PDF version - National Hospice and Palliative Care Organization

The Monthly Membership Publication of the National Hospice and Palliative Care Organization June 2013
Inside
Determining Caseloads
Gilchrist Hospice Care’s clinical director,
Regina Shannon Bodnar, walks us through
her use of the NHPCO Staffing Guidelines to
illustrate how valuable it can be in helping to
determine optimal caseloads. “We’ve been
using the Guidelines since 2011,” she says,
“and it has helped me delineate differing
needs by service line and, in some cases, also
by team.”
Quality on Display
How have providers prepared their staff
for the quality reporting requirements?
Two of the providers that were recognized
for their work by the NHPCO Quality and
Standards Committee discuss the steps they
took to prepare for implementation of the
Comfortable Dying Measure.
PT in Hospice
Karen Mueller of the NCHPP Allied Therapist
Steering Committee speaks to the value of
physical therapy in helping hospice patients
and families meet their goals of care. (Be sure
to also see the impressive list of published
research on this topic that she provides on
page 29.)
Short Takes:
• Award Winners Recognized at MLC
• Circle of Life Call for Nominations
A Message From Don
Member News and Notes
Compliance Tip
Educational Offerings
Videos Worth Watching
News from NHF
Orchestrating Complex Care
By Leslie Szasz, RN, and Janis Tucci, RN
E
very
hospice faces patients whose needs are beyond our usual parameters—
patients who require “complex care.”
Consider, for example, the newborn with multiple anomalies or the ALS patient
on BiPAP. Or perhaps a patient who is experiencing ventilator withdrawal or
another who has attempted suicide.
The next obvious question is what should we be doing differently?
At Chapters Health System, which operates LifePath Hospice in Temple Terrace,
FL and Good Shepherd Hospice in Sebring, FL, we have established a formal
process to better serve these patients and their families. This process, which
we refer to as our “Complex Case Format,” helps us coordinate the multiple
priorities, ensure maximum communication among staff at all levels, and
provide flexibility to adapt, depending on the patient and family’s current needs.
In this article, we review the steps involved in the Complex Case
Format, but also share an actual case to illustrate how
effective it can be in practice.
continued on next page

continued from previous page
The Complex Case
Format
There are four primary steps in
this process:
1. Gather Information
Obtain the past and current
medical information about the
patient, but also identify family
dynamics, the decision-makers,
caregivers and spokesperson, as
well as what the patient and the
family expects and wants.
2. Inform All Involved
Advise the patient and family
of what to expect from us,
including timeframes and
specifics such as the name and
phone number of their hospice
contact person. It’s also equally
important to make sure that
all staff who will be providing
the care have the pertinent
information about the patient
and family.
3. Conduct a Complex Case
Conference
Oftentimes conducted as a
conference call, this meeting
should present and discuss the
case, and ultimately determine
if the hospice should admit or
not admit the patient to service.
Thus, it’s essential that all
necessary parties take part in the
meeting, such as the certifying
physician; MD or ARNP who
will be attending the patient; RN
who has been coordinating the
admission; social worker and/or
chaplain; admissions manager;
manager of the receiving team
and/or designee; and any
specialty staff (e.g., respiratory
or infusion therapist).
4. Debrief
After the high-intensity
portion of the patient’s care is
accomplished, have the same
people who participated in the
conference reconvene to assess
and identify what went well and
what changes might be needed
in future complex cases.
At Chapters, we not only follow
these steps when admitting
a new patient with complex
needs, but also when an existing
patient’s care becomes complex.
By including all of the players in
the discussion—patient, family
and staff—everyone understands
what is expected, each other’s
role and function, and how the
pieces work together. This level
of coordination helps to reduce
anxiety and empowers staff
to make wise decisions. The
process itself can be likened
to that of an orchestra, where
planning and communication
ensure a harmonious outcome.
Of course, the demands and
available resources for each
hospice may be quite different,
so this format is really only
meant to be a starting point for
your organization, not a “one
size fits all” solution.
continued on page 4
2 NewsLine

Important Points About the
Proposed FY2014 Rule
The Centers for Medicare and Medicaid Services released a proposed
rule (posted by CMS on April 29 and published in the Federal
Register on May 10) which would update the fiscal year FY2014 hospice
reimbursement rates. But that wasn’t all.
There were a number of other important things addressed that all providers
should be aware of, including: clarification on coding requirements; hospice
quality reporting; an update on hospice payment reform options; a shortstay
add-on payment; rebasing the routine home care rate; a site of service
adjustment for hospice patients in nursing facilities; and a cost report
analysis. Given this, please be sure to review the information that our
Regulatory Team makes available. A good place to start is with the NHPCO
Regulatory Alert issued on April 30.
One particular point that concerns me greatly is the claim from CMS that
under the proposed rule hospices would receive “a 1.1 percent market
basket increase” in their reimbursement. As I shared in a message to
members when the proposed rule was posted, the numbers don’t add up.
The impact of sequestration cuts was not calculated in this figure. Under
current law, the CMS proposed payment update would actually mean a
minus 0.9 percent decrease for the nation’s hospice community.
Please be assured that NHPCO, the Hospice Action Network and our
lobbyists are all working to emphasize the damage that a negative update
would bring to the hospice community. Furthermore, our official letter to
CMS will be submitted by the July deadline for comments.
Hospices are already struggling with an increased regulatory burden,
heightened scrutiny, and existing productivity cuts. Given the value
that hospice brings to the federal system and the patients and families
we serve, we must work collaboratively and carry our unified voice to
Capitol Hill.
There is also a part you can play. The Hospice Action Network will be
hosting its annual Advocacy Intensive in Washington, DC on July 29 and
30, 2013. We need to bring as many advocates as possible to the nation’s
capital to carry our voice to members of Congress. And every voice
matters—hospice directors, clinical staff, volunteers, board members and
supporters! Registration is now open, so please consider joining us.
J. Donald Schumacher, PsyD
President/CEO
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continued from page 2
How It’s Used at Chapters
At our hospice programs, an RN
begins gathering information
as part of the initial patient
assessment. This includes a
thorough medical-history review
and an initial conversation with
the patient and family. During
this first meeting, the RN asks
two important questions: What
have the doctors told you about
your situation and what do you
want for yourself and your loved
one(s)? The RN also explains
what the patient and family
should expect from us.
This initial conversation is
tremendously important since
it reveals what the patient and
family understand about the
patient’s medical condition.
It also helps to identify their
psychosocial, emotional and
spiritual needs, and sheds light
on what the family is prepared
to accept—be that caring for
the patient with the hope of an
improved prognosis or allowing
the patient to experience a
natural death.
If the patient is alert and
oriented, the conversation is
held with both the patient and
family. If the patient is comatose,
obtunded, or intermittently
awake, we safeguard and respect
the patient’s known desires
through advance directives.
If the patient is only partially
aware, we ask family members
to be present while our staff
talks with the patient and strives
for answers to the bottom-line
questions: Do you understand
that you are very, very sick? Do
you want to try to get better or
are you ready to let go and pass
on? If the patient seems to be
interacting, but does not respond
to a particular question, we then
explain to the family that we
interpret the answer as “I don’t
know.”
When withdrawal of life support
is an issue, we are equally direct
and clear in the questions we
pose to the patient: “You know
the tube you have down your
throat? Your family tells me you
want that tube out, is that right?
Do you want that tube removed
even if it means you will die?”
While this questioning may
seem harsh, when voiced with
compassion, it reassures the
patient and family that we
are here to honor the patient’s
wishes and do what he or she
wants. If the patient is alert and
aware enough, this questioning
usually elicits a response.
4 NewsLine

Our practice is to follow the
patient’s expressed wishes. If
the patient has been interacting,
but does not answer a particular
question, we interpret this as
“I don’t know,” and then stop
the process. If the patient is
unresponsive, we rely on advance
directives. In the absence of
advance directives, we identify
the legal decision-maker
according to our policy.
We conclude the conversation
by explaining what to expect
from us, what might be needed
from them, and who will be their
contact persons at our program.
Our admitting nurse then notifies
the receiving team to anticipate
this complex case, and arranges
for a social worker and chaplain
to meet the patient and family to
assess the psycho-social-spiritual
aspects of their lives and the
implications for care.
This is the time to clarify who is
considered “family.” Is the patient
legally married to one partner,
but currently living with another
who has assumed that role? Does
the staff at the patient’s long-term
care facility consider themselves
family and want to be informed
of the patient’s care at every stage
of decline? If there is complex
care to be rendered, is there
someone who is willing and able
to assist in a caregiving capacity?
If so, who will be training them?
What exactly are the orders and
instructions for that care?
Finally, does your organization’s
policies and procedures support
the care that is needed and
requested? During our review of
the case, a nursing director or
chief clinical officer reviews all
policies that apply to the patient’s
situation. Any questions that
surface from this review must
then be addressed.
In Practice:
The Case of Jimmy
Jimmy was a 32-year-old man
with Down Syndrome, whose
multiple medical conditions had
brought him to a terminal state.
He had been a long-term resident
of a group home that cared for the
developmentally disabled until
his care required admittance to
the area hospital. The group home
and hospital were about 150 miles
away from his parents’ home,
which was located in our service
area. Now, given his illness,
his parents wanted to have him
closer to them.
Pages and pages of records about
Jimmy arrived at our hospice for
review. The physician and staff at
our hospice house reviewed every
page, looking for clues about the
best way to manage his care. We
learned that Jimmy was in fourcontinued
on next page
A nursing director
or chief clinical officer
reviews all policies
that apply to the
patient’s situation.
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continued from previous page
point restraints at the hospital
where staff described him as
“unmanageable” and “physically
aggressive.” The group home
staff, on the other hand,
had described him as fairly
independent, and needing only
verbal direction and guidance.
They also said he only exhibited
aggression when his personal
space was invaded.
Our hospice house manager
contacted Jimmy’s father,
gathered further information
about him, and explained what
to expect, including planned
timelines. A Complex Case
Conference was then scheduled
by phone for the same day.
Participants on the call included
our chief clinical officer; a
nursing director; the hospice
house physician, manager and
team leaders; our infusion
manager; and the nurse caring
for Jimmy at the hospital.
During the call we learned
more about this young man’s
physical decline and his very
supportive family. His hospital
nurse reported that he was
nonverbal, currently had an IV,
had taken nothing by mouth for
three days, had a Foley catheter
in place, and was incontinent.
He was unable to maintain his
body temperature and required
a warming blanket at all times.
The hospital nurse also said he
could be physically aggressive
with both hands and feet and
that, for everyone’s safety, had
been restrained during the entire
month of his hospitalization.
By the end of the call, we
had decided to admit him the
next day. We established the
preliminary care plan, identified
several tasks, and assigned staff
members for follow-up. The
focus of the plan of care included
establishing communication with
the patient; working to eliminate
the restraints; and removing the
IV and Foley. The preadmission
tasks included communicating
with staff at his group home;
obtaining a warming blanket;
and arranging for his parents to
tour the hospice house and sign
the hospice consent forms.
Our team leader made contact
with the patient’s group home.
Our DME manager procured
a warming blanket. The
admissions manager made
multiple calls to ensure a smooth
transfer. The staff members who
were assigned other specific
tasks during the call completed
them and reported back to the
manager of the hospice house.
Because everyone worked in
concert, there was no need for a
follow-up call.
6 NewsLine

