March 2008 NewsLine - National Hospice and Palliative Care

Transcription

National Hospice and Palliative Care
Organization
Access:
Beyond Cancer
C
o
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e :P
Pa la
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55 ing
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s
March 2008
N
ew
Quarterly Insights Edition
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Table of Contents
March 2008
Insights:
NCHPP 2008 Section Leaders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
4
Introduction:
Meeting the Needs of Today’s Patients . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
6
Section 1 – Obstacles
Using What We’ve Learned to Expand Access . . . . . . . . . . . . . . . . . . . . . . . . . . .
8
Section 2 – Options
The Changing Face of Access . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
12
ALS Patient Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
14
Spiritual Care for Nonverbal Patients . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
18
Understanding the Mindset of Dementia Patients . . . . . . . . . . . . . . . . . . . . . . .
20
Treating Pain in Nonverbal Patients . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
22
Grief and the Older Adult . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
26
Section 3 – Opportunities
Not Just for Cancer Anymore: Diversifying Your Patient
Mix Through Proactive Marketing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
30
Rehabilitation Tools to Promote Access . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
34
Improving Access to Patients With Pulmonary Fibrosis . . . . . . . . . . . . . . . . . . .
37
Promoting Responsiveness in End-of-Life Care . . . . . . . . . . . . . . . . . . . . . . . . .
41
NewsLine:
Improving Quality of Life for Patients With Advanced Dementia . . . . . . . . . . . . . . 43
People and Places . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
47
A Closer Look at NHPCO’s Inclusion and Access Toolbox . . . . . . . . . . . . . . . . . .
49
Marketplace Picks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
50
Dates to Remember . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
50
New CoPs: Planning Tips for Success . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
55
NewsLine is a publication of the National Hospice and Palliative
Care Organization • ISSN 1081-5678 • Vol. 19, No. 3
Vice President, Communications:
Communications Manager:
Advertising Inquiries:
Membership Inquiries:
Jon Radulovic
Sue Canuteson
Barry Black, 703/647-1577
800/646-6460
Copyright © 2008, NHPCO and its licensors. All rights reserved.
NewsLine
3
National Council of Hospice
and Palliative Professionals
2008 Section Leaders
In this first quarterly issue of the year, NHPCO extends special thanks to these exemplary
members for service to their disciplines and to the end-of-life care field.
CHAIR
Shareefah Sabur, MA, MNO, CDP
Hospice of the Western Reserve, Inc.
Cleveland, OH
Shareefah Sabur has been at Hospice of the Western
Reserve since 1993 and serves as director of
planning and evaluation. In addition to her new role as NCHPP
chair, she serves on NHPCO’s Standards Committee, the board of
Foundation for Hospices in Sub-Saharan Africa, and as faculty for
NHPCO’s Manager Development Program. She previously served
as the Performance Improvement/Quality Assurance section
leader for six years.
VICE CHAIR and
VOLUNTEER/VOLUNTEER MANAGEMENT
Kathy Roble, MS
The Hospice of the Florida Suncoast
Clearwater, FL
Kathy Roble has been director of volunteer
services for The Hospice of the Florida Suncoast since 1994
and has been a frequent presenter at local, state and national
conferences on topics related to volunteer management. In
addition to her service as section leader, she has now been
appointed vice chair of NCHPP.
ALLIED THERAPIST
Valerie Hartman, RN, CHPN, CTRN
Holy Redeemer Hospice • Philadelphia, PA
Valerie Hartman has 21 years of holistic hospice
nursing experience and, for the past 10 years,
has included the integration of massage and
bodywork therapy into her practice. Since 2002, she has
coordinated Holy Redeemer’s complementary therapies
program, overseeing and developing an innovative model of
professional complementary care. Prior to her appointment
as section leader, she served on the section’s steering
committee for five years. She also conducts hospice massage
workshops around the country.
BEREAVEMENT PROFESSIONAL
Patti Homan, PhD, LPC, FT
Hospice of Lancaster County • Lancaster, PA
Patti Homan is director for the PATHways Center
for Grief & Loss at Hospice of Lancaster County. For
more than 20 years, she has focused her clinical
training study and practice in the areas of death and dying,
crisis, trauma, and loss. In addition to her role as section
leader, Patti is a fellow in thanatology with the Association of
Death Education and Counseling where she serves as chair for
its Body of Knowledge Committee.
CEO/EXECUTIVE DIRECTOR/PRESIDENT
Vacant
4
NewsLine
CNA
Tandra Chandler, CNAII, CHPNA
Hospice & Palliative CareCenter
Winston-Salem, NC
Tandra Chandler has been a certified nursing
assistant for 29 years. For the past 15 years she
has worked for the Hospice and Palliative CareCenter, where
she is currently a CNA team leader. In addition to several
promotions and continued studies leading to her CNAII
designation, Tandra has earned certifications in phlebotomy,
EKG, and hospice and palliative care. Prior to accepting her
new role as section leader, she served on the section’s steering
committee for two years.
CLINICAL AND OPERATIONS MANAGEMENT
Sharon Stewart-Brown, LMSW
Harry Hynes Memorial Hospice • Parsons, KS
Sharon Stewart-Brown joined Harry Hynes
Memorial Hospice in 2004 and has served as
its southeast Kansas regional director for the
past two years. Prior to joining the program, Sharon was
an adjunct instructor at the University of Kansas where she
taught several graduate-level courses in spirituality and
cultural diversity. She also served as the director of disability
determination services for the state of Kansas for five
years, receiving both state and national recognition for her
outstanding service and leadership.
DEVELOPMENT/PUBLIC RELATIONS/MARKETING
Pam Brown, CFRE
Alive Hospice, Inc. • Nashville, TN
Pam Brown is executive vice president of community
development at Alive Hospice, where she has
worked for 11 years. She earned the Certified Fund
Raising Executive designation in 2002 and has been a frequent
presenter at NHPCO conferences. She was selected as the 2007
Fundraising Professional of the Year by the Nashville Chapter of
the Association of Fundraising Professionals.
FINANCE/INFORMATION SYSTEMS
Anne Hochsprung, CPA
The Hospice of the Florida Suncoast
Clearwater, FL
Anne Hochsprung is vice president of finance for
The Hospice of the Florida Suncoast, where she
has worked since 1999. Prior to joining the hospice, she spent
20 years working in the healthcare industry. In addition to her
role as section leader, Anne is part of the faculty for NHPCO’s
Hospice Manager Development Program and is a member of
the NHPCO Audit Committee.
NURSE
Pat Gibbons, BSN, CHPN
Beacon Place • Greensboro, NC
Pat Gibbons is director of Beacon Place, the 14-bed hospice facility operated
by Hospice and Palliative Care of Greensboro. Under Pat’s leadership, the
facility has been a nursing student placement site for RN to BSN students and
baccalaureate nursing students. In addition to her work as section leader, Pat has served
as a faculty coach in NHPCO’s Quality Improvement Collaboratives.
PERFORMANCE IMPROVEMENT/
QUALITY ASSURANCE
Susan Zimmerman, BA
Delaware Hospice, Inc. • Wilmington, DE
Susan Zimmerman is the performance improvement coordinator at Delaware
Hospice, where she has worked since 2001. She has presented both nationally
and locally on topics related to quality improvement.
PHARMACIST
Phyllis Grauer, RPh, PharmD
Palliative Care Consulting Group • Dublin, OH
Phyllis Grauer has been a palliative care consultant pharmacist for over 20
years and is founder of the Palliative Care Consulting Group. Following PCCG’s
merger with Hospiscript Services last year, Phyllis assumed the role of vice
president of clinical development. She is also an assistant clinical professor at the Ohio
State University College of Pharmacy.
PHYSICIAN
Joan K. Harrold, MD, MPH, FAAHPM
Hospice of Lancaster County • Lancaster, PA
Joan Harrold is medical director and vice president of medical services for
Hospice of Lancaster County. In addition to serving as section leader, she
is president of the Pennsylvania Hospice Network board of directors. She
also serves on the board of directors of the American Academy of Hospice and Palliative
Medicine and on the Hospice and Palliative Medicine Examination Committee of the
American Board of Internal Medicine.
National Council of Hospice
and Palliative Professionals
www.nhpco.org/nchpp
RESEARCH/ACADEMICS/EDUCATION
Joy Berger, DMA, BCC, MT-BC
Hosparus • Louisville, KY
Joy Berger is director for the Hosparus Education and Volunteer Center as well
as an adjunct music therapy faculty member at the University of Louisville.
She is board certified as both a music therapist and chaplain, and is author of
“Music of the Soul: Composing Life Out of Loss.”
SOCIAL WORKER
Sherri Weisenfluh, MSW, LCSW
Hospice of the Bluegrass • Lexington, KY
Sherri Weisenfluh has over 25 years of experience as a licensed clinical social
worker. She currently serves as associate vice president of counseling for
Hospice of the Bluegrass, a position she has held for 16 years. In addition to
her service as section leader, she teaches part-time at the University of Kentucky.
SPIRITUAL CAREGIVER
Carlyle Coash, BCC
Kaiser Permanente • Martinez, CA
Carlyle Coash has been a hospice chaplain since 2000, in Boulder Colorado
and now California. He is board certified with the Association of Professional
Chaplains.
IMMEDIATE PAST-CHAIR
Bob Miller, BA, MDiv
VITAS Healthcare Corporation® • Miami, FL
NewsLine
5
Introduction:
Meeting the
Needs of
Today’s
Patients
6
NewsLine
“E
xpanding access” challenges us to care for all eligible
patients—regardless of who they are, where they live, or the
disease that is affecting their life. But where does one begin?
While the demographics of each community you serve can influence your
access goals and priorities, this issue offers guidance for your work with
non-cancer patients and families—a growing segment of our population
in need of hospice and palliative care.
According to NHPCO’s most recent research, nearly 56 percent of
hospice patients have non-cancer diseases.* In the dozen articles in this
issue, your colleagues address some of the special skills and knowledge
needed to better serve this population—from clinical guidance for
patients with ALS and pulmonary fibrosis to…treating pain in nonverbal
patients…educating volunteers on the mindset and needs of dementia
patients…and using proactive marketing to promote access in your
community.
At times, the very notion of “expanding access” can feel overwhelming
because it calls us to re-examine and refine many aspects of our work,
but as the authors of this issue’s opening article observe, “in the end,
it’s all worth it.” Today, expanding access has become more than a moral
imperative. It is a sound business strategy that can help ensure your
program’s long-term viability and growth. So, as you read the articles
in this issue, consider how the information imparted can help inform
your work. As the scientist and inventor, Charles Kettering, once said, “If
you’ve always done it that way, it’s probably wrong.”
Expanding access
has become more
than a moral
imperative. It is
a sound business
strategy that can
help ensure your
program’s longterm viability and
growth.
*NHPCO Facts and Figures: Hospice Care in America, 11/07 edition.
In addition to the insights your colleagues share in this issue, take
advantage of the other resources available to you as an NHPCO
member. See page 49 for a closer look at NHPCO’s Access and
Inclusion Toolbox and visit nhpco.org/access for a wealth of other
materials. Finally, consider attending NHPCO’s 2nd National
Conference on Access, being held in Minneapolis this coming
August (nhpco.org/conferences).
NewsLine
7
Using What We’ve Learned
to Expand Access
By Kathy Brandt, MS, and John Mastrojohn III, MSN, MBA
M
ost of us are aware of the history of
hospice in the United States. As we
know, in the late 1970s, the
industry’s early “pioneers” weren’t
satisfied with the way people
were being cared for at the
end of life and, through their
foresight and dedication,
challenged the status
quo—and largely changed
the healthcare system as
we knew it.
During the late 1980s and
early 90s, hospice leaders
also realized that, despite
the tremendous number
of cancer patients being
served, many other people
were dying without the
benefit of hospice care. Over
the years, this too has changed.
According to NHPCO, in 2006,
people dying from non-cancer diseases
comprised more than 55.9 percent1 of hospice
patients in this country.
For those newer to hospice this may seem like
business as usual, but for those organizations
as well as the hospice staff and volunteers who
have worked in the field for the past 10 to 15
years, there have been tremendous changes.
To name just a few, we have seen changes in
clinical care competencies, changes in acuity of
patients, changes in psychosocial and spiritual
issues affecting patients and families, and changes
in documentation related to eligibility. Even
though hospice is still a relative newcomer to the
healthcare field, we have seen incredible changes
over the span of our existence.
As we anticipate the release of the Medicare
Conditions of Participation for Hospice Care
in May 2008 (“hospice CoPs”)—yet another
significant change in our industry—it seems
appropriate that we examine what we have
already learned from caring for our diverse
patient mix and what more we can do to provide
better care to more people in need.
