

Informed

There should be political attention and

plied.

discussion of genetic issues, followed by

public

participation in decision making on

wide

policy.

genetic

cannot be left to the doctors or the scientists.

It

Kennedy was quoted, after the Bay of

President

as saying that, "Daddy always warned me

Pigs,

to put my trust in experts." Experts are good

not

what they are expert in. They are no good at

at

at integrating their efforts within the larger

all

of the public weal, nor can they be

context

to evaluate in any dispassionate or im-

trusted

manner the risks involved or the

partial

required by their work. If the Third

safeguards

experience of fifty years ago teaches us

Reich

it is that doctors are not good at social

anything,

policy.


Relevance of the Third Reich Ex-

The

to the Disability Rights Is-

perience

of Today

sues

are other situations in which lessons

There

parallels drawn from the German ex-

and

might be applied. Following is a dis-

perience

of four such areas of concern: disabled

cussion

prosthesis and orthotics, behavioral

neonates,

determinism, and AIDS.

Issues Concerning Disabled

A.

Neonates

to children is universal. Child abuse

Cruelty

infanticide have been practiced, one way

and

another, at one time or another, everywhere

or

in every society. Germany had no monopo-

and

ly.

the United States in recent years there have

In

several well publicized cases in which

been

disabled babies were starved to death by

young

of their physicians, and a good many

order

cases which were not so publicized.

more

most famous case was that of Baby Doe,

The

infant born with Down's Syndrome, a disor-

an

of the chromosomes leading to mental

der

and a malformed esophagus. It was

retardation

possible to determine in infancy whether

not

baby would grow up to be slightly or

the

retarded. It was certain, though, that

seriously

baby would not grow up at all, unless he

the

immediate surgery to correct the

had

problem so that he could eat. This

esophagus

is not considered major and has a

operation

success rate. Baby Doe was unlucky.

85-90%

physician and his parents decided not to

His

In spite of valid offers of adoption, the

operate.

ruled for the parents, and Baby Doe was

courts

to death. His physician had testified to

starved

court, "Some of these children...are mere

the

These children are quite incapable of

blobs...

us what they feel, and what they sense,

telling

so on."

and

lesser-known case involved the Doctors

A

Duff and A.G.M. Campbell of Yale-

Raymond

New Haven Hospital. These doctors in the

20

two doctors over a 30 month period

These

the deaths of 47 of their patients

oversaw

"selective non-treatment." They

from

"If working out these dilem-

concluded,

in ways such as we suggest is in

mas

of the law, we believe the law

violation

should be changed."

wrote widely in the professional jour-

1970's

New England Journal of Medicine,

nals-the

the Journal of Medical Ethics-about

Pediatrics,

work with disabled children, both the

their

impaired and borderline cases such as

severely

bifida, Down's Syndrome, and physical

spina

It was their work which spoke

deformities.

of "death as a management option."

openly

practiced something they called "selective

They

and the criteria they used in-

non-treatment/'

estimates of the child's ability to love

volved

be loved, the concern of the parents for

and

child, and its chances of institutionaliza-

their

These two doctors over a 30 month period

tion.

the deaths of 47 of their patients from

oversaw

non-treatment." They concluded, "If

"selective

out these dilemmas in ways such as

working

suggest is in violation of the law, we believe

we

law should be changed."

the

1977 through 1982, doctors at the

From

of Oklahoma Health Services Center

University

Tulsa carried out what they thought was a

at

experiment. It was not, of course, so

novel

Doctors Richard Gross, Alan Cox, and

novel.

Pollay published the results of their

Michale

"Early Management and Decision

experiment

for the Treatment of Myelomenin-

Making

in the October 1983 issue of Pediatrics,

gocele"

journal of the American Academy of

the

They explained that the subjects of

Pediatrics.

experiment were newly born infants with

their

bifida. Persons born with this condition

spina

corrective surgery to the spine and the

require

of a device called a shunt to drain

installation

fluid from the brain. The surgical techni-

spinal

are not major, but without them the per-

ques

will die. Persons with spina bifida are apt

sons

experience further health problems. In later

to


eugenics is now a taboo subject,

Although

of the assumptions of eugenics can

many

found in the biological determinism of

be

This holds that deviance

sociobiology.

a "scientific" norm is ipso facto an

from

which requires-or at the least

abnormality

suggests-medical treatment.

some must use bracing when walking and

life,

will suffer decreased intellectual develop-

some

This cannot be determined with certainty

ment.

infancy.

in

The Tulsa doctors, making use of a

mathe-

formula devised by pediatric surgeon

matical

Shaw, undertook to decide which of

Anthony

spina bifida babies under their care should

the

the life-giving surgery and which should

have

not.

were not told about the formula, nor

Parents

the evaluative procedure. They were

about

told by the child's physician that

simply

was advised-or was not. They were

surgery

this advice was a medical judgment.

assured

were told nothing of "quality of life" es-

They

timates.

the viewpoint of the authors of the

From

the experiment was a great success. All

report,

of the patients who had received "active

36

treatment" were alive and doing well.

vigorous

24 who, with their parents uninformed con-

All

had been denied treatment, died. As the

sent,

put it, 'q"ne 'untreated survivor' has not

article

a significant problem in our experience."

been

died as scheduled. In commenting on the

They

case, civil rights attorney Martin Gerry,

Tulsa

with the Department of Health,

formerly

and Welfare, said 'q/Vhat you have

Education

here is a conspircy to commit murder."

judgment is, no doubt, a harsh one: the

This

professionals at Tulsa were, no doubt,

medical

motivated. Nevertheless, the results of

well

they were doing were the same as the

what

obtained by the German doctors who

results

in the Children's Program.

participated

21

doctors, who felt that Baby Doe's future

The

as a person with spina bifida was not worth

life

were basing their opinion upon their

living,

appraisal-as able-bodied people-of the

own

of life of a disabled person. There are

quality

people with spina bifida who feel their

many

are very much worth living.

lives

the physicians of Tulsa who

Similarly,

an economic formula to determine

developed

disabled babies should be given active

which

to live and which should not,

assistance

that only the well-to-do would be able

believed

supply the care and attention these babies

to

need to achieve a life worth living. This

would

the view of well-to-do physicians. There

was

many disabled people who were raised

are

under poverty conditions by a

loving family

have a contrary viewpoint.

who

The Use of Orthotics for Cosmetic

B.

Purposes

has been observed that much of rehabilita-

It

medicine today is devoted to cosmetics-the

tive

to give the disabled persons the ap-

effort

of being "whole" again. This involves

pearance

devices as lifelike looking artificial limbs,

such

braces for paralyzed legs. A major ex-

hidden

of this is found in the large amount of

ample

and money that has been invested in the

time

with bracing, harnesses, electrodes,

attempt,

and such, to give the paraplegic

computers,

the semblance of being able to walk

person

upon his or her own legs. Too often such

again

efforts represent the doctor's

exaggerated

to camouflage what he cannot endure.

desire

sometimes, this effort only serves to rein-

And

the newly disabled person's fear that he is

force

shamefully flawed.

somehow

the euthanasia program of the Third

Like

physicians, such behavior has more to do

Reich

the frustration experienced by the doctor

with

his own impotency (as well as his cultural

over

than it does with the relief or improved

bias),

of the patient.

well-being

The Use of Medicine to Alter Behavior

C.

eugenics is now a taboo subject,

Although

many of the assumptions of eugenics can be


Nazi Germany, the high economic cost

In

treating and caring for incurable, dis-

of

people was taught in the schools and

abled

up repeatedly in the media.

brought

in the biological determinism of

found

This holds that deviance from a

sociobiology.

norm is ipso facto an abnormality

"scientific"

requires-or at the least suggests-medical

which

treatment.

is common practice today for physicians to

It

their medical knowledge and techniques to

use

behavior perceived by the community-at-

alter

to be deviant-"hyperactive" children are

large

to have a disease, Minimal Brain Dysfunc-

said

and placed on drug .therapy; lobotomy

tion,

was used in the 1940's and 50's to halt

surgery

or violent behavior; the drug an-

aggressive

is used to prevent alcoholics from drink-

tabuse

aversion therapy, oftentimes unpleasant

ing;

painful, is used in an attempt to alter sexual

and

deemed to be aberrant.

practices

of this is, of course, the use of medicine

All

social purposes. Physicians are applying

for

skills, not to heal disease, but to alter

their

This is precisely what Third Reich

behavior.

were about in the 1930's and 40's. They

doctors

altering people in conformity to the cul-

were

standards of the day. The issue is compli-

tural

it may, indeed, be useful, even beneficial

cated;

social terms, to alter socially deviant or ab-

in

behavior; but the practice is open to

normal

abuse.

Acquired Immune Deficiency

D.

(AIDS)

Syndrome

presents society with a myriad of dif-

AIDS

issues. There are, perhaps, three major

ficult

of problems: medical, economic, and

clusters

The Third Reich experience in the thirties

social.

forties illuminates some of the hazards in

and

of these areas.

each

Medical Analogies

1.

chronic disability, AIDS is-at least at

Like

a cure. AIDS, like disability,

present-without

the attending physician extreme frustra-

causes

22

The patient is "recalcitrant," as the Nazi

tion.

used to say, and refuses to respond

physicians

treatment. Even more frustrating for the

to

is the fact that all AIDS patients die.

physician

an age of miraculous medical technology,

In

forces the physician to confront once

AIDS

the impotence he feels at being unable to

again

heal.

the German experience has shown, this

As

be a dangerous situation for the patient.

can

such patients were eliminated by their

There,

In the U.S. they may be turned away,

doctors.

or given maintenance (or even less)

ignored,

treatment.

is, perhaps, not surprising that according

It

the New York Times, increasing numbers of

to

doctors are 'nelping" their terminal-

American

ill AIDS patients to die. "The public would

ly

surprised at how helpful doctors are willing

be

be," Marty Jones, a Los Angeles advocate of

to

assisted suicide is quoted as saying in a

doctor

page story.

front

Economic Analogies

2.

Nazi Germany, the high economic cost of

In

and caring for incurable, disabled

treating

was taught in the schools and brought

people

repeatedly in the media. In medical society

up

it was argued that by providing

discussions

people with "final medical assistance"

disabled

killing them), facilities and funds would be

(i.e.,

which could better be applied to the

released

of the health problems of the able-

treatment

thus improving the health and well-

bodied,

of society as a whole. Nazi medicine

being

the health of the Volk, the German

believed

as a whole, to be more important than

people

health of an individual. It was the duty of

the

individual, with the help of the doctor, to

the

himself healthy. If he failed to do so, there

keep

a strong sense that it was his fault; he had

was

failed in his duty to the Volk and to the state.

the U.S., recent years have seen the

In

of something akin to this sort of

development

Lung cancer, heart disease, and such,

thinking.

is said, are caused by the patient's bad habits

it

failure to keep fit. AIDS is brought on by the

or

or drug practices of the victim. From

sexual


will be pressures, as there were in

There

Germany, to divert funds and atten-

Nazi

away from the "inevitably" dying

tion

to the more socially beneficent

"asocials"

less medically frustrating) treatment

(and

those who may respond to treatment.

of

it is an easy jump to the belief that if a

this,

gets AIDS, it is his own fault.

person

far, the response to the AIDS epidemic in

So

U.S. has been neither primarily economics-

the

nor blame oriented. In most places,

based,

have received adequate care and treat-

patients

The costs of this have placed extraordi-

ment.

burdens upon Medicare, Medicaid, some

nary

companies, federal, state and local

insurance

and, of course, individuals and

governments,

families. However, the epidemic has just

their

Many, many more thousands of the in-

begun.

will soon become active cases, needing

fected

This will place an increasing strain

treatment.

funds and facilities already overbur-

upon

The cost of maintaining a major research

dened.

into the cause and cure of AIDS has

program

a federal commitment of the scale of the

become

Project in World War II. Already

Manhattan

have been substantial complaints from

there

advocates of research on other diseases and

the

of research who daim that funds are being

areas

from their projects to AIDS research.

diverted

AIDS epidemic raises genuine economic

The

which society and its governments must

issues

resolve.

will be pressures, as there were in Nazi

There

to divert funds and attention away

Germany,

the "inevitably" dying "asocials" to the

from

socially beneficent (and less medically

more

treatment of those who may

frustrating)

to treatment. These pressures are

respond

by the belief-true, often enough-

strengthened

the AIDS victims have brought their dis-

that

upon themselves by behavior considered

ease

many to be immoral.

by

Social Analogies

3.

of the disease may be translated into a

Fear

23

of the carrier of the disease. In Cuba, per-

fear

who test HIV positive are forcibly interned

sons

a camp away from society, just as asocials

in

committed no other crime were interned

who

Germany. In the Soviet Union, AIDS carriers

in

been jailed. Nothing like that is likely in

have

the U.S., but there exists a

significant subcur-

of prejudice and fear towards such people.

rent

patients, like the disabled, are dis-

AIDS

against minorities. U.S. public at-

criminated

towards "perverts" and "junkies" are

titudes

unlike the Nazi attitudes towards the dis-

not

insane, and "asocials" in the 1930's. With

abled,

it is all too easy to blame the victim-par-

AIDS

as he is a member of a discriminated

ticularly

minority.

against

analogies with Germany are both real

The

dangerous. They are enough to make an

and

uneasy.

observer

Appendix

Nazi T-4 Aktion Euthanasia

The

An Outline

Program:

of program

Origins

German eugenicists and Social Dar-

A.

from turn of century advocate

winists

of the Volk," through

"strengthening

breeding, internment of retarded

restricted

asocial persons, focusing medical atten-

and

upon improving the well-being of the

tion

with no more than maintenance

healthy

for the disabled and the chronically

care

insane.

Hitler's personal admiration of

Bo

He said in Mein Kampf: The state

eugenics:

sterilize "those who are visibly sick

must

hereditarily tainted."

and

Physician courts rule on who shall be

C.

castrated, or aborted. "Not only

sterilized,

home but abroad voices are heard which

at

the German Reich" on its

congratulate

program, bragged a German

sterilization

psychiatrist.

Widespread expansion of sterilization

D.

to persons with nongenetic condi-

program

tions-such as amputees, drunks, and "per-


unofficial punitive action and the

verts';

cynical attitude of the public.

resultant

Creation of program

II.

Hitler orders the euthanasia program

A.

under cover of war September 1, 1939

Program is kept secret to assuage fami-

B.

feelings of responsibility and guilt and to

ly

unrest among the patients.

avoid

Program is conceived as a boon of

C.

not available to Jews or other

citizenship,

nationals.

non-German

Program is conceived by doctors, ad-

D.

by doctors. It had been discussed

ministered

medical cirdes since at least 1935. Al-

in

secret, most doctors of Germany are

though

of its purpose and participate in its

aware

procedures.

Program is well organized: two ad-

E.

agencies are established and a

ministrative

company, the Gemeinnut-

transportation

Krankentransportgruppe, is created to

zige

the patients. Six Euthanasia Centers

carry

set up across Germany.

are

Forms and procedures are prepared;

F.

are developed:

criteria

A form in triplicate must be filled

1.

by an attending physician for each

out

in a longterm care facility.

patient

A review committee of three doc-

2.

passes upon each case-each doctor

tors

his independent recommenda-

makes

the committee as a whole resolves

tion;

of opinion.

differences

The recommendations of the com-

3.

are reviewed and approved by

mittee

group of distinguished medi-

selected

university professors.

cal

The files of those patients chosen for

4.

medical assistance" are marked

"final

with a red cross.

Operation of program

III.

Hospitals are notified that selected

A.

are to be transferred to another

patients

facility.

24

Patients are transported to Euthanasia

B.

and killed, usually within twenty-

Centers

hours of arrival. Initially, they are

four

with injections of morphine-

killed

or luminal, but experience

hydrochloral

to show that death by CO is more

seems

and by personal order of Hitler,

humane;

method is adopted.

this

Remains are cremated, placed in an

C.

and shipped to patient's family for

urn,

A letter of condolence and sympathy

burial.

sent to family by state officials.

is

System is plagued by foul-ups. Ex-

D.

Two urns for a single loved one are

amples:

to a family. Letter says patient died

shipped

appendicitis when his appendix had been

of

ten years previously.

removed

Program begins small, but grows

E.

as it becomes more efficient. Soon,

quickly

of the six Euthanasia Centers handles

each

seventy-five patients a day. Selection

over

becomes no more than a

process

formality.

bureaucratic

End of official program

IV.

Existence of program becomes com-

A.

knowledge. Much alarmed gossip: old

mon

become afraid they will be next.

people

know and joke about the gassing.

Children

in Euthanasia Centers are shunned

Workers

local populace.

by

The disabled fight for their lives; run

B.

seek help from medical staff and from

away;

families. "Wild scenes" of public un-

their

occur. Townsfolk support patients,

rest

with police, shout antigovernment

fight

Entire Bavarian town unites in ef-

slogans.

to save patients. Himmler and Bormann

fort

to prevent such incidents.

seek

Church leaders openly protest pro-

C.

on moral grounds: Cardinal yon

gram

provides heroic leadership in opposi-

Galen

to the killing. Army leaders complain

tion

of it for reasons of morale.

Hitler, bogging down in Russian Cam-

D.

concerned by church protests and

paign,

needing support of a united society, cancels


Vo

at the end of 1941. This is only

program

case of Hitler responding to church

known

pressure.

"Children's Section"

The

A program to terminate severely

A.

or retarded children was created

deformed

to, but not connected with, the

parallel

program.

euthanasia

Program began after Hirer took per-

B.

interest in a particular case.

sonal

Program was not ended by Hitler's

C.

order, but conrinued-in some hospitals

1941

well into 1945.

actually

All hospitals were required to report

D.

babies. Once decision had been

deformed

the children were killed, usually by

made,

Some hospitals simply withheld

injection.

until death.

nourishment

Parents were not informed of decision,

E.

were allowed to visit their infants before

but

were destroyed.

they

Program commenced with infants, ex-

F.

25

to include children as old as two,

panded

five, and by the end of the war, seven-

then

teen.

VI. Runaway euthanasia

After Hitler's 1941 order ending the

A.

the euanasia physicians were

program,

to the concentration camps.

transferred

The physicians brought their equip-

B.

and their competence for killing and

ment

of large number of people. Initial-

disposing

they killed those camp inmates who were

ly,

disabled to work.

too

Teams of these physicians then took to

C.

the countryside of Nazi occupied

roaming

looking for disabled and tuber-

territory,

"useless eaters," whom they also

cular

killed.

Soon, the full scale Holocaust was un-

D.

derway.

In latter days of war, during the height

E.

the Allied blitz of German ciries, institu-

of

disabled people were killed to

tionalized

beds for the newly wounded.

provide


Description of the Decision-Making Project

Daryl Evans, Ph.D., Project Director, The Decision Making Project,

by

Professor, University of Kansas

Associate

Decision-Making Project is a five-year

The

designed to investigate the manner in

inquiry

treatment/nontreatment decisions are

which

in so-called "Baby Doe" cases. The study

made

on how persons decide whether or not

focuses

allow life-saving surgical intervention on

to

born with a life-threatening medical

children

(spina bifida cystica), which, if treated

disorder

often leaves the infants with

successfully,

disabilities. The work looks not only at

severe

process of decision-making, but at the

the

processes parents and professionals ex-

various

if a successful treatment decision is

perience

processes focusing on parental

made--these

to various transition in their and

adjustment

children's lives, and, the interactions be-

their

families and health care professionals.

tween

the five years of the study (1984-

During

five respondent cohorts have been

1989),

1) a group of newlyweds with whom

studied:

simulation is conducted in which they are told

a

have just given birth to a child with spina

they

and are asked to deliberate whether to

bifida,

treatment or opt for nontreatment; 2)

authorize

parents who have made such decisions,

actual

recount the deliberative process; 3)

who

known to have a great deal of ex-

physicians

in such decisions, who discuss spina

perience

and a wide range of other disorders that

bifida

difficult medical and ethical problems;

present

nurses known to have extensive experience

4)

participating in such decisions, who give

in

of the deliberative process; and 5) per-

accounts

with spina bifida, who discuss their

sons

regarding the "Baby Doe" issue and

opinions

particulars of medical intervention

the

about them that they remember. The

decisions

Project is completing its fifth

Decision-Making

final year.

and

study uses a grounded approach in

The

respondent-emergent issues of im-

developing

through pilot studies with each

portance

27

Further, the project investigates 26

cohort.

research issues during each

predetermined

of the study. These include: 1) child,

year

and family quality of life issues; 2) The

parent,

associated with treatment/nontreat-

emotions

deliberative processes and adaptation to

ment

3) the nature of personal, legal, and

transitions;

values and standards employed in the

social

and adaptive processes; 4) the role

deliberative

the aesthetics of disability in affecting

of

and adaptations; 5) considera-

deliberations

of the disabled person's potential for con-

tions

to family and social environments; 6)

tributing

of influence, support, and information

sources

the deliberative and adaptive processes; 8)

in

adequacy and grasp of medical and non-

the

information by all participants in the

medical

and adaptive processes; 9) the ef-

deliberative

of previous knowledge of persons with

fects

on the decisions; 10) professional

disabilities

in the presentation of information and

biases

for action; 11) the crucial or decid-

alternatives

factors in treatment/nontreatment

ing

12) where the final responsibility for

decisions;

decision lies; and 13) the quality of health

the

for persons with disabilities.

care

study focuses on how persons decide

The

or not to allow life-saving surgi-

whether

intervention on children born with a

cal

medical disorder (spina

life-threatening

cystica), which, if treated success-

bifida

often leaves the infants with severe

fully,

disabilities.

is gathered through interviews

Information

last an average of four hours and have

which

conducted in five states with 475 persons

been

date. The same essential procedures are fol-

to

lowed for all cohorts, with minor variations to


for certain cohort differences. There are

account

least three segments to the interview: 1)

at

reactions to a very general question

respondent

the treatment/nontreatment decision; 2)

about

responses to open-ended, but focused

subject

relating to the research issues; and 3)

questions

completion of a questionnaire relat-

respondent

to the research issues. The interviews are

ing

to flow from largely phenomenologi-

designed

responses to more researcher-circumscribed

cal

and to provide both qualitative and

questions,

data. All verbal material is tape-

quantitative

transcribed, coded, entered into an

recorded,

retrieval system, and content-

information

All questionnaire data are subjected

analyzed.

statistical analysis. Both intercohort and in-

to

comparisons typify analysis.

tracohort

of findings was begun late in

Dissemination

when comparisons of the data provided

1988,

the first three respondent cohorts could be

by

made. In addition to publishing scholarly work,

28

dissemination will include didactic

this

for parents, professionals, and other

materials

directly affected by such decisions. In

persons

case of the latter, for example, The Decision-

the

Project is producing a series of training

Making

and video tapes for physicians and nur-

audio

to help maximize sensitive and effective

ses

among all parties to such

communication

a parallel set of materials is being

decisions;

for parents. The findings of the re-

prepared

also are designed to help policy makers

search

legislation and policy about "Baby

fashion

types of decisions and to suggest formula-

Doe"

for needed services and improvements in

tions

those services that exist.