When Jimmy arrived at the
hospice house, he truly was
restrained at both the wrists and
ankles. The transport crew from
the hospital reported a relatively
quiet time during transit. Jimmy
was awake, alert and looking at
everyone who now surrounded
him. He may have been nonverbal,
but he said volumes
with his eyes. He was calm and
looked at everyone questioningly
as staff gently held the straps to
his restraints while assessing his
response to us and his possible
level of aggression.
Based on what we had learned
in our extensive pre-admission
review of his records, we were
determined to create a calm,
respectful environment for him
and his parents. We greeted him
by name, told him our names,
and told him that we wanted to
make him comfortable.
“Jimmy took my hand and at
first, was calm, but then, while
maintaining eye contact with me,
began to press his thumbnail into
my hand,” said a member of the
hospice team. “I gently pulled
his thumb away and explained
that it hurt me when he did that.
I then assured him that I was not
going to hurt him, so he should
not hurt me. As I released his
thumb, he continued to hold my
hand, but without any aggression.
This method of responding to him
was repeated by other staff in the
room when he behaved the same
way with them. Each time, he
stopped the behavior and finally,
he stopped altogether. He would
simply allow someone to gently
take his hand.”
Based on these interactions,
we were ready to remove the
restraints, but started first by
removing the ankle restraints.
With these removed, he was able
to make himself more comfortable
in bed by pulling his legs up
against himself. There were no
attempts to kick at any of us. Next,
we removed his wrist restraints
and, again, there were no attempts
to strike out at any of us.
His IV had become dislodged
during transfer, so the tape was
also removed. Our physician
agreed to leave the IV out for now
and see if he would resume eating
and drinking. He was offered
water which he drank without
difficulty. Shortly after this, we
removed his catheter and used an
adult brief instead.
We also replaced the gown he
was wearing with a t-shirt and
he relaxed even more. Bless the
volunteers and community groups
who support what we do at our
hospice house. We gave him one
of the small, silky smooth quilts
continued on next page
Based on what
we learned, staff
was determined to
create a calm and
respectful
environment
for him…
NewsLine 7

continued from previous page
they provide and he loved it,
stroking both sides and then
pulling it up to his chin and
holding it there. We also gave
him a very soft egg-shaped
pillow made at Easter time by
the local women’s club, which he
also liked. We then offered him
one of the dolls that the local
junior women’s club provides
for our more-restless patients,
but that didn’t go over quite as
well. “Nope, he was all boy,”
said a hospice staff member. “He
pitched it to the end of the bed.”
Fortunately, the staff discovered
that he liked watching baseball,
which helped engage him.
Under the watchful, skilled
and compassionate care of our
hospice staff, this young man
was kept comfortable. There
was nothing poking, pulling or
irritating him. Everyone spoke
gently and kindly to him. While
a volunteer stayed by his bedside
during his stay at the hospice
house, restraints were never used.
For several days, Jimmy was able
to take food and drink again.
His stage II sacral decubitus
began to heal. He rested quietly,
and over the next 19 days his
parents and brother were at his
bedside throughout the day and
every evening, finally moving
in and staying with him during
the final few days of his life. On
one of those days as he and his
father hugged, his mother said
tearfully, “We prayed so hard for
him to live when he was born
and now we are praying for God
to take him home.”
Jimmy died at 12:25 on a
summer afternoon, with his
family by his side.
In Closing
Because of the Complex Case
process we followed, this young
man’s care was organized before
his arrival and throughout his
stay with us, allowing him and
his family to find peace and
closure. It’s also a clear reminder
of why we all work in hospice.
Please see the opposite page
for a print-friendly copy of the
Complex Case Format to print
and/or share with staff.
Leslie Szasz is a senior nurse
preceptor at Chapters Health
System, with 38 years of
healthcare experience. In her
current role, she provides both
classroom and in-home training
for team preceptors and staff.
Janis Tucci has worked in the
field of nursing for 45 years. She
joined LifePath Hospice in 2008,
and has served as the manager of
Melech Hospice House since 2009.
8 NewsLine

The Complex Case Format
Courtesy of Chapters Health System, Temple Terrace, FL
Examples of a Complex Case:
Multiple infusions; inotrope
infusions; new tracheostomy;
pediatrics; complex family or
caregiver dynamics; safety issues;
complex nursing care; withdrawal
of life support.
Purpose of the CC Format:
• Honor the patient and family’s
wishes
• Bring together many entities
• Facilitate a very emotional
situation
• Coordinate the plan of care
• Identify and address any
staff needs
• Prepare for foreseeable
problems
• Empower staff to address
the unforeseen problems
according to policies and the
plan of care.
Steps in the CC Format:
1. 1 Gather Information
• What does the patient want?
• What does the family want?
• Medical history—both the
current and past
• Identify family dynamics, the
decision-makers, caregivers
and spokesperson
• Determine the physical and
spiritual needs.
2. 2 Inform All Involved
• Inform the patient and family
of what to expect, including
timeframes and the name
and phone number of their
hospice contact person.
• Provide basic information
about the patient to the
hospice staff who will be
caring for him or her, along
with when the complex case
conference will be held.
3. 3 Determine Who Needs to
Attend the Complex Case
Conference
For example, the certifying
physician; MD or ARNP who
will be attending the patient;
RN who has been coordinating
the admission; social worker
and/or chaplain; the admissions
manager; manager of the
receiving team and/or designee;
and any specialty staff, such
as a respiratory or infusion
therapist.
4. 4 Hold the Complex Case
Conference
The conference, which can be
held by phone or as a meeting,
should present and discuss the
case, and ultimately determine
if the hospice should admit or
not admit the patient to service.
For example, does the hospice’s
policies and procedures support
the care this patient and family
needs and wants? Are there any
issues or questions that must be
answered or tasks completed
before a decision can be
reached?
If a follow-up conference call is
needed before a decision can
be reached, set up the day and
time of the call before ending
the current call.
Finally, if you decide to admit
the patient, identify what each
of the staff members is to do at
admission or when the patient is
transferred to your hospice.
5. 5 Debrief
After the high-intensity
portion of the patient’s care is
accomplished, reconvene the
same people who participated
in the CCC to assess and
identify what went well and
what changes might be needed
in future complex cases.
NewsLine 9

Determining
Caseloads
Gilchrist Hospice
Care on Its Process
By Regina Shannon Bodnar, RN, MS, MSN, CHPCA
Staffing! Having the right people in the correct numbers is an essential foundation of a
quality-driven hospice organization. But a hospice is not a hospice is not a hospice. In
the same way that you individualize patient care, the art of knowing your ideal caseload
numbers—for clinical staff as well as administrative support—must be based on an insightful
understanding of both your business model and your community.
Fortunately, NHPCO’s “Staffing Guidelines for Hospice Home Care Teams,” which was released in
March of 2011, walks you through an analysis process to help you determine what your caseloads
should be, based on these factors and others.
At Gilchrist Hospice Care (GHC), where I serve as the director of clinical services, utilizing this
analysis process has helped me delineate differing needs by service line and, in some cases, also by
team. And in this article, I show you precisely how. But first, some background.
10 NewsLine