8
NewsLine
Not Everyone Dies on Time
Those of us working in hospice are familiar
with the description of “terminally
ill” as defined by the hospice
CoPs—“the individual has a
prognosis of six months or
less if the disease runs its
normal course.”2 The entire
structure of the benefit was
predicated on people dying
in that time frame.
The original regulations
allowed for hospice care to
be provided for two 90-day
periods and one 30-day
period, for a total of 210
days of Medicare hospice
coverage. As early as 1989,
the government recognized
the challenge of relying on
prognostication to determine
eligibility which led to the first of
several important changes to the benefit
structure. “Because of the scientific difficulty
in making a prognosis of six months or less,
the 210-day limit was repealed by the Medicare
Catastrophic Coverage Repeal Act of 1989.”3 As a
result, the benefit periods were restructured into
two 90-day periods, one 30-day period, and a
fourth unlimited period.
While this was a monumental change, it did not
address all the issues related to the challenge
of prognostication. For example, if a patient
either decided to leave hospice by revoking his/
her benefit or was discharged during the fourth
benefit period, that patient could never again be
admitted to hospice under Medicare. Fortunately,
the Balanced Budget Act of 1997 changed this;
it provided two 90-day periods, followed by an
unlimited number of 60-day periods, and allowed
people to be discharged from or revoke their
hospice benefit and still be re-admitted.
These simple changes to what now seems like
an illogical provision of the original Medicare
Hospice Benefit (MHB) was a tremendous relief
to hospice providers.
“These criteria form a reasonable approach
to the determination of life expectancy based
on available research….Coverage of hospice
care for patients not meeting the criteria in
this policy may be denied. However, some
patients may not meet the criteria, yet still
be appropriate for hospice care, because
of other comorbidities or rapid decline.
Coverage for these patients may be approved
on an individual consideration basis.” 4
Death
Low
Onset of incurable cancer
Often a few years, but decline
usually over a few months
Time
Long term limitations with intermittent serious episodes
Function
High
Mostly heart and lung failure
Death
Low
Sometimes emergency
hospital admissions
Prolonged dwindling
2-5 years, but death
usually seems “sudden”
Time
High
Function
In 1995, NHPCO (then the National Hospice
Organization) published the first edition of the
Medical Guidelines for Determining Prognosis in
Selected Non-Cancer Diseases. These guidelines
offered hospice providers a resource to help
determine and document eligibility for the MHB
for those with non-cancer diagnoses. While these
criteria are far from perfect, they still serve as
a model for most of the hospice Local Coverage
Determinations (LCDs), developed by the
RHHI fiscal intermediaries. Readers should be
cautioned however, that the Centers for Medicare
& Medicaid Services (CMS) clearly describe the
limitation of the LCDs in establishing prognosis:
Function
Yet even with these important changes, the MHB six-month prognosis
requirement—which works quite well for most people with cancer—puts
a tremendous burden on hospices when serving non-cancer patients. Dr
Joanne Lynn’s research regarding the trajectory
of patients living with end-stage disease shined
light on the need for even more flexibility in
The Typical Illness Trajectories for People
the MHB when meeting the needs of people
With Progressive Chronic Illness*
with non-cancer diagnoses. The graphs at
Short period of evident decline
right clearly illustrate what hospice providers
High
Specialist palliative
care input available
have always known— not all patients die in a
Mostly cancer
predictable manner or “on time.”
Mostly frailty and dementia
Death
Low
Onset could be deficits in functional
capacity, speech, cognition
Quite variable –
up to 6-8 years
Time
With more than 50 percent of all hospice
patients dying from non-cancer diseases and no
reliable way to predict prognosis, hospices are
performing a delicate balancing act. The most recent data reveals the
median length of stay in hospice declined in 2006 to 20.6 days—or less
than three weeks of hospice care.1 In light of Operation Restore Trust,
focused medical review, probe edits, targeted medical review and recent
comments from government officials that long lengths of stay in hospice
are troubling, many hospices may be reluctant to admit people with noncancer diagnoses until they are able to indisputably document terminality.
continued on next page
NewsLine
9
continued from previous page
Not All Patients and Families
“Look the Same”
Yesterday’s Hospice Isn’t Meeting the
Needs of Today’s Patients
What we have learned from all those we’ve
cared for is that each patient and family is very
different. These differences can be related to
diagnoses, physical symptoms, emotional needs,
spiritual preferences, and cultural beliefs and
practices, along with many other factors.
Healthcare is rapidly evolving to try and meet
the complex care needs of patients living with
chronic conditions, yet the basic model of
hospice has not changed much over the past
25 years. Some hospices are still reluctant to
remove artificial barriers to admission—barriers
that make some patients and their healthcare
providers feel like they have to “jump
through hoops” to gain admission.
On the upside, however, are
the hospice innovators who
began providing access for all
eligible patients in the past
several years. But, how
does that work?
Over the past 25 years of the MHB, we
have cared for increasing numbers
of patients with ALS, end-stage
Alzheimer’s and dementia, and
end-stage cardiac, pulmonary,
and renal diseases.
Moreover, we have seen
the ravages of the AIDS
epidemic when we cared
for patients who were
diagnosed only a short
time before their death,
and conversely, we
experienced the joy of
discharging AIDS patients
due to their positive
response to the then-newly
released protease inhibitors.
Caring for this diverse patient
mix has challenged us to expand
our clinical expertise to learn
about new and different medicines,
treatments, and therapies. Patients come to
us receiving treatments that were formerly
considered solely curative in nature, but are now
considered proper and acceptable to palliate
symptoms. Many hospice patients require more
complex care management and many have lived
with chronic illness for years, sometimes even
decades. All of these patients have taught us
new ways to manage symptoms and alleviate
suffering.
As we have already mentioned, certifying
patients for the MHB has become more
challenging, yet never has it been more
important. Increasingly, hospices are relying on
pulmonologists, immunologists, cardiologists,
geriatricians and neurologists in addition to
the oncologists and primary care physicians
previously found on staff to ensure they have
the expertise needed to document eligibility and
meet the complex care needs of patients. Some
programs are forming innovative partnerships
with local specialists to serve as advisors and
teach clinical staff the complexities of caring for
non-cancer patients.
10
NewsLine
Eligibility is based on the
existing regulations under
the MHB. It should be an
organizational philosophy
that can help a program
enhance access for all
eligible patients—that
is, those who meet the
regulatory requirements—by
removing self-imposed barriers
to admission.
For example, programs committed to
providing access for all eligible patients
would only admit patients who meet the MHB
definition of “terminally ill” (i.e., those with a sixmonth or less prognosis). However, they would also
admit people who:
•do not have a primary caregiver living in their
home;
•are not ready or willing to sign an advance
directive;
•may be receiving palliative radiation or
chemotherapy; and/or
•are receiving treatments to aggressively treat
symptoms that, 10 years ago, would not have
been defined as palliative but are considered
palliative today.
Providing access to all eligible patients also means
being staffed to perform after-hours and weekend
admissions and extended office hours to meet
the needs of referral sources, patients and family
caregivers.
It is also important to note, however, that there is
increased scrutiny of any programs with lengths
of stay that exceed the national average. Thus, hospices which embrace
the concept of access for all eligible patients must vigorously ensure
that patient documentation includes sound, consistent, clinically-based
evidence of continuing eligibility.
In the End, All the Work is Worth It
Hospice team members can provide countless examples of times when
patients and families struggled through the challenging work needed to
repair relationships with friends, family, God, or themselves as a means
to find peace. The same holds true for hospice programs. While it is
clearly a challenge to do the work that is necessary—to increase clinical
competency, to revise admission criteria, to serve patients with complex
care needs, and to continue to re-certify patients who meet the clinical
criteria for admission—in the end, all the hard work is worth it. It is worth
it because we know that hospice is the best model of care for people
living with a life-limiting illness.
So, while we have experienced great change and many challenges since
the inception of hospice in America, we can be proud as we reflect on
the care and comfort we have provided to patients and families. And, as
we forge ahead, we should anticipate the many changes to come with
enthusiasm—knowing that as we improve the care of those we serve, we
will one day look back on our work and conclude that, yes, it’s all been
worth it.
Kathy Brandt is NHPCO’s vice president of professional leadership,
consumer and caregiver services. She has more than 18 years of
experience in the hospice field, including seven years at The Hospice
of the Florida Suncoast in Clearwater, Florida where she focused on
community engagement and education.
John Mastrojohn is NHPCO’s vice president of quality and palliative care.
John has worked in various leadership roles within the healthcare field
for 26 years, most recently as founding director of the Department of
Palliative Care and Hospice Service, a hospital-based program at Summa
Health System in Akron. Ohio.
References:
1
NHPCO Facts and Figures: Hospice Care in America, November 2007
Edition. Retrieved January 26, 2008 from www.nhpco.org/research.
2
[48 FR 56026, Dec. 16, 1983, as amended at 52 FR 4499, Feb. 12,
1987; 50 FR 50834, Dec. 11, 1990]. Retrieved January 26, 2008 from
http://a257.g.akamaitech.net/7/257/2422/12feb20041500/edocket.
access.gpo.gov/cfr_2004/octqtr/pdf/42cfr418.3.pdf.
3
Federal Register/Vol. 70, No. 224/Tuesday, November 22, 2005 / Rules
and Regulations. Retrieved January 28, 2008 from www.cms.hhs.gov/
quarterlyproviderupdates/downloads/CMS1022F.PDF.
4
LCD for Hospice - Pulmonary Disease (L314). Retrieved January 26,
2008 from www.cms.hhs.gov/mcd/viewlcd.asp?lcd_id=314&lcd_
version=19&show=all.
5
Retrieved January 27, 2008 from http://www.hospicenyc.org/access.
html.
Some hospices are
still reluctant to
remove artificial
barriers to
admission—barriers
that make some
patients and
their healthcare
providers feel like
they have to “jump
through hoops” to
gain admission.
NewsLine
11
The Changing Face of Access
By Pat Gibbons, BSN, CHPN
I
n 1998, I wrote an article for NHPCO’s
membership magazine on “Caring for NonCancer Patients.” Now, 10 years later, it
is both interesting and rewarding to revisit
this topic—and think about what has been
accomplished over this past decade.
Certainly we have a new vocabulary within
hospice. The word “palliative,” for example, is
more frequently used when referring to hospice.
Many organizations, including NHPCO, have
included palliative in their name. Many hospice
providers are developing palliative care programs
and many hospital systems are partnering with
hospices to offer such services. End-of-life care
is now viewed as part of the continuum of care.
Those of us who are hospice professionals have
also added the word “palliative” to our name and
credentials. Our publications, as well, reflect this
new vocabulary.
When I wrote that article in 1998, NHPCO had
recently published its Medical Guidelines for
Determining Prognosis in Selected Non-Cancer
Diseases. Those guidelines presented programs
with an opportunity to expand access to more
people with a range of life-limiting illnesses. At
that time, over 60 percent of all hospice care
was provided to patients with a cancer diagnosis
(NHO, 1996). According to NHPCO’s figures for
2006, non-cancer diagnoses now represent
just 44.1 percent of the patients we serve, with
55.9 percent representing non-cancer diseases
(NHPCO’s Facts and Figures, 2007). Overall,
access to hospice care has increased.
Phrases such as “open access” and “just say
yes” have challenged us to think outside the box.
Programs are developing ways to provide quality
end-of-life care to more eligible patients with
life-limiting illnesses—regardless of their specific
disease. Newer treatments and technologies have
also pushed us to think critically and integrate
palliative care into hospice care and hospice
care into palliative care. Collaboration is now
the norm in most areas. However, it’s important
to remember that palliative care and hospice
care are not synonymous, but are both part of a
continuum of care—with palliative care oftentimes
leading to hospice care.
12
NewsLine
We have seen many times when palliative
interventions have been used in hospice and,
conversely, we have seen many hospice concepts
used in palliative care. A prime example of this
is in our work with HIV patients. Today, many
people with HIV are living much longer with new
targeted therapies, but at the same time, they
are living long enough to develop some of the
more chronic conditions like COPD, cardiac and
renal diseases, and even cancers. Establishment
of goals of care in such situations can only be
accomplished through conversations with skilled
clinicians who understand the concepts of both
hospice and palliative care. Because hospice has
been helping to ensure access since the early
days of the HIV epidemic, we are a respected
resource to help now. Hospice programs are
establishing relationships with cardiology, renal,
and pulmonary specialists to enhance access for
the many eligible patients who can benefit from it.
