The factors affecting end of life decision making by physicians of patients with intellectual disabilities in the Netherlands a qualitative study

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Journal of Intellectual Disability Research volume 57 part 4 april 2013
A. Wagemans et al. •Factors affecting end-of-life decisions for people with ID
Introduction
In the process of end-of-life decisions for people
with intellectual disabilities (ID), physicians struggle
with the roles and tasks of themselves and other
caregivers and representatives. End-of-life decisions
are those decisions which can hasten death, whether
intentionally or not. They include withdrawing or
not starting medical treatment, pain treatment with
possible life-shortening side effects, and ending a
patient’s life with or without his or her request.
These kinds of decisions are extremely important,
and are known to play a substantial part of the
process of dying in half of the deaths in Western
countries (van der Heide et al. 2003). End-of-life
decisions are just as relevant for people with ID as
for the general population (van Thiel et al. 1997;
Onwuteaka-Philipsen et al. 2003).
Normally, patients should play a key role in any
decision-making process that affects their lives, but
people with ID are sometimes unable to do so.
Assessment of someone’s capacity to decide is a
part of the decision-making process and is often not
straightforward. In the Netherlands, it is the responsibility
of the relevant healthcare professionals to
assess this capacity where healthcare decisions are
concerned (WGBO 1994) and to consult with the
patient’s representative as stipulated in the Contract
of Medical Treatment Act (Welie et al. 2005). A
‘representative’ (often a close or distant relative)
is a legal entity carrying the power of substituted
decision-making for patients who lack capacity,
although the roles and responsibilities of representatives
in end-of-life decision-making are not clearly
defined. For example, physicians can disregard the
wishes of representatives about medical decisions;
but they would need to have clear reasons for doing
so, such as their assessment that the course of
action proposed by the representative would be
harmful to the patient (Welie et al. 2005). England
and Wales have a model where medical decisions
for those who lack capacity are based on an assessment
of ‘best interest’ rather than on substituted
decision-making; it gives the explicit opportunity to
take into account a broad range of views (Department
for Constitutional Affairs 2007; Joyce 2010).
In both the Dutch and the UK models, relatives
of the individual with ID have the important task
of giving advice and especially of taking into
account the patient’s quality of life. Ultimately,
however, it is the ID physician who is responsible
for end-of-life decisions, not the representative
(Welie et al. 2005).
Knowledge about the process of decision-making
regarding people with ID, and knowledge about
quality of life as a contributing factor in end-of-life
decisions, is very scarce. Some studies have examined
end-of-life decisions in nursing homes for the
general population (Dreyer et al. 2010). General
palliative care literature shows that clear decisionmaking
is an important component among the
factors contributing to a good death (Steinhauser
et al. 2000).
The aim of this study was to investigate how physicians
make end-of-life decisions for patients with
ID, and in particular, what factors affect the process
of decision-making.
In this paper we use the term ‘patients’ (rather
than ‘clients’ or ‘people’) with ID to reflect their
physical life-limiting conditions; they were under
the medical care of the ID physicians who use the
term ‘patients’ for people on their caseload.
Methods
Setting and sample
In the Netherlands, ID physicians are medical physicians
who have undertaken a 3-year vocational
training, whose caseload consists exclusively of
people with ID. In the Netherlands people with ID
live at home with their family, in small living facilities
or on a larger campus, and are under the care
of family physicians (GPs: ‘General Practitioners’)
or ID physicians. ID physicians care mostly for
people with profound, severe and moderate ID;
GPs care mostly for people with mild ID.
A group of 12 ID physicians were invited to participate
in a research project about end-of-life decisions.
Their patients with ID were living in small
facilities in the community or on a larger campus.
They were part of a group that met for peer review
six times a year and had known each other for a
long time, in most cases more than 10 years. The
first author had been part of this group from the
start.
In 2008 she asked the peer review group to select
any of their patients who met the following inclu-
© 2012 The Authors. Journal of Intellectual Disability Research © 2012 Blackwell Publishing Ltd