Decision-Making Project is being ex-

The

a pilot study--to include an

pandedmthrough

of the decision-making processes

investigation

treatment abatement decisions about aged

in

That study was completed in

populations.

of 1989.

March


and Nontreatment Decisions with Respect

Treatment

Extremely Premature, Very Low Birthweight

to

Infants (500-750g)

by Ernld Young, Ph.D., Chairman, Ethics Committee, Stanford University Hospital

data about outcomes and

Statistical

of treatment for infants 24-26

cost

gestational age and weighing

weeks

500-750 grams.

between

the past ten years and more,

For

have been slowly yet surely

neonatologists

back the frontiers of viability for ex-

pushing

premature, very low birthweight in-

tremely

Equally steadily, the outcome data for

fants.

infants (between 500 and 750 grams) have

these

improving. The most recent study of fol-

been

results of intensive care for 68 infants

low-up

in our own unit at Stanford (Stevenson, et.

done

1988) yielded the following statistics: the

al.,

survival rate for these infants was 35%;

overall

those infants who had been successfully

for

in the delivery room and were then

resuscitated

to the intensive care nursery, the sur-

admitted

rate was 50%; 9% of the survivors were

vival

handicapped; and 36% had remedi-

severely

disabilities at two years of age. This par-

able

study did not address the question of

ficular

what were the costs of treating these infants.

the one hand, there is the possibility

On

by treating vigorously the particular

that

before them they will be doing

infant

to three primary moral prin-

violence

nonmaleficence,

ciplesubeneficence,

justice.

and

years earlier, Maureen Hack, et. al.,

Two

data from six different centers (Hack,

presented

al., 1986). In this study, the mean survival

et.

was 33.5%; of those infants surviving, an

rate

of 31% were left with significant

average

handicaps. The cost of af-

neurodevelopmental

29

neonatal intensive care for these infants

fording

presented: "The mean length of stay

was

the survivors was 137 days (range, 71 to

among

and the mean cost of care per infant was

221),

$158,800 (range, $72,110 to

$524,110)." These

require adjustment for inflation and do

figures

in any case, include the long-term, lifelong

not,

of caring for those with residual handicap-

costs

disabilities.

ping

in an area

Decision-making

u ncertainty.

of

the team of caregivers, in conjunction

When

the parents of babies in the 500-750 gram

with

are faced with clinical decisions about

range,

or nontreatment, they are inevitably

treatment

with a considerable amount of prog-

presented

uncertainty. There is no way of knowing,

nostic

the outset, whether or not a particular ex-

at

premature, low birthweight infant will

tremely

Should the infant survive, there is no

survive.

of knowing, at the outset whether he or she

way

have impairments, or not. The very tech-

will

that save some lives, often inflict harm

nologies

suffering on other recipients of intensive

and

Statistical data provide us with historical

care.

they provide little prognostic in-

generalities;

about unique individuals.

formation

the inherent uncertainties of the situa-

Given

the caregiving team is caught in a true

tion,

On the one hand, there is the pos-

dilemma.

that by treating vigorously the particular

sibility

before them they will be doing violence to three

infant

moral principles--beneficence, non-

primary

and justice. There are some in-

maleficence,

for whom aggressive, intensive care does

fants

prove to be beneficial. Even worse, it may

not

out to be harmful--inflicting suffering on

turn

infant being treated without producing any

the

benefit. And if the principle

counterbalancing


justice, distributively understood, requires of

of

to be fair in allocating our limited resources,

us

expending anything up to a half a million

then

or more on someone whose survival is

dollars

and whose level of functioning, should he

moot

she survive, will be questionable, may have

or

an injustice to others who more positively

done

have been helped by the same expendi-

could

if these were used preven-

tures--especially

rather than on treating after the fact.

tively

the other hand, there is the possibility that

On

to treat a particular infant vigorously because

failing

concerns about nonmaleficence and justice

of

violate the principle of beneficence. There is

could

the considerable concern that an infant

always

treated vigorously would have survived

not

aggressive therapy, and survived

with

intact. Without aggressive therapy,

reasonably

would have ensued. Do concerns about

death

and distributive justice out-

nonmaleficence

the duty to attempt to benefit in-

weigh

when there is uncertainty at the

dividuals,

about whether or not treatment will

outset

to be beneficial?

prove

is a cruel dilemma. It is one that

This

face constantly in an area of un-

neonatologists

The extremely premature, very low

certainty.

infant inevitably carries the

birthweight

team and the parents alike into a

caregiving

of ambiguity. Here, as is the case in any

zone

moral quandary, the choices may not

genuine

between absolute "rights" and "wrongs" so

be

as between greater and less goods and

much

harms.

or nontreatment

Treatment

the legacy of the

decisions:

Doe Regulations,"

"Baby

this dilemma is the legacy of

Compounding

so-called "Baby Doe Regulations." Al-

the

the regulations themselves were struck

though

by the Supreme Court, the "Child Abuse

down

Neglect" and "Discrimination Against the

and

Statutes, as amended to buttress

Handicapped"

regulations, remain in effect. This legacy of

the

"Baby Doe Regulations" can be viewed both

the

and positively.

negatively

30

who believe that neonatologists do not

Those

have the best interests of their patients

always

heart and are prone to discriminate against

at

on the basis of perceived disabilities--

people

actual or potentialmwill view this

whether

positively. There will be enormous com-

legacy

in the fact that in a world where it is always

fort

against "us," and where they, the medi-

"them"

caregivers are often among "the bad guys"

cal

we, the opponents of child abuse or

while

and of discrimination against disabled

neglect

are "the good guys," we are not left

persons

We can appeal to these Statutes

powerless.

remain in effect to prevent

which

neonatologists from neglecting or

abusing

or from discriminating against people

children

disabilities. We can compel them to treat

with

equally, and with equal vigor--ig-

everyone

the fact, already stated, that vigorous

noring

is in any case going to produce un-

treatment

results when it comes to individual cases.

even

who happen to believe that

Those

are not necessarily any more or

neonatologists

wicked than these rest of mortals and may,

less

this were to be seriously studied, prove to be

if

more compassionate, and more caring

gentler,

most, are likely to view the legacy of the

than

"Baby Doe Regulations" negatively. In

failed

area of inherent uncertainty, where there is

an

room for disagreement between people

surely

good faith about how best to proceed, the

of

Neglect and Abuse" and "Discrimina-

"Child

Against the Handicapped" Statutes im-

tion

bad faith. These statutes suggest that the

pute

proclivity to harm their patients lying

innate

the smiling faces of all neonatologists

behind

to be checked. The way to check this is to

needs

nontreatment decisions as child

redefine

or abuse or as discrimination against

neglect

with disabilities, and then to invoke the

persons

legal remedy.

appropriate

am not suggesting that neonatologists who

I

in bad faith cannot be found, anymore than

act

would argue that there are not clerics who act

I

bad faith. But to regard all neonatologists as

in

abusers of children and as latently

potential

toward persons with disabilities is sure-

callous

ly as grave an error as it is to regard all ordained


to regard all neonatologists as poten-

But

abusers of children and as latently

tial

toward persons with disabilities is

callous

as grave an error as it is to regard

surely

ordained clergy as cut from the same

all

as the Jim Bakkers and Jimmy Swag-

cloth

garts of this world.

as cut from the same cloth as the Jim

clergy

and Jimmy Swaggarts of this world.

Bakkers

this is what the Statutes imply. They indi-

Yet

a mindset in which all neonatologists are

cate

until they can prove themselves in-

guilty

The way to prove innocence is by them

nocent.

vigorously every neonate in the 500-

treating

gram range. This ignores all the evidence

750

available about uncertainty of treat-

currently

outcomes and about the essential

ment

of those who practice the healing

beneficence

in the neonatal intensive care setting.

arts

perspectives on

International

and nontreatment

treatment

with respect to extremely

decisions

very low birthweight

premature,

infants.

1984, a fellowship provided by the World

In

Fund enabled me to do a study

Rehabilitation

decision-making in neonatal intensive care

of

in Britain and Sweden, with particular

units

to the extremely premature, very low

reference

infant. The findings (Young, 1984)

birthweight

surprising in three respects. First, the per

were

incidence of extremely premature, very

capita

birthweight infants in these countries is

low

lower than in the United States.

impressively

seems to be because of the availability, in

This

Britain and Sweden, of good prenatal care

both

all pregnant women and, in Sweden, of the

for

eradication of the socio-economic

virtual

of prematurity: poor nutrition, inade-

causes

quate housing, and a

consequently harassed

Second, the level of lifelong resources

lifestyle.

to persons with disabilities for their

available

and integration into society is

"normalization"

higher than it is in the United

significantly

31

An ironic indicator of this is the fact that

States.

the very time the "Baby Doe Regulations"

at

being enacted, our administration was

were

back on services to persons with dis-

cutting

and funding for the Women, Infants',

abilities

Children Program. Third, in both Britain

and

Sweden the presumption was not to treat

and

infants weighing less than 750

vigorously

unless strong countervailing evidence to

grams,

could be brought forward. In the absence of

treat

evidence, they would be entitled to special

this

(everything short of assisted ventilation),

care

not intensive care (which includes

but

support).

respiratory

several important respects, Nancy K.

In

associate professor of law at Ohio State

Rhoden,

advanced and refined these empiri-

University,

observations (Rhoden, 1986). She delineated

cal

differing national strategies for decision-

three

in the area of uncertainty we are

making

discussing.

presently

characterizes our approach in this

Rhoden

as one in which we treat vigorously all

country

premature, very low birthweight in-

extremely

until we are virtually certain that they are

fants,

not being benefited or are actually being

either

Only then are we willing to stop. The

harmed.

of erring on the side of life are: we save

effects

who would otherwise have died; we do

some

harm to and inflict long-term suffer-

immediate

on those who survive; and we expend an

ing

amount of money on neonatal inten-

enormous

care (the latest estimates are $2.6 billion

sive

annually).

the opposite end of the spectrum is the

At

approach of withholding treatment

Swedish

infants for whom the prognosis is uncer-

from

at best, or grim, at worst. Rhoden calls this

tain,

"statistical prognostic strategy." The net

the

is that some are lost who with vigorous

effect

might have been saved; that the

treatment

of immediate harm and long-term suf-

amount

is minimized; and that limited societal

fering

are conservedmto be deployed in

resources

other, more cost-effective areas.

these two extremes is the British

Between

treatment and then re-

approachmstarting


an area of inherent uncertainty of

in

people of good faith will proceed

outcomes,

in good conscience making dif-

differently,

decisions.

ferent

this decision regularly on the basis

evaluating

clinical indications of ultimate death or

of

brain damage. Rhoden describes this as

severe

"individualized prognostic strategy." The

the

of this strategy is to salvage more in-

effect

per capita than are salvaged in

dividuals

but fewer than we rescue in the United

Sweden,

to minimize both immediate harm and

States;

suffering; and to conserve finite

long-term

to an extent less than is the case in

resources

and greater than is true in the United

Sweden

States.

these national differences are at-

Doubtless,

to various factors: socialized

tributable

in Sweden, national health care in

medicine

and the mixed array of public and

Britain,

funding mechanisms in the United

private

religious differences (we appear to have

States;

more vigorous "pro-life" lobby in this country

a

is evident in either Sweden or Britain); and

than

substantially larger role fear of legal liability

the

in our society than in either Britain or

plays

Nonetheless, they underline the

Sweden.

point of this paper: that in an area of

central

uncertainty of outcomes, people of

inherent

faith will proceed differently, in good

good

conscience making different decisions.

a recent M.Sc. thesis, Steven Harris

In

treatment limitation at Stanford (Har-

describes

1989) in terms similar to what Rhoden calls

ris,

"individualized prognostic strategy."

the

neonatologists state that they at-

"Stanford

resuscitation for all critically ill new-

tempt

and hasten them to the ICN But after

borns

intensive care, the staff, with the par-

initiating

of the parents, appears prepared to

ticipation

aggressive therapy and redirect care to

curtail

measures that provide comfort for the infant."

Conclusions

are not so much ending-points as start-

These

ing-points for an ongoing discussion (within

32

conference) within our society.

this

we have to question our American lack

First,

interest in prevention (and rehabilitation)

of

our infatuation with heroic, high-tech-

versus

after-the-fact intervention. In so many

nology,

we appear to be more concerned to catch

areas,

horse once it has bolted from the barn than

the

close the barn door in the first instance.

to

not addressing the root causes of

Would

of prenatal care, poor nutri-

prematurity--lack

in pregnant women, homelessness, and

tion

or alcohol addiction--be more cost-effec-

drug

than merely treating premature, very low

tive

babies once they arrive in our

birthweight

neonatal intensive care units?

we have to advance toward a more

Second,

view of stopping aggressive therapy,

rational

having started, when it is clear that the

once

of beneficence is not being Served and

principle

of nonmaleficence is being breached..In part,

that

is beyond the control of any of us, for fear

this

litigation causes medicine to be practiced

of

defensively in this country. Until ar-

overly

or some other alternative way of set-

bitration

legitimate grievances can be substituted

fling

malpractice litigation, stopping once we

for

started is going to be very much more

have

than not starting in the first place. But

difficult

large part the "Child Abuse and Neglect"

in

the "Discrimination Against the Hand-

and

Statutes, as amended to bolster the

icapped"

Doe .Regulations" serve to inhibit

"Baby

to stop once .treatment has been in-

decisions

when beneficence is not possible,

itiated-even

is being breached, and justice is

nonmaleficence

being served. Two Stanford Neonatologists

not

this point succinctly: "The relentless ap-

make

of intensive care to those neonates

plication

chances of survival are judged to be, '1

whose

1000' or, 'without precedent' is in conflict

in

the charge of alleviating suffering for the

with

of neonates. In such a setting, it also

majority

difficult to justify the tremendous

becomes

that are incurred. If we fail to introduce

costs

measure of reasoned restraint .into our

some

processes, prolonged suffer-

decision-making

and large hospital bills will continue to

ing

accompany the uncertainty of our prognosis for


substantial number of.very low birthweight

a

(Fischer and Stevenson, 1987)

infants."

thing is certain: when resources be-

One

scarce, or are perceived to be scarce,

come

are relatively scarce, concerns about

or

justice increase in intensity

distributive,

the point is reached when they can

until

longer be ignored.

no

we have to confront the inescapable

Third,

that ours is an era of shrinking resources,

fact

that setting limits is thus inevitable. Al-

and

such respected writers on ethics as

ready,

Callahan (1987) and Norman Daniels

Daniel

are advocating a rationing of heroic, in-

(1988)

care for the elderly. A recent Brookings

tensive

study .(1989) entitled, "Rationing of

Institution

Care for the Critically Ill," recom-

Medical

tightening admission standards to adult

mends

It seems to be only a matter of time before

ICUs.

threshold of eligibility for very costly, high-

the

intensive care for the very low

technology

extremely premature infant will

birthweight,

raised. The only question is, Who will do this

be

Medicare? Private sector insurers? Or the

first?

intensive care team itself? One thing is

neonatal

when resources become scarce, or are

certain:

to be scarce, or are relatively scarce,

perceived

about distributive justice increase in

concerns

until the point is reached when they

intensity

no longer be ignored.

can

leads to a fourth, and final, conclusion:

This

a society, we need to redefine the nature and

as

of autonomy in the context of medi-

significance

care. Surely it does not give to the patient or,

cal

the case of the neonate, the patient's sur-

in

the right to practice medicine without a

rogate,

involved in the technical

licensebecoming

that caregivers alone are properly

decisions

to make. Surely autonomy is inherently

able

by considerations affecting the com-

limited

none of us, living in society, is free to

munity:

traffic regulations or evade taxes for

violate

And surely autonomy requires that

example.

relationship between caregivers and

the

33

be collaborative or mutualistic, with

parents

helping to define the overall goals of

parents

but not necessarily becoming in-

treatment

in medical decision-making. As inap-

volved

as is benignly-intended paternalism

propriate

the part of physicians in our time is un-

on

autocracy on the part of the recipients

bounded

medical care--in asserting that either more

of

less be done for the infant than seems to be

or

indicated. Both extremes reduce

medically

the parents or the professional caregivers

either

subservience. But once physicians and parents,

to

have agreed to a strategy for treatment or

together,

this ought not to be subject to ar-

nontreatment,

veto by interested third parties--whether

bitrary

lobbyists or federal bureaucrats. If this is not

pro-life

it is difficult to see how we can both

conceded,

and respect the limits of the principle of

honor

autonomy.

References

K. Stevenson, M.D., Kathy R. Petersen,

David

Barbara L. Yates, B.S., William E. Benitz,

M.A.,

and Rena Gale, M.D., "Outcome of

M.D.,

with Birth Weights of Less than 801

Neonates

Journal ofPerinatology, Vol. VIII, No. 2,

Grams,"

pages 82-87.

1988,

Hack, M.B., Ch.B., and Avroy A.

Maureen

M.B., F.R.C.P. (E.), D.C.H., "Special

Fanaroff,

Changes in the Delivery Room Care of

Report:

Extremely Small Infant (g): Effects on Mor-

the

and Outcome," New England Journal of

bidity

vol. 314, no: 10, March 6, 1986, pages

Medicine,

660-664.

W.D. Young, "Societal Provision for the

Ernl6

Needs of the Disabled in Britain

Long-Term

and Sweden Relative to

Decision-Making in

Intensive Care Units," New York:

Neonatal

Rehabilitation Fund, International Ex-

World

of Experts and Information in

change

1984.

Rehabilitation,

K. Rhoden, "Treating Baby Doe: The

Nancy

of Uncertainty," Hastings Center Report,

Ethics

vol. 16, no. 4, August 1986, pages 34-42.

Jacob Harris, "Limiting and Discon-

Stephen

Aggressive Therapies in Stanford's In-

tinuing

tensive Care Nursery," Master of Science


Stanford University, January, 1989.

Thesis,

F. Fischer, M.D. and David K. Steven-

Allen

M.D., "The Consequences of Uncertainty:

son,

Empirical Approach to Medical Decision

An

in Neonatal Intensive Care," JAMA,

Making

9, 1987, Vol. 258, No. 14, pp. 1929-31.

October

Callahan, Setting Limits: Medical Goals

Daniel

an Aging Society, New York: Simon and

in

34

1987.

Schuster,

Daniels, Am I My Parents" Keeper? An

Norman

on Justice Between the Young and the Old,

Essay

York: Oxford University Press, 1988.

New

by Martin A. Strosberg, I. Alan Fein,

Edited

James D. Carroll, Rationing of Medical Care

and

the Critically Ill, Washington, D.C.: The

for

Institution, 1989.

Brookings


Allocation of Resources and Distributive Justice

by John H. Mather, M.D., Chief Medical Director, U.S. Social Security Administration*

years ago the notion of "protecting

Several

medical commons"(1) was described where

the

is compared to a village green upon

medicine

the villagers allow their cattle to graze in

which

to the available pasture. If a villager

proportion

to put an extra cow to forage on the com-

were

simply allowing that just one more would

mon,

damage the pasture, but should all the vil-

not

do the same thing, then the pasture

lagers

be destroyed and the herd would die.

would

metaphor is directly pertinent to the evi-

The

disparity between the costs of providing

dent

care and the ability of economic sys-

medical

to pay for them. The demands of medical

tems

and providers seem to be increas-

consumers

at odds with the willingness of govern-

ingly

or health insurers to pay the bill. The

ments

of a mounting tension has been the

evidence

dissatisfaction of providers as each

increased

for a larger share of limited resources:

lobbies

versus neonatal intensive care, AIDS

geriatrics

preventive medicine, physical

versus

versus transplant surgery, men-

rehabilitation

health versus trauma and emergency care.

tal

struggle seems inevitable with one

The

observing the emergence of "bad

economist(2)

manners at the health care trough."

Care as a Right

Health

most developed countries and in many

In

countries attaining a "healthy"

developing

seems to be an essential value for

population

society. Once the basic public health

that

have been taken, such as ensuring a

measures

water supply, the disposal of human

clean

and establishment of a safe food supply,

waste

the alleviation of distress and cure of dis-

then

becomes paramount. This aspect of health

ease

often engenders support for the assertion

care

"health care is a right."(3) The idea of

that

health care as a right presupposes an obligation

society, providers, politicians, physicians,

of

others, to see that the right is upheld. Yet,

and

is the nature of the assertion of a "right:"

what

it is a right to "health," which is an

whether

state; whether it is a right to "health care,"

ideal

is a service; or whether it is a right to

which

of access to health care," which is a

"equity

policy.

social

demands of medical consumers and

The

seem to be increasingly at odds

providers

the willingness of governments or

with

insurers to pay the bill.

health

is readily apparent that these terms have

It

meaning for different people, depend-

various

in certain ways on a dispassionate or vested

ing

in the economic liabilities incurred. In

interest

years the "price" to be paid for assuring

recent

to medical care, let alone health care, has

access

to reappraisals of the provision of medical

led

and its justification in many western

care

In the U.S., where about 11.5 percent

societies.

the gross national product is devoted to

of

care, there is evident concern for health

health

being out of control(4). The U.S. auto in-

costs

has expressed its deep concern for the

dustry

of health insurance premiums to

payments

its employees(5). This frustration has ex-

cover

itself to an admission by U.S.

tended

industry executives that their ef-

automobile

of the past several years have failed. More

forts

they are calling for drastic changes

importantly

the way the U.S. pays for health care includ-

in

ing the merits of national health insurance(6).