Now, more than ever, access is not just about
diseases. We, in hospice, are serving those at
end of life in whatever location they may be. We
have worked very diligently to be a presence in
long-term care environments, in assisted living
facilities, in hospitals, in homeless shelters—
and even under a bridge if need be. Programs
have continued to be creative in programming
in order to reach some of our most vulnerable
populations. Many prison programs are being
recognized as models for both volunteerism and
care. The Partnership Initiative of the Foundation
for Hospices in Sub-Saharan Africa continues to
grow in ways that enrich programs in Africa, but
also those here in the states which participate
(fhssa.org > Programs). There are other models
similar in Eastern Europe. Partnering for Children,
a collaborative effort between NHPCO, the
Children’s Hospice and Palliative Care Coalition,
and the National Hospice Foundation, is yet
another example of how we are increasing
awareness among underserved populations—in
this case, children with life-threatening conditions.
In the past, such documents as the AIDS
Resource Manual and Access to Hospice Care,
and Expanding Boundaries, Overcoming Barriers
were very helpful. Newer publications such as
the Inclusion and Access Toolbox (see page 49)
Because hospices
have been helping
to ensure access
since the early
days of the HIV
epidemic, we are a
respected resource
give programs the tools and resources necessary to create an inclusive
organization capable of meeting the needs of their own communities.
to help now.
Today, we are clearly—and fortunately—expanding to embrace a concept
of care that meets diverse end-of-life care needs. The language may
have changed, the resources may be greater, the populations may be
more diverse, but our vision is still the same: “A world where individuals
and families facing serious illness and grief will experience the best that
humankind can offer.”
It is unclear what the next 10 years will bring. There may be changes in
reimbursement, changes in the Medicare Hospice Benefit, and, possibly,
decreasing lengths of stay in hospice and increased access to palliative
care. Whatever may happen, hospice and palliative care is here to stay
as a recognized—and critical—component of the healthcare continuum.
We can be very proud of how far we have come and we can look forward
to continued service to those in need whomever they are and wherever
they call ‘home’.
Pat Gibbons is director of Beacon Place, the 14-bed hospice facility
operated by Hospice and Palliative Care of Greensboro in North
Carolina. She currently serves as NCHPP’s Nurse Section Leader.
NewsLine
13
ALS Patient Care
By Beth Whidden, ARNP, BSN, MS
A
myotrophic Lateral Sclerosis is a
progressive, incurable neurological disease
that affects the nerve cells responsible for
controlling voluntary muscles. The nerve cells
that become affected take away the muscles’
ability to function and, as a result, the muscles
gradually weaken, waste away, and twitch (i.e.,
“fasciculate”).
Although people diagnosed with ALS will eventually
not be able to move without assistance, they
will still be able to control their eye muscles and
rectal/urinary sphincters. An article in March 2006
also showed evidence that almost a third of the
people diagnosed with ALS may demonstrate some
cognitive impairment or dementia, even though the
disease does not usually affect a person’s thinking
or cognitive abilities.6
The Prognosis for ALS Patients
Individuals with ALS will experience progressive
weakness with moving, swallowing, speaking and
breathing. They will also experience the eventual
wasting away and paralysis of the muscles of the
limbs and trunk, and those that control speech,
swallowing and breathing.
As the disease advances, choking spells become
common when the
person attempts
to eat or drink,
due to jaw
weakness and
fatigue. These
episodes can be
very frightening
for the patient
and caregivers.
Nutritional
support
can be
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NewsLine
provided via a feeding tube and this can provide
another route for medication administration.
Recommendations for placement of a feeding
tube are made soon after the onset of dysphagia
(i.e., difficulty swallowing) and the decision about
whether or not to insert the feeding tube is based
on prolongation and quality of life.7
When muscles in the diaphragm and chest wall fail,
individuals lose the ability to breathe without the
support of mechanical ventilation. Even though a
respirator can ease problems with breathing and
prolong survival, it does not affect the progression of
the disease. Most people with ALS die of respiratory
failure or pneumonia, not the disease itself.8
Palliative Care Recommendations
Pharmacological and non-pharmacological
interventions should focus on symptomatic relief,
prevention of complications, maintenance of
maximum function and optimal quality of life.
Pharmacological treatment includes Riluzole
(Rilutek©), which is the only FDA-approved
medication for the treatment of ALS. Riluzole
may prolong the patient’s life by a few months by
slowing down the disease’s progression.8
Sialorrhea, an excessive secretion of saliva,
is a prominent symptom in people with ALS.
Pharmacological interventions include Robinul
(Glycopyrrolate), Cogentin, Scopolamine patch,
Atropine or Elavil (Amitriptyline).4
Pseudobulbular effect or “pathological laughing
or crying” may also be seen in up to 50 percent
of ALS patients. Pharmacological treatment for
this symptom includes Elavil (amitriptyline) or
Fluvoxamine (Luvox).4
Pain may be present from stiff joints,
muscle cramps, or a preexisting
condition. I recommend that
you refer to your pain
assessment, and
guidelines for pain
management and
bowel regimen
to determine
the appropriate
treatments.
Substantial physical caregiving is also required for the person diagnosed
with ALS. Common equipment needs may include an electronic
wheelchair, letter and picture board for communication, BiPap machine,
and feeding tube equipment.
The options for respiratory support should be discussed before the
development of respiratory muscle weakness. Involvement of respiratory
muscles and the risk of an upper respiratory infection can lead to sudden
decline and death. Signs and symptoms of respiratory muscle weakness
include shortness of breath (SOB) with exertion, dizziness, inability to lie
flat without SOB, anxiety, morning headaches, weight loss (which may be
due to decreased intake) and extreme fatigue.1
Discussions concerning the choice of mechanical ventilation should take
place between the patient, caregivers and healthcare professionals
before a crisis situation occurs.4 If the patient has completed an advance
directive, such information can also help guide healthcare providers and
caregivers regarding the patient’s wishes.
Aggressive psychological and spiritual support for patients and families is
also critical, especially since these patients often experience fear, anxiety
and depression. Support groups—including online chat groups—are an
excellent resource in particular. To assist patients and caregivers in
finding a support group, visit the Web sites of the Muscular Dystrophy
Association (als-mda.org) and the ALS Association (alsa.org). NHPCO’s
consumer engagement initiative, Caring Connections, also provides
general resources that may be helpful (caringinfo.org).
Hospice and the ALS Patient
ALS patients, like so many other patients at the end of life, can benefit
from the holistic care that hospice provides. For example, one study
reviewed the medical records of ALS patients and found that 94 percent
were “peaceful and settled” at the time of their death while in the care of
hospice.5
One study
reviewed the charts
of ALS patients
and found that
94 percent were
“peaceful and
settled” at the
time of death
while in the care
of hospice.5
According to the ALS Association, the majority of people diagnosed with
the disease die from respiratory failure, usually within three to five years
from the onset of symptoms. Approximately 20 percent will live five
years or more, up to 10 percent will survive more than 10 years, and five
percent will live 20 years from the time of diagnosis.8 Hospice care is an
important part of the care a person with ALS receives—but when is the
right time for hospice?
NHPCO collaborated with researchers at the University of Pennsylvania to
determine what clinical findings could serve as indicators as to when ALS
patients have six months or less to live and, therefore, could be referred
to hospice.3 The proposed eligibility criteria were released in 2006 in the
NHPCO disease-specific report, Expanding Access to Hospice Care for
People with ALS (see page 17). These criteria, along with documented
clinical judgment, can guide the hospice team to earlier and appropriate
hospice admissions of ALS patients.
NewsLine
15
Since ALS is a progressive and fatal disease,
hospice is uniquely qualified to handle the
increasingly intensive care the ALS patient
requires. As hospice treats the increased physical
needs, it is also well-versed in managing the
patient’s suffering as well as lending care and
support to caregivers and families. With a
compassionate partnership between the patient,
caregivers and clinicians, hospice can ensure the
most positive experience possible for ALS patients
at the end of life.
References:
Gilani A, Hinn A & Jacobson PL. Management of
respiratory failure in ALS. EPERC, 2004.
1
Expanding access to Hospice Care for People
with ALS. National Hospice and Palliative Care
Organization. 2006.
2
McClusky L, Houseman G, Medicare hospice
referral criteria for patients with Amyotrophic
Lateral Sclerosis: A need for improvement.
Journal of Palliative Medicine. 7(1):47-54, 2004.
3
The criteria review nutritional status and
respiratory function for a prognosis of limited
life expectancy. Nutritional status is defined if
dysphagia is present with a weight loss of five
percent of body weight with or without a feeding
in place.2
Critical impaired respiratory status can be
measured with a Forced Vital Capacity of less
than 40 percent, and two of the following signs
and symptoms: Dyspnea at rest; orthopnea; the
use of accessory muscles to breath; paradoxical
abdominal motion; respirations greater than 20;
reduced speech/volume; weak cough; symptoms
of sleep disorder breathing; and/or unexplained
headaches, confusion, anxiety or nausea. If the
patient cannot perform the Forced Vital Capacity
test, documentation should reflect that at least
three of the above-mentioned signs and symptoms
are present.2
Through the use of NHPCO’s proposed eligibility
requirements, clinicians can better determine the
right time for hospice. By choosing the proper time
to involve hospice, facilities and providers alike will
be better able to serve the needs of both early and
late stage ALS patients.
Miller RG et al. Practice Parameter: The care
of the patient with ALS (an evidence-based
review). American Academy of Neurology.
52:1311-1323, 1999.
4
O’Brien T, Kelly M, Sunders C. Motor neuron
disease: a hospice perspective. BMJ;
304:471–473,1992.
5
Rippon G et al. An observational study of
cognitive impairment in ALS. Archives of
Neurology; 63:345-352, 2006.
6
Slowie LA, Paige MS, Antel JP. Nutritional
considerations in the management of patients
with amyotrophic lateral sclerosis. J Am Diet
Assoc. Jul; 83(1):44-7, 1983.
7
What is ALS: The ALS Association (www.alsa.
org).
8
Muscular Dystrophy Association’s ALS Dvision
(www.als-mda.org).
9
Beth Whidden has been in the nursing profession for 17 years, and has practiced in the fields of
oncology, and hospice and palliative care. Since 1996, she has focused her work on education
and training and is currently a professional development coordinator for the Advancement of
Nursing at The Hospice of the Florida Suncoast in Clearwater, FL.
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NewsLine
Through the
use of NHPCO’s
proposed eligibility
requirements,
A Guide to ALS Prognostication
and Clinical Management
The NHPCO monograph, Expanding Access to Hospice
Care for People With ALS, was produced in 2006 to help
inform hospices and other health professionals about
advances in prognostication and clinical management of
the disease.
clinicians can better
determine the right
time for hospice.
The report provides prognostic criteria for ALS eligibility,
along with stories of hospices that have successfully met
the challenges of providing care to these patients through
collaborations with ALS groups and professionals in their
communities.
To order your copy, visit nhpco.org/marketplace (Item
821011; Member: $14.99). For more resources and helpful
links, visit nhpco.org/access > ALS.
NewsLine
17
Spiritual Care for
Nonverbal Patients
By Carlyle Coash, BCC
W
e often hear stories
of what we might
call a “good” death.
The dying person is able to
complete whatever business
he/she needed to finish.
Family and friends are able to
say their last goodbyes and
partake in those conversations
that are so sacred at the
end of life. There is even an
opportunity for the team to
be involved—offering their
skills and perspectives to
help bring comfort and solace
during this time of transition.
Yet, more and more we are
seeing a different kind of
patient within the realm of
end-of-life practice. These are
patients whose end-moments
are often held in silence. Who, due to their illness,
have retreated to a private world that seems
impenetrable.
Cases of debility unspecified, dementia and
Alzheimer’s are growing every day and, as our
population ages, one wonders just how prominent
these particular diagnoses will become. The
question that arises most directly, however, is
how do we remain present with someone who
gives back to us in a way that we might not be
accustomed to? Whose world is expressed through
symbols and metaphors, of stories from a time
long before we came to know them? Or who might
not speak at all, remaining quiet and withdrawn?
The feeling that “I am not really being of any
help” is something that I have struggled with,
and know many of my colleagues have as well. I
go and sit with patients, but I am unable to have
conversations with them. I try to ask questions—to
explore for meaning—and all I receive is silence.
I find it hard to connect and relate to what is
going on in their lives. At times, I might hear them
mumble something, but I can never discern the
meaning of those words. This can lead to a great
deal of frustration. There may even be times
in which the person is caught in a kind of loop,
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NewsLine
forever replaying and retelling
the same stories, experiencing
the same emotions. In these
moments it is easy to feel
helpless. It is easy to feel
as if our presence is making
little impact. We are creatures
of meaning, especially as
caregivers, and this apparent
non-connection can become
discouraging. It pulls counter
to our notions of why we have
come there in the first place.