Short Takes:
• Results from the Education N eds A se sment
• VA Reaching Out Grant Recipients
• New NHDD Website
• JPSM Ca l for Papers
• New Volunt er Outreach Materials.
News about NHPCO members.
The Analysis Process
The Staffing Guidelines is a wellorganized
36-page document that
utilizes a multi-step systematic
assessment process to estimate
optimal staffing levels for hospice
programs, with the process broken
out into ‘digestible’ sections.
While an introduction with
an overview is included in the
document, let me briefly review
the process for the purpose of this
discussion:
• Section I covers the “prep”
work you should perform first.
This includes:
- A review of pertinent
statistics from NHPCO’s
National Summary of
Hospice Care to give you
an understanding of what
hospices, nationwide, are
currently doing; and
- A review of those factors
that will influence
your final caseload
determinations, such as
length of service, staffing
models (e.g., Admissions
Model; Bereavement
Model); and organizational
characteristics.
• Section II covers the actual
staffing analysis process,
which calls for the completion
of two one-page worksheets.
This involves assembling your
hospice data; comparing your
current staffing caseloads to
the national caseload statistics
from the National Summary;
and estimating your own
staffing caseloads accordingly.
• Section III covers the evaluation
process, and is followed
by sections which provide
completed worksheets for three
hospice programs to serve
as examples, a convenient
glossary of terms, and the
pertinent tables from the
National Summary.
As you can see, implementing
the guidelines does require an
investment of time, but based on
my experience, it is time well spent.
GHC’s Analysis by
Service Line
Gilchrist Hospice Care (GHC),
which serves patients in the
jurisdictions of Central Maryland,
has an average daily census of
approximately 600 patients. Our
organization is arranged around
three clinical service lines:
1. Inpatient Care (44 beds across
two facilities)
2. Facility Based Care (three
home hospice teams caring
for patients in skilled nursing
facilities and assisted living
communities)
continued on next page
Want More
Background
About the
Guidelines’
Development?
See the introductory
article in the March
2011 issue of
NewsLine, which
includes details
about the rationale
for establishing
the analysis process.
The Monthly Membership Publication of the National Hospice and Pa liative Care Organization March 2011
Later this month, NHPCO wi l be releasing
the eagerly awaited update to its staffing
ratio recommendations—but it is
far more than just an ‘update.’
The new document, “Staffing
Guidelines for Hospice Home
Care Teams,” will help each
hospice determine its unique
staffing requirements, based
on its model of delivery,
patient characteristics and
environmental considerations.
In this article, Tara Brodbeck,
the president/CEO of Hospice of
the Miami Va ley and the co-chair of
the Task Force charged with developing
the new Guidelines, talks about the tool,
including why a new approach was taken,
the member feedback from field testing,
and suggestions on using it.
NHPCO’s New Staffing Guidelines:
No Longer a One-Size-Fits-All Approach
Inside
A Message From Don
NHPCO president/CEO, Don Schumacher, talks abou the new series,
“NHPCO Executive Conversations” and why it’ so important now.
Capitol Hi l Day 2011
The Voice of NCHPP
A preview of the April 5-6 agenda and why a l member should a tend.
In this monthly feature, we shine the light on the work of NCH P and
each of its 15 professional sections. This month the QAPI Section is
spotlighted, with an article by E len Martin.
By Tara Brodbeck, MS, RN, CHPN
n 2008, as the NHPCO
Quality and Standards
Committee began revising
the Standards of Practice for
Hospice Care to incorporate
the new Hospice CoPs, we
knew it was also time to
take on the cha lenging
task of revising the staffing
ratio recommendations in
NHPCO’s “Hospice Services
Guidelines and Definitions”
(which had been produced back
in 1994!).
A soon as the project was added to
our committee agenda, questions and
comments began pouring in from members
across the country. It seemed that many had strong ideas abou the topic
and wha the revision should address. Here’s a sampling of the initial
feedback we received:
• Resources for Your Social Work Sta f
• CE/CME Training through NHPCO Webinars
New—Hospice in the Continuum:
This month’s feature spotlights PACE at Midland Care
in Topeka, KS.
Plus:
I
People and Places
Educational O ferings
continued on next page
NHPCO conferences, Webinars, webcasts and E-OL courses.
NewsLine 11

continued from previous page
3. Home Hospice Care (six
home hospice teams caring
for patients in private
residences, with one
designated exclusively for
pediatric patients).
Since it was first released,
we have used the guidelines
to analyze our needs and
appropriately budget resource
dollars for each of these three
service lines.(Gilchrist Kids is
excluded from this discussion
since it is staffed differently,
based on the experience of
pediatric-care colleagues around
the country.)
Some Influencing Factors
As part of the “prep” work that
should precede the analysis, we
considered factors unique to our
organization that will impact
staff caseloads. For example,
across our organization, there
are four particular features of our
programmatic design that heavily
impact staffing:
• We have a NEWS Crew that
covers nights, evenings and
weekends, and is staffed with
RNs, LPNs and, to a lesser
degree, supportive services.
This Crew is responsible
for responding to the prescheduled
and on-call needs
of our patients and families
after business hours and on
weekends.
• We also employ a designated
admissions team and
Hospital Liaison Crew seven
days per week to conduct
introductory visits and enroll
eligible patients on service.
• Our bereavement services
are provided by a designated
team of professionals separate
from the interdisciplinary
care team.
• And in late 2011, we
established a daytime triage
team to handle clinical calls
during business hours to
help reduce the number of
interruptions on field staff.
Given this programmatic design,
our primary care teams do not
provide bereavement services,
our clinical teams do not handle
admissions or provide 24/7
coverage (except on six holidays
per year), and our supportive
services staff has infrequent
after-hours responsibilities. That
said, additional discernment
by each of our service lines is
required—which I review next.
12 NewsLine

The Guidelines in Practice
Staffing for Facility Based Care
Our Facility Based Care (FBC) is composed of three teams: FBC-East,
FBC-Central and FBC-West.
We have long accepted that the care provided by these teams requires
enhanced communication skills (since staff is working with family,
facility staff and physicians); flexibility in work hours to ensure aroundthe-clock
attention; and a true commitment to building and maintaining
a respectful partnership in the care of the patients.
Shown below is the completed copy of Worksheet 1 for this particular
service line (this Worksheet appears on page 17 of the guidelines).
As you see, we entered our data on Length of Service and Routine Level
of Care, and then assigned a directional indicator (+/-/=) to represent
higher, lower or equal caseloads for the categories under the Staffing and
Organizational Models.
Factors Associated With Care Model FBC East FBC Central FBC West
Length of Service 101 108 121
Staffing Model
Admission Model +/- + +
On Call Model + + +
RN/LPN Model + = -
Shared Team Model = = =
Bereavement Model + + +
Staff Turnover Rate + + +
Organizational Model
Percent of Routine Level of Care 99 99 99
Access = = =
Aide/Homemaker Delivery Model + + +
Use of Ancillary Therapy
(e.g. PT/OT; art, music)
+ + +
We discovered
that much was the
same across
our three teams
On completion of the Worksheet, we discovered that much was the same
across our three teams.
We also found that the average Length of Service (LOS) for patients
served by these teams (i.e., 101; 108 and 121) was significantly higher
than the national average of 69.1 days as reported in the FY2011 National
Summary (Table 7), as was the Median LOS of 19.1 days.
continued on next page
NewsLine 13

continued from previous page
In addition, our staff turnover rate of 10.3 percent (and 12.3 percent
for nursing) was significantly below the national agency mean of 23.6
percent, as reported in the FY2011 National Summary (Table 11).
But a bit of variation bubbled up as well. An LPN floater has been
successfully integrated into the FBC-East team, and covers cases when
an RN team member is off. This averts the need for the other RN case
managers to assume coverage responsibilities when a nursing colleague
is using benefit time. Theoretically, the RNs on this team should be able
to carry a slightly larger caseload of patients because they no longer
have coverage responsibilities (or the fluctuation in the patient care
responsibilities that coverage brings with it).
These FBC teams have also expressed an interest in conducting a pilot
to admit their own patients and not use the services of the admissions
department. They are hopeful that this will increase the likelihood of
team members connecting earlier with family members, which is a
frequent challenge for patients residing in facilities. Because of greater
flexibility in scheduling, they also hope it will decrease the time
between referral and admission. This pilot, which is clearly poised for
success, would dictate the need for smaller RN caseloads.
It is also worth noting that the FBC-Central team has a wellestablished
RN/LPN partnership that provides care across settings
for residents of a large continuing care retirement community. Their
caseload is nearly double that of an RN working independently and the
arrangement has resulted in many positives, such as continuity of care,
increased responsiveness to emergent needs, and a collegial camaraderie
envied by many. It does not, however, impact the caseload size of other
team members.
14 NewsLine

Let’s now turn to the portion of Worksheet 1 concerning the Organizational
Model shown on page 13, but also below.
Organizational Model FBC East FBC Central FBC West
Percent of Routine Level of Care 99 99 99
Access = = =
Aide/Homemaker Delivery Model + + +
Use of Ancillary Therapy
(e.g. PT/OT; art, music)
+ + +
The percentage of routine patients served by our FBC staff is nearly 2
percentage points higher than the national average as reported in the
FY2011 National Summary (99 percent versus 97.1 percent).
We also fully utilize hospice aides, routinely use physical therapy to
promote patient safety, and have thriving volunteer and music therapy
programs (which are reflected by the directional indicators (+/=) we
assigned to these categories).
Also, the GHC Expanded Care Program of concurrent care is well
established, but not frequently tapped by FBC patients because of their
diagnostic mix and other factors. Thus, together, these findings suggest
that GHC disciplines assigned to facility based care teams could carry
caseloads that are larger than those reported in the FY2011 National
Summary.
continued on next page
Together, these
findings suggested
that GHC disciplines…
could carry larger
caseloads…
NewsLine 15

continued from previous page
Other Factors Impacting Caseloads
Worksheet 2 of the Staffing Guidelines (page 19 of the document) lists
13 other factors to consider when determining staffing caseloads. Our
completed worksheet for the FBC service line is shown below.
Other Factors to Consider
for Staffing Caseloads
FBC
East
FBC
Central
FBC
West
GIP and Continuous Care Variables = = =
Multiple Non-core Roles for IDT - - -
Facility-based Variables
(routine home care)
Primary Care Team Models + + +
Provision of Community Services + + +
Psychosocial Issues:
High Social Complexity
= = =
Rate of Growth = = =
Specialty Programs + + +
Spiritual Care Support Model +/- +/- +/-
Staff Safety: Require Multiple Staff
or Escorts/Visits
+ + +
Travel Time: Increased = = -
Volunteer Utilization + + +
Other
We found that, even though we have two stellar inpatient facilities, the
use of our inpatient settings for FBC patients is infrequent. Continuous
care is available and is often the first choice for symptomatic patients,
based on the belief that moving an FBC patient from a familiar setting
(and the faces they recognize) is frequently not the right thing to do. We
also appreciate that our FBC team members are moving in the direction
of embracing their responsibility as the end-of-life care experts for the
facilities in which they work. This will bring enhanced responsibilities
for FBC team members to conduct resident, family and professional
education programs that are presently performed by other employees of
the organization.
One true outlier in our analysis of “Other Factors to Consider” was
travel time for the FBC-West team. This team has a significant cluster of
patients who are located more than 30 miles from the team office. It was
determined that this finding should not affect the caseloads of all team
members, but could most easily be addressed by introducing an RN/
16 NewsLine