The American Public's View

while business and government raises

Yet

about the mounting costs of U.S. medical

alarm

The views and observations are those of the author and should not be construed in any way to be an expression

*Note:

U.S. Federal policy.

of

35


countries, most notably Great

Other

and Canada, have recognized the

Britain

that sophisticated diagnostic

necessity

therapeutic technologies create sig-

and

"costs" and have questioned the

nificant

of services that produce percep-

purchase

tible, but marginal, benefits at great cost.

Americans favor more rather than less

care,

spending(7). Nonetheless, Americans

health

to be satisfied with their personal medi-

appear

care while highly critical of the U.S. health

cal

system. Indeed, a majority favor extending

care

availability of health care rather than lower-

the

the U.S. expenditures on health care(8).

ing

surveys have shown Americans critical

Many

the high cost of services and the perception

of

many people do not have access to medical

that

care.

million Americans, an increase

Thirty-seven

six million since 1981, are reported to have

of

no health insurance in 1988. Within this, 37

had

are 12 million children with no health

million

A recent study by the Harvard School

coverage.

Public Health and Louis Harris and As-

of

found that 13 percent of all adult

sociates

said they needed medical care in the

Americans

year but failed to obtain it(9). This

previous

into 20 million adults and more than

translates

failed to obtain needed care because it was

half

expensive including situations where they

too

have adequate health insurance

didn't

coverage.

in Health Care Spending and

Growth

Containment

Cost

Americans are generally satisfied with

While

personal health care situations, some are

their

to a high-quality, lower-cost alterna-

receptive

Most Americans have not been in-

tive(10).

to participate in lower-cost

clined

such as patient provider or-

arrangements

(PPOs) and health maintenance or-

ganizations

(HMOs) although there is a

ganizations

36

that this is changing. Unless there

suggestion

major changes in American behaviors, then

are

a 15 percent of GNP devoted to

projecting

care spending is predictable(11). The

health

is clearly on to cut government health

pressure

outlays--principally in Medicare,

care

and public health service programs--

Medicaid

is likely to affect the quality and

which

of health care. The mood is one in

availability

the tension between a willingness to

which

larger portions of the U.S. "wealth" to

devote

care and the perception of marginal

health

through improvements in health status,

gains

currently measured, will result in a reevalua-

as

using terms such as effectiveness, efficien-

tion

benefits, cost-tradeoffs, cost-effectiveness,

cy,

et a1.(12). All the lexicon of the

cost-benefits,

in the context of political debate,

economists

the raising of the spectre of ra-

necessitates

health care and delivery of services.

tioned

and Resource Allocation

Rationing

compared to other developed countries

As

United States has not elected to systemati-

the

"ration" health care services but rather has

cally

the market place competitive "busi-

allowed

environment decide the mix and

ness"

of services. The cost of medical care,

availability

hospital care, has been rising faster

especially

the U.S. than general inflation or the growth

in

the population. Other countries, most notab-

of

Great Britain and Canada, have recognized

ly

necessity that sophisticated diagnostic and

the

technologies create significant

therapeutic

and have questioned the purchase of

"costs"

that produce perceptible, but mar-

services

benefits at great cost(13). While it may be

ginal,

early to judge the effects of the last eight

too

a U.S. government policy of deregulation

years,

market-oriented policies virtually ter-

and

two decades of federal expansion in

minated

care delivery and insurance. The federal

health

became one of health costs containment

policy

than expansion of access to health care

rather

Efficiency, productivity and cost

services(14).

have become the "coin of the realm"

savings

than a commitment to expand access to

rather

health care services.


and Resource Reallocation

Fairness

has been defined as "the study of

Economics

men and society end up choosing, with or

how

the use of money, to employ scarce

without

resources that could have alterna-

productive

uses, to produce various commodities and

tive

them for consumption, now or in the

distribute

among various people and groups in

future,

It analyzes the costs and benefits of

society.

patterns of resource allocation(15)."

improving

the U.S., various attempts under the

In

of "Health Decisions: USA" are

banner

way. These community fora may

under

grow to satisfy the possibility of fair-

yet

sharing in the allocation of resources.

statement, which includes more than

This

most would expect to have seen defined

what

"economics," contains several ideas per-

as

to health economics. It embodies con-

tinent

of choice or choosing, allocation of

cepts

resources or establishing priorities,

"scarce"

of benefits or effectiveness/ef-

measurement

calculations. Underlying much of this

ficienc

definition are clear implications for

general

health is viewed as a commodity. Indeed,

how

the market place, the concept of opportunity

in

becomes a dominant theme. That is, assum-

cost

a scarcity of resources then any choice

ing

in an opportunity forgone in order to

results

priority to a "needed" program or service.

give

need is a value judgment that even precedes

Yet

application of economics and in essence

the

an issue of perception. Also the deter-

becomes

of need is rarely absolute but com-

mination

with decision-making focused "at the

parative

that is a choice between "good"

margin,"

things(16).

"mechanical" the economists

However

have us believe decision-making is, the

would

of justice and equity seem to be more

questions

In broad terms, in whatever manner

important.

care policy is debated, there seems to be

health

agreement on a basic achievement of

general

37

Fairness can be taken to be an amal-

fairness.

of equity, ethics and efficiency. The deter-

gam

of fairness has more to do with

mination

ethical (or moral) choices and ensuring

making

the efficient use of resources.

notion of fairness has theoretical bases in

The

essential areas which can quickly be chal-

four

lenged(17).

Entitlement Theory. Each in entitled to what



they have as long as it is justly acquired.

Theory. Serving the greatest

Utilitarianism

for the greatest number.

good

Maximum Theory. Duty or wish that the


off be given high priority.

worst

Equality Theory. Equality of access to ser-


and products.

vices

the approaches are very interesting, each

All

its own grain of "truth". None seems to

with

great insight into fairness in the allocation

give

resources. Fair-sharing may be a mode of

of

which can bridge the spectrum of

thinking

care systems(18). This is not to ignore the

health

of process solutions, including

overlay

and medical/scientific(19)

economic/political

fail to acknowledge the possibility of a na-

or

process that requires application of fair-

tional

principles. It has been suggested that

minded

principles should be considered when

three

resources are to be allocated or re-allo-

medical

cated(20).



should be based upon evidence, not

policies

or consensus;

opinion

analysis should state the magnitude of

the

and economic consequences of all op-

health

tions; and

policy should compare the estimates of all

the

as well as a final recommendation.

outcomes

is a very stringent set of principles

This

if completed in open forum, may result

which,

the populace coming to grips with the com-

in

to accomplish "good" things. In the

petition

various attempts under the banner of

U.S.,

Decisions: USA" are under way. These

"Health

community fora may yet grow to satisfy the


of fair-sharing in the allocation of

possibility

resources.

and Systematic

Redistribution

Changes:

the U.S. 1966 was the year when two broad

In

programs were initiated by the

redistributive

Medicare and Medicaid. The in-

government:

beneficiaries were population groups:

tended

aged and disabled (Medicare) and the poor

the

These two programs have had very

(Medicaid).

support in which there is an explicit

broad

of wealth. The beneficiaries, in

redistribution

expect to receive benefits in excess of

general,

contributions within the rubric of "social

their

The equity lies in the ascribing of

insurance."

and fairness such that those of a higher

value

"the losers," pay (taxes) to finance

income,

programs. The expectation of the "losers"

these

that their time could come, in the form of

is

eligibility at age 65 or disability

Medicare

if needed, or that the safety-net will

benefits,

if they are impoverished, Medicaid.

exist

are essentially then, two types of

There

programs: charitable and univer-

redistributive

sal(21). They are characterized as follows:

Charity (Welfare) Programs. These are


designed to assist the poor.

specifically


is according to a "means test" and

Eligibility

program is financed by general taxation.

the

beneficiaries are "poor" and benefits are

The

by those with higher incomes. These

borne

may be a cash benefit such as Aid

programs

Families with Dependent Children

to

and Supplemental Security Income

(AFDC)

Other programs pay for in-kind ser-

(SSI).

such as housing and medical care

vices

(Medicaid).

Programs. These are for a category

Universal

individual with an eligibility, regardless of

of

The financing may be from general

income.

or specific taxes for the narrow pur-

revenues

of the program. Again the benefit may

pose

a cash benefit such as veteran's disability

be

workmen's compensation or in-

benefits,

services such as Medicare.

kind

38

these distinctions are useful for

While

purposes it is difficult to translate

academic

into measures or "criteria" for evaluating

them

system of health care. The U.S. system of

a

care has been described as pluralistic, at

health

and chaotic, at worst. A moderate position

best,

that it is a "patchwork" with poten-

concludes

for overlaps and gaps in services and

tial

Somewhere between the three ob-

programs.

lies, nonetheless, a concern that

servations

can be done with the same. Yet a conser-

more

U.S. health policy group has observed:

vative

order to ensure access to the same quality

"In

care system for everyone, adequate

health

must be provided to health care

resources

to sustain an appropriate level of

providers

both geographically and across types

services,

services. It is clear that there are limits in

of

ability as a society to pay more and pro-

our

more services Budgetary decisions re-

vide

to Medicare and Medicaid programs,

lated

employer decisions related to private

and

insurance coverage should be made in

health

of the potential effects on the fu-

consideration

quality of the entire health system(22)."

ture

recently another group of conservative

Just

at the Heritage Foundation has

scholars

a Top-to-Bottom overhaul of the U.S.

proposed

system(23). Among other things

health

is the abolishment of the present

proposed

taxes and premiums on the elderly

Medicare

increasing the Medicare deductibles and

and

amount of coinsurance paid by those who

the

afford it. Middle- and upper- income elder-

can

would be responsible for a greater share of

ly

own routine medical expenses, with

their

paying for major or catastrophic ill-

Medicare

Medicaid would continue to cover the

ness.

elderly and disabled for costs not paid for

poor,

Medicare. The report calls for a separate

by

nursing-home care program for the

long-term

poor and Medicare vouchers to allow

elderly

the elderly to buy their own health insurance.

"Criteria" for Systems

Designing

continuous emphasis on the use of

The

mechanisms as the determinator of

financing

allocation bodes ill for consensus

resource


can always be relied on to do

"Americans

right thing after they have exhausted

the

all the other possibilities."

Even so, an approach which attempts

building.

systematically define the parameters of the

to

over the totality of needs might be use-

debate

ful.

the "criteria" that could be used

Accordingly,

measure fairness and equity might be

to

as accessibility, availability, com-

defined

and continuity.

prehensiveness

Accessibility is used in the context of the


being accessible for a "first-contact"

provider

interfacing with the health care delivery

of

regardless of the presenting com-

system,

plaint.

Availability is used in the context of the




being in the appropriate

practitioner

locale and able to command all

geographical

resources needed to managing the

the

complaints.

presenting

is used in the context of

Comprehensiveness

a broad range of diagnostic and

providing

therapeutic services.

is used in the context of the prac-

Continuity

being gatekeeper in the system with

titioner

referral of patients/clients to

appropriate

yet maintaining constant.

consultants

"Criteria" and Rehabilitation

The

Services

must be evident to observers of the U.S.

It

who are not Americans themselves,

"scene,"

the U.S. is relatively profligate in the use of

that

wealth, particularly where it seems to foster

its

Yet, it is a characteristic of a country

inequities.

years old, that its populace is impatient for

200

new frontiers and risking a lot to

breaking

a personal sense of making it. The U.S.

achieve

the land of opportunity and conse-

remains

it is likely to be some time before the

quently

of constrained resources really hits

notion

and the populace has to determine a shift

home

39

its values. It is certainly unclear whether a

in

sense of fairness will ultimately prevail

broad

whether the perpetuation of the present com-

or

mode will continue. Many years ago,

petitive

Churchill said, "Americans can al-

Winston

be relied on to do the right thing after they

ways

exhausted all the other possibilities."

have

are some of these possibilities.

What


Accessibility

universal access to medical and health

While

in the U.S. has significantly improved over

care

past several decades, the determination of

the

contains a significant irony. The in-

success

in numbers of people reaching old age is

crease

tremendous success story. It is due to im-

a

in public health, reductions in

provements

mortality and disease, new dis-

childhood

about diseases and their treatment and

coveries

in personal life styles. The "solutions"

changes

have supported the aging of the popula-

which

have created a situation now almost

tion

looked upon as a "problem"--how

universally

meet the needs of this growing population.

to

of the elderly live in the community and

Most

their own households. Independent living is

in

norm, and it is fundamental that the

the

goal for the elderly should be the main-

primary

of the maximum level of independence.

tenance

maintenance of both physical and

The

health, of financial security and

psychological

continued integration is critical to this func-

of

independence(24).

tional

aging is widely associated with

Nonetheless,

gradual decline in the individual's ability to

a

independently. Longer life is similarly

function

with a higher occurrence of disease.

associated

may shorten the .period of decreasing

Death

but for many people there is an in-

capacity,

onset of increasing frailty. Much of this

evitable

can be compensated for if the proper

frailty

and support services are available to

medical

older individual. However, such services

the

be both timely and coordinated if they are

must

be effective in maintaining the maximum

to

degree of independence.

feasible

providing health care to the elderly,

In

promotion of the maximum level of functional


is the fundamental goal. Yet a

independence

has to be struck, recognizing the pre-

balance

decline in an individual's ability to

dictable

independence with advancing age. The

retain

is that, to the extent to which services

paradox

programs are made available to meet the

and

of the elderly, they have the potential for

needs

life, thus increasing both the level

prolonging

and duration of dependence(25).

certainly are instances of overuse of

There

technology at the end of life

medical

dying rather than prolonging

prolonging

But there are also as many instances

life.

which life is saved by an aggressive

in

in the face of uncertainty.

effort

paradox has now become so evident that

This

are being voiced which ask for ex-

opinions

limits to medical care, based on age(26).

plicit

intent is to use age as the basis for rationing

The

use of expensive and extensive life-sustain-

the

medical treatment. The arguments are en-

ing

when the urging is to consider death as a

ricing

part of life, not to be resisted when its

natural

comes. This concept of a natural lifespan

rime

the basis for an apparently "fair" ap-

becomes

to rationing medical care with the

proach

"setting limits" of an age (70? 80?)

proposed

which no life-supporting medical care

above

be given.

would

immediate past governor of the State of

The

created a maelstrom a few years ago

Colorado

he proposed an explicit rationing of

when

care for the elderly. The point was

medical

made when it was stated "We are

clearly

not funding transplants, artificial or-

proposing

or extraordinary procedures for those

gans,

sixty-five.'(27)

over

in this theme is that this state of

Implicit

is in essence an inter-generational shift

affairs

resources with children and youth becoming

of

"poorest" group(28). Already values are

the

to have one believe that the young, who

shaped

not lived a full life, are more useful to

have

society than those now aged who have had

4O

life's course. Inevitably this leads to the

their

e.g. that an impaired mongoloid

conclusion

is more valuable than an elderly person

child

Alzheimer's disease.

with

certainly are instances of overuse of

There

technology at the end of life--prolong-

medical

dying rather than prolonging life. But there

ing

also as many instances in which life is saved

are

an aggressive effort in the face of uncertain-

by

No precise diagnostic measure tells a

ty.

the chances of success in the treat-

physician

of critical illness. If a patient has, ahead of

ment

refused heroic measures, the physician

time,

should--refrain from interven-

can--indeed

and allow death to come without a strug-

tion

Such decisions must be made on the basis

gle.

clinical judgment, and such decisions are

of

to make.

difficult

"difficulty" leads directly to the argu-

This

that since physiologic and prognostic

ment

are so difficult to make in the elder-

judgments

why not simply base life-prolonging

ly,

decisions on an arbitrary age limit?

could be observed about the "healthy"

Much

that tends to negate the argument. The

aged

for acceptance of the argument is on

pressure

premise that declining resources have

the

us in a "lifeboat" situation, in which

placed

people must be thrown off the boat if

some

are to survive. The main rationale ad-

others

for jettisoning persons is on the basis of

vanced

with an implication of an unresolvable

age,

This approach to rationing on the

infirmity:

of age may really represent a retreat from

basis

standards that removes families, in-

ethical

and their physicians from the process

dividuals

decision making. There appears to be no

of

social or ethical rationale for rationing

medical,

care to a group that is largely respon-

medical

for any country's economic growth and

sible

prosperity.


Availability

geographical dispersion of medical, so-

The

and health related services in the U.S. is

cial

to other developed large land-mass na-

similar

One advantage may be the relative

tions.

of physicians in the U.S. which has

"surplus"


in smaller and smaller communities

resulted

a doctor. This trend may continue al-

having

the variety of specialists completing

though

training may not result in sufficient

their

care disciplines. This is critical since

primary

narrow disciplines require a large popula-

most

to support a practice such as gastro-

tion

and ophthalmology. Most

enterology

do not have the immediate

communities

of physical and rehabilitation

availability

specialists. Yet availability goes

medicine

the numbers of practitioners in a com-

beyond

(including allied health personnel, so-

munity

workers, etc.)

cial

1989, the State of Oregon decided to drop

In

in the Medicaid program of organ

coverage

to spend more on prenatal and

transplants

preventive care(29). But after the death of

other

child waiting for a transplant, the State legis-

a

changed its mind. While the legislature

lature

stood by reinstating Medicaid coverage for

has

transplants it is now considering a bill

organ

would prioritize covered medical services

that

further. Rather than cut eligibility, the

even

would eliminate coverage of services

state

lower priorities. The general intent is,

given

the acknowledgment of limited resources,

with

the needs of a single person should not be

that

above the needs of the Medicaid insured

put

group.

a few years ago the U.S. had a law

Until

mandated Comprehensive Health Care

which

The law established in the mid-70s a

Planning.

of Health Planning Agencies and these

network

entities were funded by the federal

State-based

The essence of the program was to

government.

an organized geographical dispersion of

direct

and health care services. Its enforce-

medical

powers related to the approval or with-

ment

of Certificates of Need (CON). The

holding

were applicable to the building of addi-

CONs

hospital and nursing home beds as well

tional

various discrete diagnostic (e.g., CAT scans)

as

therapeutic (e.g., cardiac catheterization

and

services. These agencies were successful

units)

promulgating and enforcing regulations that

in

growth but was not as

limited

that gaps in services were provided.

ensuring

successful in

41

agency had no powers to insist that the

The

health industry should develop

proprietary

that would fill the gaps. Indeed in

proposals

instances a dearth of psychiatric and

many

services prevailed until Medicare

rehabilitation

its reimbursement mechanisms in

changed

All services, except psychiatric and

1983.

were "reimbursed" on the basis

rehabilitation,

of a

designated "prospective price" using the

groups (DRGs) methodol-

diagnosis-related

Essentially everything in the health care

ogy.

delivery side has come to adhere to the

services

model. Ideal lengths of hospital

competitive

the DRG, are established and there is

stays,

to discharge patients quicker and maybe

need

even sicker.

even with the catastrophic

Medicare,

that became law in 1989, emphasizes

provision

for discrete measurable services.

"payment"

broad availability of services seems to fol-

The

the varieties of payment to a very high level

low

correlation. Little distinction is made be-

of

"life-enhancing" and "life-extending"

tween

An example of a "life-enhancing" ser-

practices.

would be socially oriented adult day care

vice

with an emphasis on maintenance

services

with strong psycho-social and

rehabilitation

services. A "life-extending" service

recreational

be high-tech home care services with an

would

on restorative rehabilitation.

emphasis


Comprehensiveness

technology "imperative" has been used

The

describe the scientific and applied research

to

the past couple of decades that have

over

in new, sophisticated and usually ex-

resulted

diagnostic and therapeutic tech-

pensive

Most often this imperative has been

nologies.

with the ability to diagnose condi-

associated

more accurately and provide a new and

tions

most effective new treatment

sometimes

In some instances the new

modality.

technology provides a "cure," such

therapeutic

a transplanted heart or liver. More common-

as

with greater or lesser success, there is

ly,

of the destructive biological

amelioration

and extend the life span, albeit with

processes

chronic condition such as diabetes mellitus or

a

disease.

heart


therapeutic technologies can range

These

a new surgical technique (heart-lung

from

to medical devices (FES for quad-

transplants),

to new therapeutic agents (cimetidine

riplegia)

gastric ulcers). The pharmaceutical and

for

industries have a high invest-

biotechnology

in research and have enjoyed the world's

ment

completely open market. A study of the

last

of new drugs, their patenting and

development

is almost an allegory for the U.S.

marketing

care system. One drug has recently been

health

by the U.S. Food and Drug Ad-

approved

(FDA) which will benefit at least

ministration

U.S. patients with the chronic illness of

75,000

failure.

kidney

FDA has approved a highly effective but

The

expensive drug, epoctin, for the anemia

very

with kidney failure that may even-

associated

assist people with anemia caused by can-

tually

AIDS, rheumatoid arthritis or other

cer,

This new treatment is a genetically

diseases.

version of a natural kidney hor-

engineered

that stimulates the body to produce red

mone

cells and will become one of the most

blood

drugs ever covered under the End

expensive

Renal Disease (ESRD) program in

Stage

It is likely to cost $200 to $500 million

Medicare.

year to pay for the drug for all beneficiaries of

a

who now often require transfusions

ESRD

few weeks for severe anemia.

every

drug will be sold under the brand name

The

and manufactured by a small biotech-

Epogen

firm, Amgen, Inc. In the U.S., in addi-

nology

to 75,000 kidney dialysis patients, 20,000 to

tion

others with less severe disease are ex-

50,000

to be candidates for treatment. The

pected

of gross income for Amgen Inc. are

projections

projected at $1 billion a year. Need-

currently

to say the cost is attracting wide attention

less

the company is defending the high price

while

charged for the drug is an attempt for

being

to recoup the cost of development

Amgen

is estimated at $100 million. Others ex-

which

that in kidney disease patients, the drug

plain

hospital costs by virtually eliminating

reduces

need for transfusions. It also appears to be

the

than frequent transfusions, which expose

safer

to infections with blood-borne viruses

patients

as hepatitis and sensitize their immune

such

against foreign proteins, making it

systems

difficult for their bodies to accept a kidney

more

transplant.

so, U.S. Congressional interest has been

Even

to ask the federal agency that manages

stirred

Medicare program, the Health Care Financ-

the

Administration, "to get a fair price." For

ing

the new realities of drug pricing are

some,

the government with an oppor-

presenting

to rein in the drug industry. But for the

tunity

biotech companies and other phar-

small

companies that have invested with

maceutical

awaiting approval for compli-

venture-capital,

and research-intensive new drugs, this

cated

of delay is a difficult matter. It raises such

sort

as: Will policymakers (legislative and

questions

allow the drug industry the same

executive)

of return it has received over the past 25

rates

Will the industry have to make the tran-

years?

and can it, from marketplace to managed

sition,

What signal would it send to the money-

prices?

since this is a long-term capital-inten-

markets

business? Can those affected with rare

sive

ever expect to see orphan drugs

diseases

developed?