I met with a gentleman,
named Peter, for about a year.
During that entire year, he
shared the same 45-minutes
of stories over and over again.
Even if I asked different
questions, Peter would always
return to those same stories. Since I saw him
every week, I began to wonder if I was being of
any use and, for a time, felt I had little purpose
there. Then he began to forget who I was
completely, and so each visit was a new beginning
for him. He expressed the same emotions and
tears, as if they were being offered for the first
time. There became a point when I simply had
to relax with him, to give up any purpose other
than to simply be with him. Around that time,
an interesting thing happened. He added to his
story. He shared parts of his childhood that he
had never mentioned before, parts that were
connected to some regrets associated with his
father. During the next two months, we had
several moments like this. They were always out
of the blue and often connected to something
he was trying to work through. I suddenly
would have the chance to ask a different set of
questions and unearth a part of him that had once
been buried. Some of this would then be added
to the story, but much of it would get lost again.
The challenge was to keep coming back without
expecting anything new, and just to remain there
with him regardless of his state of mind on that
day. Finally, he just stopped talking altogether
and would simply sleep during our visits.
Islands of Clarity
In 1990, the noted doctor and teacher, Edward Podvoll, proposed a unique
approach to supporting illness in his book Recovering Sanity. The basic
notion was to connect to the sanity of a patient, rather than the illness.
In this case, it meant creating an environment in which the patient
would be cared for by a team of people who would focus on supporting
the wholeness of the patient. In addition, the team would support each
other, so that the entire community was involved. By doing this, it was
not uncommon for there to be moments in which the people, despite
their cognitive issues, were able to experience what Podvoll termed
“islands of clarity” or a “coming to the senses” in which there manifests a
balance between mind and body. This occurred because the patients were
surrounded by people who were bearing witness to their wholeness, not
their limitations. They were able to discover healing and would often be
able to shift out of their states of confusion.
This notion of “islands of clarity” has always struck me as being an
essential element to what we do as caregivers. By being deeply grounded
and present with those we support, we allow them the chance to settle.
If our only outcome is to see the whole person, then we allow that person
the chance to shine through. Meaning-making takes on a whole new
purpose as well. It becomes a purpose based in stillness, without agenda
or disappointment that a meaningful connection has not been made. For
what is a meaningful connection? What do we need from our work as
caregivers to make it meaningful? Is a patient any less a person because
he/she cannot express or otherwise share with us some “meaningful”
experiences? Or is his/her confusion unsettling to us? Does it reflect our
own fears about facing such an illness—and state of mind?
The hardest part of my time with Peter was the realization that I could
be in the very same situation as he was at some point in my life. I not
only felt powerless in my conversations with him, but also felt that
powerlessness was a constant reminder of the fear I had for myself. I
feel that for us to be of service in a deeper way, it is important for us to
reflect on these kinds of situations and how they affect us. It is important
to be curious about why a certain patient or family member activates an
emotion within us, especially if it is a feeling of helplessness or unease.
What do we need
from our work as
caregivers to make
it meaningful?
Is a patient any
less a person
because he/she
cannot express or
otherwise share
with us some
“meaningful”
experiences?
We should also remember that our mere arrival at a patient’s door is an
important act in and of itself. An immediate and inherent connection is
made though our willingness to “be there.” This alone can help appease
our “need for more” and, at the same time, relieves the patient of a
tremendous burden. From there, anything is truly possible.
Carlyle Coash has been a hospice chaplain since 2000, in Boulder
Colorado and now California. He is board certified with the Association
of Professional Chaplains and currently serves as NCHPP’s Spiritual
Caregiving Section Leader.
NewsLine
19
Understanding the Mindset of
Dementia Patients
By Deborah A. Braun, CVA
F
or many volunteers, the opportunity to
visit with patients and families is the main
motivation behind their desire to give of their
time. We read frequently on their applications that
they want to “help people on their journey” or
“bring a little joy to someone” or “give the family
support.” But what happens when the patient
doesn’t respond to the visit and, most likely, never
will? Or the person is pleasant enough, but may
never remember the volunteer was there?
•Please don’t bring your purse, coat or anything
else that you are not willing to leave with me.
My reasoning and judgment are changing and
I think those items may be mine. I may also
think that when you prepare to leave that I
should be going with you and will become
upset and confused when you won’t take me
with you.
•During the visit, try not to ask me too many
questions. I may not be able to accurately
remember the answer and may become
About two years ago, we realized that there was
frustrated at realizing I should know the
an unusual turnover of volunteers in one particular
answer, but I don’t. It also may be
Extended Care Facility (ECF). We
that I know the answer, but you can’t
certainly allow our volunteers to change
Visit the Web
understand the words I’m using and
roles as they feel the need, but the
site of the
they confuse you—not me.
burn-out rate had gone from years to
Alzheimer’s
six months or less. After meeting with
• Always treat me as the adult that I
Association,
all the ECF volunteers, we realized that
am when choosing your words and tone
to learn about
the patients in this particular location
of voice. Please never argue with me if
had an additional diagnosis of dementia
programs
I think you are someone you are not.
and that the volunteers felt their visits
and services
Correcting me is rude and it makes me
were frustrating and meaningless.
available in your
think that you don’t know who you are.
Even though we were instructing them
It’s okay to be my sister or brother, or
area, including
in the basics of visiting with dementia
other familiar person on any given day.
educational
and Alzheimer’s patients, they felt they
workshops:
• Do have conversations with me,
were sometimes making the patients
even if I don’t talk, because I may
feel unsettled by their presence.
alz.org >
recognize your voice from previous
In Your
Lessons from Aunt Lynn
visits. Tell me your name again, tell me
Community.
you are glad to be with me, tell me the
We recognized an excellent educational
weather, and tell me about the seasons
opportunity in this situation—and called
as
they
change. Talk to me about my family,
in an expert to assist us. Over the course of five
bring
me
examples of my hobbies, show me
months, we offered eight in-service sessions with
the
photo
album again, and play my favorite
Lynn Ritter, PhD., the education coordinator for
music
for
me.
You may have done these things
the Northwest Ohio Chapter of the Alzheimer’s
dozens
of
times
before, but to me it’s familiar
Association.
and comforting, whether I can express that to
Dr. Ritter, who is a dynamo of a presenter,
you or not.
explained all of the medical aspects of the
•If I become unsettled while you are with me, it
disease—but then assumed the persona of “Aunt
may be that I need to use the rest room, may
Lynn,” an 86-year-old with dementia, to help us
be having pain, may be hungry, may be feeling
understand what it’s truly like to have the disease
too hot or too cold, or experiencing something
and how we could make a difference. Here are
only known to me. There is usually a reason for
some of the things “Aunt Lynn” shared with us:
my expression of emotion.
•In the early stages of the illness, I know there
•If I should fall asleep, sit quietly and do not be
is something wrong, but I am unable to identify
offended; the gift of sleep is a sign that I am
the cause and feel helpless to fix it. As a result,
relaxed in your company.
I can become frustrated, angry and confused.
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NewsLine
•When it’s time to leave me, please go quickly and without much ado.
Say ‘please excuse me’ or ‘I’ve enjoyed our time today’ and then make
your way to the door quietly. Trying to explain to me that you will
be back again in two days or next Thursday only makes me anxious
about when that is and what will happen to me in the meantime. If you
put on your coat, go for the keys, and say a hearty “goodbye,” I will
definitely and naturally want to go with you! Then, your departure will
cause me much unhappiness, confusion and distress.
Aunt Lynn also reassured volunteers that they do make a positive
difference with each visit by simply offering acceptance to patients,
just as they are. She says what they are thinking, but perhaps not
communicating, is “Thank you for coming, thank you for caring, and
please come back.”
Stimulating Positive Responses in Patients
Finding out as much as you can about the life story of the patient from
the staff and family will help you direct topics of interest and familiarity.
Likes and dislikes, hobbies, work experiences, music preferences, and
family history are very important to “framing” a quality visit. Likewise,
creating a “goodie bag” with inexpensive items to help stimulate
memories, feelings and comfort can help you connect with patients.
For example, volunteer Tim Galvin was assigned to a gentleman in
an inner city ECF who was uncommunicative and angry. Tim did his
homework and found out that at one time, years before, the patient
liked to play cards. Tim had a deck of cards in his goodie bag, but the
patient did not seem interested. On his next visit, Tim brought an UNO
deck which sparked the patient’s interest. They ended up playing cards
for hours. Afterwards, the ECF staff remarked on how the patient’s
anger seemed to diminish, he cooperated more easily, and his appetite
improved.
As another example, volunteer Fred Dannhauser and his therapy dog,
Tango, were visiting with a hospice patient at a local ECF. While Tango
was, of course, the center of attention during the visits, Fred played a big
part in involving the other seven patients in on the fun. After the hospice
patient died, the ECF staff asked Fred and Tango to continue their visits
because the residents were always more calm afterwards and slept much
better.
Dr. Ritter…
assumed
the persona of
“Aunt Lynn,” an
86-year-old with
dementia, to help
us understand
what it’s truly
like to have the
disease.
Positive Effects on Volunteer Turnover
Our volunteer turnover in ECFs has improved since we conducted the
training with Dr. Ritter. The ECF staffs welcome the volunteer visits and
team leader, Cathy Richards, RN, CHPCN, tells us that patients’ families
are comforted in knowing that, with additional visits from volunteers,
their loved ones not only benefit from companionship, but also in having
another advocate for excellent care.
Deborah Braun has 15 years of volunteer administration experience and
is certified with the Council for Certification in Volunteer Administration.
She has served as director of volunteer services for Hospice of Northwest
Ohio (Perrysburg, Ohio) since 2001, where she oversees the work of 425
volunteers.
NewsLine
21
Treating Pain in
Nonverbal Patients
By Ronalda Dick, RN, MSN
NHPCO’s Quality Improvement Collaboratives were launched in September 2006 as part
of the Quality Partners program. They are a series of six-to-nine month programs (or
“waves”) which offer participating hospice teams the training, resources, and support
to make improvements within their organizations.
Each team identifies: (1) precisely what they want to improve, (2) by how much, (3)
the changes they will make to realize their goal, and (4) how they plan to measure and/
or determine if the change resulted in an improvement. Then, over the course of nine
months, they work together to make measurable improvements toward their goal—with
guidance from interdisciplinary team members who serve as coaches.
In this article, Ronalda Dick, director of quality and clinical information at Hospice of
Central Iowa, shares with us her team’s work on one of NHPCO’s collaboratives.
O
ur journey toward improving the
management of pain in nonverbal patients
started with the uncomfortable realization
that we were not always performing at the level
we wanted to as a quality hospice organization.
Overall, we felt like our patients were wellmanaged and cared for. But, like so many other
organizations getting ready for the new Conditions
of Participation—particularly the QAPI (Quality
Assessment Performance Improvement) CoP—
we needed to take a hard look at “how we were
planning to measure and demonstrate successful
pain management in nonverbal patients.”
Discovering even an occasional clinical record
without a measurement of pain severity upon
initial assessment or subsequent reassessments
was unacceptable to us. When several chart audits
revealed “no complaints of pain” documented in
patients who were non verbal, we identified a very
real opportunity for improvement.
We felt our clinicians understood the nonverbal
behaviors indicative of pain in older persons
(American Geriatrics Society, 2002), but how could
we be certain? Also, dismissing pain behaviors as
“just part of dementia” is an ever-present risk,
especially among nurses new to hospice care.
So, our goal was to ensure that we were indeed
addressing the pain levels of those patients most
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NewsLine
vulnerable to unrecognized pain: Those who were
cognitively impaired or otherwise unable to reliably
respond to questions about their pain.
As part of a renewed organizational emphasis on
improved performance and clinical documentation,
we joined “Wave 3” of NHPCO’s Quality Improvement
Collaboratives.
These collaboratives use the “Model for
Improvement” developed by the Institute for
Health Care Improvement (aka “IHI Model”) to help
teams accomplish their goals. Following a process
of “plan, do, study, act,” the model lets you plan
small changes, test the changes, evaluate the
effects, and then act on the results. This approach
is effective because it does not overwhelm an
organization, and can result in achievable goals
within a short time that can then be expanded
within the organization in a planned and organized
fashion.
We specifically set out to involve staff members
from all parts of our organization in this project—
not just clinicians—because we wanted all staff to
learn the IHI model. Through direct involvement,
they would be better able to integrate it into our
new QAPI program description. Here is a step-bystep description of the process we followed during
the nine-month collaborative.