LPN partnership to this portion of the service area. Like all partnerships,
the relationship is key to a successful RN/LPN pairing. We are presently
in search of an LPN to complement the talents of the RN in this area.
Until a partnership is launched, however, navigating the geography to
best meet patient needs will be accomplished through well-considered
scheduling and continued judicious use of per diem staff.
Another point to note is in regard to our spiritual care support. In
addition to their work with patients and families, our chaplains offer
support to facility residents and staff members. In conjunction with
our bereavement department, the chaplains conduct memorial services
in many facilities on a quarterly basis. This is balanced by GHC’s
commitment to honor patient and family relationships established with
community clergy.
Putting It All Together
When considering all the factors collectively, it was determined that our
RNs could and should carry caseloads in slight excess of the national
average of 11 patients, as reported in the FY2011 National Summary.
This decision is driven mostly by GHC’s organizational commitment
to our NEWS Crew, admissions team, and bereavement department, as
well as our vigorous volunteer program and the acknowledgment that
travel for most team members is reduced in time and distance due to the
clustering of patients in partner facilities. I do anticipate a modification
to staffing numbers for our FBC-East team once it is positioned to assume
responsibility for conducting its own admissions.
One true
outlier in our
analysis was
travel time….
Staffing for Home Hospice Care
Shown at the top of the next page is Worksheet 1 for our Home Hospice
Care (HHC) service line.
There are five teams in this service line that care for patients and their
families in private residences. However, they also receive support from
a NEWS Crew, admissions team, hospital liaisons, triage team, and
bereavement department. These teams are just beginning to migrate
toward an RN/LPN model of care, with some adapting earlier than others.
These teams are also moving towards a modified Shared Team Model that
translates into all members of the team assuming broader responsibilities.
continued on next page
NewsLine 17

continued from previous page
Factors Associated With Care Model Central East West Howard Harvard
Length of Service 68 99 59 97 84
Staffing Model
Admission Model + + + + +
On Call Model + + + + +
RN/LPN Model = = = + +
Shared Team Model = = = = =
Bereavement Model + + + + +
Staff Turnover Rate + + + + +
Organizational Model
Percent of Routine Level of Care
Access - - - - -
Aide/Homemaker Delivery Model + + + + +
Use of Ancillary Therapy
(e.g. PT/OT; art, music)
= = = = =
In looking at the Routine Level of Care for these home hospice teams,
note that we have deliberately left that row blank. This is due to an
earlier organizational decision to change team assignments for a patient
when the patient transfers from a home care team to an inpatient
hospice setting. This results in no home hospice team having a patient
at the general inpatient level of care.
Like our FBC teams, our HHC teams recognize the important role
that hospice aides play as care providers and team members. We staff
these positions assertively, recognizing that if our aides are to truly
meet the basic needs of patients and families, they need to visit them
more frequently than any other member of the team. We are also
assertive in incorporating physical therapists (PT) into all plans of
care, acknowledging that those patients who are ambulatory and using
assistive devices potentially benefit most from the skilled assessment
and coaching that PT brings to the plan of care. Each of these findings
suggests that the care teams could carry larger caseloads than those
reported in the National Summary.
As I noted earlier, GHC also has two stellar inpatient facilities. These
facilities are frequently used by our HHC teams for patients who require
complex symptom management. To facilitate seamless transitions in
care, a bed is reserved at all times for use by home hospice patients. In
18 NewsLine

cases of an anticipated weather emergency, the number of beds allocated
for use by home hospice patients is increased. Given this practice, the
coordination and handoff of patients is predictably less complex. So, even
though transfers into the inpatient setting happen with regularity, this
design supports the home hospice RN case manager in carrying a larger
caseload.
Other Factors Impacting Caseloads
When assessing other factors that may impact staffing caseloads for
the HHC teams, one team, in particular, stands out as different from
the others. The Central team cares for patients in Baltimore City and
the edges of the surrounding counties and, as shown in Worksheet 2
below, the complexity of psychosocial issues encountered by this team
(as reflected by the directional indicator) suggests that social workers
should carry smaller caseloads. The issue of staff safety is also more
commonplace for this team (also reflected by the directional indicator).
Given that more time is required for the coordination of joint visits and/
or the utilization of escort services, it was determined that all clinical
disciplines on the Baltimore Central team should carry slightly smaller
case loads.
Other Factors to Consider
for Staffing Caseloads
Central East West Howard Harvard
GIP and Continuous Care Variables + + + + +
Multiple Non-core Roles for IDT + + + + +
Facility-based Variables
(routine home care)
n/a n/a n/a n/a n/a
Primary Care Team Models + + + + +
Provision of Community Services + + + + +
Psychosocial Issues:
High Social Complexity
- + + + +
Rate of Growth = = = = =
Specialty Programs + + + + +
Spiritual Care Support Model +/- +/- +/- +/- +/-
Staff Safety: Require Multiple Staff
or Escorts/Visits
- = = = =
Travel Time: Increased = = = - -
Volunteer Utilization + + + + +
Other
The complexity of
psychosocial issues…
suggested the social
workers should
carry smaller
caseloads.
continued on next page
NewsLine 19

continued from previous page
Putting It All Together
In addition to the factors
already noted, our triage
department manages the
majority of weekday calls
from patients cared for
by our HHC teams. This
supported our determination
that these teams could carry
larger caseloads than the
agency means by discipline,
as reported in the FY2011
National Summary (Table
14). And this is by design.
Our goal is to limit “the
asks for work” outside of
direct patient care, so these
teams can focus almost
exclusively on providing
interdisciplinary care that is
true to the core principles of
hospice.
The one exception is our
Central team. The multitude
of complex psychosocial
issues and very real safety
concerns associated with the
patients they serve suggests
smaller caseloads are
necessary in order to deliver
quality care and a positive
patient and family experience.
Travel time for both our
Harford and Howard County
teams is also acknowledged
as a potential issue since each
covers a broad geography.
The distribution of patients
is occasionally problematic
and must be conscientiously
assessed.
In Closing
The key to staffing success
is the commitment to
thoroughly understanding all
of the factors which impact
the day-to-day operations
of the clinical program and
a commitment to re-assess
those factors regularly. As I
hope this article illustrates,
NHPCO’s Staffing Guidelines
can help you get there.
Regina Shannon Bodnar is
a registered nurse with more
than 35 years of clinical and
leadership experience. She
currently serves as the director
of clinical services for Gilchrist
Hospice Care in Hunt Valley,
MD, a position she has held
since 1993. She is also an
active member of NHPCO,
including service as both a
member of the Quality and
Standards Committee and
the Task Force charged with
development of the NHPCO
Staffing Guidelines.
Staffing Guidelines: Available in PDF and Print
NHPCO’s Staffing Guidelines for Hospice Home Care Teams can be
downloaded by members, free of charge, from the NHPCO website.
Printed copies ($14.99 for members) are also available for purchase from the
NHPCO Marketplace—and can be ordered online or by calling the NHPCO
Solutions Center at 800-646-6460 (M-F, 8:30 a.m. to 5:30 p.m., ET/EDT)
20 NewsLine

NHPCO would like to thank all the conference attendees, the 2013 MLC Planning Committee and our
business partners for making the 2013 MLC a success. On behalf of all who participated in the
conference, we offer our deepest gratitude to the following organizations for their generous
educational grants in support of the 28th Management and Leadership Conference.
Thank You.
Platinum Conference Supporter:
Gold Conference Supporters:
Silver Conference Supporters:
Bronze Conference Supporters:
NewsLine 21

quality on DISPlay:
Two Honorees Share Their Work
The NHPCO Quality and Standards Committee held its second annual “Quality on Display”
event at the November 2012 Clinical Team Conference.
In light of the hospice quality reporting requirements (and the October 1, 2012 deadline to begin
data collection), the Committee asked providers to share—on 4-by-8-foot visual displays—how
they were preparing their organizations and staff.
NewsLine is proud to share the work of BAYADA Hospice in Moorestown, NJ, and Hospice of
the Bluegrass in Lexington, KY.
Both organizations chose to showcase their strategies for implementation of the NHPCO
Comfortable Dying Measure (NQF 0209), one of the two measures currently required for quality
reporting to CMS. While their visual displays cannot be duplicated here, each organization has
graciously created a PDF presentation that outlines its strategy and implementation process.
22 NewsLine

BAYADA Hospice • Moorestown, NJ
There were three primary components in our strategy:
• Education: This included
providing staff with an
overview of the NHPCO
Comfortable Dying Measure
and a six-page FAQ document,
where detailed answers to the
measure were provided.
• Technology Design: This
included the revamping of
assessments to determine
eligibility for participation
in the measure, as well as
collaboration with our EMR
vendor, Homecare Homebase.
• Process Design: It was also
critical to have a process
in place to identify who in
the organization will be
responsible for the daily
logistics of ensuring that every
patient requiring follow-up
receives it in a timely manner.
While we were strategically
positioned to gather and report
on this measure through our
partnership with Homecare
Homebase, it did take several
months to prepare our practice for
this change.
The Hospice Services (HOS) office
developed education for our staff
about this new measure, including
a mandatory assessment through
the Learning Management System
(LMS). This was accomplished
with much assistance from our
Visit Virtual Office senior associate,
Margaret Donohue, and our
Learning Curriculum and Design
training manager, Victoria McDevitt.
Changes to the Homecare
Homebase assessments also went
into effect, so that our admissions
nurses could easily identify a
patient who requires follow-up and
should be reported in this measure.
Additionally, HOS worked with
input from four other hospice
directors—Kristin Barnum, Linda
Trout, Phyllis Tarbell, and Angela
Snyder—to determine how to
adapt daily operations to ensure
that BAYADA staff was educated
about this requirement and
available for the required 48-to-72
hour follow-up, even on weekends
and holidays.
Sharon Vogel
Director of Hospice Services
While we were
strategically positioned…
to gather and report on
this measure… it still
took several months
to prepare….
VIEW THE PRESENTATION
continued on next page
NewsLine 23

continued from previous page
Hospice of the Bluegrass • Lexington, KY
Hospice of the Bluegrass made
an early commitment to hospice
quality reporting. As part of
our strategic goals for 2012, we
provided updates to the board of
directors as well as our executive
management team. With the tone
at the top set, our next challenge
was to educate clinicians on
the NHPCO Comfortable Dying
Measure (NQF 0209) and what
it means to their practice and
workflow.
The quality team (Compliance
Analyst Tim Shockley; Patient
Safety and Infection Control
Nurse Kim Whisman; and
Compliance Coordinator Gale
Hankins) and I were charged
with project implementation, but
success couldn’t be accomplished
without help from the clinical
team, led by Chief Clinical
Officer Deede Byrne. But really,
there isn’t a clinical director,
supervisor, team leader, or
clinician that wasn’t part of the
team. As the saying goes, it takes
a village.
We discussed the measure
regularly at quality meetings,
but also at our clinical director
meetings, team leader meetings
and staff meetings. It was also
part of the annual quality
presentation that was conducted
at each office. That was round
one. Round two was a “train the
trainer” PowerPoint that was
used in each office leading up to
the October 1 deadline.
Additionally, we supplied staff
with cheat sheets, flowcharts,
decision trees, electronic
medical record screenshots and
internally-developed FAQs.
Since communication about
patient needs is handled
differently in our rural offices
which have fewer staff,
leadership chose not to be
prescriptive about each office’s
“hand-off communications”
process. Instead, we encouraged
each office to use its established
communications system—why
change it if it already works?
In the month prior to the
October 1 deadline, we tested
our electronic forms, reports and
clinical processes. A centralized
tracking tool was maintained
in the quality department.
Reminder e-mails and voice
mails were spearheaded by our
compliance analyst. Through
these communications, it
became evident that each
office was using some sort
of tracking system to keep
up with admissions and the
measure’s questions, so the
quality department created an
individualized tracking tool for
each office’s use.
Eugenia Smither,
RN, BS, CHC, CHE, CHP
Corporate Compliance Officer
Vice President of Compliance
and Quality Improvement
VIEW THE PRESENTATION
24 NewsLine