Continuity

nearly a decade of pervasive despair,

After

AIDS epidemic has for the first time entered

the

phase in which, with aggressive treatment,

a

disease need no longer be considered an

the

death sentence. Nobody has ever

immediate

"cured" of AIDS. And nobody will be any

been

soon. Treatment is still expensive, compli-

time

and at its best only a relatively short-term

cated

Nonetheless the cumulative

palliative.

is that, for AIDS victims, with proper

evidence

attention and access to an emerging

medical

of new drugs, many patients

armamentarium

thought to have no hope can live for years.

once

the apparent good news an irony had

Despite

itself in the aggressive stance taken

evidenced

public health officials seeking to contain the

by

The diagnostic tests and preventive

epidemic.

are very expensive and nobody

treatments

to have any idea who will pay the bill.

seems

Preventive care for any disease is ordinarily less


is really known about the magnitude

Little

the extent of health care provided by an

or

network of family, friends and

informal

certain instances it would

others...In

to be wise in the stewardship of

seem

resources to provide support to

limited

informal network as a cost-avoidance

this

measure.

than hospitalization, but most health

expensive

plans in the United States, including

insurance

plans, do not recognize this. In-

government

plans generally do not pay for ex-

surance

drugs, including AZT.

perimental

officials from the U.S. Centers for

Recently,

Control and the National Institutes of

Disease

recommended that many still-healthy

Health

infected with the human im-

people

virus (HIV), which causes

munodeficiency

begin taking a drug that appears to

AIDS,

a deadly pneumonia.

prevent

drug is aerosol pentamide, which ap-

The

safe and effective in preventing the

pears

that is the leading cause of death

pneumonia

people with AIDS. Costing about $150

among

month, however, its expense--especially

each

any of the 1.5 million infected Americans take

if

regularly--has caused great concern among

it

who have to provide health care financ-

those

ing.

in the epidemic, there was little more

Early

could do for the AIDS patients than

doctors

them as comfortable as possible. The en-

make

hope for stopping the spread of the disease

tire

in teaching people how to keep from becom-

lay

infected. Most agree that prevention is still

ing

most important and most effective way to

the

AIDS. But as new drugs are developed at

fight

some of the emphasis shifts to medical

least

care.

there is a widening gap between scientific

If

and federal funding priorities, it is

progress

unavoidable(30). Researchers are work-

largely

as hard as they can to develop and test new

ing

43

for disease that is expected to affect in-

drugs

numbers of Americans over the next

creasing

years.

several

expects scientists to refrain from

Nobody

a new therapy just because

recommending

officials may not have the money to

federal

it to everyone who wants the drug. And

supply

experiments in several areas appear

recent

enough to create an increased

promising

for drugs in the coming years. That, in

demand

will probably encourage many more

turn,

who suspect they are infected to get

people

tested and seek treatment.

what is probably more remarkable about

But

"terminal" disease is the continuity of care

this

receive that is completely unrelated to the

many

health care system.

formal

is really known about the magnitude or

Little

extent of health care provided by an infor-

the

network of family, friends and others. It is

mal

argued that this is the appropriate role for

often

informal network and any "coverage" in

this

has the effect of a "moral hazard."

financing

notion here is that what simply happens

The

a service or program is financed, which

when

be provided by a trained informal care

could

results in a shift to the formal net-

provider,

The evidence for this phenomena is weak

work.

presumably the sicker the person cared for

but

the informal provider the more likely this is

by

happen.

to

certain instances it would seem to be wise

In

the stewardship of limited resources to pro-

in

support to this informal network as a cost-

vide

measure. For instance, respite care

avoidance

seem to ensure the care giver does not

would

out" which might result in earlier in-

"burn

usually more costly, of the

stitutionalization,

of their care. This is not a well

recipient

and accepted part of funded services

developed

programs and is but one facet of the need

and

promote autonomy and functional inde-

to

pendence.

sustaining support needed by those with

The

physical and mental illness is an area

chronic

that is generally neglected. It is certainly not


to only be a carer when a cure

"glamorous"

be found. Consequently it is not surpris-

cannot

that support, that is financing, of long-term

ing

services have not been resolved in the U.S.

care

a Means of "Fairness"

Approaching

the U.S. it still seems premature to expect

In

board agreement on fair-sharing as the pre-

a

examples illustrate. There may just be a

vious

of areas in which agreement might be

couple

before such agreement can be reached.

reached

are an understanding of technology meas-

They

and deciding on a basic "set" of medi-

urement

cal services.


management

Technology

influence of designating Medicare reim-

The

for new technology is not a small

bursement

It is believed that the government's role

matter.

pricing has claimed one victim. Calfiornia's

in

Inc. ran into heavy criticism from the

Genetech

Congress for the pricing of its heart drug

U.S.

in 1988. HCFA did not allow Medicare to

TPA

up the tab for the $1,200 treatment, con-

pick

in part to the product's disappointing

tributing

HCFA's procedures for approving

sales.

for medical services and diagnos-

coverage

technologies have always been

tic/therapeutic

bit mysterious until it lost a court case. It

a

published in the January 20 Federal

recently

the procedures it will follow. Already

Register

is sparking considerable controversy because

it

has become a major factor in

cost-effectiveness

deliberations. HCFA offers the following

the

criteria:

cost-effectiveness

less costly and at least as effective as an

1.

covered technology.

alternative

more costly than an alternative but more

2.

and improved outcomes justified the

effective,

expense.

additional

less effective and less costly than an alter-

3.

native but viable for some patients.


Basic "set" of medical/health services

American Medical Association over a

The

of several years convened many panels

period

to define the Health Policy Agenda for the

People(31). This report by a coalition

American

172 public and private sector organizations

of

Medicaid reform as one of the U.S.'s

identified

urgent health care issues. The most sig-

most

role of an Ad Hoc Committee on

nificant

was to make a series of recommenda-

Medicaid

which, while focusing on improved

tions

uniformity and effectiveness of the

eligibility,

program, define a basic "set" of medi-

Medicaid

services(32).

cal/health

The Medicaid program should be restruc-

1.

so as to be governed by national stand-

tured

and goals.

ards

The categorical line of Medicaid

2.

to public case assistance (welfare)

eligibility

should be broken; income eligibility

programs

the program should be set at no less than the

for

poverty level.

federal

All states should be mandated to adopt a

3.

Needy program with "spend down"

Medically

provisions. Asset testing should be

eligibility

as an eligibility requirement only

acceptable

the Medically Needy provisions. "Medi-

under

needy" persons are those whose incomes

cally

the Medicaid eligibility level but who

exceed

been impoverished by catastrophic medi-

have

cal bills.

A standard benefit package should be

4.

by each state and should be federally

provided

It should include physician services;

mandated.

and outpatient hospital services;

inpatient

and roentgenogram services;

laboratory

drugs; institutional care for the

prescription

and the physically or mentally disabled;

elderly

services; early and periodic screening,

dental

and treatment services; family plan-

diagnosis,

services; home health and personal care

ning

and other medically necessary profes-

services;

services.

sional

Medicaid expansion should include

5.

to promote cost-effective provision of

measures

services.

Medicaid expansion should include

6.

and incentives to encourage broader

policies

care provider participation.

health

A greater burden of the fiscal impact of

7.


are troubling issues which relate to

These

clear sense of'fairness" in the allocation

a

resources to disabled citizens. In essence

of

is probably needed is a better socio-

what

theory to adequately answer these

ethical

questions.

expansion should be borne by the

eligibility

government. At the same time, the

federal

formula governing reimbursement to

federal

should be revised to correct for tax-bur-

States

inequities.

den

Long-term care services should be con-

8.

under Medicaid or through a structural-

tinued

improved program.

ly

approach to specifying a uniform benefit

This

for the poor may yet have the effect of

package

the clarification of health and medical

forcing

for everyone(33).

care

on the Disability and

Impact

Rehabilitation

and rehabilitation is almost a topic

Disability

itself except that tradeoffs in the allocation

unto

resources seem to always place those with

of

illnesses and at a disadvantage(34). The

chronic

for rehabilitation services grows and

need

are made concerning the allocation of

decisions

for newly rescued patients with new

resources

disorders. Specialized programs have

chronic

resources on specific populations

concentrated

brain and spinal cord injury, stroke, am-

(e.g.,

raising questions of justice and equity.

putees)

course, quality of life issues will probably

Of

decisions to provide resources. These are

affect

issues which relate to a clear sense of

troubling

in the allocation of resources to dis-

"fairness"

citizens(35). In essence what is probably

abled

is a better socio-ethical theory to ade-

needed

answer these questions. Some have

quately

advanced that incorporate a balancing act

been

ensures "fairness" in the equality of oppor-

that

yet even this will have many practi-

tunity(36),

administrative and implementation issues

cal,

to be resolved.

and Conclusion

Summary

all this discourse and exploration of the

In

there is no profound answer. There are

issues

fundamental societal values in the U.S.

more

go beyond the mere consideration of the

that

of "scarce" medical resources. Con-

allocation

building will continue to be very

sensus

Maybe the initial building blocks:

problematic.

how effectiveness is determined

concluding

a simultaneous commitment to a basic

and

of medical services, would move the U.S.

"set"

fulfilling the criteria of accessibility,

towards

comprehensiveness and continuity

availability,

medical and health services.

of

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University


Assurance as an Aid to

Quality

Decision Making in Disability Management:

Ethical

from Recent Ethical Issues Involving

Lessons

Groups in New Zealand

Disadvantaged

Peter Jo Gow, MBChB, BMedSc, FRACP, FACRM

by

New Zealand Rehabilitation Association

President,

year 1988 was a watershed in medical

The

in New Zealand. The reports of two

practice

inquiries publicized clinical and ethical

judicial

in the delivery of health care to

deficiencies

disordered prisoners, particularly

mentally

of Maori descent and to women with

those

carcinoma in situ. In addition, the

cervical

Commission on Social Policy identified

Royal

Maori, and people with disabilities as

women,

disadvantaged groups in New Zealand

major

in a four volume report published in

society,

(April Report 1988). This report also iden-

1988

inequities in the New Zealand benefit

tified

and stated "there is no justification for

system,

stark difference between the treatment of

the

sick and disabled (who get generally lower

the

of income-tested benefits). As an addi-

levels

injustice the injured have priority access

tional

health care, compared with the sick and dis-

to

abled".

the inadequacies in service

Although

revealed by the judicial inquiries had

provision

previously recognized, the publication of

been

Report of the Cervical Cancer Inquiry

the

1988) and the Psychiatric Report

(Cartwright,

1988) resulted in the implementation

(Mason,

management strategies to correct these

of

They therefore fulfilled the re-

deficiencies.

of quality assurance whose aim is

quirements

only to identify areas of practice which do

not

reach accepted standards, but to rectify this

not

by taking effective steps to improve

inadequacy

quality of service so that appropriate stand-

the

may be met. In addition, both inquiries

ards

the need for consumer input in set-

reinforced

and auditing standards of ethical practice.

ting

paper will also include an example of this

This

in which people with severe handicap

practice

47

involved in decisions about the implemen-

are

of cardiopulmonary resuscitation should

tation

suddenly collapse while resident in a

they

disabled unit.

younger

principles not only aid decisions

These

disadvantaged individuals, but

involving

provide guidelines for resource alloca-

also

to people with disabilities, thereby

tion

in the resolution of the ethical

assisting

between the common good and the

dispute

good of individuals.

ethical considerations identified by Jon-

The

et al (1982) are exemplified by the

sen

disadvantaged groups (Table

aforementioned

Following discussion of these ethical issues,

1).

paper will present an ethical philosophy

this

on respect of persons and resultant com-

based

mitment to

communication which also

the use of quality assurance prin-

facilitates

to set ethical standards. These principles

ciples

only aid decisions involving disadvantaged

not

but also provide guidelines for

individuals,

allocation to people with disabilities,

resource

assisting in the resolution of the ethical

thereby

between the common good and the

dispute

of individuals (ten Have, 1988).

good

Cancer Inquiry

Cervical

report of the cervical cancer inquiry

The

from the outcry which greeted an ar-

resulted

by two New Zealand journalists in a wide-

ticle

read magazine. This reported the results of a

ly

paper published in the gynecology

scientific


were repeatedly ignored by

...requests

in part because of the ad-

administrators,

ditional costs which would be involved.

in 1984 detailing the poor outcome in

literature

group of women with positive cervical smears

a

at the National Womens' Hospital in

treated

the largest city in New Zealand. The

Auckland,

(McIndoe et al, 1984) showed significant

paper

of cervical carcinoma in situ to in-

progression

carcinoma in a group of 130 women with

vasive

positive cervical smears as a result

persistently

deliberate under-treatment compared to a

of

rate in 817 cases who had normal

negligible

after treatment by conventional techni-

smears

Six percent of women in the former group

ques.

compared with 0.5 percent in the ade-

died

treated group. This policy of deliberate

quately

was based on the faulty

under-treatment

in 1966 that carcinoma in situ did

hypothesis

progress to invasive carcinoma, despite the

not

view at the time that carcinoma in situ

world

a precancerous condition. Following an

was

inquiry, Judge Cartwright

exhaustive

her report. This was particularly con-

presented

with the lack of informed consent ob-

cerned

from any of the patients included in the

tained

which was based on the sincere but mis-

trial,

belief of the gynecologist responsible

guided

the treatment policy, who wanted to save

for

from unnecessary mutilating surgery.

women

Cartwright was also critical of the lack of

Judge

to contact women who had been in-

attempts

treated and were still at risk of in-

adequately

carcinoma 22 years after the

vasive

of the trial. She attributed the

commencement

for the failure to treat adequately car-

reasons

in situ to a number of factors, including:

cinoma

to recognize the dangers for patients

"Failure

procedures were adopted which did

when

comply with generally accepted stand-

not

of treatment at that time..

ards

Failure to evaluate adequately the risks to


of the hypothesis on which the 1966

patients

was based (that carcinoma in situ is not

trial

pre-malignant disease) was incorrect..

a

48

Failure to note the rising incidence of in-


cancer among patients included in the

vasive


and failure to stop the trial and treat the

trial;

as soon as the cogent evidence of this

patients

risk began to emerge..

of standards in care in some clini-

Mediocrity

areas and, in particular, in the standard of

cal

offered to patients."

information

of these factors might well have been

All

by an adequate quality assurance pro-

avoided

gram.

Public Offenders with Mental Illness

next example of deficient medical ser-

The

offered to people with disability relates to

vices

offenders with mental illness. The ethical

public

involving mentally disordered

consideration

is that they should at least be given

prisoners

opportunity to be assessed by a qualified

the

to determine if the indications exist

psychiatrist

medical intervention, in order to relieve the

for

of those patients with a mental illness,

suffering

if a cure is not possible. Although the New

even

law is clear on this point, it is apparent

Zealand

the placement of such prisoners has long

that

a vexing question. The New Zealand In-

been

of Prisons wrote in his annual report to

spector

in 1882 "the question respecting

Parliament

and inebriates being placed in prisons

lunatics

hospitals ought to be settled once and for all.

or

has been for 10 years, a case of each institution

It

refusing to take them in".

numerous working parties over the

Despite

decade which recommended that the

past

Hospital Board provide secure

Auckland

at the local psychiatric hospital, these

facilities

were repeatedly ignored by ad-

requests

in part because of the additional

ministrators,

which would be involved, which were

costs

to be national rather than a local

considered

responsibility.

the gross deficiencies in forensic

However,

services were highlighted in a fur-

psychiatry

judicial inquiry which was set up in 1987

ther

in response to the public outcry which resulted


such a philosophy is to be successful, it

If

the provision of adequate facilities

implies

in the community.

a mentally disordered patient, who had

when

in psychiatric institutions for 20 years, was

been

to the community without adequate

discharged

support, and subsequently fatally

psychiatric

a fellow resident of his boarding house,

stabbed

severely wounded two others, during a

and

episode. During the inquiry which

psychotic

chaired by Judge Mason it became ap-

was

that mentally disordered prisoners were

parent

being referred to psychiatric institutions,

not

admission sin 96 being 149, compared to 414

the

1980. In addition, people of New Zealand's

in

Maori race, who for approximately

indigenous

of the New Zealand population, were dis-

10%

over-represented among the

proportionately

disordered people in the forensic

mentally

group, being approximately one

psychiatry

of the admissions admitted to psychiatric

third

At the maximum security prison in

hospitals.

the number of prisoners committing

Auckland,

grew from one between 1969 and 1982,

suicide

13 between 1983 and 1987, during the period

to

which the admission rate to the local

in

hospital was falling, despite the per-

psychiatric

need identified by prison staff, whose

ceived

were confirmed by the inde-

impressions

assessment of a panel of psychiatrists

pendent

reviewed the relevant case histories.

who

the causes of the increased suicide rate

Among

the apparent policy of the psychiatric

was

which would only admit straight for-

hospital

cases of mental disorder that would readi-

ward

respond to a therapeutic regimen. Although

ly

Department officers supported the

Justice

of greater care in the community

development

psychiatric patients, they emphasized to the

for

committee that the need for secure

Mason

for some patients would remain and

facilities

be accepted by hospitals.

must

such a philosophy is to be successful, it

If

the provision of adequate facilities in

implies

community. In his report, Judge Mason

the

a number of barriers to good com-

identified

care, including the:

munity

49

of adequate funding: there needs to be

"lack

bridging finance which enables the develop-

i)

of community facilities before patients are

ment

into the community; and ii) an ade-

discharged

budget for the ongoing provision for

quate

psychiatric services;...

community

of consultation with patient groups; with

lack

groups and with the Maori com-

community

in planning and implementation of ser-

munity

vices;...

of management structures which would

lack

the development of initiatives in the

enable

of all participants within the

incorporation

into these planning structures..."

community

to Other Groups

Parallels

should be noted that the barriers to com-

It

care of those disabled by mental disor-

munity

is strongly paralleled by similar barriers to

ders

with physical and intellectual disability,

those

the identification of the lack of consultation

and

consumer groups is of particular relevance

with

respect to both ethical and quality as-

with

principles. The Cartwright and Mason

surance

illustrate the communication gap which

reports

arisen between providers and recipients of

has

services in New Zealand. Campbell

medical

lack of consultation with con-

.the

groups is of particular relevance

sumer

respect to both ethical and quality

with

principles.

assurance

suggests the approach which stresses

(1972)

and emotional communication be-

rational

persons as an ideal in morality is an

tween

of an ethical approach based on

example

for persons which places no final

respect

on moral rules, places the value of the

authority

above the value of benefit to society,

individual

by a constant attempt to open and maintain

and

is the surest sign of trying to

communication

the individual person involved. This

benefit

philosophy is echoed by Walton (1982) who


that "in ethical reasoning about a par-

states

case, there is never any guarantee, but

ticular

is always some hope given that each will

there

to understand the others' arguments".

try

Assurance

Quality

respect for the other person's point of

The

and relevance of communication as a

view

for determining appropriate standards

means

also of paramount importance in the develop-

is

of quality assurance programs. Quality

ment

has been defined (Shaw, 1986) as "the

assurance

of provision against expecta-

measurement

with the declared intention and ability to

tions,

any demonstrated weaknesses". The

correct

important thing, and that which is often

most

is the putting into place of the

neglected,

procedures necessary to improve

management

quality of service to overcome the deficien-

the

previously identified by systematic evalua-

cies

tion.

many clinicians are suspicious of

Although

assurance as a way for managers to limit

quality

by means of a utilization review,

resources

and social audit, with consumer input,

clinical

important if the standards of quality are to be

is

Again, communication between

appropriate.

and clinicians is important for the

managers

of quality care. These elements of

delivery

in health services or in individual

quality

contact have been summarized by Shaw

patient

(1986) as follows:




the service or procedure

"Appropriateness:

what the population or individual actually

is

needs.