Step 1:
Our first step was to identify what changes we should make that would
likely result in improvement.
In researching the literature on pain assessment, it became clear that few
tools have been thoroughly evaluated with respect to validity, reliability
or usefulness. Much study is still needed to determine which pain
assessment tools work best for different hospice patient populations.
We found that other hospice agencies and some of our long-term care
facility partners had begun using the Pain Assessment in Advanced
Dementia (PAINAD) scale (Warden, Hurley & Volicer, 2003). Their use
of the scale and its endorsement by the American Medical Directors
Association led us to consider it for our project.
We soon realized that compared to other available tools, the brevity of
the PAINAD scale and our clinicians’ familiarity with its concepts (i.e.,
watching for the five components of facial expression, body language,
breathing, negative vocalization and consolability) made it particularly
feasible for our project. Each item is scored on a three-point scale (0-2)
for severity. The total score can range from 0-10, mirroring the commonly
used numerical rating scale familiar to clinicians, with higher scores
indicating more severe pain.
Hospice of Central
Iowa Collaborative
Team Members:
Linda Clauson
Ronalda Dick
Christine Doubleday
Cindy Fenoglio
Mary Hall
Rosy Harrington
Liz Mayer
Amy Mobley
Kelly Stackhouse
During our first learning session in the collaborative, held in April 2007,
we completed our Aim Statement: “By November 2007, 90 percent of
nonverbal cognitively impaired patients
assessed as having moderate to severe
pain upon admission will demonstrate an
improvement (a decrease) of at least one
level in pain severity within 48 hours.”
The beauty of the IHI model is that
we were quickly able to make
changes as needed based on our
observations. For example, by the
beginning of our second learning
session, we realized that our
sample population, as noted in
our Aim Statement, should
be more broadly defined as
“older nonverbal adults.”
Ultimately, we determined
that “older patients unable
to reliably self-report pain”
more accurately defined
our target population.
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Step 2:
the availability of different
pain assessment tools
for use under different
patient circumstances was
not as widespread as we
had hoped. To increase
their knowledge, we
presented an educational
session as a part of our
organizational training
that August (five months
into the collaborative
project) which increased
their knowledge of selfreported and behavioral/
observational pain
assessment tools.
Our next step was to
carry out our plan—on a
small scale first to make
sure it worked.
For this initial cycle of
change, we selected one
of our 10 home-based
teams. As the IHI model
suggests, we purposefully
selected a small sample
size and a team that we
felt could embrace the
change project. However,
we also reviewed the
records of all admissions
for that team to ensure
that the patients we targeted for our project
(i.e., those who were cognitively impaired or
otherwise unable to reliably respond to questions
about their pain) were represented. This proved
to be the tipping point which truly focused our
clinicians’ attention on those patients for whom
the planned change was intended.
Step 3:
In this step, we summarized what we learned
over the course of this nine-month project
through collection and analysis of the data. In
essence, we asked ourselves “What obstacles
and successes did we encounter?”
First, adding “another piece of paper” to the
chart was simply not going to work. Initially,
we had provided the PAINAD scale within a new
form that required staff to document their visits,
interventions, etc. But staff saw this new form as
burdensome, and we quickly realized we needed
to integrate the PAINAD scale into our existing
documentation.
Thus, we provided clinicians with a hole-punched,
laminated 4x6 card with the PAINAD tool and
scoring guide which they could attach to other
quick reference cards, making the tool and
scoring guide portable and easily accessible.
Staff then started documenting the PAINAD
scores in the locations typically reserved for the
verbal Numerical Rating Scale (NRS) scores.
Secondly, we realized that staff’s knowledge of
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One of our successes from
work on this project was that documentation of
pain assessments no longer included the phrase
“no complaints of pain” in the narratives of the
older nonverbal patients in our study group. By the
end of our project, more than 90 percent of our
nonverbal patients who were experiencing pain at
the time of admission, had their pain minimized by
at least one severity level within 48 hours.
Step 4:
Our next task as part of this collaborative project
is to act on what we’ve learned—that is, accept,
reject or refine our changes.
To further address and decrease doubt among
clinicians about when it is most appropriate to use
the PAINAD scale, we plan to develop a simple
flowchart/algorithm to depict under which particular
patient circumstances the behavioral/observational
pain assessment tool would be preferable to selfreporting tools such as the Numerical Rating Scale
and Verbal Descriptor Scale.
Step 5:
Looking ahead, our specific plans for sustaining
and more broadly implementing these
improvements include:
•Adding a component to chart audits which
reviews for use of the PAINAD tool in
appropriate patients;
•Including education on correct use of the
PAINAD tool in our general didactic orientation
for new clinicians and in our skills labs for new and existing nursing
staff; and
•Conducting the project in the remainder of our home-based and
inpatient facility teams.
In Summary:
Overall, our team concurred that our work in this Quality Partners
Improvement Collaborative definitely moved us toward our project goal
and has stimulated an organization-wide re-evaluation of how we will
approach all of our future quality initiatives. We believe the project
has improved—and will continue to improve—the way clinicians think
about pain assessment and management in one of our most vulnerable
populations: those who cannot speak for themselves.
Ronalda Dick is director of quality and clinical information at Hospice
of Central Iowa, based in West Des Moines. She has 30 years of
experience as a registered nurse, including 10 years in hospice care
at both free-standing and hospital-based systems.
References:
American Geriatrics Society Panel on Persistent Pain in Older Persons.
(2002) Clinical Practice Guideline: The management of persistent pain in
older persons; retrieved 12/12/07; www.americangeriatrics.org/products/
positionpapers/JGS5071.pdf.
Feldt K. (2007) Pain measurement: Present concerns and future
directions. Pain Medicine, 8(7), 541-543.
To learn more
about NHPCO’s
collaboratives and
how your
program can
participate, visit
nhpco.org/quality
> Discover the
Collaboratives.
Herr K, Bjoro K, & Decker S. (2006) Tools for the assessment of pain
in non verbal older adults with dementia: A state of the science review.
Journal of Pain and Symptom Management, 31(2), 170-192.
Langley GL, Nolan K, Nolan TW, Norman C, Provost LP. (1996) The
Improvement Guide: A Practical Approach to Enhancing Organizational
Performance. San Francisco: Jossey-Bass Publishing.
Warden V, Hurley A, & Volicer L. (2003) Development
and psychometric evaluation of the pain assessment
in advanced dementia (PAINAD) scale. Journal of the
American Medical Directors Association, 4(1), 9-15.
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25
Grief
and the
Older Adult
By Diane Snyder Cowan, MA, MT-BC
26
NewsLine
A
study in the journal, Brain, Behavior and Immunity (2006),
shows that stress caused by the death of a spouse or close friend
can have a negative effect on the immune system of older adults.
In fact, researchers found that flu shots were not as effective in building
immunity against influenza in older adults who recently experienced the
death of a loved one.
Older adults experience grief in much the same way as younger and
middle-aged adults; however, their age, life experiences, and oftentimes
physical and mental illnesses, can impact their grief reaction. In
addition, many older adult patients in hospice care have non-cancer
diagnoses such as heart failure, dementia, ALS or renal disease, and the
losses that accompany these diseases can affect their hospice stay as
well as their loved ones’ bereavement period.
Older adults often experience several losses within a short period of
time. They may have a dwindling roster of family and friends and they
may be grieving any number of losses simultaneously. These multiple
losses can result in feeling overwhelmed or numb. In addition, older
adults who lose their spouses may also feel they’ve lost their financial
security, their best friend, and other social contacts and supports.
The natural process of aging involves many losses. These include,
but are not limited to, loss of physical strength and endurance,
independence, mobility, youth and beauty, the home, and purpose. If the
older adult has a debilitating disease, there are also losses associated
with the disease progression. Older adults may have to give up their role
in the family which can cause a change in the family dynamics. Older
adults may feel sad, but not identify this feeling as grief. Often, they are
reluctant to share these feelings with others. Many do not want to be a
burden to their family. Some fear if they share their sadness and grief,
they may be perceived as unable to take care of themselves and will
need to be “put somewhere.”
Some fear if they
share their sadness
and grief, they
may be perceived
as unable to take
care of themselves
and will need to be
“put somewhere.”
Older adults are more likely to become physically ill after a loved one
dies. If they already have a chronic illness, it may progress more quickly
while they are grieving. The practical issues surrounding one’s own
health can also interfere with a person’s ability to grieve or complicate
their grief reactions. Some older adults actually develop symptoms
experienced by the deceased, such as cardiovascular or gastrointestinal
problems. It is important that bereaved older adults maintain contact
with their healthcare providers.
Older adults often lack the support systems they had in their younger
years. After the funeral, family members return to their own lives,
leaving the bereaved older adult feeling very alone. If the person had
depended on his/her spouse to create social contacts, the person may,
literally, have no one to talk to.
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27
The elderly may also find themselves struggling
with their own mortality. Many older adults begin
their day by reading the obituaries. They may
experience more anticipatory grief than younger
adults—anticipating another loved one’s death
or thinking about how they will cope if they lose
something special to them such as their family
home. Some people think older adults overreact
to losses when, in reality, any loss—big or small—
may trigger a grief reaction. It is common to hear
older people say, “all my friends have died” or
“I’ve been to 12 funerals in the past year.” Each of
these deaths has a different level of significance
to the person experiencing the loss.
Complicated Grief
Some older adults develop complicated grief. The
experience of multiple death losses, combined
with the losses that occur naturally as part of
aging and the anticipation of more death, can
become overpowering. Some older adults need
more time than others to adjust to change—and
too much change can be overwhelming.
Many older adults suffer from untreated
depression. While depression can occur with
other medical illnesses such as cardiovascular
disease, stroke, diabetes or cancer, healthcare
professionals often mistakenly conclude that
depression is a normal result of these illnesses;
the elderly often assume this as well. What’s
more, some people believe that depression
is a normal part of growing older and, as a
result, depression is often underdiagnosed and
undertreated. In fact, there exists a marked
increase in depression and suicide in the
elderly. According to Caruso (2006), older adults
comprise only 13 percent of the population, yet
individuals ages 65 and older account for 18
percent of all suicides.
Recognizing the Difference Between
Grief and Depression
It is important to note that while depression can
include grief, grief can also mimic depression.
Recognizing differences and similarities between
the two is critical.
Grief encompasses a broad spectrum of
behaviors and feelings that are common after
loss. Many normal grief reactions may seem
like characteristics of depression, but in reality,
grief and depression are very different. Clinical
depression can include suicidal ideation, plans,
or attempts. It is important to be aware of these
differences and to acknowledge that complicated
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NewsLine
grief can progress to clinical depression if not
addressed. A comprehensive clinical assessment
can aid in determining if the older adult is
becoming depressed and can guide the clinician
in recommending additional treatment as
necessary.
How can you support an older adult who is
grieving?
•Older adults may need more time to become
aware of and express their feelings. Giving
them extra time shows empathy, compassion
and respect.
•You may need to point out signs of changes
in behavior and sadness. This will help older
adults become more aware of their feelings
and help them more readily talk about them.
•Older adults who are isolated can benefit
from the company of others. Spend time with
them. Give them the gift of presence.
•Talk about the deceased. Encourage the older
adult to share memories. Recalling memories
and telling stories are part of the healing
process.
•Since many older adults have experienced
multiple losses, encourage them to talk about
each loss separately. This will help them feel
less overwhelmed and better able to cope with
their grief.
•Be aware of the signs of complicated grief and
depression. If you have concerns, encourage
the older adult to consult a healthcare
provider.
Diane Snyder Cowan is the director of The
Elisabeth Severance Prentiss Bereavement
Center, a program of Hospice of the Western
Reserve in Cleveland, Ohio. This is her first
term as an NCHPP Bereavement Professional
steering committee member.
References:
Bereavement and marriage are associated with
antibody response to influenza vaccination in the
elderly. Brain, Behavior and Immunity, 20 (3):
279-289, 2006.
Caruso, K. Elderly Suicide, 2006. Retrieved
November 15, 2006 from www.suicide.org.
Some people
believe that
depression is a
normal part of
growing older
and, as a result,
depression is often
underdiagnosed
and undertreated.
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29
Not Just for Cancer Anymore
Diversifying Your Patient Mix Through Proactive Marketing
By Mike Fleming
H
ospice continues to be plagued by many
myths and misperceptions—perhaps none
more detrimental than the idea that hospice
is a benefit exclusively for cancer patients.
We all recognize that, in most of our communities,
today’s hospice population does not accurately
represent the ways in which people die. It’s
important that we all recognize the opportunity
and mission-driven obligation we have to find new
ways of connecting to all terminally ill patients
and their families.