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NewsLine 25

From the NCHPP Allied Therapist Section*
PT in
Hospice:
A Shared
Partnership
for Quality
of Life
By Karen Mueller,
PT, DPT, PhD
While most people
do not view
“physical therapy”
and “hospice” as an obvious
partnership, emerging evidence
and recent healthcare policy
change suggests that the time
has come to reconsider this
viewpoint.
The Medicare Hospice Conditions
of Participation (CoPs), for
example, specifically requires
that “physical therapy services
be made available to patients
and provided by licensed
professionals.”
When this rule was included in
the 2008 revision of the Hospice
CoPs, it was no doubt a source
of confusion among many health
care providers, begging the
question, why would any patient
in hospice need the services of a
physical therapist?
The answer is simple, and
underscores the shared mission
of NHPCO and the American
Physical Therapy Association
(APTA): To improve the quality
of life of those we serve.
Some Compelling Evidence
Although physical therapy services
are generally associated with
the improvement of function
through rehabilitation and other
interventions, hospice patients also
seek the best possible quality of
life, which for most, involves the
optimization of remaining function
in light of their hospice diagnosis.
Interventions related to the
enhancement of comfort, function,
energy conservation and nonpharmacological
approaches to
pain management are all within
the physical therapy profession’s
scope of practice, and these
interventions can be highly
effective for patients in hospice.
By way of example, four powerful
testimonies come to mind:
• A two-year-old boy with a
medulloblastoma underwent
surgical resection and placement
of a ventriculo-peritoneal
shunt. Hospice physical therapy
enabled his parents to address
developmental sequence
activities, positioning, and
equipment issues to promote
mobility and quality of life
during his months at homes
at home.
*The National Council of Hospice and Palliative Professionals (NCHPP) is comprised of 15 discipline-specific
Sections that represents the staff and volunteers who work for NHPCO provider-members. To learn more
about this NCHPP Section, visit the NHPCO website.
26 NewsLine

• A 60-year-old female with
metastatic cervical cancer
and severe bilateral lower
extremity lymphedema was
able to ambulate with a walker
in her home following manual
lymphatic drainage and the
application of compression
bandaging.
• A 12-year-old girl with
Charcot-Marie-Tooth disease
developed a glioblastoma
and used a wheelchair
following surgical resection,
radiation, and experimental
chemotherapy. Six-plus months
of palliative home health
physical therapy enabled her
to gain sufficient strength and
function to return to school
for her sixth-grade graduation,
ambulating with bilateral
AFOs and Lofstrand crutches.
With her family, she enjoyed
a Make a Wish trip to the
Philippines. After subsequent
tumor recurrence, she received
hospice physical therapy
services for family training in
dependent transfers and bed
care.
• A 60-year-old male with
metastatic brain cancer
receiving home health
hospice services requested
physical therapy intervention
for gait training so that he
could walk to the dining
room table for Thanksgiving
dinner with his family. After
three sessions of physical
therapy intervention—which
included strengthening,
training for standing balance,
and instruction in safe use
of a walker— the patient
accomplished his goal.
Spreading the Word:
HPC Special Interest
Group
Given the constraints of
reimbursement and forthcoming
changes to Medicare in light of the
Affordable Care Act, members of
the physical therapy profession are
well aware of the need to educate
healthcare professionals on the
value of our services in all areas
of practice, including hospice.
To facilitate this education, former
NHPCO Allied Therapist Section
leader, Richard Briggs, MA, PT,
approached the APTA about
forming a Hospice and Palliative
Care Special Interest Group (HPC-
SIG), which the APTA approved
and officially launched in 2008. I
had the honor of serving as vicechair
of the HPC-SIG for the first
three years, and became its chair
in January of 2012.
continued on next page
A Few Facts
Worth Noting
• As of 2012, 224 of
the nation’s 226 PT
educational programs
are at the doctoral level.
• The physical therapist’s
primary role is to
enhance the patient’s
subjective well-being
and quality of life
through the assessment,
management and
prevention of health
related conditions
affecting movement,
motor control and
function.
• Physical therapists
serve persons of
all ages, from the
youngest newborns to
those at the end of life
(many of whom desire
a level of mobility
in order to meet
important life goals).
• Physical therapists
work with patients in a
variety of care settings,
including the home,
hospital, rehab facility,
and assisted living or
long-term care setting.
• According to the
U.S. Bureau of Labor
Statistics, there is an
estimated 198,000
physical therapists
in the U.S. (and our
aging population is
expected to create a
high demand for their
services).
NewsLine 27

continued from previous page
In the past five years, members of
the HPC-SIG have made inroads
in three key ways:
• Inter-professional Education:
We have been selected to
present several educational
sessions related to clinical
specialties within our
profession at the annual
APTA Combined Section
Meeting (typically held each
February).
• Outcomes Research: We
have also published research
to identify the impact of our
interventions in a hospice
population (see the bibliography
at the end of this article).
• Clinical Practice: We have
also begun the development
of an outcomes measure
toolbox for the assessment of
patients in hospice.
Our efforts have also involved
similar initiatives at the
international level, with recent
presentations at the World Congress
of Physical Therapy (WCPT) in
Amsterdam in 2011. More recently,
Chris Wilson, the vice chair of
our HPC-SIG, has worked with the
WCPT to establish an international
Hospice and Palliative Care Special
Interest Group for the world
community of physical therapists.
Opportunities for a
Future Alliance
As we all know, great minds
think alike and, thus, a
prominent initiative of the APTA
HPC-SIG is the establishment
of formal liaisons with other
leading organizations related to
hospice and palliative care.
Not surprisingly, NHPCO was
the foremost of such professional
groups, and in the past few
months, members of the HPC-SIG
have enjoyed several productive
discussions with NCHPP Allied
Therapist Section leader, Valerie
Hartman, RN, CHPN, CTRN,
which have underscored our
shared values and mission.
In the course of our discussions,
we have identified several ways
in which our organizations can
align in the service of optimizing
end-of-life care for all members
of society. The first is the sharing
of resources, particularly those
related to clinical assessment
measures. Both of our
organizations also have helpful
websites, educational conferences,
and most importantly, a cadre
of passionate professionals with
a vision for delivering the best
possible services to our patients.
Other countless opportunities
also exist, such as reciprocal
28 NewsLine

attendance at APTA and NHPCO
conferences, and the sharing of
research, educational materials
and clinical guidelines. As other
key agencies, such as the Institute
of Medicine (IOM), address the
future of end-of-life care, each
organization has the potential
to shape future policy. For
example, a member of the APTA
provided public testimony from
the HPC-SIG at the February, 2013
inaugural meeting of the IOM
Committee to transform end-of-life
care. As a result of that meeting,
it is hoped that our members will
have the opportunity to provide
comments and suggestions to
future committee proceedings.
Looking Ahead
The anticipated changes in
societal demographics (i.e. the
aging of the 80 million-strong
baby boomers), coupled with
the ongoing restructuring of
our nation’s healthcare delivery
system, create unprecedented
opportunities to enhance costeffective
and compassionate
end-of-life care in all realms
of influence. Inter-professional
initiatives will likely become
increasingly prominent as the
preferred means to this end.
Thus, organizations with a
shared mission, such as APTA
and NHPCO, may best enhance
their mutual efforts through a
recognized alliance. As a member
of both APTA and NHPCO, I
am proud of the work of both
organizations, and look forward
to the continued exploration of
effective innovative approaches to
end-of-life care.
Karen Mueller is a professor in
the Physical Therapy Program at
Northern Arizona University in
Flagstaff, AZ. She also serves as
a member of the NCHPP Allied
Therapist Steering Committee and
chair of the Hospice and Palliative
Care Special Interest Group of
the American Physical Therapy
Association.
Research Supporting the Role
of PT in Hospice:
• Toot J. Physical therapy and hospice:
concept and practice. Physical Therapy.
1984;62(5):665-671.
• Ebel S. The role of the physical therapist in
hospice care. American Journal of Hospice
and Palliative Care. 1993;10(5):32-35
• Marcant D, Rapin CH. Role of physiotherapist
in palliative care. Journal of Pain and
Symptom Management. 1993;8(2):68-71.
• Marciniak CM, Sliwa JA, Spill G,
Heinemann AW, Semik PE: Functional
outcome following rehabilitation of cancer
patient. Archives of Physical Medicine and
Rehabilitation. 1996;77:54-57.
• Briggs R. Physical therapy in hospice care.
Rehabilitation Oncology. 1997;15(3):16-17.
• Sabers SR, Kokal JE, Girardi JC, Philpott
CL, Basford JR, Therneau TM, Schmidt KD,
Gamble GL.: Evaluation of consultationbased
rehabilitation for hospitalized cancer
patients with functional impairment. Mayo
Clinical Proceedings. 1999;74:855–861
• Mackey KM & Sparling JW. Experiences of
older women with cancer receiving hospice
care: significance for physical therapy.
Physical Therapy. 2000;80:459-468.
continued on next page
We have published
research to identify
the impact of our
interventions on
hospice populations…
NewsLine 29