Equity: a fair share for all the population.

services are not compromised

Accessibility:

undue limits of time or distance.

by

Effectiveness: achieving the intended


for the individual and for the popula-

benefit


tion.

services are provided to satis-

Acceptability:

the reasonable expectations of patients,

fy

providers and the community

50


it is tempting to blame ad-

Although

for the reduction of resources

ministrators

rehabilitation of people with disability,

for

is important that they are provided with

it

data to allow them to make rational,

the

and ethical decisions.

informed

resources are not wasted on one

Efficiency:

or patient to the detriment of

service

another".

demonstration of effectiveness is the task

The

research, Ostrow (1983) noting that "quality

of

is the interface between clinical re-

assurance

and clinical practice". Ethical decision

search

can thus be assisted. Johnston and

making

(1983) note that "the most appropriate

Keith

of cost-effectiveness analysis is to optimize

use

allocation of resources and effort between

the

Research in the area of cost effec-

alternatives".

and rehabilitation is sparse, but is well

tiveness

by Ostrow et all (1987) in a book

summarized

reviews the validity of both scientific

which

and the cost effectiveness data in the 20

method

so papers devoted to this topic which have

or

in the literature to date. Although it

appeared

tempting to blame administrators for the

is

of resources for rehabilitation of

reduction

with disability, it is important that they

people

provided with the data to allow them to

are

rational, informed and ethical decisions.

make

Professor of Geriatric Medicine at the

The

of Manchester has stated: "my start-

University

assumption is that rehabilitation is facing a

ing

and that the crisis has its roots not only in

crisis

government indifference to the plight of

central

disabled, but also in the average

the

indifference to scientific in-

rehabilitationist's

(Tallis, 1988). Once research has

quiry"

the necessary information base,

produced

decisions concerning what services to

policy

produce and how to

made.

distribute them can be

essence of quality assurance is the com-

The

of actual care against a pre-established

parison

of "good" care. This model consists of

model

which identify the most important com-

criteria


phrase "quality of life" is highly sub-

the

it is often used by someone other

jective,

the person whose life is being

than

evaluated

of good care, and standards which in-

ponents

which level should be reached in each

dicate

One of the key tasks in the quality

criteria.

program is to identify the area which

assurance

is meaningful to study and then determine by

it

of consensus the criteria of quality and

means

standards by which to measure this. The

the

for quality assurance and the suggested

need

in standards of good care are recom-

criteria

in all the reports of New Zealand ethi-

mended

issues which were discussed above. For

cal

Judge Cartwright in the report of the

example,

cervical cancer inquiry stated the need for

1988

protocols, patient information and

treatment

assurance programs, which involved

quality

and external audit and involvement

in-hospital

the patient. Similarly, Judge Mason recom-

of

the need for internal and external audit

mended

community psychiatric services, and invol-

of

with the community and patients

vement

groups in the decision making process.

of Life"

"Quality

criteria have equal relevance to all

These

disadvantaged by disability, whether it

people

physical, mental, intellectual or social, and

be

illustrated by a prospective survey by

are

classified as "dependent handicapped"

people

were at potential risk of being denied car-

who

resuscitation (CPR) on the

diopulmonary

that their perceived quality of life did

grounds

warrant active intervention in the case of

not

collapse.

sudden

with physical disability are often dis-

Adults

with respect to their quality of life. Jon-

cussed

et al, (1982) pointed out that the phrase

sen

of life" is highly subjective, it is often

"quality

by someone other than the person whose

used

is being evaluated, including doctors on the

life

team who are young, fit and heal-

resuscitation

according to Petrie (1987) who surveyed 41

thy,

with severe disability who were ad-

people

51

to the young disabled unit at Waikato

mitted

Over 75 percent of the residents ex-

Hospital.

a wish to have CPR. Of the nine patients

pressed

not to have CPR seven were in the

choosing

of 26 over the age of 45 years and eight

group

been disabled for more than ten years. Five

had

the eight who did not wish to have CPR and

of

had completed the Beck depression scale

who

mild to moderate depression, compared to

had

of the twelve in the group who wanted

two

The opportunity to make an informed

CPR.

was positively received by all resi-

decision

dents.

Commission on Social Policy

Royal

most extensive quality assurance pro-

The

in New Zealand involved the work of the

gram

Commission on Social Policy, who con-

Royal

exhaustively with many of New

sulted

three million people, who made over

Zealand's

submissions as well as taking an active

6,000

in formal surveys. The terms of reference

role

"to receive representations upon, inquire

were

investigate, and report

into,

The extent to which New Zealand meets

(i)

standards of a fair society and the main

the

why New Zealand falls short of any of

reasons

standards. The standards of a fair society

these

were considered to be:

"dignity and self determination for in-


families, and communities;

dividuals,



of a standard of living sufficient

maintenance

ensure everybody can participate in and

to

have a sense of belonging to the community;

opportunity for people, of whatever

genuine

race, gender, social and economic posi-

age,

or abilities to develop their own poten-

tion

tial;

a fair distribution of the wealth and resources


New Zealand including access to the

of

which contribute to social well-

resources

being;

acceptance of the identity and cultures of


peoples within the community, and

different

and respect for cultural diver-

understanding

sity".


criterion which was adopted by the

The

was that all New Zealanders

Commission

entitled to social well-being, which

are

defined as being "recognized by the

was

to which all have a reasonable ex-

extent

of those things which are

pectation

accepted as necessary for a heal-

generally

happy life"...

thy,

criterion which was adopted by the

The

was that all New Zealanders are

Commission

to social well-being, which was defined

entitled

being "recognized by the extent to which all

as

a reasonable expectation of those things

have

are generally accepted as necessary for a

which

happy life", with the standards listed

healthy,

the value on the criterion that indicate

above

boundary between acceptable and unaccep-

the

quality of life in a fair society.

table

by which criteri'a and standards can

Means

developed in the area of services for adults

be

physical disability are included in the

with

of the Strategic Planning

recommendations

for Area Health Boards (Depart-

Guidelines

of Health, 1989) these include the follow-

ment

ing:

"Rehabilitation Services Development





(SDG) be set up to establish local

Groups

and current resources, and plan fur-

needs

developments including a management

ther

to set the services in place and allow

structure

them to function...

with disabilities be involved early in

People

planning of services by setting up a Ser-

the

Advisory Committee of consumers. This

vice

will work in partnership with the SDG

group

advice as services are planned, and then

and

consumer satisfaction...

monitor

Service Audit Mechanism be developed to

A

outcome measures and monitor

establish

performance by professionals...

Health Boards take an inventory of all

Area

available in the local and regional

services

area, publish this in a booklet form and up-

52

this every year..."

date

was recognized that to be assured of

It

rehabilitation service, "a manager for

quality

Services should be appointed

Rehabilitation

ensure that coordination between con-

and

and service providers takes place".

sumers

means by which rehabilitation service

The

groups and service advisory

development

might work with the assistance of

committees

manger to set standards is suggested by Shaw

a

(1987) as follows:







the subject...

"Define

the common wisdom...

Research

local practice...

Assess

the difference...

Reconcile

Test the guidelines...

the guidelines as standards".

Adopt

summary, both quality assurance and

In

are intimately linked with the rights of

ethics

individual and his or her interdependence

the

society. The task of all of us, as providers

with

consumers of services, is to work together

and

determine the criteria and standards which

to

provide at least the basic requirements of a

will

meaningful life and the outcome measures to

quality assurance and ethics are

.both

linked with the rights of the

intimately

and his or her interdependence

individual

society.

with

the success of interventions which

monitor

introduces to achieve these. We are then

society

a position to negotiate rationally with those

in

for the allocation of funds, in order

responsible

these standards may be met in the most

that

manner. With the consumers

cost-effective

input into the factors which will pro-

providing

them with good quality care, service

vide

accepting the responsibility to

providers

this care, and health economists taking

deliver

of these principles, it should be possible to

note

the most cost effective means to deliver

provide

a high quality of care at an affordable cost. By


Considerations

Ethical

preferences

Patient

indications

Medical

of life

Quality

External factors

of formal monitoring with quality as-

means

programs dedicated to correcting iden-

surance

deficiencies, the requirements of ethical

tified

making and social justice should be

decision

achieved.

References

A.V., Moral dilemmas in medicine,

Campbell,

and London, Churchill Livingstone,

Edinburgh

1972.

S., The cervical cancer inquiry.

Cartwright,

Government Printing Office, 1988.

Auckland

of Health, Strategic planning

Department

for area health boards: services for adults

guidelines

physical disability, eds. Caradoc-Davies,

with

J. Wellington, Department of Health,

Daggar

1989.

A.R., Siegler, M., Winslade, W.J.,

Jonsen,

ethics, New York, McMillan Publishing

Clinical

Inc. 1982.

Co.,

M.V., Keith, R.A., "Cost-benefits of

Johnston,

rehabilitation: Review and critique,"

medical

of Physical Medicine and Rehabilitation,

Archives

64:451-458.

1983;

K., Psychiatric Report 1988, Wel-

Mason,

The Committee, 1988.

lington:

P.C. "Quality assurance-improving

Ostrow,

outcomes," in Willis and Spackman's

therapy

Therapy, 6th ed., eds. Hopkins,

Occupational

1: Recent Ethical Issues in New Zealand

Table

Prlnclples

Ethlcal

Autonomy

Beneficence

Beneficence/utilitarianism

Utilitarianism

53

Group

Disadvantaged

with Cancer

Women

disordered (Maori) prisoners

Mentally

with physical disability

Adults

Adults disabled by illness

Smith, N.D., Philadelphia, J.B. Lippincott,

H.L.,

1983.

P.C., Spencer, F.M., Johnson, M.

Ostrow,

The cost-effectiveness of rehabilitation, Rock-

eds.,

The American Occupational Therapy As-

ville,

Inc., 1987.

sociation,

J., "Attitudes towards cardiopul-

Petrie,

resuscitation in a group of people with

monary

disability," New Zealand Medical Journal,

severe

100:563-64.

1987;

Commission on Social Policy, The April

Royal

Wellington, The Commission, 1988.

Report,

C.D., Introducing quality assurance, K.F.

Shaw,

paper No. 64, London Kings Fund

Project

Office, 1986.

Publishing

C.E., Setting standards, Quality As-

Shaw,

Project, KFC No. 87/129, London

surance

Fund Publishing Office, 1987.

Kings

R., Majory Warren, "Lecture 1988:

Tallis,

in rehabilitation," sponsored by

Measurement

Medicine Journal.

Geriatric

Have, H., "Ethics and economics in health

ten

In Medical ethics and economics in health

care,"

eds. Mooney G. and McGuire A.M. Ox-

care,

Oxford University Press, 1988.

ford,

D.W., "Comments on medical ethics

Walton,

the future: a commentary on Andre de

for

Metamedicine, 1982; 3:121-4.

Vries,"


and Ethical Issues:

Disability

Point of View from the Netherlands

A

Yolan Koster-Dreese

by

President, Dutch Coucil of the Disabled, Utrecht

Vice

How is the disability movement

1.1

in the Netherlands?

structured

the course of the years it has become

Over

to me that we in the Netherlands have

clear

an exceptional structure of organisa-

developed

representing the handicapped, patients,

tions

patients, parents of the mentally

psychiatric

and parents of the physically

handicapped

Because this complicated form of

handicapped.

has continued to be reasonably

organisation

it appears to me to be worthwhile to

effective,

you a glimpse of how it functions.

give

Clients Union (Clientenbond) is a

The

group of (former) psychiatric patients,

lobby

in cooperation with the National Patients

who,

(Landelijke Patienten Raden) for the

Councils

sector-therefore patients within

mental-health

of the mental-health sector-sup-

institutions

the interests of its members. Examples:

ports

to apply electro-shock therapy, access

whether

personal files, arrangements concerning

to

admission, income-earning posi-

compulsory

both within and outside the institutions,

tions

right to work, the cultural input, etc.

the

Federation of Parents' Associations

The

Van Ouder Verenigingen) of the

(Federatie

handicapped is a cooperative

mentally

of four associations arising from

framework

and formed by parents who have

institutions

as their point of departure their

adopted

and their own common interest. For

children's

the quality of services within the in-

example:

opportunities for home nursing,

stitutions,

work environments, financial

protected

special education, etc.

facilities,

Dutch Council of the Disabled (Gehan-

The

is a cooperative framework of 60

dicaptenraad)

of people having a physical dis-

organisafions

ability. This council, along with the organisa-

55

representing specific services, seeks to get

tions

of the barriers which cause some people to

rid

handicapped and also tries to promote the

be

that "being different" need not be a nega-

idea

quality. This is achieved by, for example,

tive

on the position in the labour-market,

focusing

provisions, the quality of assistance

financial

equipment, integration in the educational

and

access to society and the residential en-

sector,

etc.

vironment,

council, along with the organisations

This

specific services, seeks to get

representing

of the barriers which cause some people

rid

be handicapped and also tries to

to

the idea that "being different"

promote

not be a negative quality.

need

organisations all have an interest in the

These

in which this health-care system meets the

way

of their members. They have therefore

needs

to join forces in the field of health care

decided

have formed the National Patients/Con-

and

Platform (Landelijk Patienten/Con-

sumer

sumenten Platform).

addition to the four organisations, two

In

consumer organisations active in

specifically

Netherlands, namely the Consumer As-

the

(Consumentenbond) and Consumer

sociation

(Konsumenten Kontak0 form part of

Contact

LP/CP in addition to a number of five

the

which are involved in the health

organisations

sector because of their particular view-

care

and whose members need not necessarily

point

chronically ill or handicapped (i.e. Child and

be

In addition, other participants in the

Hospital).

include the joint elderly associa-

consultation

tions and the two largest trade union federa-


Altogether, the LP/CP represents around

tions.

of the Dutch population insofar as health-

11%

care is concerned.

addition, a number of organisafions which

In

with hereditary diseases and/or congeni-

deal

deformities have organised themselves into

tal

Association of Co-operating Parents' and

the

Organisations (Verenigde Samen-

Patients

Ouderen Patienten Organisaties).

werkende

Federation of Parents' Associations and

The

30% of the Council of the Disabled,

around

with a few organisations which are not

along

of either group, together make up this

members

The VSOP is especially concerned

association.

providing information on hereditary con-

with

encouraging scientific research and in-

ditions,

public awareness in general about

creasing

hereditary diseases.

What is the position with

1.2

to the decision-making

respect

echelons?

would of course be especially interesting to

It

out to what extent these organisafions have

find

an influence on policy in the Netherlands.

I begin by discussing the VSOP, I can safely

If

that their influence is large and is still in-

say

The exceedingly thorough and sincere

creasing.

in which the experiences and opinions of

way

the parents of children with inherited

especially

congenital disorders has been brought

and/or

in recent years has led to, among other

forward

a substantial number of centres being set

things:

to provide information on this issue, that

up

scientific investigation is taking place,

much

the Minister of Public Health could be

that

through the intervention of the VSOP

corrected

the publication of a report on the applica-

after

of information about hereditariness, that

tion

excellent level of cooperation has been

an

between researchers, physicians,

achieved

and the VSOP and that a common front

ethicists

presented to the government.

is

in all it is a powerful organisation with a

All

position vis-a-vis the decision-making

strong

layers.

56

the fact that the LP/CP is a relatively

Despite

organisafion, it nevertheless holds a

young

position. The government and the

promising

sector view the patients/con-

health-care

organisation as an equal negotiating

sumers

in its entirety and believe that it should

partner

at least as much as influence as the

have

of the service, the insurers or the

providers

The LP/CP is "in", received a lot

government.

attention and in any case gets enough money

of

the government at present to carry out its

from

In addition to the national platform there

tasks.

now also provincial and regional platforms.

are

until now the LP/CP was more or less

Up

for helping to bring about legisla-

responsible

which sets the position of the patient

tion

and duties) and for developing a model

(rights

agreement between the suppliers of

negotiating

medical services and patients. In the last

(para-)

years it was able to prevent medical

two

from fighting their wage dispute

specialists

the government over the backs of the

with

by means of strikes. The LP/CP chal-

patients

the specialists before the courts and won

lenged

time.

every

in Parliament much interest has

Especially

shown in the LP/CP, and its influence on

been

decision-making layers is substantial and is

the

all the time.

increasing

there are the organisations of the

Finally,

and/or their parents, who occupy

disabled

with all possible fields related to

themselves

interests. The withdrawal of the stigma of

their

handicapped from the charitable

being

or less-is of course a victory, but

sphere-more

not made life any easier for those con-

has

Nevertheless, this step has proved to be

cerned.

important in bringing about a

extremely

in attitudes.

change

the Netherlands we must get by without a

In

Rights Act and only have the constitution

Civil

which to resolve the various issues. In the

under

of employment a 5% quota has been en-

case

for physically disabled persons in all

forced

of our society; the accessibility to public

sectors

in increasing; it is becoming increas-

buildings

easier for handicapped children to attend

ingly

"normal" school; public transport is becom-

a


more and more accessible; the health ser-

ing

sector is increasingly willing to meet the

vices

formulated by handicapped persons

demands

and more and more people with a

themselves;

are, thanks to the training activities of

handicap

organisations, better able to deal with their

the

circumstances and take the right steps to

own

with this.

deal

influence on the decision-making layers

The

less deep but far more widely spread than

is

of the organisations mentioned earlier, and

that

most certainly be called substantial and

can

thanks to the increasing self-aware-

growing

among the disabled and their parents!

ness

Health on the micro, meso and

2.1

levels.

macro

is a very special concept. If you should

Health

me how do I feel, then my answer would

ask

probably be: Fine! I feel good, certainly not

most

I'm sitting comfortably, the company is

ill,

and I am doing something which I find

pleasant

pleasant-it is therefore logical that

especially

answer should be "Fine".

my

environment however, takes a different

My

"Isn't it wonderful that she can still make

view:

so useful despite everything" or '-Iow

herself

of her to carry on so carelessly, when she

stupid

has enough difficulties" and words to

already

effect which suggest that I cannot be

that

as a healthy person, let alone someone

regarded

who can function in a healthy manner.

or the government goes even further

Society

deciding in its wisdom that I am not healthy

by

to take part in the normal labour

enough

and therefore have to enjoy the

process

of welfare benefit.

privilege

other words, health is something for

In

to manipulate, for the environment to

society

and for the individual, well, probably

dictate

to emulate!

something

different our experiences of our

However

health may be, our environment and

own

is arranged in such a way that there are

society

consequences attached to the label "un-

serious

And these consequences are in turn of

healthy".

57

different our experiences of our

However

health may be, our environment and

own

is arranged in such a way that

society

are serious consequences attached to

there

the label "unhealthy".

influence in the way in which we oursel-

great

experience being "unhealthy". In other

ves

health is not only a certain physical and

words,

condition in which a person may

psychological

his or herself, but also a collection of

find

and economic determinants. And

sociological

determinants are culturally defined so

these

health in New York is a totally different

that

from health in Cairo, for example.

concept

health then be defined at all? Let us make

Can

attempt.

an

us begin at the micro level: one person

Let

to work normally despite suffering a

continues

bout of flu, while another stays in bed for

severe

few days. How can you compare these two

a

and what does this tell us about the

people

of health? You can compare them in the

concept

of noting that health is an individually

sense

concept. No one can therefore tell you

defined

you are healthy-if one looks long enough

that

will always find something that is not al-

one

right. You can only decide for yourself

together

you feel healthy (not that you are healthy).

if

you proceed from here depends especial-

How

on your character, education, circumstances

ly

cultural background.

and

on the micro level health cannot

Therefore,

defined.

be

this should be possible on the meso

Surely

then? How does my environment deter-

level

what is 'aealth': are appearances enough

mine

satisfy the norm, does the person concerned

to

like a healthy person, is he not perhaps

behave

instead of ill, is his family life in order-in

lazy

words all factors which are preferabe, not

other

on sound information. But the judgment

based

nevertheless swiftly passed, and I have here

is

used the word judgment because

deliberately

so much depends on this verdict. And if there


an old socialistic dream that society

From

makeable we have now landed in an

is

dream or perhaps

individualistic

that life is makeable. This

nightmare

leaves little or no room for "being

dream

different'.

one thing that is defined by culture then it

is

certainly is those judgments which set the

most

norms for health.

is therefore undefinable on the meso

Health

as well, even though we pretend that it is

level

possible.

any case, definition must be possible on the

In

level, because this is where health policy

macro

made, from the World Health Organization

is

And if you make policy you

downwards.

at least know what your goals are. The

should

government has chosen for an exclusive

Dutch

Health is the absence of illness. You and

definition:

know that this is a ludicrous definition, be-

I

if a body is healthy this is also because it

cause

undergone illnesses-whether in real form

has

in the form of vaccinations. Illnesses can

or

people aware of things which are not

make

properly (stress, poisoned food,

functioning

or equip people in order to deal better with

etc.)

or discomfort in the future. In other

illnesses

illness is a part of life! Nevertheless,

words,

policy is aimed at preventing ill-

government

least insofar as this is economically

nesses-at

This policy is brought about by means

feasible.

providing information, screening, vaccina-

of

scientific research and medical treatment.

tion,

addition, a proper health policy is also con-

In

to by means of safety measures, peace,

tributed

stability, proper housing facilities

economic

a sound environmental policy. But the

and

also uses its definition of health to

government

people or otherwise manipulate them.

exclude

process of medicalisation is a good ex-

The

of this, as is the difficult access for the

ample

"non-healthy" to the labour market.

Is there any choice?