Rather than seeing diversification as an
insurmountable obstacle to growth, some hospices
are successfully turning it into an opportunity to
engage in meaningful dialogue. It’s a chance to
shift to a more inclusive discussion of the hospice
benefit, and it can help you balance your lengthof-stay, the acuity of your patient mix, and the
locations in which you’re providing care.
The key to success comes in both the planning
and the execution, and it requires a hard, honest
look at your organization’s needs, your referral
community’s capacity for change, and your
willingness to invest the time in building and
executing a proactive marketing strategy.
Step 1: Assess Your Situation
This requires a willingness to look honestly and
objectively at your current business and at trends
that may have emerged over the past 12 to 18
months.
•How’s your length-of-stay? Is your average
length of stay being bolstered by a few
extremely long-term patients while your
median length of stay hovers well below the
national average?
•Are you facing any Medicare Cap issues? As
you explore ways to diversify your patients,
you’ll want to stay mindful of any potential for
Cap deficits.
•How penetrated is your market? If 90 percent
of eligible patients are already under the care
of hospice, your plan will look very different
than if your community’s utilization of hospice
is very low.
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•How do your numbers stack up against the
national averages? Recognize that there can
be significant differences based on geography
and demographics (e.g. a rural community
with fewer oncologists and hospitals might
expect to have a lower percentage of cancer
patients than a major metropolitan area). You
also will want to look at the overall causes
of death (available at cdc.gov) and see how
close your patient mix matches these numbers
(removing such non-eligible categories as
homicide).
Your goal in this process is to make sure you know
where you stand today—and to identify your most
significant areas of opportunity. This will also help
you identify your core objectives and how you’ll
measure the success of your efforts. Make sure
your leadership team is in agreement on these
objectives, and gain consensus. A successful
strategy will require across-the-board support.
Step 2: Analyze Your Business
Now that you have a sense for some
key metrics and have identified your
objectives, take a step back and ask
yourself these questions:
•Where are your referrals coming
from (i.e., what are your key
accounts)? Are you extremely
dependent on a certain cancer
center, nursing home, or hospital?
Look for diversification and depth.
Rather than seeing
diversification as
•Do these areas of referral emphasis
(e.g. physicians, hospitals, nursing
homes) match your objectives in
terms of a referral mix?
an insurmountable
•Who are your prospects (i.e., referral
sources you are approaching, but
ones which have not yet begun
sending referrals)? Are these prospects likely to help you diversify
your mix?
•Consider your competition and where their business comes from.
Are they doing a better job of balancing their patient mix or are they
competing with you for the very same accounts?
If you haven’t yet developed a database of your current referral sources
and prospects, use this as an opportunity to do so. And whether it’s a
giant Excel spreadsheet or a more robust CRM system, be sure to keep
track of both the number of referrals and patient mix (by diagnosis) you
expect from each referral source.
obstacle to growth,
some hospices
are…turning it into
an opportunity
for meaningful
dialogue.
Step 3: Research Your Heart Out
Now that you know your situation, your objectives, and your target
audiences, you need to assess your effectiveness in reaching these folks
with a message that will move them to action. In other words, what can
you say that will lead them to add to your mix of non-cancer patients?
•Assess the knowledge gaps within your targets. Are they not aware
that hospice is available to non-cancer patients? Or is it that they
don’t believe hospice is helpful to the non-cancer population? Or
maybe it’s that they tend to make all hospice referrals in the last
week or two? This assessment will tell you a lot about what it will
take to spark action.
•Look at results of your family satisfaction surveys—especially
questions that prompt comments about the timeliness of hospice
referrals. Search for gems that might open doors to future
conversations with your referral sources.
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•Consider holding focus groups with referral
sources, bereaved families, and/or community
leaders. Use this as an opportunity to assess
knowledge gaps and key issues. You can also
use this time to begin the education process.
By taking the time to tell them that their
opinions matter, you’ll be taking a huge step
toward building life-long ambassadors and
advocates for hospice care.
•Use this research to identify your core
messages, and align these messages with your
key audiences. This will give you the ability to
target your audiences with the most impactful
(and motivating) stories possible.
of death from the research you’ve already
done. For example, imagine the power of telling
a cardiologist what a small fraction of heart
disease-related deaths are under the care
of hospice? This can be a real conversation
starter because it makes the discussion bigger
than just your hospice or any one individual
physician or patient.
•Debunk myths by providing targeted
education—and use evidence-based research
whenever you can. Consider the use of talking
points from research articles like the one in
the Journal of Pain & Symptom Management
(March 2007) that proved how some hospice
patients actually live longer than their nonhospice cohorts (on average, 29 days longer).
For any referral source hesitant to refer
because of the fear that hospice equates to
“a death sentence” or “giving up hope,” this
research can be a real eye-opener.
•Develop a few specific, targeted sales calls
that you can make with your key audiences.
Maybe you have decided that cardiologists and
pulmonologists are your primary targets. Think
about how to get time with them (maybe an
introduction through direct mail followed by a
phone call or personal visit) and what you’ll say
when you get the chance to speak with them.
(Again, case studies and statistics can be huge
credibility builders!)
Step 4: Tell Your Story
Consider all the creative ways to reach your
identified target audiences with the right
messages. Here are some ideas:
•Educate referral sources on individual hospice
diagnoses that might be prevalent among their
patient population. Use case studies (preferably
of actual patients you have cared for) to make
it real for them, and connect these studies to
eligibility criteria to illustrate how to identify
when a patient should be referred.
•Take the time to educate on the leading causes
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•Consider how your medical director can help.
Sure, CMEs are great and valuable—but think
about the little things, too. Does your medical
director do physician-to-physician consults?
How connected is she within the healthcare
community? Does she attend meetings at
the local hospital? Maybe he’s a member of
the state medical society? These are built-in
opportunities for someone with great clinical
credibility to communicate your key messages.
You just need to help them feel comfortable
telling the story.
Think about how you use your Web site—and if you
don’t yet have a web presence, now’s the time to
get started. Use your web presence to educate and
inform, and make sure that your print collateral,
advertisements, and other materials tell the same
story. By showcasing all the many types of patients
(and their diagnoses) that you serve, you begin
broadening the minds of all who come to you for
information and education.
Step 5: Measure Your Success
You’ll want to keep track of your progress since you will be learning so
much along the way. Pull out your original objectives, and keep a progress
report to see how you’re doing. Some possible measures could be:
•Overall diagnosis mix (maybe comparing your mix to leading causes of
death and/or to national hospice averages);
•Average and/or median length of stay;
•Number of new non-cancer referral sources developed and the volume
of referrals/admissions.
How often should you track your progress? The ideal answer is daily—
because you should be able to keep your finger on the pulse of whether
your efforts are moving the needle. However, a more realistic goal is to
formally track these metrics at least quarterly, if not monthly. After all,
if the outcomes aren’t following your investments, then it’s time to reset
your goals.
Final Thoughts
Diversifying your patient mix is really very much like any other marketing
initiative. Good upfront planning and research will go a long way, and you
always need to keep track of your progress. However, if you find yourself
getting overwhelmed as you work through this process, return to these
four questions to get back on track:
1.What do you want to accomplish (measurable objectives)?
2.Who can help you accomplish these objectives (target audiences)?
3.What do they need to hear in order to be moved to action (key
messages)?
4.How will you reach them with these messages (marketing tools and
tactics)?
Diversifying
your patient mix
is really very
much like any
other marketing
initiatives. Good
upfront planning
and research will
go a long way.
Also, make sure that you don’t lose sight of your cancer referral sources.
The goal is a diversified and balanced mix—and that mix needs to include
cancer patients too.
Finally, always take time to celebrate your successes along the way and to
celebrate the work that you and your colleagues do each day. Hospice is
indeed special work, and our overarching goal should always be to bring
this amazing benefit to as many eligible patients as possible—regardless
of their diagnoses.
Mike Fleming is vice president of marketing and communications for
VistaCare, a national hospice provider headquartered in Scottsdale,
Arziona. Prior to joining VistaCare in 2003, Mike spent more than 10
years in hospital marketing and public relations with health systems
in California and Kentucky. He has been a member of NCHPP’s
Development/Marketing/PR Steering Committee since 2006.
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33
Rehabilitation Tools
to Promote Access
By Richard Briggs MA, PT
R
ecently, I had a conversation with a
hospice medical director about changes in
her practice. She mentioned that in the last
week, six patients had asked her about having
physical therapy during their hospice care. “How
can we meet their needs and desires, and still do
hospice care?” she had asked.
Better informed and more vocal consumers
are now expecting a broader range of care
than hospices have traditionally offered. At the
same time, access to hospice care continues to
improve, as evidenced by today’s average lengths
of stay (59 days, per NHPCO’s 2006 findings),
and the growing number of patients now living
with non-cancer diagnoses (55.9 percent, per
NHPCO’s 2006 findings). While these are both
positive indications of our professional success,
these changes also require that we become more
flexible in changing the mix of care we provide—
through foresight and planning.
Care Needs of the Non-Cancer Patient
Neurological conditions such as ALS, Parkinson’s
Disease, and recurrent cerebrovascular
accidents (i.e., strokes) bring with them often
complex arrays of muscular strength/weakness,
muscle tone abnormalities (spasticity, flaccidity,
rigidity), and sensory changes. These physical
manifestations may be present in lower or upper
extremities, or the oral and bulbar structures,
and can best be evaluated by the team’s physical,
occupational, or speech therapists, who routinely
address such conditions and the functional
impairments that result. Being limited in mobility,
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self-care, and/or communication and eating
dramatically affects quality of life. Specialized
equipment, adaptive devices, and communication
aids may be needed or already in place. Different
techniques can be used to facilitate movement,
normalize muscle tone, and educate the family
caregivers about the evolution of the disease
process and ways to effectively provide care. The
care plan and interventions that result will assure
that optimal mobility, comfort, and safety will be
achieved.
Similarly, end-stage cardiac and pulmonary
conditions bring their own sets of physical
limitations. Due to often extreme limitations of
cardiac output, with ejection fractions of less than
20 percent and diminished oxygen saturation,
energy conservation measures are extremely
important to allow functional mobility without
causing undue cardio-pulmonary stress and the
resultant symptoms of anxiety. The physical
therapist can adjust walking devices to lower
heights, allowing for improved efficiency and
decreased exertion. A gentle exercise program
can improve peripheral muscular performance.
And, monitored ambulation with breathing control
exercises can educate patients about their limits
and ways to work within a relative comfort zone
to decrease anxiety and the need for medications
with activity. Using occupational therapy,
patients and families can learn the easiest way to
successfully accomplish activities of daily living
which, in turn, can promote improved dignity and
quality of life.
These cases also bring a much more complex
psychosocial dynamic, as these diseases are not so easily recognized
by those living with them as “terminal conditions.” It is likely that such
patients have received the benefits of intermittent rehabilitation therapy
in their struggle to continue living at the highest functional level. A
hospice-appropriate therapy program, on the other hand, would also
include instruction and caregiver support which would help promote a
sense of wellness and easier acceptance of the transition to end-of-life
care.
Hospice Models for Rehabilitation Therapies
The models for rehabilitation therapies in hospice differ significantly
from those in traditional rehabilitation programs. Acute care, outpatient,
and rehabilitation settings—with a high intensity of therapy services—all
demand that significant and timely progress be documented to assure
reimbursement from the payment source. People receiving therapy
under a hospice benefit, however, are likely to make gains in a much
more gradual way, if able, and over time transition to a state of declining
function. This trajectory of activity, along with a different reimbursement
system, necessitates a much lower visit frequency (i.e. weekly or
biweekly), with the emphasis on family instruction and home programs,
and ongoing re-assessment and intervention by the therapist when
needed. Palliative care models of “light rehabilitation,” “rehabilitation in
reverse,” and “case management” work well in the hospice spectrum of
end-of-life care.
Earlier referrals will bring us patients who are not as far along in their
end-of-life care journey. What would hospice care look like if the average
length of stay was 90, or even 120 days? We do the ‘dying’ part well, but
sometimes struggle with the ‘living’ if it takes us from an accustomed
pattern or practice. As the frequency of longer stays becomes more
common, our familiarity and comfort with a different and evolving focus
will become more the norm.
What would
hospice care look
like if the average
length of stay
was 90 days?
We do the ‘dying’
part well, but
sometimes struggle
with the ‘living’ if
it takes us from an
accustomed pattern
or practice.