continued from previous page
• Briggs R. Models for physical therapy
practice in palliative medicine.
Rehabilitation Oncology. 2000;18(2):18-19.
• Frost M. The role of physical,
occupational, and speech therapy in
hospice: patient empowerment. American
Journal of Hospice and Palliative Care.
2001;18(6):397-402.
• Dal Bello-Haas V. A framework for
rehabilitation of neurodegenerative
diseases: planning care and maximizing
quality of life. Neurology Report.
2002;26(3):115-129.
• Nieuwboer A, DeWeerdt W, Dom R,
Bogaerts K. Prediction of outcome of
physical therapy in advanced Parkinson’s
disease. Clinical Rehabilitation.
2002;16(8):886-893.
• Montagini M, Lodhi M, Born W. The
utilization of physical therapy in a
palliative care unit. Journal of Palliative
Medicine. 2003(6)1:1-17
• Pizzi MA, Briggs R. Occupational and
physical therapy in hospice: the facilitation
of meaning, quality of life, and wellbeing.
Topics in Geriatric Rehabilitation.
2004;20(2):120-130.
• Gudas SA. Terminal Illness, in Psychology
in the Physical and Manual Therapies. New
York, NY: Churchill Livingstone; 2004;333-
350.
• Galantino ML, Schimd P, Botis S, Dagan C,
Leonard SM, Milos A. Exploring wellness
coaching and traditional group support
for breast cancer survivors: A pilot study.
Rehabilitation Oncology. 2010;28(1):20-24.
• Kumar SP, Jim A. Physical Therapy in
Palliative Care: From Symptom Control to
Quality of Life: A Critical Review. Indian
Journal Palliative Care. 2010;16(3):138-146.
• Briggs R, Mueller K. Hospice and end of
life. In: Guccione AA, Wong RA, Avers D.
(eds.) Geriatric Physical Therapy. 3rd ed. St
Louis: Elsevier;2011.
• Downing GM, Lynd PJ, Gallaher R, Hoens
A. Challenges in understanding functional
decline, prognosis and transitions in
advanced illness. Topics in Geriatric
Rehabilitation. 2011;27(1):18-28.
• Javier NSC, Montagini ML. Rehabilitation
of the hospice and palliative care
patient. Journal of Palliative Medicine.
2011;14(5):638-648.
• Briggs R. Clinical decision making for
physical therapists in patient-centered
end-of-life care. Topics in Geriatric
Rehabilitation. 2011;27(1):10-17.
• Mueller K, Decker I. Impact of physical
therapy intervention on functional
outcomes and quality of life in a
community hospice. Topics in Geriatric
Rehabilitation. 2011:27(1):2-9
• Cobb S, Kennedy N. Physical function
in hospice patients and physiotherapy
Interventions: A profile of hospice
physiotherapy. Journal of Palliative
Medicine. 15(7):760-767.
30 NewsLine

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• Enhance your NHPCO membership investment
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NewsLine 31

Short Takes
Award Winners
Recognized at MLC
Congressman Earl Blumenauer, a longtime hospice
champion, welcomed more than 2,000 members and
industry experts to NHPCO’s 28th Management and
Leadership Conference held on April 25–27.
As part of the conference and related events, six
awards were presented to leaders involved in the field.
Inaugural Quality Leadership Award:
Joan Teno, MD, MS
This new award
was established
to recognize
demonstrated
leadership,
commitment, and
innovation that
have significantly
contributed to
hospice organization excellence and improved care
delivery and outcomes.
Dr. Teno was recognized as the first recipient of this
award for her work as a researcher and a clinician
dedicated to understanding how to measure and
improve the quality of care for people at the end of life.
Dr. Teno is a professor of Community Health and
Medicine and associate director of the Center
for Gerontology and Health Care Research at the
Brown Medical School as well as a health services
researcher and hospice medical director. She is
board certified in internal medicine, with added
qualifications in Geriatrics and Palliative Medicine.
Among her many accomplishments was her work as
the lead investigator in a research effort to create a
Toolkit of Instruments to Measure Care at the End of
Life. As part of this grant effort, she also created the
Family Evaluation of Hospice Care, a longstanding
NHPCO performance measure that is used by
hospices nationwide.
COS, FHSSA and NHF Also Present Awards
COS Trailblazer Award
The Council of States awarded Hawaii’s state hospice
and palliative care organization, Kokua Mau, the
2012 Trailblazer Award for its development of an
innovative method to improve access to palliative
care and increase quality of care among Hawaii’s
providers. Its work, which included expanding
educational opportunities for private healthcare
plans, can serve as a model for other states.
FHSSA Global Partnership Award
The third annual FHSSA Global Partnership Award
was presented to the Center for Hospice Care and
the Hospice Foundation of South Bend, Indiana, and
its partner, the Palliative Care Association of Uganda
in Kampala, Uganda. To learn more, see the release
on the FHSSA website.
Three NHF Awards
At the National Hospice Foundation Gala, held on
April 25 in conjunction with the conference, three
awards were presented: the Morfogen Art of Caring
Award to Pulitzer-prize winning journalist, Ellen
Goodman; the Philanthropic Inspiration Award to
Run to Remember founder, Stuart Lazarus; and
the Buchwald Spirit Award for Public Awareness to
actress and hospice volunteer, Torrey DeVitto. To
learn more, see Giving Matters.
32 NewsLine

2014 Circle of Life Award:
Call for Nominations Ends August 5
Sponsored annually, the prestigious Circle of Life Award celebrates
innovation in palliative and end-of-life care. In 2014, up to three
organizations will win the award while others may be recognized with
citations of honor.
All organizations or groups in the U.S. that provide palliative or endof-life
care are eligible for the award. As a proud sponsor, NHPCO
encourages all members to participate in the nomination process.
Visit the
Website of
the American
Hospital
The Circle of Life Award: Celebrating Innovation in Palliative and End-of-Life Care is
presented annually to honor organizations striving to improve the care provided to
To nominate
patients
an
with
organization
life-threatening conditions
(either
or near
your
the end
own
of life. In
or
2012,
another),
up to three
visit the
organizations will win Circle of Life Awards; additional organizations may receive
website of the Citations American of Honor. Awards Hospital and citations Association will be presented the to American request Hospital an application.
Association Health Forum Summit, July 19-21, 2012, in San Francisco.
But please act soon—applications must be submitted by August 5, 2013.
To nominate an organization or program (either your own or another), please go to
http://www.aha.org/aha/news-center/awards/circle-of-life/circleoflife-nominations.html or
e-mail circleoflife@aha.org. The application is available at
http://www.aha.org/aha/news-center/awards/circle-of-life/application.html. All
organizations or groups in the United States that provide palliative or end-of-life care are
eligible for the award.
Association
to Learn More
Applications are due August 8, 2011.
More information on the award and previous recipients is available at
http://www.aha.org/circleoflife. Please call the American Hospital Association Office of
the Secretary at 312/422-2704 or e-mail circleoflife@aha.org with questions about the
award process or application.
Major sponsors for the Circle of Life Award are the American Hospital Association, the
Catholic Health Association, National Consensus Project for Quality Palliative Care, and
the National Hospice and Palliative Care Organization & National Hospice Foundation;
the American Academy of Hospice and Palliative Medicine and the National Association
of Social Workers are Circle of Life cosponsors.
The awards are supported, in part, by grants from the Archstone Foundation and the
California HealthCare Foundation, based in Oakland, California.
NewsLine 33

Member News and Notes
$10,000 LIVESTRONG Grant to Benefit
HCC’s Palliative Care Services
In partnership with Hospice & Community Care
(HCC) based in Lancaster, PA, Lancaster General
Hospital has received a $10,000 grant from the
LIVESTRONG Foundation to advance palliative care
and pursue certification.
HCC utilized social
media to spread the
word about the grant
competition and to request online votes to support
the palliative program within the community.
While 72 organizations throughout the country
received LIVESTRONG grants, Lancaster General
Health was the only Pennsylvania health system to
win funding for its Palliative Care program.
HOM Recognized for Mobile App to
Improve Communication with Families
Hospice of Michigan (based in Grand Rapids) is
being presented with a Spirit of Innovation Award
at the June Home Care & Hospice LINK Conference
in Chicago.
Its mobile app, HOM
Cares, notifies family
members and friends
when a care provider
visits a loved one.
Those who have the
app can see a picture
of the caregiver, the
date and duration of the visit, and information about
the caregiver’s background and type of support
provided— such as medical, spiritual or social work.
The app was developed with a $24,500 gift from
Verizon and an in-kind donation from Compuware.
Hospice by the Sea Wins the Hospice
Regattas National Championship
The sailors who won the 23 regional hospice
regattas held during 2012 gathered on Florida’s
Tampa Bay during the weekend of April 12 to
compete for the national championship.
Hospice by the Sea as it takes the lead in the national
championship. (Photo courtesy of St. Petersburg Yacht Club.)
After three days of intense sailing, the four-man
crew representing Hospice by the Sea (Boca Raton,
FL) took first place—led by Captain Bret Moss,
whose grandfather had taught him to sail more
than 40 years ago and had also been served by
hospice. Special kudus also go to the organization’s
senior director of business development, George
Tokesky, who stepped up at the last minute when
one of the regular crew members had to withdraw
from the race.
Avow Wins 34th Annual Telly Award
Avow (based in Naples, FL) took the Bronze at
the 34th Annual Telly Awards which attracted
more than 11,000 entries from 50 states as well as
numerous countries.
The program was recognized for three of its
current broadcast advertisements which feature
a family testimonial and two reenactments.
The campaign was produced by members of the
34 NewsLine

Avow advancement team,
with creative services
assistance from a local
marketing firm. The
commercials can be
viewed at avowcares.
org/video-gallery.
Members of the Avow
advancement team
(l to r): Deborah Jonsson,
Kit Chamberlain, Karen
Stevenson and Kylee A. Pitts.
Joint Effort Leads to Second Introductory Class on
Hospice Care at Prestigious Notre Dame
For the second year in a row, the Center for
Hospice Care (South Bend, IN) and the University
of Notre Dame teamed up to offer students a oneday
introduction to hospice and palliative care.
This year’s class, which attracted an impressive
95 students (15 more than last year), featured
12 different presentations that focused on how
hospice and palliative care is given in the current
Mark Murray
healthcare system. The presentations were taught
by various members of the interdisciplinary team—including Center for
Hospice Care CEO, Mark Murray.
Have News to Share?
Add Us to Your Media
Distribution List:
newsline@nhpco.org
NHPCO Staff Lend a Hand as
Spring for Alexandria Volunteers
More than 400 volunteers spent most
of Friday, May 3, at 50 sites around
Alexandria, VA, as part of “Spring for
Alexandria”—an annual effort to make the
city a cleaner, more beautiful place to live
and work.
Joining in were 10 staff from NHPCO,
who painted 10 rooms at a local shelter—
then went the extra mile by doing all the
clean-up!
NewsLine 35