2.2

freedom do people therefore have to do

What

58

their health, their lives as they see fit? And

with

the increasing knowledge and the

does

of various new techniques make

development

a choice possible?

such

is debatable whether a social consensus

It

ever arise around the ethical dilemmas

will

which we are confronted because of the

with

developments in the natural sciences. For

rapid

first time in the history of mankind it is

the

to influence the form of life: fun-

possible

involvement both before conception

damental

during pregnancy as well as in the later

and

of life is now possible by means of

stages

or replacement. This technical

manipulation

must be seen against the background of

ability

medical practices. This medical practice

current

based on two pillars, namely epidemiology

is

the urge to treat, to execute a therapy. On

and

basis of epidemiology it is determined what

the

be considered as "defective" and cur-

should

medical training ensures that a doctor will

rent

to treat such defects. This, added to the

want

view that health is an absence of

government

opens a new Pandora's box. It would

illness,

that just about everyone has been

appear

along into the "eternal life syndrome"

dragged

the drive for "perfection". From an old

and

dream that society is makeable we

socialistic

now landed in an individualistic dream or

have

nightmare that life is makeable. This

perhaps

leaves little or no room for "being dif-

dream

And because "being different" is the

ferent".

point of departure of an organisation such

basic

the Dutch Council of the Disabled, we now

as

serious problems.

experience

the Netherlands there are more and more

In

who choose to no longer have their ill-

people

or defect treated. This applies both to

nesses

sicknesses and to incapacitat-

life-threatening

illnesses. This happens for various reasons:

ing

treatment is sometimes worse than the ail-

the

treatment does not produce the desired

ment,

the treatment focuses one on the illness

results,

not on one's life, no confidence in medical

and

etc. Running parallel to this

knowledge,

is the application of euthanasia

development

an issue which was the subject of a

techniques,

debate in our Parliament this spring.

fierce


one person decide for another whether

Can

quality of his or her life is adequate?

the

but it nevertheless does happen and it

No,

uncertain which criteria play a role.

is

decide for their children, children

Parents

for their aged parents, doctors

decide

for their patients and the govern-

decide

decides for its citizens.

ment

two developments recently found a

These

overlap: after consultation with the

tragic

a team of doctors decided not to operate

parents

the ileus of a newborn infant born with

on

syndrome, so that the baby died within

Down

next 48 hours. Motivation: the quality of life

the

a "mongol baby" is so poor that it is not worth

of

effort of helping him overcome such a

the

defect at birth. This decision led to

simple

upheaval and is now the subject of

tremendous

judicial and ethical inquiry.

a

key concept to this debate is clear: the

The

of life. Can one person.decide for another

quality

the quality of his or her life is ade-

whether

No, but it nevertheless does happen and

quate?

is uncertain which criteria play a role. Parents

it

for their children, children decide for

decide

aged parents, doctors decide for their

their

and the government decides for its

patients

citizens.

is in this evaluation process, the identifica-

It

of criteria of how to approach and handle

tion

the concept of a

quality of life, that organisa-

representing people with a handicap

tions

play a crucial role. They can contribute

should

issues drawn from their own experien-

crucial

to the debate, throw light on the quality of

ces

different" and provide living proof of

"being

despite, or perhaps because of, their

quality

limitations.

Applying knowledge of

2.3

as a choice

hereditariness

can we deal with the new knowledge?

How

role should it play in our decision-

What

59

making?

thing is certain: more and more informa-

One

is being provided on the physiological

tion

of our lives, the DNA information. Given

basis

background to my story it is not amazing

the

I am a proponent of the need to follow this

that

with great interest and caution.

development

everything develops according to the ex-

If

trends then we will soon know a great

pected

about the expected defects, the cause or

deal

of sicknesses and defects, and about the

origin

some people have to certain types

susceptibility

of sicknesses and defects.

that matter we know nothing more about the

For

to which people are capable of dealing with

extent

therefore also its illnesses, traumas and

life-and

grief.

an individual you can use this informa-

As

in two ways:

tion

with preventative intentions by, for ex-

a)

living your life in such a way that you

ample,

the slightest chance of activating your

avoid

to a certain illness, by means of

susceptibility

with the cause of the illnesses or finally

dealing

avoiding a life in which illnesses and defects

by

be expected;

can

as information to equip yourself against

b)

which can be foreseen, so enabling you to

that

the right measures at an early stage to

take

an adequate treatment and start develop-

begin

that part of the body and personality which

ing

not be changed by the susceptibility and to

will

the part which will be changed in such a

train

that it can deal with the defect.

way

the societal level, decisions will be taken

At

will also be based on this information. I

which

try to illustrate this with a number of ex-

will

amples.

The government says it supports the

a)

of its citizens to choose in freedom, but

ability

the same time takes such measures that the

at

of health care drops, so that it becomes

level

"unattractive" for parents to allow a

especially

child with a handicap to be born.

b) Insurance companies will base their


on hereditary information. This could

tariffs

to people with a poor life-expectancy diag-

lead

paying a relatively lower tariff for health

nosis

and a high tariff for life insurance.

insurance

In dividing up the funds in the health-

c)

sector, someone with a favourable prog-

care

will be more eligible for life-increasing or

nosis

treatment than someone not

quality-improving

to live much longer: he would be abad

expected

investment.

Companies will try to put the right

d)

in the right jobs: you will fit people

people

to the place of employment, instead

according

adjusting the place of employment to the

of

of the people.

needs

Labour disability benefits are refused, for

e)

example because someone has not done every-

I must note with some bit-

Nevertheless,

that I, as a person with a handicap,

terness

arrived in a position in which I must

have

able to demonstrate the quality of my

be

existence in order to make this life

own

as an option for others.

attractive

in his or her power to avoid the cause of

thing

disability or to treat it in time.

the

this summary I have for the time being not

In

that some people could be so

considered

by means of genetic engineering or

modified

that they would be better suited

manipulation

certain conditions. People have tried to con-

to

me that this is not possible at present and

vince

probably will never even be considered

most

I have my doubts but nevertheless

desirable.

to restrict myself to the realities-as far as

wish

know them.

I

to

How people's direct environment will react

individual specific choices can already be

In our society the number of children

noticed.

with Down Syndrome is declining rapid-

born

And if such a child is born after all, few

ly.

will hesitate before asking whether am-

people

niocentesis was carried out-in other words:

60

this was something you could and

"Surely

have prevented".

should

cautiously a movement is being created

Very

the Netherlands which is critical of the

in

described above and insights are

developments

to be created into the possible conse-

beginning

of any application of the acquired

quences

I suspect that the organisations

knowledge.

handicapped people will play a

representing

role in this because this is where the

leading

lies in enduring a disabling illness

experience

handicap. Meetings such as the one today

or

act as a catalyst in this process.

will

I must note with some bitter-

Nevertheless,

that I, as a person with a handicap, have

ness

in a position in which I must be able to

arrived

the quality of my own existence in

demonstrate

to make this life attractive as an option for

order

others.

What's going on in Europe?

3.

organising committee has asked me to

The

you some insight into the way in which

give

developments are dealt with in

technological

In this it has set a difficult task for me

Europe.

on the one hand I am not sufficiently

because

of what is happening scientifically in this

aware

and on the other because there is little

field

on what the various organisations

information

Europe of handicapped persons think about

in

this. This last point is not so surprising if only

all

look at the reactions in your own environ-

you

to the developments surrounding

ments

And let us be honest: very many

hereditariness.

with a handicap themselves suffer

people

dilemmas when they have to take a

serious

over a possible new generation or the

decision

of new technologies. And there is

application

a marked difference in the way that the

also

of disabled children respond and the

parents

disabled people themselves respond.

way

are, in general, inclined to spend a great

Parents

of energy in searching for the right treat-

deal

they often desperately look for the cause

ment,

sooner have the tendency to ensure that

and

handicaps do not occur again. Disabled

such

themselves in general tend to think of

people

with a greater degree of nuance. Of course,

this


way of conclusion I can note the

By

citizen is barely concerned with

average

technological developments and that

the

is no question of social consensus.

there

the disabled there is the category which

among

also continually searching for the ultimate

is

but there is also a large group which

treatment,

been able to give the handicap its own place

has

their lives and are less or not at all involved

in

interested in treatment. For so far as I know

or

is something that you will find across

this

Strong parents' organisations with

Europe.

contacts in the scientific world and the

good

divided organisations of disabled persons

more

each view the issues from their own

which

perspectives.

I indicated earlier, a movement is slowly

As

in the Netherlands which adopts

developing

"crippled is beautiful" philosophy in their

the

towards technological developments.

attitudes

these sorts of movements are still so new

But

they are barely noticeable, not only in the

that

but also, I believe, in other

Netherlands

countries. This on top of the fact that

European

the Netherlands the movement of disabled

in

is especially well organised, in contrast

persons

most other European countries, with the ex-

to

of Sweden, Norway and Finland.

ception

the other hand each is taking place in this

On

in West Germany. For so far as I have been

area

to make out the vanguard of this move-

able

is a group of women who, aware of the

ment

of the Hitler era, have strongly

experiences

the registration of all sorts of personal

resisted

including hereditary information. And a

data,

of militant handicapped persons have

number

several occasions disrupted meetings at

on

matters such as euthanasia, quality of life

which

abortion due to defects were discussed. So

and

as I know there is also strong resistance in

far

against abortion in the cases of defects

Sweden

against the application of euthanasia. But

and

in West Germany nor in Sweden is there

neither

evidence of a policy on these sorts of issues

any

by the organisations of handicapped

conducted

persons.

61

developments have taken place on the

Some

Community level. On December

European

1988 and on January 30th, 1989 discus-

19th,

were held in the European Parliament on

sions

ethical and legal problems related to genetic

the

and a disposition to approve a

manipulation

research program in the field of health

specific

predictive medicine, analysis of the

care:

genome and artificial in vivo and in

human

fertilisation. The documentation of these

vitro

dealing with ethical and legal

sessions

in relation to genetic manipulation is

problems

interesting but unfortunately too

exceptionally

to summarize in the context of

wide-ranging

lecture. I have brought a number of copies

this

this document with me and those who are

of

interested are free to obtain one.

is much at stake, namely our in-

There

and that is something more than

heritance

old castles, hieroglyphics, the Bible

simply

democracy-it is the inheritance of life

and

itself.

And in the end...

4.

way of conclusion I can note the average

By

is barely concerned with the technologi-

citizen

developments and that there is no question

cal

of social consensus.

and politics have until now been ex-

Science

successful in keeping these

ceptionally

under wraps and the matter has

developments

become urgent. However, the Dutch

therefore

intends to organise a national

government

of talks on these issues. I fervently hope

round

they will do this in close cooperation with

that

movements of the disabled and their

the

and that other European countries will

parents

able to derive lessons from the way this

be

will develop.

process

is much at stake, namely our in-

There

and that is something more than

heritance

old castes, hieroglyphics, the Bible and

simply

democracy-it is the inheritance of life itself.


Shall Live or How Shall They Live?

Who

and Professional Perspectives on

Consumer

Treatment/Non-Treatment Decisions

Joseph M. Kaufert, Ph.D. and Patricia A. Kaufert, Ph.D.

by

of Manitoba, Canada

University

Ethics, the Consumer

Biomedical

the Rehabilitation Professional

and

analysis of the ethical implications

Conventional

medical technology has focused on technology as

of

expression of the mastery by medicine over the

an

of life and death. Medical ethicists have

processes

the right of the consumer to discontinue life

debated

relative to the obligation of the health profes-

support

to preserve life and prevent death. We are

sional

in this paper with the way in which this

concerned

is being framed by the clinicians and bio-

debate

ignoring the voice of the consumer, par-

ethicists,

the voice of the disabled consumer. The

ticularly

will focus on the criticisms that the latter

paper

have made of clinicians and ethicists for their

group

of an awareness of the historical context of

lack

or non-treatment decision making. They

treatment

complain that the economic realities, including

also

provision of independent living options, which

the

be an important dimension of the debate over

should

support technology, have been ignored by

life

and ethicists. Finally, in discussing the

clinicians

of the medical professional in the tran-

involvement

from passive to active euthanasia, this paper

sition

review the attendant social and political risks

will

the same critical perspective as the disabled

from

consumer.

Center Report

Hastings

participants in the Ethical Issues in Dis-

All

and Rehabilitation symposium in Den-

ability

were given copies of a Hastings Center

ver

entitled Ethical and Policy Issues in

Report

Medicine*. In this report, Caplan,

Rehabilitation

and Hass (Caplan et al. 1987) try to

Callahan

a wide range of the moral and policy

address

issues which arise within the context of

*Reprinted in full in section four of this report.

63

In this paper, we have used this

rehabilitation.

to examine contemporary professional

report

governing consent decisions, truth tell-

values

paternalism and equity in rehabilitation

ing,

long term support. We will argue that the

and

of the role of the professional

representation

by Caplan et al. (1987) reflects the tradi-

expert

preoccupation of both bioethicists and

tional

with decision-making at the level of

clinicians

individual physician-patient relationship.

the

importantly, many professionally

Most

in this debate, whether as

engaged

or specialists in rehabilitation,

ethicists

ignored the fact that technology has

have

made it possible to provide a higher

also

of life for people on life support

quality

but that the resources necessary

systems,

achieve this goal are under threat.

to

will also suggest that the report not only

We

the dominant role of the clinician in

reinforces

decisions, but focuses on the allocation

ethical

scarce medical resources to maintain life,

of

many of the economic and socio-

ignoring

issues involved in sustaining the

political

of that life. Caplan et al., (1987) consider

quality

problems of balancing the rights of the in-

the

against the rights of society in

dividual

to extend or withdraw treatment;

decisions

in considering the ethical and policy

however,

involved in resource allocation for com-

issues

care, they give responsibility for

munity

to the rehabilitation professional

decisions

rather than the individual consumer.


perspective on the potential conflict

Our

professional and consumer con-

between

of lt:e support technology has been

trol

by experience in research and ad-

framed

work with people who have

vocacy

on mechanical ventilation since

depended

polio epidemics of the 1940"s and

the

1950"s.

the third section of our paper we will

In

the prospects for demedicalization

examine

will review some of the dilemmas involved

and

increasing consumer control over decisions

in

life support. We will suggest that by

about

debate on whether the individual con-

focusing

should be allowed to control life sustain-

sumer

treatment, attention has been distracted

ing

other issues. Most importantly, many

from

engaged in this debate, whether

professionally

ethicists or specialists in rehabilitation, have

as

the fact that technology has also made

ignored

possible to provide a higher quality of life for

it

on life support systems, but that. the

people

necessary to achieve this goal are

resources

threat.

under

overriding concern in this paper is with

Our

interface between individual rights and

the

control of technology and resour-

professional

We will argue that when rehabilitation

ces.

discuss the "right to die", they should

ethicists

engage the right of the consumer to the

also

necessary for life, when the quality of

means

life depends on the availability of technol-

that

and a wide array of personal care services.

ogy

debates over resource allocation

Furthermore,

move beyond professional and ad-

should

defined policy considerations in

ministratively

allocation of resources, but should deal with

the

rights of consumers to articulate their

the

for resource use.

priorities

Framework

Research

perspective on the potential conflict be-

Our

professional and consumer control of life

tween

technology has been framed by ex-

support

in research and advocacy work with

perience

people who have depended on mechanical ven-

64

since the polio epidemics of the 1940's

tilation

1950's. In the final sections of this paper we

and

will present a

brief case study describing the

of Canadian consumers in negotiat-

experience

the reorganization of a home respiratory

ing

program (Locker and Kaufert, 1988;

care

and Locker 1989). Ventilator users in

Kaufert

are currently demanding an expan-

Manitoba

in the technological support and personal

sion

services which enable them to continue

care

within the community. These consumers

living

argued that the ethics involved in long

have

life support must extend beyond the

term

to accept or discontinue treatment.

decision

have asserted their rights to be involved

They

decisions about the distribution of scarce

in

They have argued for the right of the

resources.

impaired person to live outside institutional

are being given the right

.consumers

discontinue life support, but are not

to

provided with the resources to create

being

self-directed life within the com-

quality,

munity.

They have insisted on the respon-

controls.

of the policy-maker to incorporate con-

sibility

as well as professional expertise into the

sumer,

process.

decision-making

the conference, we have added a

Since

to the original paper in which we

postscript

some of the statements made by con-

discuss

advocates speaking at this conference.

sumer

concern, as it was also our concern in this

Their

was that consumers are being given the

paper,

to discontinue life support, but are not

right

provided with the resources to create

being

self-directed life within the com-

quality,

munity.

and Consumer

Professional

on Quality of Life

Perspectives

and Discontinuation of

Assessment

Treatment

have acknowledged disability

Bio-ethicists

a consideration in their arguments since they

as


evolution of ethical principles

.the

rehabilitation medicine owes more

within

the perspective of the health profes-

to

than the consumer rights advocate.

sional

become involved in ethical questions aris-

have

from decisions to maintain or discontinue

ing

supports. The classic example has become

life

decision to place (or maintain) a chronically

the

patient on a ventilator against their

impaired

to discontinue life support. The debate has

wish

on the question of who should control

focused

life and who should make the decision to

this

off the system.

turn

Life Is It?"

"Whose

dilemma has been dramatized in stage,

This

and television programs, most notably in

film

play and film, "Whose Life is it Anyway?".

the

subject was the different responses made

The

care-givers to the demands of a disabled

by

that life-sustaining treatment should be

patient

The initial refusal of the health

discontinued.

involved is couched in terms of

professionals

assertion of their medical authority and ex-

an

They also argue that the competence of

pertise.

patient to make informed decisions is

the

during the initial period of post

diminished

stress. The crux of the drama turns on

traumatic

patient seeking legal counsel, which leads

the

a legal decision that the patient is "com-

into

to evaluate the implications of his/her

petent"

and that they want to make this

decision

while they are competent and in con-

decision

of their treatment situation. By focusing on

trol

decision between life or death, this par-

the

drama conveniently assumes that the

ticular

negative prediction which the patient

very

relative to the quality of life experience

makes

ventilator support is valid. The probability

on

that the patient making the final decision has

is

knowledge about the course of the

insufficient

and alternative approaches to living

illness

life-support systems in the community.

with

authority of the medical expert is em-

The

but not the potential role of the health

phasized,

and rehabilitation professional in provid-

care

and prioritizing information. Indeed,

ing

65

the clinicians in this drama nor the

neither

appear to give much detailed considera-

patient

to alternatives to institutional care. Any

tion

of the resources which may be re-

discussion

quired to sustain a

"quality" existence, as dis-

from the minimal medical and

tinguished

support required to sustain life, is

technical

lacking.

notably

particular drama is the best known, but

This

ethics literature thrives on case studies and

the

many parallel examples. The problem

includes

most of these case studies is that they

with

decision making by stripping

'decontextualize'

the social context. Consideration of the

away

commitments necessary to provide an

resource

quality of life are ignored. These

achievable

studies describe the various actors in-

case

volved in a

decision, but the presence of in-

who actually live on life support

dividuals

is rare. The disabled consumer rights

systems

does not wheel into these dramas to

advocate

as a peer counsellor, speaking to the

serve

quality of life achievable from their

potential

experience of actually living with a life

personal

system.

support

suggest that the approach to decision-

We

portrayed in dramas, such as "Whose

making

is it Anyway", combines the lay stereotype

Life

life lived on a support with the model of the

of

patient offered by the rehabilitation

dependent

It is based on their view of proper

professional.

relationships rather than the

provider/patient

vision offered by the consumer ad-

alternative

In the next section, we will examine how

vocate.

evolution of ethical principles within

the

medicine owes more to the

rehabilitation

of the health professional than the

perspective

rights advocate.

consumer

Issues in Medical

Ethical

Rehabilitation

detailed examination of the Hastings Cen-

A

Report reveals the sources of current interest

ter

rehabilitation professionals in treat-

among

or non-treatment decision-making in-

ment

chronically impaired individuals.

volving

et al. (1987) emphasize that interest in

Caplan

ethical decisions within the field of rehabilita-


is relatively new. They contrast the ethical

tion

made in acute care with those to be

decisions

in rehabilitation medicine:

made

is clear then that medical rehabilitation dif-

It

in many respects from emergency or

fers

care. It is also clear that interest in uni-

acute

ethical issues of rehabilitation is on the

que

It is therefore essential that both

rise.

and those who deliver or receive

bioethicists

services identify the salient

rehabilitation

dilemmas and determine whether ethi-

moral

analysis based on emergency or acute care

cal

are adequate. (Caplan et al. 1987,

paradigms

3) p.

of the underrepresentation of

Discussion

examples from rehabilitation medicine in

case

ethics literature, Caplan et al. (1987)

the

the emergence of rehabilitation as a

describe

specialty. They suggest that

multi-disciplinary

of its focus on chronic illness and im-

because

ethicists saw rehabilitation medicine

pairment,

an area which lacked the excitement of other

as

such as neonatology or emergency

specialties,

They preferred the combination of

medicine.

technology and "heroic" medical inter-

high

in life and death situations, seeing

ventions

such cases as the ideal subject matter for a micro

bio-ethicist is ill at ease with a situa-

The

in which the individual patient is

tion

in a series of relationships with a

engaged

of professional care-givers. Yet,

series

relationships may hold even more

these

for professional dominance and

potential

paternalism.

analysis of the application of moral prin-

level

(Caplan, et al. 1987). Case studies of

ciples

and disabled patients are missing in the

chronic

literature because of this preference for

ethical

the simple and the dramatic.

et al., suggest in the Hastings Center

Caplan

that another reason for the under-repre-

report

of cases from rehabilitation medicine

sentation

the biomedical ethics literature lies in the

in

multi-disciplinary character of this specialty.