The utilization of therapies for our changing patient demographic
necessitates close interaction and communication among members of
the interdisciplinary team. For example, social work and nursing must
recognize the short-term therapeutic goals of the patient who desires to
continue his/her struggle to live, and may not yet even partially accept
the hospice goal of acknowledging death. At the same time, the different
perspective of therapy early on in care can create confusion between the
patient, family, and the hospice team, if members of the interdisciplinary
team are not aligned and in concurrence. As we know, this is work in
progress, and part of our eventual objective over the course of care. It
is also an exceptional challenge for the team to accept and to execute
together, requiring much self-knowledge, sensitivity to the patient and
family, and communication amongst themselves.
The therapist, who is well-integrated into the hospice team and adept at
negotiating the transitions of a patient’s functional decline and changing
status, can be an extremely valuable team member in facilitating the
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35
Richard Briggs has 20 years of experience as
a physical therapist with Enloe Homecare and
Hospice in Chico, California. He is the immediate
past-chair of NCHPP’s Allied Therapist Section
and continues to serve as a member of the
section’s steering committee. In addition to his
work with NCHPP, Rich writes, lectures, and
consults with agencies to integrate physical
therapy into hospice care through his practice,
Hospice Physical Therapy Associates.
References:
Complementary Therapies in End-of-Life Care.
National Hospice and Palliative Care Association,
2001, Chapter 6, 7, 8, for Occupational, Physical,
and Speech Therapy.
Pizzi MA, Briggs R., Occupational and Physical
Therapy in Hospice: The Facilitation of Meaning,
Quality of Life, and Well-being. Topics in Geriatric
Rehabilitation. 2004; 20 (2): 120-130.
Briggs R. Models For Physical Therapy Practice
in Palliative Medicine. American Physical Therapy
Association, Home Health Section Quarterly 1999;
34(4): 6-7.
Resources:
focus of care toward understanding the inevitable
outcome by patient and family. Support is provided
in recognition of the patient’s significant efforts,
the lack of control over improvement, stabilization,
or decline of the body, and the ultimate wholeness
of a person despite these changes. Initially seen as
a beacon of hope, the therapist becomes a catalyst
for change. If an activity is not possible with
therapy intervention and support, it is recognized
as unrealistic, and more easily accepted by all.
Challenges abound in the ever-changing
environment of end-of-life care. We must continue
to recognize the opportunities we have to expand
our outreach in support of those living in the
final phases of their lives. Using appropriate
rehabilitation therapy services can be of great
benefit to hospice care for the earlier admissions
and non-cancer patients we serve.
36
NewsLine
Hospice and Palliative Care Special Interest Group
for Physical Therapists (oncologypt.org/sigs/
hospice.cfm).
American Occupational Therapy Association (aota.
org).
American Speech Language and Hearing
Association (asha.org).
Improving Access
for Patients With
Pulmonary Fibrosis
By Sue Montgomery, RN, BSN, CHPN
S
even years ago, my dad died of pulmonary fibrosis. His name
was Jim, and he and my mom were married for 53 years. He had
been a conductor on the railroad for 36 years, riding at the tail
end of freight trains as the conductor in the caboose, inhaling brake dust
laced with asbestos. He also spent time as a tire-shop worker and a fuel
truck driver. We lived in a steel town and he spent his working life around
polluted air. For many of those years, the aroma of Borkam Riff pipe
tobacco also meandered through our house.
Any, all, or none of these noxious factors may have contributed to his
disease. By the time he was diagnosed, it didn’t really
matter. He’d been a robust man
before the disease. When he
died, Dad was stick-thin, his
only bulk contributed by years of
steroids. He required six liters of
oxygen on a continual basis and
suffered severe dyspnea (difficulty
breathing) with just a few steps.
But always, he managed a positive
spirit. Even when he struggled
for the next breath, lips slack and
purple, chest heaving in rapid little
gasps, he would simply mutter,
“I’m outta puff.” It’s no wonder that
over my years as a hospice nurse,
patients with pulmonary fibrosis
have been some of my favorites. I
believe that we can serve more of
them than we do.
In our country,
more than 40,000
patients die
each year of this
disease, a number
which matches the
rate of death from
breast cancer.3
According to the Pulmonary Fibrosis
Foundation, there are over five
million people affected by the disease
throughout the world14—and over
200,000 in the United States alone.
Due to the difficulty in establishing
an accurate diagnosis, this may actually be a low figure.10 In our country,
more than 40,000 patients die each year of this disease, a number which
matches the rate of death from breast cancer.3 The most frequent cause
of death is respiratory failure, leading to 80 percent of the deaths.10 Heart
NewsLine
37
failure, bronchogenic carcinoma,
ischemic heart disease, infection,
and pulmonary embolism are also
common causes.10
There is no cure for pulmonary
fibrosis. Yet, according to data
compiled by the Centers for
Medicare and Medicaid Services,
this appears to be a population
underserved by hospice providers.
In the CMS data for the year
2006, breast cancer falls within
the top 10 diseases served by
hospice while pulmonary fibrosis,
as a lung disease distinct from
Chronic Obstructive Airway (COA)
disease, is not even mentioned—
despite the fact that breast cancer
and pulmonary fibrosis have the
same mortality rate.7,8 While it
may be possible that data for
pulmonary fibrosis is included within
the COA group, this would be a major error in
nomenclature and reflective of the difficulty in
gathering accurate statistics for the disease. If we
know that the rates of mortality for pulmonary
fibrosis match those of breast cancer, yet we are
unable to measure our frequency of services to
this population, we certainly have opportunities to
improve access for these patients.
What is Pulmonary Fibrosis?
To define pulmonary fibrosis, let’s start first with
what it is not. Pulmonary fibrosis is not COPD.
COPD (Chronic Obstructive Pulmonary Disease)
is characterized by a chronic, progressive,
obstructive pulmonary process. Conversely,
pulmonary fibrosis, which is often called Idiopathic
Pulmonary Fibrosis (IPF), is a chronic, progressive,
restrictive pulmonary disease.11 [The word
“idiopathic” in the name simply means the cause
is not known.] It is characterized by chronic
inflammation of the lungs which leads to tissue
injury. Irreversible scarring occurs, leading to
restriction of the lungs and chronic impairment of
gas exchange. Breathlessness upon exertion and
a dry, irritating cough are classic symptoms of the
disease.6
The disease’s progression can be variable, but
most patients experience progressive decline
toward respiratory failure and death within three
to five years from the time they are diagnosed.11
Although such patients are often treated with
steroids, immunosuppressives and antifibrotics,
research has yet to provide evidence that the use
of such regimens improves a patient’s outcome.5,1
38
NewsLine
What’s more, side effects from
these therapies are numerous.
Still and all, physicians and
patients try what they can in
an attempt to slow disease
progression.4
Differences in Symptom
Management
Patients with pulmonary
fibrosis—or IPF—benefit
from traditional approaches
to dyspnea management.1,6
There are, however, two
significant differences
between the treatment of
dyspnea in patients with
IPF and those with COPD.
These differences are
related to oxygen dosage
and the use of diuretics.
Donald Simmler, MD, is an associate medical
director at The Hospice of the Florida Suncoast
and is board certified in internal medicine with a
subspecialty in pulmonary medicine. Dr. Simmler
notes that, “unlike patients with COPD, who may
be harmed by high levels of oxygen, patients
with IPF benefit from higher oxygen flow. Also,
clinicians may attempt to treat the dry rales of
pulmonary fibrosis as fluid overload. Inappropriate
use of diuretics with these patients can lead to
dehydration and discomfort.” These dry, “Velcrolike” rales are due to the formation of scar tissue
and cannot be treated away.6 An additional
difference for these patients involves the severe
and rapid onset of dyspnea. Depending on the
level of disease progression, patients with IPF
may actually appear fairly comfortable at rest
with good saturation rates. However, with the
slightest amount of exertion, rapid and severe
oxygen desaturation occurs. This is an important
distinction for clinicians to note, since these
patients are often evaluated at rest.
Challenges and Opportunities
Difficult to Diagnose
IPF is very difficult to diagnose and patients
sometimes spend years being treated for other
pulmonary conditions with similar characteristics
before obtaining a diagnosis.6,10 Although use of
pulmonary function tests, chest x-rays and highresolution CT scans are common, surgical lung
biopsy is recommended as the gold standard
to confirm diagnosis.2 Continued improvements
in methods for efficient, accurate diagnosis are
sorely needed.
Difficult to Prognose
Although median survival time has been established,11 difficulty still
exists in the timing of hospice referral. The objective measurement of
impact on quality of life through traditional health-related quality of life
tools is a challenge since none exists specific to IPF.11 However, the use
of current tools reflect some correlation between traditional measures
of lung disease severity and scores which reflect a negative impact on
quality of life.11,13 If community physicians use such tools to link disease
severity with quality of life measurements, they may refer to hospice
earlier.
Difficult to Discuss
Many physicians continue to struggle with the difficult discussions
surrounding a terminal diagnosis. Often, physicians fear that the
patient will feel that they have given up.9 However, research shows
that patients are usually waiting for their physicians to initiate such
discussions.9 Additionally, the interpretations of the Hospice Medicare
Benefit regulations by physicians may hinder
such discussions.9 Our physician partners in the
community need help to be better equipped to
carry out these crucial conversations.
Difficult to Let Go
Pulmonary
fibrosis is not
COPD…. Often
called Idiopathic
Pulmonary Fibrosis,
it is a chronic,
progressive
restrictive
disease.
Physicians may view a referral to hospice as a
loss of control over the care of someone they’ve
grown very fond of,9 and patients and their
families may feel that they are losing a close
friend. Both need to be educated and reassured
that hospice is a partner, not a replacement.
In his study of patients’ perceptions regarding the
impact of IPF on quality of life, Jeffrey James Swigris, DO, MS, notes the
following:
“Participants yearned for more attention to end-of-life issues from
the medical community. In general, they felt insecure about the dying
process, afraid their symptoms would not be controlled toward the
end of their lives and that the experience of death would be that of
conscious suffocation. However, more than the dying process itself,
many patients feared that they would be living a ‘worthless existence’
toward the end of their lives. Many voiced concerns that they had
several things that they wanted to do before dying.”12
Patients with IPF, their families, and their physicians, need to be
educated about hospice—and what it can offer to them. They need the
message that we’re not about letting go…we’re about quality of life in
every manner possible.
NewsLine
39
In Summary
Patients with IPF and their families are in great
need of the unique care that only hospice and
palliative care can provide. Through increased
education and support, we must strive to meet
the needs that are before us every day. My dad
didn’t have hospice before he died. Maybe the
fact that his daughter was a hospice nurse gave
him some sense of comfort, thinking that I’d be
able to control things that I really didn’t have any
control over. Or maybe he was afraid of all that
the “H” word conjured up in the small town where
his physician wouldn’t even entertain thoughts
of low-dose morphine, let alone hospice care.
Despite this, we were blessed with Dad’s peaceful
death—with our family at his side. As hospice
and palliative care providers, we know that such
comfort and peacefulness can be a challenge for
these patients. However, if we improve access to
our services, we improve the odds that hospice will
be there to help make that happen.
Management of Idiopathic Pulmonary Fibrosis:
A Survey of Academic Physicians. Respiratory
Medicine, 101(9), 2011-2016.
Davies HR, Richeldi L.(2002). Idiopathic
Pulmonary Fibrosis: Current and Future
Treatment Options. American Journal of
Respiratory Medicine. 1(3), 211-224.
5
Lindell, K. O., & Jacobs, S. S. (2003).
Idiopathic Pulmonary Fibrosis: New Guidelines
for Diagnosing and Managing the Disease
Demand—A Fresh Approach to Nursing Care.
American Journal of Nursing, 103(4), 32-43.
6
Medicare Hospice Data-1998-2005. (n.d.)
Retrieved November 28, 2007 from http://www.
cms.hhs.gov/ProspMedicareFeeSvcPmtGen/
downloads/HospiceData1 998-2005.pdf.
7
NHPCO Facts and Figures: Hospice Care in
America. November 2007 Edition. Retrieved
November 30, 2007, from http://www.nhpco.
org/research.
8
Quill, T. E. (2000). Perspectives On Care at the
Close of Life. Initiating End-of-Life Discussions
With Seriously Ill Patients: Addressing the
“Elephant in the Room.” JAMA, 284(19),
2502-2507.
9
Sue Montgomery has been a nurse for
23 years. She is currently the director of
interdisciplinary practice at The Hospice of
the Florida Suncoast in Clearwater, Florida,
where she has worked in various staff and
leadership positions for more than 12 years.
10
Raghu, G., Weycker, D., Edelsberg, J.,
Bradford, W., & Oster, G. (2006). Incidence and
Prevalence of Idiopathic Pulmonary Fibrosis.
American Journal of Critical Care Medicine,
174(7). 810–816.