Tip of the Month
Compliance With the
New HIPAA Omnibus Rule
On January 17, 2013, an Omnibus
Final Rule was released by the
U.S. Department of Health and
Human Services’ Office for Civil Rights.
This Final Rule implements modifications to
HIPAA (the Health Information Technology
for Economic and Clinical Health Act 1 )—
and marks the most significant re-write of
the HIPAA rules since the law was enacted.
Compliance with most of the new
requirements introduced in this rule
is required by September 23, 2013. An
extended compliance period is provided for
the modification of certain existing business
associate agreements, as described in the rule.
So What Do Providers Need to Do?
Be sure to complete the following updates
by the September 23, 2013 deadline:
• Update your patient privacy notices
• Update your policy on reviewing
and reporting a breach of protected
health information (PHI) or electronic
protected health information (ePHI)
• Update your business associate
agreements (unless they qualify for an
extended transition period)
• Update your fundraising communication
to include an “opt-out” option for patients.
Learn More:
NHPCO has developed a helpful information
sheet that gives hospice providers more
details about the final rule. To access the
PDF, visit www.nhpco.org/hipaa.
The final rule can also be accessed online
for reference: Omnibus Final Rule.
1
The Federal Register version of the Final Rule was
published on January 25, 2013. 78 Fed. Reg. 5566
(Jan. 25, 2013).
Make Sure You See Every
Regulatory Alert and Round-Up!
Be sure to bookmark the Regulatory
Alerts and Publications webpage
of the NHPCO website for
ongoing reference.
It lists all Alerts and Round-Ups issued
in chronological order, so it’s a good
way to make sure you’re up to date
on important news and changes
affecting hospice providers.
(These notifications are emailed to
members who opt-in for Regulatory
Communications but, oftentimes,
SPAM filters impede delivery.)
36 NewsLine

New Online Courses
from NHPCO’s E-OL
NHPCO’s End-of-Life Online (E-OL) offers online courses
that are convenient, efficient learning modules for
staff and volunteers at all levels of your organization.
Here are a few of the recent additions:
• Hospice and Palliative Care, Simply the Best with Ira Byock
• Identifying and Addressing Traumatic Stress at the End-Of-Life
with Therese Rando
• Shed for Success: How to Stay Alive and Thrive in the Midst of
Turbulent Healthcare Change with Kathy Dempsey
• Pediatric Palliative Care Training Series - Module 7:
Pediatric Palliative Care Symptom Management
Plus, Several on Volunteer Management and Leadership:
• Regulatory Matters for Volunteer Leaders with Judy Lund Person
• Do it Well, Make it Fun, the Key to Success in Volunteer
Management with Ron Culberson
• Ignite your Leadership Potential with Claire Tehan
• The New Breed of Volunteer with Thomas McKee
• Volunteers: Exceptionalism in Care and Practice with
Gary Gardia and Danae Delman
Check Out the New ‘A-Z’ Course List Too:
To easily peruse the range of courses available, visit the
E-OL “A to Z Course List” on the NHPCO website and
simply scroll and click on the offerings of interest.
The webpage about each offering shows the cost of
the course, details about what it covers, and whether
it qualifies for CE/CME.

Videos Worth Watching
This year’s National Hospice Foundation
Gala, held on April 25 in conjunction with
MLC, paid tribute to the youngest and
bravest we care for in hospice—our pediatric
patients. As part of the event’s program,
NHF aired this moving video and raised
$28,000 in just 10 minutes. The money will
go toward development of educational resources to raise awareness among
consumers and support the work of providers. Watch the video now−and
feel free to share it with your colleagues and supporters.
(The new edition of NHPCO’s ChiPPS Pediatric Palliative Care E-newsletter
is now out, with articles about supporting fathers and the other male
members of the child’s family. Be sure to take a look.)
Links to Some
Resources on the
NHPCO Website
Quality and Regulatory
Quality Reporting Requirements
QAPI Resources
Regulatory Center Home Page
Fraud and Abuse
Past Regulatory Alerts and
Roundups
Staffing Guidelines
Standards of Practice
1731 King Street, Suite 100
Alexandria, VA 22314
703/837-1500
www.nhpco.org • www.caringinfo.org
NewsLine is a publication of the National Hospice and Palliative Care Organization
Vice President, Communications . . . . . . . . . . . . . . . . . . . . .Jon Radulovic
Editor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Sue Canuteson
Advertising Inquiries . . . . . . . . . . . . . . . . . . Grace Zupancic, 703/837-3134
Membership Inquiries . . . . . . . . . . . . . . . . . . . . . . . . . . . 800/646-6460
Copyright © 2012, NHPCO and its licensors. All rights reserved. NHPCO does not
endorse the products and services advertised in this publication.
All past issues of NewsLine are posted online: www.nhpco.org/newsline.
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Outreach
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2012-13 Outreach Materials
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the Underserved
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Education Home Page
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Past issues of ChiPPS Newsletter

SPRING 2013
Hospice Patient and Veteran Visits World
War II Memorial
Honoring Service is an Important Part of One Man’s
End-of-Life Experience
On a brisk Monday morning in April, 92-year-old Veteran Kenneth Baeth
absorbed the sight of the World War II Memorial on the National Mall in
Washington, DC for the first time. From the viewpoint of his wheelchair,
Baeth participated in a ceremony honoring his service along with that of
dozens of fellow Veterans from his home state of Montana. Each of the
Veterans was flown to Washington under “Big Sky Honor Flight” a Montana
program that is a member of the Honor Flight Network, a non-profit
organization created to honor America’s WWII Veterans for all their sacrifices.
Kenneth Baeth and son, Roger, visit the World War II
Memorial in Washington, DC
• CONTENTS
Hospice Patient and Veteran Visits World
War II Memorial; page 1
National Hospice Foundation 9th Annual
Gala; page 2
Lighthouse of Hope Fund Provides
Meaningful and Memorable Experiencesfor
Adult Hospice Patients; page 3
Foundation Board Chair, Samira Beckwith
Elected Vice-Chair of National Coalition of
Cancer Survivorship; page 3
Honor. Remember. Invest.; page 4
NHPCO Begins Collaborative Efforts with
the Funeral Industry; page 4
Run to Remember: A Look at Two Special
Kentucky Bourbon Chase Runners; page 5
The program, with 121 hubs in 41 states, brings World War II Veterans to
Washington, DC so that they may see the memorial erected in their honor.
Baeth is facing the end of life with the help of his children and Rocky
Mountain Hospice. He traveled to Washington with his oldest son, Roger
and several volunteers from Rocky Mountain Hospice.
“It takes a lot of courage to get old,” said Roger. His father was nervous about traveling
because of his health, Roger said, but he was loving every minute of the experience. Baeth
contracted mesothelioma as a result of asbestos exposure while working in a mine as a
young man; he is now dying of heart disease. Making the trip required extra physical
therapy to increase his stamina and mobility.
At the age of 20, Kenneth Baeth’s dream of flying became a reality when he enlisted in the
U.S. Army Air Corps. It was 1942, in the midst of World War II. Standing at 5’2” tall,
Kenneth Baeth looked like a perfect candidate to be a nose gunner, a man who crawled
inside the nose of a fighter plane to operate a machine gun turret.
“I didn’t dream it would be so big,” Baeth remarked about the memorial. “The U.S. can
pull itself together to do anything,” he said. During the ceremony, Baeth met another nose
gunner who fought in the Pacific during the war. The two exchanged phone numbers and
planned to talk and exchange stories upon returning to Montana.
The National Hospice and Palliative Care Organization works with the U.S. Department of
Veterans Affairs (VA) to meet the unique needs of Veterans like Baeth with terminal illness.
The We Honor Veterans program, developed in collaboration with the VA, provides local
hospices with resources to broaden education and understanding of how best to honor
our Veterans and respect their wishes and concerns at the end of life. Funds raised by the
National Hospice Foundation support the We Honor Veterans program.
To learn more about We Honor Veterans, visit: www.wehonorveterans.org.
To learn more about the Honor Flight Network, visit: www.honorflight.org.
To make a donation, visit www.nationalhospicefoundation.org/veterans
A newsletter of the National Hospice Foundation | Spring 2013 1

Employees of The Elizabeth Hospice join in on the NHF Gala Celebration
National Hospice Foundation 9th Annual Gala
Honored Pediatric Palliative Care and Hospice
Patients and Caregivers
“Our
celebration
was held in
tribute to
the youngest
and bravest
of those we
care for in
hospice”
Outstanding Efforts in Supporting
Hospice Recognized During
Celebration
On Friday, April 26th, NHF held its 9th
Annual Gala as part of the NHPCO’s 28th
Management and Leadership Conference at
the Gaylord National Resort and Convention
Center at National Harbor, MD.
“Our celebration was held in tribute to the
youngest and bravest of those we care for in
hospice: our pediatric patients. Hospice
professionals recognize that caring for
pediatric patients and their family members
requires a unique approach and set of skills.
NHPCO works to raise awareness and
provide educational resources to those
providing that care. We’re thankful to those
who joined in our celebration in support of
that work,” said J. Donald Schumacher,
president and CEO of NHPCO.
Local ABC News Anchor, Greta Kreuz served
as Mistress of Ceremonies for the event
attended by over 500 guests. Three awards
were presented to individuals who have
contributed to hospice in significant and
unique ways.
Stuart Lazarus received the Philanthropic
Inspiration Award for his commitment to
raising funds for hospice. In 2002, Lazarus
combined his love of running with his
passion for hospice to create a successful
fundraising program, Run to Remember
(www.runtoremember.org). This program
gives runners and walkers an opportunity to
celebrate and honor the memory of their
loved ones and raises funds for hospice on a
local, national, and international level.
Ellen Goodman was granted the
Morfogen Art of Caring Award. The
Pulitzer Prize- winning journalist received
the award for The Conversation Project
(theconversationproject.org), an effort to
engage the public in conversations about
the end of life by sharing stories about
“good deaths” and “bad deaths” and offering
tools to make these conversations easier.
Torrey DeVitto, an actress and active
hospice volunteer, was given the Buchwald
Spirit Award for Public Awareness. As
NHPCO’s very first Hospice Ambassador,
DeVitto frequently finds opportunities
through interviews, social media, and
appearances to bring more attention to
hospice care and bring awareness to a
2
A newsletter of the National Hospice Foundation | Spring 2013