66

necessitates the presence of

Rehabilitation

from several disciplines, each with

clinicians

definitions of their roles and obliga-

alternative

The presence of multiple decision-

tions.

complicates the situation. Bio-ethicists

makers

case studies in which they can con-

prefer

on the relationship between the in-

centrate

patient and the individual physician,

dividual

not multiple physicians or

rehabilitation ex-

Rather than a single code for a single

perts.

rehabilitation medicine requires a

physician,

of codes for a multidisciplinary team of

set

The bio-ethicist is ill at ease with

practitioners.

a

situation in which the individual patient is

in a series of relationships with a series

engaged

professional care-givers. Yet, these relation-

of

may hold even more potential for profes-

ships

dominance and paternalism.

sional

Consent in the

Informed

Provider/Client

Rehabilitation

Relationship

models of the provider/client

Alternative

are explored in the Hastings Cen-

relationship

Report as Caplan et al., (1987) try to identify

ter

ethical and moral premises of decision

the

in rehabilitation. They suggest that cer-

making

basic assumptions about information shar-

tain

and co-participation influence the way in

ing

treatment/non-treatment decisions are

which

The ethics and dynamics of power and

made.

in three models of provider/patient

control

are examined. The "traditional"

relationship

emphasizes a paternalistic structure in

model

clinicians make primary decisions in the

which

"best interest"; the physician decides

patient's

what information the patient "needs to

on

A second, more egalitarian, approach is

know".

the "contractual" model; clinicians are

labelled

for providing care under a contract

responsible

by both patient and clinician. The third

agreed

the "educational" model, is proposed

model,

Caplan et al. (1987) who see it as more sen-

by

to the "evolving" capability of the recent-

sitive

impaired person (Caplan et al. 1987:11). By

ly

argument, the "educational model" is

their

appropriate for guiding ethical decision-

more

making in rehabilitation, partly because it gives


providers leeway to function in a more

the

capadty during the initial stages

paternalistic

care. They justify infringements on patient

of

during the early stages of rehabilita-

anatomy

"in order to insure that subsequent choices

tion

truly reflective of informed voluntary

are

(C aplan et al. 1987:11)

deliberation."

Power Relationships

Traditional

Caplan et al., acknowledge the

Although

of applying models developed within

problems

care medicine to the situations en-

acute

within rehabilitation medicine, their

countered

to the negotiation of informed con-

approach

is based on support for relatively tradi-

sent

power relationships. The educational

tional

is based on the expectation that informa-

model

sharing and joint decision-making during

tion

early phases of the impairment must be

the

Power is concentrated in the

subordinated.

of the rehabilitation professional, who

hands

control initial decisions-making. In this

will

rehabilitation specialists are portrayed

model,

experts, the possessors of long range

as

about the progression of illness and

knowledge

impairment.

Report acknowledges that successful ap-

The

of the educational model will require

plication

establishment of mechanisms to monitor

the

capacity of the client to make autonomous

the

The rights of the patient to refuse treat-

choices.

are acknowledged. Caplan et al., state

ment

that:

may, if they choose, reject care that

Patients

known to be beneficial as long as such

is

are based upon voluntary informed

refusals

(Caplan et al., 1987:7).

choice

these qualifications, the problems of

Despite

patients with sufficient information

providing

the long term risks, benefits or consequences

on

treatment or non-treatment are emphasized.

of

than advocating a sharing of complete

Rather

and a co-participatory relation-

information

Caplan et al., (1987) justify an initial con-

ship,

of information by the rehabilitation

trol

citing his/her possession of uni-

professional,

knowledge about the progression of a disa-

que

bling condition. They write:

67

professionals in rehabilitation would

Many

acknowledge the priority that ought

readily

be accorded the principle of respect for

to

autonomy. But their clinical ex-

patients

with patients who suffered severe dis-

perience

injury or disease makes them

ability,

about the ability patients possess to

skeptical

informed, deliberate and reasoned

make

concerning risks and benefits of treat-

choices

(Caplan et al., 1987:7).

ment

Inherent Risks

limitations of the educational model

The

applied to decision on the termination of

when

are examined in later sections of the

treatment

Caplan et al., acknowledge the risks and

report.

for medicalization inherent in the

potential

however, they argue that power and

model;

are essential elements in the

coercion

process. They state:

therapeutic

capacity for free, voluntary choices may

The

to be facilitated in patients since it may

have

unrealistic to expect such capacities to be

be

in those who have suffered grievous

present

irreversible impairments. The challenge

and

medical professionals in rehabilitation

facing

frequently not how to respect autonomy, or

is

to obtain informed consent at every

whether

in the rehabilitative process but, rather,

stage

steps and activities, and with what de-

what

of persuasion or even coercion are moral-

gree

permissible in the hope of restoring

ly

autonomy (Caplan et al., 1987:11)

the risk of professional control is ac-

While

Caplan et al. (1987) focus on the

knowledged,

of the expert to guide the con-

ability

into making the "right"

sumer/patient

"Rightness" is defined by the

decisions.

specialist. Caplan et al. justify

rehabilitation

control over decisionmaking in the

physician

terms:

following

subjective judgments of team members

The

the ability of a patient to cope with im-

about

outside the rehabilitation setting

pairments

influence the kinds of assessments

strongly

about the rate of progress of the patient

made

et al., 1987:13).

(Caplan


decisions to discontinue care in

Most

do not involve direct

rehabilitation

of life support systems, but

withdrawal

rather with the discharge and referral

deal

a patient from a rehabilitation unit to

of

setting.

another

to Discontinue Care

Decisions

final sections of the report conclude with

The

critical examination of the implications of an

a

model with its emphasis an "evolv-

educational

relationship between providers and

ing

The authors recognize the problems

patients".

professional control over the assessment of

of

levels of competence and the dilemmas

client

discontinuing active rehabilitation. Most

of

to discontinue care in rehabilitation

decisions

not involve direct withdrawal of life support

do

but deal rather with the discharge and

systems,

of a patient from a rehabilitation unit to

referral

setting (Caplan et al., 1987). Such

another

are usually initiated by the profes-

decisions

and frequently are precipitated by

sional

constraints rather than some evolu-

resource

in the physician/client relationship.

tion

et al. (1987) acknowledge that the

Caplan

model gives the rehabilitation

educational

a great deal of discretion early in

professional

course of illness. They suggest that this

the

is complemented by a duty to active-

discretion

involve family members and patients in

ly

to end care. Yet, while recognizing the

decisions

and value of increased involve-

importance

by patients and family members, Caplan

ment

al., (1987) emphasize that the systematic col-

et

and documentation of information con-

lection

patient progress and plateauing

cerning

the primary responsibility of the

remains

professional.

Illustrating Current Models

Interviews

existence of both the paternalistic and the

The

model in rehabilitation medicine is

educational

Reviewing material from our in-

undisputed.

with ten respirator dependent in-

terviews

with post-polio respiratory

dividuals

68

we found that most of them had

impairment,

one or both of these models in their

experienced

with clinicians (Locker and

relationships

1988; Kaufert and Locker, 1989). They

Kaufert,

how clinicians had "guarded" and

recalled

revealed diagnostic and treatment

selectively

during the initial period of their

information

upon iron lungs and rocking beds.

dependence

described how they had taken the initia-

Many

asserting a level of independence by ob-

tive,

information about alternative

taining

living options, such as respiratory

community

care programs, or researching the

home

of alternative types of ventilators.

availability

recently, those who were experiencing

More

late effects of poliomyelitis (which further

the

their respiratory capacity and func-

reduced

ability) reported that clinicians had in-

tional

discussion about the necessity for future

itiated

Most were critical of the

re-institutionalization.

application of an "educational

continued

they argued that medical control was

model";

being exercised by clinicians whose claim

still

the right to interpret the trajectory of their

over

was exclusive and who still controlled

illness

medical, social and economic resources re-

the

for community care. For Caplan et al.

quired

however, such paternalism is justified

(1987),

the basis of prior clinical experience. They

on

state:

a greater latitude in physician

Moreover

seems justified when physicians

paternalism

other health providers know from pre-

and

clinical experience that a process of ac-

vious

and acceptance is necessary in

commodation

to allow patients to come to grips with

order

reality of irreversible impairments

the

et al., 1987:9).

(Caplan

Treatment/

Demedicalizing

Decisions

Non-Treatment

the face of arguments supporting continu-

In

direct and indirect professional control over

ing

to continue or withdraw life support,

decisions

medical ethicists have suggested that ces-

some

of treatment decisions should be

sation

In his address at the 1989 Polio

demedicalized.


the face of arguments supporting con-

In

direct and indirect professional

tinuing

over decisions to continue or

control

life support, some medical

withdraw

have suggested that cessation of

ethicists

decisions should be demedical-

treatment

ized.

Independent Living Conference, Dr.

and

Wikler noted a trend towards decisions

Daniel

to the continuation of life support for

related

on long term mechanical ventilation

patients

controlled by consumers rather than

being

(Wikler, 1989). According to Wik-

professionals

this demedicalization of decisions to dis-

ler,

treatment or withdraw life support

continue

has been influenced by changes in four

systems

areas:


in technology making available ef-

Changes

life support systems which are more

fective

controlled by the consumer in the

directly

home;

Changes in societal expectations about


control of technology develop-

professional



ing out of the 1960's cultural revolution;

emergence of the consumer rights and

The

living movements which have

independent

co-partidpation and informa-

emphasized

in professional/client relation-

tion-sharing

ships; and

precedents asserting patient-oriented,

Legal

than physician-oriented criteria for in-

rather

consent decisions.

formed

argued that these contextual factors

Wikler

created an environment in which

had

were increasingly comfortable with

physidans

clients and families to make decisions

allowing

discontinuing treatment. His analysis of

about

demedicalization process does not deal

this

however, with issues of continued

adequately,

control of decision-making. Profes-

indirect

exercise this control because they define

sionals

range of alternative treatment options and

the

the future quality of life.

predict

69

Ethics and Resource

Rehabilitation

Allocation

examination of consumer and profes-

Any

perspectives on treatment/non-treat-

sional

decisions must consider the impact of

ment

constraints and policy consideration.

resource

tend to focus on isolated micro-level

Ethicists

in the individual clinician/patient

issues

and ignore the macro-level con-

relationship

in the economic political context of care.

straints

however, are showing a growing

Clinicians,

in macro level ethical issues because of

interest

implications for the allocation of resources

the

control over programs. Caplan et al. (1987)

and

the linkage between professional

acknowledge

in macro ethics and control of resource

interest

They state:

allocation.

part the sudden spate of interest in

In

ethics is a response to increas-

rehabilitation

pressures to contain costs. Discussions

ing

the desirability of introducing some

about

of prospective payment or capitation-

form

financing into rehabilitation have en-

based

professionals in the field to examine

couraged

their moral obligations to both their

seriously

and to society (Caplan et al., 1987:3).

patients

statement reflects the particular policy

This

which are the product of the system

constraints

financing health and social services for dis-

of

people in the United States. However,

abled

and European rehabilitation profes-

Canadian

have showed similar interest in in-

sionals

resource allocation policy in

fluencing

decisions.

treatment/non-treatment

tend to focus on isolated micro-

Ethicists

issues in the individual

level

relationship and ignore

clinician

macro-level constraints in the

the

economic political context of care.

extension of the professional expertise

The

macro ethics and policy formation occurs

into

the clinician is asked to examine the level of

as

which is necessary to maintain a per-

support


with a given impairment in a specified care

son

Caplan et al. point out that profes-

setting.

have been led into examining:

sionals

level of support that ought to be

.the

available for those seeking rehabilita-

made

services. In attempting to decide the

tion

of support that society ought to provide,

level

is necessary to understand the nature of the

it

and goals that provider and patients

aims

to this phase of care. In large measure

bring

consensus as to the desirability and

social

of attaining goals set by those who

feasibility

rehabilitation determine the

provide

of public reimbursement for this

availability

of care (Caplan et al., 1987).

type

passage suggests that the technical ex-

This

to determine who can benefit from par-

pertise

kinds of care is, or may become, largely

ficular

prerogative of the health professional. It is

the

expertise, his/her notion of benefit,

his/her

is to guide the allocation of scarce resour-

which

The right to a "quality of life", as defined

ces.

the consumer is subordinated to the notion

by

"benefit" as defined by the technical expert.

of

representatives of the independent living

For

represented at this meeting, the

movement

will be to develop policy forums and

challenge

for decision-making which repre-

mechanisms

the expertise and power of the disabled

sent

more equitably.

consumer

The right to a

"quality of life", as defined

the consumer is subordinated to the

by

of "benefit" as defined by the tech-

notion

nical expert.

and Resources:

Ethics

Case Study

A

closing we will use a case study in which

In

are currently involved (as researchers and

we

to illustrate the potential conflicts in

advocates)

and professional perspectives on

consumer

of community-based respiratory

continuation

The case involves the past and present

care.

experiences of a group of individuals who

poliomyelitis during the epidemics

developed

the 1950's and who continue to use mechani-

of

ventilators and personal care services. The

cal

have been living independently in the

majority

since the late fifties or early sixties.

community

users in Manitoba, Canada, are

Ventilator

currently in a major policy debate with

engaged

and policy makers over their entitle-

clinicians

to resources for 24 hour support in the

ment

The provincial government has

community.

the development of a more unified,

proposed

administered respiratory home care

centrally

If this model is adopted, the more

program.

community-based support system,

informal,

has been developed over the past three

which

may be compromised. Consumers see

decades,

ability to maintain consumer-directed ser-

their

and even to live independently in the

vices,

as under threat.

community,

Development

Policy

developing a more systematic policy for

In

for respiratory home care, the

entitlement

has asked medical specialists to

government

with health policy-makers to develop a

work

of criteria for determining eligibility.

series

criteria will be used to create a set of

These

based on levels of impairment and

categories,

term survival prospects. Consumer repre-

long

argue that there is a risk of policy

sentatives

in the level of disability defined as

change

for program support and access to

qualifying

option of community-based living. Several

the

have expressed their fears that

consumers

with more extensive levels of functional

people

and greater care requirements would

limitation

forced to live in institutional settings or

be

'Fokus' units.

of Re-Medicalization

Possibility

from the perspective of these con-

Seen

this plan threatens them with a form of

sumers,

The provincial government

re-medicalization.

perceived as establishing mechanisms

is

which professional control over com-

through

care options will be vastly increased.

munity

control will be exercised through the

Medical

of the professional to predict the probable

right

of .impairment, to define the range of

course


over the allocation of the

Decisions

and social resources necessary

economic

sustain quality of life and independent

to

are not morally neutral.

living

options available, and to authorize

treatment

resources are needed. Taken in combina-

what

each of these potential sources of power

tion,

control has major implications for re-

and

or the extension of professional

medicalization

over the resources and opportunities for

control

living required for self-directed

independent

This situation does not fit the case scenario

care.

the usual cessation of treatment decision. Yet,

of

themes of control over information and the

the

allocation of scarce resources are very similar.

Conclusion

summary we would emphasize that the

In

dimension of treatment/non-treatment

ethical

is very different when one moves out

decisions

acute care medicine and into the lives of those

of

long term care and technological sup-

requiring

Community care decisions are less clear

port.

but they are also less visible. From the point

cut,

view of an ethicist, they lack the drama and

of

choice points associated with turning off

clear

life support system. Yet, for consumers faced

a

the loss of independence and re-in-

with

the withdrawal of tech-

stitutionalization,

supports may be critical not to

nological

per se, but to meaningful survival as

survival

by the quality of their lives.

determined

Dimensions of Decisions

Ethical

term support decisions may be con-

Long

within the framework of a micro-ethical

sidered

over the reciprocal right and duties of

debate

and professional and their engagement in

client

egalitarian and co-participatory relation-

an

We would argue for the necessity of a

ship.

analysis in which clinical and

macro-level

level decisions are clearly recognized as

policy

an ethical dimension. Decisions

containing

the allocation of the economic and social

over

necessary to sustain quality of life

resources

and independent living are not morally neutral.

71

to formalize the role of the profes-

Proposals

in ethical decisions at the micro level may

sional

the prospects for consumer advocacy

diminish

peer counselling. Focus upon the

and

relationship as the sole forum

provider/client

decision-making may take these decisions

for

of the political arena in which disabled

out

groups had become effective lob-

consumer

for their own rights. Instead, the shift

byists

to the individual provider/client relation-

back

risks the re-introduction of an individually

ship

framework of action. While we may be

based

the right to determine when we will

acquiring

both the impaired and temporarily able-

die,

people may risk losing the right to

bodied

how we will live independently with

determine

dignity.

Postscript

A

in the medical role in cessation of

Changes

decisions are closely associated with

treatment

issue of professional involvement in

the

Consumer representatives at the

euthanasia.

Polio and Independent Living Conference

1989

at this symposium have taken strong ex-

and

to the prospect of the role of the profes-

ception

being transformed from that of

sional

of life" to that of "facilitator" in the

"defender

of support systems. Several

withdrawal

at the post polio conference em-

speakers

that redefining professional roles and

phasized

governing treatment/non-treatment

values

medicine with a "slippery slope"

presented

from passive to active euthanasia.

leading

in Denver, including Hugh Gallagher,

Speakers

pointed out the risks which arise when the

have

involvement of clinicians further chan-

passive

from the role of facilitator to more active

ges

of intervention. Fears were expressed

forms

this form of active euthanasia may be more

that

in the case of an individual with a chronic

likely

stable condition, who depends upon life

but

systems. Spokespersons for European

support

consumer groups, including Theresia

disabled

and Yolan Koster-Dreese (Degener

Degener

Koster-Dreese, 1989), criticized the cur-

1989;

involvement of health professionals in ac-

rent

euthanasia. Gallagher and Degener

tive

described the historical linkages between an


neo-eugenics movement and Nazi

emergent

Aktion T-4 program (Gallagher,

Germany's

Other speakers alluded to both historical

1989).

contemporary examples of constraints on

and

autonomy of disabled people in decision-

the

involving continuation or cessation of

making

Several established a link between

treatment.

and political constraints on consumer-

social

decision-making and societal attitudes

directed

the rights of disabled people. As an

towards

of this form of thinking, a recent letter

extension

Yolan Koster-Dreese emphasized that

from

ethicists are creating only the il-

biomedical

of freedom of choice, when discussing

lusion

clients' right to discontinue treatment or life

the

We support the emergence of an ethi-

support.

debate which will properly engage the ques-

cal

of the extent to which such choices are

tion

if the resources necessary to sus-

constrained,

a high quality of independent life are not

tain

available.

References

Caplan, A.L., Callahan, D. and Haas, J.,

1.

and Policy Issues in Rehabilitation

"Ethical

Hastings Center Report (special sup-

Medicine".

Briarcliff Manor, New York, 1987.

plement).

Degener, T., "How Can the Disability

2.

Become More Active in Delibera-

Community

about Appropriate Uses of New Tech-

tion

and Health Resource Distribution in

nologies

Paper presented at Ethical Issues in

Society?".

and Rehabilitation, Symposium, Den-

Disability

June 23, 1987.

ver,

Gallagher, H.G., "Genetic Engineering-

3.

New Eugenics? Evolving Medical Attitudes

the

the Quality of Life". Paper abstracting

Towards

of By Trust Betrayed, Henry Holt Inc.,

section

at Ethical Issues in Disability and

presented

Symposium, Denver, June 23,

Rehabilitation,

1987.

Kaufert, J.M. and Locker D., "Rehabilita-

4.

Ideology and Respiratory Support Tech-

tion

Social Science and Medicine, Vol. 30,

nology,"

1989.

Forthcoming

Koster-Dreese, Y., "Disability and Ethical

5.

A Point of View from the Netherlands,"

Issues:

presented at Ethical lssues in Disability and

Paper

Symposium, Denver, June 23,

Rehabilitation,

1987.

Locker, D. and Kaufert, J., "The Breath of

6.

Medical Technology and the Careers of

Life:

with Post-Respiratory Poliomyelitis,"

People

of Health and Illness, Vol 10(1): 23-49,

Sociology

1988.

Wikler, D. "Ethical Theory, Medical Care

7.

Life and Death Decisions," presentation at

and

Fifth Polio and Independent Living Conference,

the

Louis, Missouri, June 3,1989.

St.

Acknowledgement

wish to acknowledge the editorial con-

We

of Dr. Laura Krefting and Jackie

tributions

in the development of this

Linklater

manuscript.


Across Social Movements on Reproductive

Debates

Genetic Engineering, and Eugenics

Technologies,

by Theresia Degener, LL.M., Frankfurt, Federal Republic of Germany

Example of the Coming Together

An

the Women's and Disability Move-

of

in the Field of Reproductive

ments

Genetic Engineering

Technologies,

Ethics

and

have been asked to talk about what is going

I

in the West German disability movement

on

in the international network FINRRAGE

and

respect to the ethical issues of reproduc-

with

and genetic technologies.

tive

I speak about these movements, I

When

as a member rather than a representative,

speak

because neither the West German

simply

of Cripple- and Disability Groups" nor

"Forum

has elected representatives such as

FINRRAGE

or directors. These are more or less

presidents

in the United States might be called grass

what

organizations.

roots

FINNRAGE

1.

stands for Feminist International

Finrrage

of Resistance Against Reproductive

Network

Genetic Engineering and it is an interna-

and

network of feminists who are critically

tional

with the development of reproduc-

concerned

and genetic technologies and their effects

tive

women. Finrrage emerged with the growing

on

that it is time to question the as-

awareness

that the new reproductive tech-

sumption

(NRT) and genetic engineering (GE)

nologies

benign or neutral. Rather they have to be

are

as (new) means of controlling population

seen

through controlling women's

quality

capacity.

reproductive

in Finrrage are scientists, scholars,

Feminists

politicians, lawyers, sociologists,

health

etc., as well as "non-professionals".

biologists,

women work within their country's

Some

community or hold positions in the

scientific

health care systems; others have left those

or positions as a result of their study.

circles

Background

the network was founded, which was

When

the second International Interdisciplinary

at

on Women in Groeningen, the

Congress

in April 1984, it was first called

Netherlands

(Feminist International Network on

FINNRET

Reproductive Technologies). The network

New

the initiative to monitor developments in

took

and genetic engineering and their

reproductive

on women worldwide. It soon became

effects

however, that the interrelationship be-

clear,

reproductive technologies and genetic

tween

have to be more emphasized in

engineering

to analyze the political impact of these

order

and the harm they do to women.

technologies

the network's first international con-

At

in 1985--called the Women's Emergen-

ference

is an international network of

Finrrage

who are critically concerned

feminists

the development of reproductive and

with

technologies and their effects on

genetic

women.

Conference on the New Reproductive Tech-

cy

women from 20 countries met in

nologies-74

Sweden to discuss the links between

V/illinge,

Engineering and Reproductive Tech-

Genetic

nologies.

two areas of science which may have

These

to be unrelated in the beginnings have

seemed

converged and depend on each other. The

soon

such as WF (in vitro fertilization) provide

NRT

raw materials (eggs and embryos) for

the

research and experimentation on

genetic

and human beings. And vice versa,

embryos

the experimentation with the NRT depend on


to whom these technologies are

Women

find themselves reduced to egg

applied

(surrogate) wombs, fetal environ-

donors,

reduced to interchangeable raw

ments,

in the process of human

materials

Women regain the status of

reproduction.

person only when it comes to the point

a

making selective (and mostly eugenic)

of

choices, such as selective abortion.

results of these genetic researches. The best

the

for this is the development of what is

example

preimplementation diagnosis. This form

called

prenatal diagnosis implies that IVF embryos

of

genetically screened before they are

are

Thus the "fittest" embryos can be

reimplanted.

within the IVF procedure in order to

chosen

the present low success rate of IVF.

improve

clarification of this interrelationship led

The

a change of the network's name to Finrrage.

to

Activities

Current

contacts were chosen for 20

National

who started to send to the interna-

countries

coordinator information from their

tional

medical and scientific sources, and

media,

on feminist actions. The international

news

group which until recently has

coordination

in England (Birmingham/London) has

been

assembling these and distributing infor-

been

packets to the national contacts. The

mation

contacts in turn have been distributing

national

publicizing this information in their own

and

Finrrage members also published

countries.

articles and started the new journal:

books,

and Genetic Engineering: Journal of

Reproductive

Feminist Analysis.

International

there are national contacts in

Meanwhile

30 different countries. The international

about

now resides in Frankfurt, West

coordination

Germany.

Link

Disability

the Em.ergency Conference there have

Since

been many other important meetings and con-

Finrrage has been involved in where

ferences

shared our experiences with respect to these

we

in our countries. And what we

technologies

to see is that NRT and GE especially affect

came

social status of two population groups all

the

the world: women and disabled people

over

of course are not distinct separate

(which

groups).

affect women in terms of control over

They

reproductive behavior and they affect dis-

their

people (as well as women in countries

abled

India, where femicide is being promoted

like

the use of pre-selection and sex deter-

through

in terms of eugenic population

mination)

policy.

analysis is a result of a certain feminist

This

to the reproductive ethics. This ap-

approach

analyzes the interrelationship between

proach

and GR, the historical background of these

NRT

and the social, economical and

technologies

context in which they are developed

ecological

applied. Because of this comprehensive

and

approach, women of Finrrage realized

feminist

what is promised by those who support

that

technologies, i.e., that these new tech-

these

enable women to exercise greater con-

nologies

over their reproduction and thus give them

trol

liberty--is false. As Gena Corea, one of

greater

founders of Finrrage said at the West Ger-

the

conference last October: "...all that

man

gain with these technologies is 'junk

women

liberty'".

technologies deprive women of what

These

been once their domain: childbearing and

has

Women to whom these tech-

motherhood.

are applied find themselves reduced

nologies

egg donors, (surrogate) wombs, fetal en-

to

reduced to interchangeable raw

vironments,

in the process of human reproduc-

materials

Women regain the status of a person only

tion.

it comes to the point of making selective

when

mostly eugenic) choices, such as selective

(and

abortion.

fetal defects have been prenatally

When

women are charged with the respon-

detected,

to decide whether or not to carry the

sibility

to term. But again, women are not

pregnancy


technologies force us to view

.these

as a biological risk, as a danger

disability

nature which has to be overcome by

of

the carriers of these human

eliminating

Thus the development and applica-

traits.

of these technologies contribute to the

tion

social acceptance of disabled

decreasing

people.

greater choice or liberty. What is given to

given

by these technologists is more "scien-

women

information on possible disorders or dis-

tific

of their potential child. And all women

abilities

left with is being in charge of quality control

are

their offspring, because having a disabled

over

child is not a true option to them.

woman knows what the social status

Every

disabled people and their families is all over

of

world: it is determined by discrimination,

the

foreclosed from the mainstream of

being

and being denied basic rights.

society

social conditions have not been created

These

the introduction of the NRT and GE.

through

we have heard at this conference, these so-

As

circumstances characterize the history of

cial

in human society.

disability

or Social Issue?

Biological

what has been introduced or better rein-

But

by the introduction of these new tech-

forced

is to see disability from the perspective

nologies

biological determinism thus reducing the

of

issue of disability. Disability is seen as

complex

entirely biological issue (genetic or non-

an

Totally ignored are those social cir-

genetic).

that make disabled people suffer,

cumstances

as institutionalization, environmental bar-

such

etc.

riers,

the NRT and GE are designed to

Because

nature--in an exploitive patriarchal

overcome

technologies force us to view dis-

sense--these

as a biological risk, as a danger of nature

ability

has to be overcome by eliminating the

which

of these human traits. Thus the

carriers

and application of these tech-

development

nologies contribute to the decreasing social ac-

of disabled people.

ceptance

underlying values are those of eugenics,

The

theory that has been used to justify physical

a

social oppression of minorities and women

and

more than a hundred years and which was

for

brutally realized within Nazi Germany's

most

hygienic policies.

racial

in Finrrage have realized that the

Women

and GE by no means give greater choices

NRT

women in terms of avoiding having a dis-

to

child. As a result of intense debates be-

abled

disabled and nondisabled women

tween

Finrrage, feminists in some countries

within

to think over the concepts of reproduc-

started

control and free choice. We have realized

tive

these concepts, as they are applied espe-

that

by supporters of these technologies, re-

cially

to very narrow visions of what kind of

late

is "normal", what kind of children are

family

enough to be born, and what sort of

"valuable"

responsibilities and roles women should have.

have realized that these concepts, as

We

are applied especially by supporters

they

these technologies, relate to very narrow

of

of what kind of family is "normal",

visions

kind of children are "valuable"

what

to be born, and what sort of

enough

and roles women should

responsibilities

have.

Diversity

Valuing

response to eugenic and patriarchal ethics

In

the NRT and GE, women in Finrrage

of

a feminist ethic which values diversity

promote

takes a more comprehensive look at the

and

world.

resolution which was passed in Comilla,

The

this March incorporates the con-

Bangladesh

of such a feminist ethical view, i.e., with

cept

to disability. Relevant sections are:

respect

Genetic and reproductive engineering

"3.

part of an ideology of eugenics which we

are


In this ideology human beings are

oppose.

as inherently inferior or superior.

viewed

leads to degradation, discrimination and

This

of oppressed groups; be they

elimination

disabled, people of certain colors,

women,

religions, class, or caste

races,

Our present finite world of resources

8

a richer diversity than that promised by

offers

engineering with its selective, and

genetic

philosophy.

patriarchal

Genetic and reproductive engineering are

9.

product of the development of science which

a

off by viewing the whole world as a

started

Just as a machine can be broken

machine.

into its components, analyzed and put

down

living beings are seen as consisting of

back,

components which can be viewed in isolation.

We are against any kind of bias and dis-

26.

against disabled people including

crimination

of genetic screening and counselling. We

that

oppose the human genome

particularly

within this context. Prenatal diag-

project

genetic screening and genetic counsell-

nosis,

do not offer the solution for disability.

ing

we demand the elimination of hazard-

Instead

drugs, radiation, hazardous chemicals at

ous

workplace and in the environment and a

the

to the problems of malnutrition and

solution

infectious diseases.

preventable

Disabled people must be integrated into

27.

and accorded full respect as human

society

The responsibility for caring for the

beings.

must be of social rather than of in-

disabled

dividual concern ."

The Activities of the "Forum of

2.

Groups" with Respect to

Disability

and Euthanasia

Eugenics

"Forum of Disability Groups" represents

The

more militant part of the West Germany

the

movement. The organization has its

disability

in activities which were undertaken in

roots

the International Year on Disability. We

1981,

that the celebrations and shows which

found

organized by the government and tradi-

were

disability organizations did not help to

tional

the situation of disabled people in

improve

Germany. We found, that instead of rais-

West

an awareness of disability-based dis-

ing

among the general public, these

crimination

and shows disguised the real

celebrations

of West German disability

shortcomings

e.g., institutionalization, separation

policy,

respect to education and other forms of

with

We expressed our view by dis-

discrimination.

the national opening celebration in the

rupting

of the year and organizing a

beginning

tribunal against human rights viola-

"cripples'

with respect to disabled people" in

tions

December of 1981.

then the forum has undertaken many

Since

Working closely together with the

activities.

has given us a louder voice. Presently

Greens

disability groups in approximately 20

local

towns are involved within the forum.

a.

Across Movements

Debates

issues of eugenics and euthanasia have

The

raised within the context of two debates in

been

Germany.

West

the beginning of the 80's fascism under

In

Germany became the topic of public

Nazi

to an extent that had never been reached

debate

This was the second wave of anti-fascist

before.

and publications about Nazi Germany.

debate

first took place in the 60's and was one of

The

topics of the students' movement. That

the

however, was confined to the

debate,

against the Jews and the SS State.

Holocaust

the last years, many historical studies

During

racial hygiene, euthanasia and forced

on

were undertaken and there was a

sterilization

of publications concerning this issue on

boom

market. A number of authors studied the

the

of disabled people through the

elimination

"euthanasia" programs, e.g. the

Nazis'

background, the structure of enfor-

ideological

the effects on society's view on dis-

cement,

etc. Thus, for the first time, the situation

ability,

disabled people under Nazi Germany and

of

the topics of "euthanasia", forced

especially

and the ideology of racial hygiene

sterilization

were discussed.


and more feminists became con-

.more

that selective abortion based on

vinced

screening discriminates against

disability

people and is closely connected

disabled

the ideology of eugenics, which was

with

ground on which racial hygiene grew.

the

second debate which also started in the

The

80's relates to the NRT and GE. This

early

has especially taken place within the

debate

movement but also reached groups

women's

At several conferences and meetings

beyond.

effects of these new technologies especially

the

respect to women and disabled people

with

discussed. A major topic has been the use

were

amniocentesis and similar prenatal diagnosis

of

for the purpose of screening of dis-

methods

The women's movementmand espe-

abilities.

those groups involved with

cially

a very critical attitude

Finrrage---developed

these technologies. Starting from the

towards

of pre-sex-selection and sex-deter-

rejection

more and more feminists became

mination,

that selective abortion based on dis-

convinced

screening discriminates against disabled

ability

and is closely connected with the ideol-

people

of eugenics, which was the ground on

ogy

racial hygiene grew.

which

disability movement has been involved

The

both debates from the beginning. Thus,

in

recent years, different social move-

during

e.g. anti-fascist groups, women's groups

ments,

disability groups have been coming

and

in West Germany. In sharing our

together

on these topics we were of course not

views

of the same opinion and the debate is

always

continuing. But what became clear is that

still

issues of eugenics and euthanasia as well as

the

question of reproductive freedom and selec-

the

abortion have to be viewed and analyzed

tive

a historical political perspective.

from

Development of Human Genetical

b.

and Policy in West Germany

Science

was only in 1972 that the first genetic coun-

It

office was opened to the general public

selling

West Germany. The predecessors--the racial

in

offices of the Nazismwere dosed in

hygiene

They had been involved in the Nazis'

1945.

on forced sterilization and

programs

which ended in the sterilization

"euthanasia"

killing of hundreds of thousands of dis-

and

people (or people who were called social-

abled

disabled). While science on human genetics

ly

regained respect and recognition within

soon

scientific community, it took some more

the

until their counselling offices could be

time

to the public in West Germany.

opened

the time activists of the disability and

By

movement started to study and

anti-fascist

on race hygiene and euthanasia in the

publish

80's there were about 40 genetic counsell-

early

offices all over West Germany.

ing

who took a close look at the publica-

Those

of genetic counselors as well as to their

tions

found that there was little difference

records

the racial hygiene institutes and

between

genetic counselling offices, neither

modern

respect to ideology nor with respect to

with

personnel.

who took a close look at the publica-

Those

of genetic counselors as well as to

tions

records found that there was little

their

between the racial hygiene in-

difference

and modern genetic counselling

stitutes

neither with respect to ideology

offices,

nor with respect to personnel.

From Racial Hygienicists to Human

(1)

Geneticists

most famous example of personal con-

The

is the career of Ottmar Von Verschuer.

tinuity

1942 he became director of the Kaiser-Wil-

In

in Berlin which was one of the

helm-Institut

research institutes of anthropology.

central

that time he was the head of the racial

Before

institute in Frankfurt where he worked

hygiene

together with Josef Mengele who later

closely

became "famous" for his experiments with


eings in Auschwitz. From Auschwitz

human

provided Von Verschuer with "re-

Mengele

material" such as the eyes of gypsies

search

had been murdered in Auschwitz.

who

Mengele, Von Verschuer did not have

Unlike

hide in order to escape prosecution after

to

had been freed. In 1951 he became the

Germany

of the institute of human genetic

director

in Minster. In 1958 this institute pub-

science

a study on the benefits of infanticide. The

lished

gave an estimate of 16,000 (disabled)

study

who could be "beneficiaries" of such a

children

program.

example is the biography of Fritz

Another

He was the co-author of books on human

Lenz.

that later became a standard reference

genetics

the Nazis. In 1937 he was involved in the

of

on forced sterilization of colored

program

and he was also engaged in the group

children

drafted a law on "euthanasia", which

who

never came into effect. Already in

however

Lenz became a professor on human

1946

in G6ttingen.

genetics

Schade, who was assistant to Von

Heinrich

in 1936 at the university of Minster

Verschuer

in 1942 followed him to the Kaiser-Wil-

and

in Berlin followed the same career

helm-Institut

Lenz and Von Verschuer. Despite his ac-

as

in the Nazi's program on forced

tivities

and other race hygiene programs

sterilization

became professor of human genetics at

he

G6ttingen University in 1966.

are only a few examples of those who

These

served the Nazis and without a break could

had

continue their career in post-Nazi Germany.

discuss in detail the impact of these

To

work on Nazi politics would exceed

people's

subject of this paper. Nevertheless, it should

the

kept in mind that there was a close link

be

the eugenic programs of the Nazis, e.g.

between

sterilization and "T-4 program"

forced

and the Holocaust. A link with

(euthanasia)

to conceptional preparation, as well as

respect

and technological preparatory

institutional

work.

78

Ideological Continuity and Develop-

(2.)

of Neo-Eugenics

ment

ideology of these "scientists" did not

The

either. What had been called racial

change

under Nazi Germany (and earlier) was

hygiene

called human genetics but the publications

now

this field still focused on the "burden" dis-

in

people, antisocial poor people and

abled

people place on society. Openly, human

foreign

discuss how to get rid of these

geneticists

the dominant means being steriliza-

problems:

and genetic counselling.

tion

counselling offices were charged

Genetic

genetic counselling (and registration of

with

with hereditary disabilities) as well as

people

recommendations. In order to dis-

sterilization

their work from their predecessors, it

tinguish

claimed that genetic counselling, prenatal

was

and sterilization of disabled persons,

screening,

performed by these offices (and connected

as

were only for the good of the individual

clinics)

his/her family. Not to improve the genetic

and

of the Germans, but rather to increase the

pool

happiness was the said purpose.

individual's

their work had nothing to do with what

That

Nazis did could be seen from the fact that

the

scientific bases were totally different from

their

hygiene.

racial

the public was confronted with the

However,

when in 1984 the work of one office

opposite,

Hamburg-Barmbeck gave rise to a scandal.

in

head of the office (Stockenius) had publish-

The

a book on "Debility of Unclear Genesis"

ed

was criticized by disability activists be-

which

cause of its eugenic contents.

documents, published in newspapers

The

other publications, revealed that the coun-

and

criteria of Stockenius and her staff were

selling

same as the Nazis had used for decisions on

the

sterilization and euthanasia. Stockenius

forced

the sterilization of people with

recommended

family histories, such as:

'conspicuous'

very simple", "cousin a permanent

"parents

"older brother nervous",

student",

and his brother alcoholics",

"grandfather

"uncle suicidal", etc.


approach to disability is biologi-

This

instead of viewing disability

cal

a social perspective. Societal dis-

from

against disabled people thus

crimination

be justified by biological cause and

can

by eliminating the carriers of

abolished

disability.

the Stockenius scandal more publica-

During

by human genetic counselors became the

tions

of criticism, showing that Stockenius'

targets

represented only the tip of the iceberg-an

ideas

that also covers the development of

iceberg

has been called the neo-eugenics move-

what

ment.

of neo-eugenics are gene tech-

Advocates

social biologists, economists, or

nologists,

in the field of reproductive health

professionals

ethics. The ideology of neo-eugenics unites

and

and classic arguments and goals and

modern

be summarized in the following aspects:

can



paradigm of genetics has shifted. Control

The

reproductive behavior is no longer

over

by means of invasive state programs

sought

by the establishment of individual self

but

control.

improvement of German race or what

The

called "Volk" is no longer the focus of

was

policy. The target is now the in-

population

and his/her economic interest (not

dividual

to have a disabled child).

The new/classic goal is the centralized


of all people with "genetic disor-

registration

in order to improve scientific

ders"

and at the same time "advise"

knowledge

with respect to their responsibility of

people

personal life style.

their

Two classic arguments of eugenics are


stressed:

first argument relates to advancements

The

medical technologies. It is said, that because

in

these technological developments more dis-

of

people survive today, who in former

abled

times would have died because of "natural

With the improvements in medical

selection".

these disabled people now reach

technologies

age and are able to procreate, the

reproductive

result being the birth of even more

supposed

disabled individuals. Such a

development is

to be against the interests of society as well

said

against the interest of the individual being

as

born disabled.

underlying assumptions are claimed to

The

as simple as "rational": (a) An increasing

be

population group is a burden to

disabled

and thus is detrimental to the happiness

society

all; and (b) disability itself is always a tragedy

of

a human being and thus is detrimental to the

for

of the individual.

happiness

those assumptions might be shared by

While

nondisabled people, they nevertheless

many

based on eugenic ideas. This approach to

are

is biological/genetic instead of view-

disability

disability from a social perspective. Societal

ing

against disabled people thus

discrimination

be justified by biological cause and

can

by eliminating the carriers of dis-

abolished

ability.

a perspective is far from accepting dis-

Such

as just another state of being, similar to

ability

or gender. To compare disability with race

race

gender may be especially important within

or

context. It is not by accident that racism and

this

have their roots in eugenic argumenta-

sexism

tion as well.

Such a

perspective is far from accepting

as just another state of being,

disability

to race or gender. To compare dis-

similar

with race or gender may be espe-

ability

important within this context. It is

cially

by accident that racism and sexism

not

their roots in eugenic argumentation

have

as well.

second argument is as old as the first and

The

are commonly used together. It is the ar-

both

gument of the limited resources a society can


on the general welfare relating to the fact

spend

advancements in medical technology and

that

fields have increased the costs of medical

other

social care. Because of this development--

and

in West Germany is called "cost ex-

which

in the field of medical care"--a new

plosion

on how resources are spent is being

reflection

demanded.

"new" reflections often result in pub-

These

like those of Yon Stackelberg's. He

lications

the exact financial burden a disabled

computed

places on society during his/her entire

person

In 1980 he won a prize for his dissertation

life.

cost-benefit analysis of genetic counselling.

on

c.

Debates and Activities Across

Movements

a result of this analysis, e.g. that there was

As

real break between racial hygiene and

no

genetic science in West Germany, many

human

and conferences were held in which

meetings

groups and movements participated.

different

the most intense debate took place at the

While

national women's conferences against GE

two

NRT,(supra) between disabled and nondis-

and

feminists, other groups--church groups,

abled

special education departments, and

unions,

student groups and especially the

many

have been involved in the

Greens!--also

debate.

discussion has been going on for several

This

now. Since 1984/5 at least once a week a

years

or panel discussion on these issues

meeting

been taking place somewhere in West

have

Now there are several groups in

Germany.

Germany who are concerned and aware

West

the developments with respect to euthanasia

of

eugenics. They represent an important ad-

and

to some other developments in West

dition

Germany.

groups for almost a decade now have

Certain

out in favor of euthanasia and forced

spoken

of mentally disabled people. In fact

sterilization

1982 and 1984 newspapers and TV frequent-

in

reported about cases of (illegal) infanticide

ly

the killing of disabled newborns in

e.g.,

(illegal) forced sterilization.

hospitals--and

TV show, for example, reported that in the

One

80

of Hamburg about 50% of all disabled

town

minors in special schools were steril-

female

And an estimate was given that ap-

ized.

1000 disabled persons per year are

proximately

sterilized; often without informed consent.

order to legitimize this illegal practice, a

In

on forced sterilization of mentally disabled

law

has been drafted and is now on the

individuals

of the Federal Parliament. Unfortunately,

floor

looks like it will soon be passed. It goes

it

saying that these developments go

without

hand in hand with social cutbacks.

those critical groups mentioned

However,

seem to be gaining influence as the

earlier

goes on. A few weeks ago these groups

debate

a coalition in order to prevent an inter-

formed

symposium on biotechnology and

national

disability that was supposed to take

mental

in Marburg, a small town in Hessen near

place

As guests of the Dutch Bishop-Bek-

Frankfurt.

Institute and the German Lebenshilfe--the

kers

organization of parents of mentally dis-

largest

in West Germany--experts in bioethics

abled

medicine were to talk about whether or not

and

newborn disabled have a right to live.

the invited experts was Peter Singer,

Among

of Philosophy and Director of the

Professor

for Human Bioethics at Monash Univer-

Center

Australia. He has published several books

sity,

which he proposes the killing of some dis-

in

infants.

abled

Should the Baby Live? Singer tries to

In

what constitutes a person. Demanding

redefine

diminuition of the princ