Lighthouse of Hope Fund Provides Meaningful and
Memorable Experiences for Adult Hospice Patients
NHF has launched the Lighthouse of
Hope Fund, a new program that will help
local hospice programs create
meaningful and memorable experiences
at the end of life for adult patients and
their family members.
Kelli Singleton, Tracey Truscott, Cindy Scott, Jennifer
Hudes, Laura Avanesyan and Monica Lewis McCommas
of Silverado Hospice.
younger age group. She created the theme
for the 2012 National Hospice and Palliative
Care Month, “Comfort. Love. Respect.”
Nearly $100,000 was raised during the event,
including over $29,000 from a live auction.
These funds will be used to support all of
NHPCO’s work in pediatric hospice care.
NHF would like to thank its Gala Sponsors:
Ruby Sponsors:
• Suncoast Solutions
• Suncoast Hospice
Tanzanite Sponsors:
• Gentiva Hospice
Amethyst Sponsors:
• Samira K. Beckwith and Hope
HealthCare Services
• Center for Hospice Care
• Chapters Health System
• Community Health Accreditation Program
• The Elizabeth Hospice
• Gilchrist Hospice Care
• Glatfelter Healthcare Practice
• VITAS Innovative Hospice Care
Next year’s gala will be held on Friday,
March 28, 2014 also at the Gaylord
National Resort and Convention Center
in conjunction with NHPCO’s 29th
Management and Leadership Conference.
By choosing to participate in the Fund,
which includes an annual $500
registration fee, hospice programs will be
able to request up to $1,500 in total on
behalf of their patients by the end of the
year. These funds might be used toward
any number of life experiences for their patients such as flying loved ones in to visit,
special events such as trips or celebrations, or any opportunity to spend quality time
with family and friends.
“We know many of the ways hospice improves quality of life for patients and family
caregivers through skilled interdisciplinary care. Our new Lighthouse of Hope
program will allow hospices to add another dimension to the services they provide
to those under their care,” said John Mastrojohn, NHF executive director.
Seed funding for the Fund came from the assets of the Lighthouse Foundation,
which were generously designated to NHF in mid-2012 when the parent hospice of
the Lighthouse Foundation was purchased. The Fund will be sustained through
annual fees of participating hospices, generous contributions of individuals,
corporations, and foundations.
To learn more about the Lighthouse of Hope Fund, or to make a donation, visit:
www.nationalhospicefoundation/lighthouseofhopefund.
Foundation Board Chair, Samira Beckwith
Elected Vice-Chair of National Coalition of
Cancer Survivorship
Samira Beckwith,
Foundation Board Chair
Samira Beckwith, Foundation Board Chair and president and
CEO of Hope HealthCare Services, has been elected vice chair
of the board of directors for the National Coalition of Cancer
Survivorship, which advocates for quality cancer care for all
people touched by cancer and provides tools that empower
people to advocate for themselves.
Beckwith has twice survived cancer; she was diagnosed with
Hodgkin’s lymphoma at age 24 and later, breast cancer. Her
experiences helped shaped Beckwith’s career mission to ensure access to quality,
compassionate health care services for all.
NHF congratulations Samira on her new role, and is grateful for her continued
dedication and service to hospice.
A newsletter of the National Hospice Foundation | Spring 2013
3

NHPCO Begins Collaborative Efforts
with the Funeral Industry
Work Begins with a Joint Effort with
National Funeral Directors Association
The end of life is a difficult time for the family members and loved
ones helping the patient through the last phase of life. In the
midst of their grief, arrangements must be made to honor the
person who has died, including funeral details. Because of the
shared experience in working with families through this process,
NHPCO has begun efforts to bring hospice professionals and the
funeral service industry together to work and learn from one
another. The first such collaboration is with the National Funeral
Directors Association (NFDA).
Hospice professionals are skilled in providing pain management
and addressing the psychological, social and spiritual needs of
not only the patient, but their loved ones as well. That care
continues into the bereavement process. Memorial services and
funerals are often an important part of that process, and funeral
directors play a critical role in ensuring that those services reflect
the life that is being honored and are meaningful to family
members and loved ones.
Often, hospice workers develop close bonds with the families they
care for and are relied upon for guidance and advice following the
death of their loved one. Funeral directors are trained and
experienced in the many options available to families and are
there to work with families to help them commemorate the life of
their loved one in a meaningful way. By working together, hospices
and funeral homes can share their expertise and assist families
through this emotional process.
“There are many examples of hospices working closely with funeral homes in their area to ease the difficulty of planning for the
emotional time that follows the death of a loved one. By collaborating on an association level, such as with NFDA, we can help to
spread those relationships,” said J. Donald Schumacher, president and CEO of NHPCO.
“Each of our professions brings a unique perspective to serving the dying, those who have died, and the bereaved. We look
forward to developing materials and tools with NHPCO to share our experiences and expertise. The families we care for will
benefit by two organizations focused on end-of- life care working hand-in-hand to ease the transition,” said Robert “Bob” T.
Rosson, CFSP, CPC, NFDA president.
NFDA is the world’s leading and largest funeral service association, serving 18,500 individual members who represent nearly
10,000 funeral homes in the United States and 43 countries around the world. NFDA offers funeral professionals comprehensive
educational resources, tools to manage successful businesses, guidance to become pillars in their communities and the expertise
to foster future generations of funeral professionals. NFDA is headquartered in Brookfield, Wis., and has an office in Washington,
D.C. For more information, visit www.nfda.org.
By sharing educational materials and resources, hospice and funeral service professionals will learn more about the areas of
expertise each bring to the table. Future plans for collaboration include presenting educational tools at the professional
conferences of each organization, and eventually developing information directed toward consumers.
4 A newsletter of the National Hospice Foundation | Spring 2013

Run to Remember: A Look at Two Special Kentucky
Bourbon Chase Runners
Arjit and Sourav Guha
One Man Runs in Honor of His Brother Who
Sought to Turn Personal Adversity into
Positive Change for Others
Sourav Guha will join the Run to Remember family this
fall as he and 11 of his friends take on the Bourbon
Chase. The race is a 200-mile overnight relay along the
Kentucky Bourbon Trail. The group will be running in
honor of Guha’s brother, Arijit, who died of metastatic
colon cancer earlier this year: www.active.com/donate/
runtoremember2013/souravguha.
Arijit was diagnosed with Stage IV cancer in 2011, shortly after his 30th birthday, while a
graduate student at Arizona State University. After less than a year of treatment, he reached
the lifetime coverage cap on his student health policy. Always a resourceful activist and
relentless advocate on behalf of himself and others, Arijit created a website (poopstrong.org)
to raise awareness of his situation and funds for his treatment.
Facing medical bankruptcy, but keenly aware that his situation was not dissimilar from that of
many others, Arijit also took to social networks to demand better coverage and received
international press coverage of his successful campaign. As a result, the insurance company
agreed to extend their coverage of his medical bills.
Arjit and his wife, Heather, were able to donate the more than $130,000 they had raised to a
variety of cancer-related charities assisting those in financial need. Grateful for opportunity to
help others, Arijit always emphasized that his personal victory should only be considered the
beginning of a much broader movement. He was proud that the attention he received as an
individual was part of a much larger national conversation about inequities in healthcare
access in American society.
Toward the end of 2012, with his tumors having further metastasized, Arijit made the difficult
decision to end treatment. At the beginning of this year, he began receiving palliative home
care from Hospice of the Valley in Phoenix. He passed away peacefully, with his wife and his
hospice nurse by his side, in March. Arijit faced life and death with passion and a sense of
humor and perspective.
“Wherever he went,” says Sourav, “fun and friends were sure to surround him, so the
Bourbon Chase seems a fitting way to remember and honor Arijit. He encountered every
situation in life with positivity and gratitude, and I would like for all of us who loved and
admired him to try to do the same. We are so grateful for the care and respect that he and
we received from Hospice of the Valley, and in particular from his nurse, Cheryl Amburgey,
and social worker, Ray Unks.”
The 12-person team has come up with an
impressive array of creative fund-raising ideas.
Breeding and her colleagues will be
participating in a weekend festival held by
one of their physical therapy clinics. They
plan to raise funds at the festival through a
silent auction, offering pay-per-minute
massages and selling tickets to employees
for a chance to throw a pie in the face of their
managers. Additional fund-raising efforts
of the team include:
• Selling chocolates for a local chocolate
factory in Lexington, KY
• Working at a portable stand at local
minor league baseball games
• Hosting bake sales
• Holding a charity Hip Hop Hustle
aerobics class
• Organizing a Cornhole Tournament
With all of these creative efforts, there is
no doubt team “Don’t Pull a Hammy” will
reach their goal of raising $6,000 for NHF
and Hospice of the Bluegrass. Their
donation page is www.active.com/donate/
runtoremember2013/teamdrayer.
NHF wishes Sourav, Christina, their teams and
all Run to Remember participants the best of
luck in their race and fundraising goals! You
too can run any race at any pace to raise funds
for hospice. Visit www.nationalhospice
foundation/runtoremember.org to learn more
about NHF’s signature fundraising and race
training program.
Christina Breeding with Lexington Legends mascot
Team “Don’t Pull a Hammy” Pulls Out All the Stops for Creative Fundraising
Christina Breeding will also be participating in the Bourbon Chase in October as team
captain for Drayer Physical Therapy Institute. Team “Don’t Pull a Hammy” will be raising
funds for NHF and Hospice of the Bluegrass, which cared for both of Christina’s grandfathers
at the end of their lives.
“I want others to experience the same comforting care and have the opportunity to be at
home with the people they love the most in those final moments. Running this race in
memory [of my grandparents] is one way I can do that,” said Christina.
A newsletter of the National Hospice Foundation | Spring 2013
5

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