Swigris, J.J., Gould, M.K. & Wilson, S.R. (2005).
Health-Related Quality of Life Among Patients
with Idiopathic Pulmonary Fibrosis. Chest,
127(1), 284-94.
11
References:
Allen, S., Raut, S., Woollard, J., & Vassallo,
M. (2005). Low Dose Diamorphin Reduces
Breathlessness Without Causing A Fall in
Oxygen Saturation in Elderly Patients With EndStage Idiopathic Pulmonary Fibrosis. Palliative
Medicine, 19(2), 128-130.
1
American Thoracic Society, Idiopathic Pulmonary
Fibrosis: Diagnosis and Treatment. International
Consensus Statement. American Thoracic
Society (ATS), and the European Respiratory
Society (ERS), American Journal of Respiratory
and Critical Care Medicine, 161 (2000), pp.
646–664.
Swigris, J.J., Gould, M.K. & Wilson, S.R. (2005).
Patients’ Perspectives on How Idiopathic
Pulmonary Fibrosis Affects the Quality
of Their Lives. Health and Quality of Life
Outcomes. Retrieved November 28, 2007 from
pubmedcentral.nih.gov.
12
2
Breast Cancer: Statistics on Incidence, Survival
and Screening. (n.d.) Retrieved November
28, 2007 from http://www.imaginis.com/
breasthealth/statistics.asp#1.
13
3
Collard, H. R., Loyd, J. E., King Jr., T. E., &
Lancaster, L. H. (2007). Current Diagnosis and
4
40
NewsLine
14
Tzanakis, N., Samious, M., Lambiri, I., Antoniou,
K., Siafakas, N. & Bouros, D. (2005). Evaluation
of Health-Related Quality-of-Life and Dyspnea
Scales in Patients With Idiopathic Pulmonary
Fibrosis: Correlation With Pulmonary Function
Tests. European Journal of Internal Medicine,
16(2), 105-112.
What is Pulmonary Fibrosis? (n.d.) Retrieved
November 28, 2007 from http://www.
pulmonaryfibrosis.org/ipf.htm.
Promoting
Responsiveness in
End-of-Life Care
By Sherri Weisenfluh, MSW, LCSW
R
ecently I attended a workshop
where the question was asked:
Are we advocates for patients
and families prior to admission?
Social workers should have no trouble
answering this question with a yes.
The profession’s core value of social
justice calls on social workers to
“strive to ensure access to needed
information, services and resources,
equality of opportunity, and meaningful
participation in decision making for
all people.” Additionally, the preamble
to the National Association of Social
Work Code of Ethics states that “social
workers should seek to promote the
responsiveness of organizations,
communities and other social
institutions to individual’s needs and
social problems.”
Social workers clearly have an
opportunity to play an important role in
hospice and palliative care organizations
by advocating for improved access for
underserved populations. A number of
examples help to illustrate how social
workers might proactively advocate for
access prior to admission:
•Partner with existing organizations to conduct a community-wide
needs assessment. One social worker worked with a local United Way
organization to better determine unmet healthcare needs. Another
program utilized social work students to conduct a needs assessment.
•Conduct a series of focus groups with underserved populations to
determine how best to meet their needs. One hospice program
conducted focus groups with parents of children with life-limiting
illness to determine how best to serve pediatric patients.
•Partner with minority groups to share information about hospice
services and to uncover disparities. Social workers are aware that
programs need to be sensitive to cultural barriers that might prevent
individuals from accessing needed services.
•Routinely review admissions/referral policies to look for barriers to
being served. Some hospice programs have policies that keep them
from admitting patients without a caregiver.
NewsLine
41
Once a patient is admitted to a hospice program, a
social worker might also:
•Advocate for clients who might be viewed as
difficult. Patients who are homeless, have long
histories of mental illness, or refuse to comply
with treatment plans challenge and frustrate
staff. Despite the challenges, such patients
need and qualify for services.
•Review complaints to determine any pattern
relating to access.
•Review the entire range of services under
the Medicare Hospice Benefit to determine if
patients have access to inpatient services when
appropriate.
By being an advocate for patients and families—
prior to admission as well as after— social workers
have an opportunity to daily live up to the core
value of social justice and ensure that hospice and
palliative care programs are responsive to those
we serve.
•Make sure patients have equal access to
continuous care and respite services.
Sherri Weisenfluh is the associate vice president of counseling for Hospice of the Bluegrass in
Lexington, Kentucky, a position she has held for 15 years. In addition to her service as NCHPP’s
Social Work Section Leader, she teaches part-time at the University of Kentucky.
4ads_HalfPg cmyk
12/4/07
11:16 AM
Page 1
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Are you sure?
Improving the
Quality of Life
for Patients with
Advanced Dementia
By Larry Beresford
A
n estimated five million Americans have dementing
diseases, one million of them in advanced stages. Dementia
refers to the progressive loss of memory and other cognitive
functions, often but not always resulting from illnesses such as
Alzheimer’s disease.
NHPCO estimates that 10.3 percent of patients who died in 2006
while under hospice care had dementia as their primary diagnosis.
This estimate is based on data submitted by 603 hospices in
response to NHPCO’s annual National Data Set survey.1 An unknown
number admitted with other diagnoses such as cancer, organ failure
or general debility may have had dementia as a comorbidity or
secondary diagnosis. What’s more, the Centers for Medicare and
Medicaid Services reports that 77,577 Medicare hospice patients were
diagnosed with either Alzheimer’s disease or Senile Dementia in 2005
(up from 31,797 in 2000). This growth in the number of Medicare
hospice patients with the disease, in addition to the number of nonMedicare hospice patients, suggests a total annual hospice dementia
caseload of 100,000.
Estimating life expectancy, recognizing when people with dementia
have an appropriate prognosis for hospice care, and successfully
obtaining coverage for their care from Medicare can pose significant
challenges. NHPCO’s Dementia Work Group is exploring these
challenges, promoting additional prognostic research, and engaging in
dialogue on coverage issues with Medicare fiscal intermediaries.
A new report from NHPCO suggests, however, that hospices can
work within the current system to open doors for eligible patients
and provide them with the palliative care services they need and
deserve. The 27-page report, Caring for Persons with Alzheimer’s
and Other Dementias, is filled with concrete information on providing
high-quality, evidence-based care and helping to maximize the quality
of life of these patients and their families. It also features examples
of hospices that are working effectively within existing eligibility
guidelines. (Members can download a copy of the report, free of
charge. See page 46.)
March 2008
NewsLine
43
Hospice Care Can Make
a Difference
Patients with dementia
who qualify for and are
enrolled in hospice care are
typically no longer able to
express their end-of-life care
preferences verbally. For
such patients, it is important
to look for guidance from
advance directives or from
their family’s surrogate
representations of their
values, especially when it
comes to clarifying important
treatment decisions related
to feeding tubes, antibiotics,
rehospitalizations and the like.
But patients with advanced
dementia may still express
themselves through facial
expressions, body language
and how they react at
meals or bathing times—
challenging their caregivers
to work with these demonstrated preferences
rather than trying to force a meal or a bath on
them using traditional language and interventions.
Even if it takes a little longer, there are techniques
that can be used to recognize, interpret and
accommodate those behaviors in order to enhance,
rather than detract from, the person’s quality of
life.
Most of all, the NHPCO report argues that hospices
need to recognize that their skills—in symptom
management, psychosocial and spiritual support,
and bereavement counseling—can be extremely
valuable to these patients and families. These
individuals are in our communities today, eligible
for hospice care and, in some cases, already on
our caseloads.
Hospices are encouraged to seek out more
information about the specific needs of these
patients and provide targeted education to the
staff members who care for them. In some
cases, it may also be appropriate to consider the
development of specialized services, teams, or
programs for patients with advanced dementia.
For hospices, advanced dementia is the ultimate
challenge, but also the ultimate opportunity to
share the very best that is in our hearts and minds
as caregivers. Strategies to promote and enhance
quality of life—even when the patient is close to
44
NewsLine
death—are the essential work
of hospice teams. But we
need to recognize that the
life of a person with dementia
has value and the treatment
he/she receives can have
significant impact on his/her
life, for better or for worse.
Developing Specialized
Dementia Services
Some leading hospices
have developed specialized
programs for dementia
patients, using a variety
of individualized responses
appropriate to their
particular settings, often
in partnership with local
chapters of the Alzheimer’s
Association. They have found
tremendous responses to
their specialized dementia
programs in the elevated
confidence and job
satisfaction of their staff
and volunteers, in the reactions of long-term
care facilities, community physicians and other
partners, from the public and, most importantly,
from patients with advanced dementia and their
families.
One of the more impressive examples comes
from Beacon Hospice, headquartered in Boston,
Massachusetts, with 20 offices across New
England. In 2005, the organization began to assess
what its teams were doing to enhance quality
of life and preserve dignity and personhood for
end-stage dementia patients. It made a major
commitment to identifying and sharing best
practices with its staff. A one-year exploration
of these issues by a work group of about 20
members—representing different office locations
and disciplines—led to the development of a menu
of optimal, evidence-based interventions.
The program is called Deep Harbors, inspired
by Beacon Hospice’s lighthouse logo and the
nautical theme in its publicity materials, reports
CEO Betty Brennan, “We had the objective of
developing a program that would create value for
these patients, but also bring value to our own
staff to feel more rewarded in providing the care.
We recognized that it was difficult to measure
the value of our services for these patients, but
we went into this process saying there has to be
something better.”
Certain topics came up again and again in explorations of the medical
literature and interviews with local experts in dementia and geriatrics.
Eventually it was necessary to distill this broad dialogue down to a
manageable menu of interventions, chosen based on their validation in the
literature, feasibility of implementation by the hospice, and opportunities
to involve all members of the hospice team. The work group’s initial menu
included four broad intervention areas aimed at enhancing quality of life for
end-stage dementia patients and their families:
•Music therapy
•Therapeutic touch
•Advanced feeding techniques
Hospices need
•Pre-death bereavement support
A full-day training curriculum was developed to introduce the four
intervention areas, along with a four-hour competency certification
process. The hospice’s expert consultants helped teach the curriculum,
which was offered at multiple locations and times for the convenience
of staff. Required certification for all agency staff (450 at the time of
roll-out in January 2006), including office staff, has been monitored for
compliance. New hires are oriented to the same content.
Hospice of the Western Reserve (HWR) in Cleveland, Ohio, offers
another example of an agency-wide response to advanced dementia.
“In the Cleveland area, with its aging community, we were seeing our
dementia numbers increase, particularly in our nursing home program,”
reports Bridget Montana, HWR’s chief operating officer. “At the same time,
our counselors were asking us how to make their visits with dementia
patients richer and more engaging. They wanted our help,
feeling that they weren’t contributing much of value.”
to recognize that
their skills…can be
extremely valuable
to these patients
and families.
The agency convened a multi-disciplinary committee to
study the issues of dementia care, and its members
spent nine months attending professional
conferences and reviewing hundreds of journal
articles and other sources of expertise. As with
Beacon Hospice, a few key themes emerged.
These included:
•Understanding and assessing pain in people
who can’t communicate verbally;
•Distinguishing dementia from similar
symptoms of delirium, which may be
reversible;
•Finding ways to manage difficult
behaviors by non-pharmacological
means; and
NewsLine
45
sensory stimulation tools to help them in their
work with patients. Expressive arts therapists
offered in-services to hospice teams and shared
a screening tool they developed to assist in
determining when patients could benefit from art
or music therapy.
Larry Beresford is a freelance writer who has
authored numerous articles on end-of-life
care. He can be reached at larryberesford@
hotmail.com.
These are just two of the
programs highlighted in the
27-page NHPCO report—
Caring for Persons with
Alzheimer’s and Other
Dementias. Members can
download a copy of the
report—free of charge.
Visit nhpco.org/access
and scroll to “Dementia.”
Hiring Coaches
The Studer Covenant Alliance is hiring coaches. Coaches bring
a strong knowledge base of end-of-life care operations coupled
with the ability to articulate the passion partners expect from
the Studer Covenant Alliance. Our coaches function directly
with our partner organizations. They work at the partner facility
and assist in implementing our framework in order to achieve
results. Travel is required. Management/leadership experience
in hospice or palliative care is required. Excellent personal and
public communication/grammar/speaking skills, the ability
to relate well to people, strong organizational development,
and training skills are a must. Strong computer skills with an
emphasis on Microsoft business applications is required. If you
are interested in positively affecting end of life care organizations
throughout the country, give us a call or send your resume to:
•Placing a greater emphasis on making every
interaction with dementia patients deliberate
and purposeful.
“Based on what we learned from the literature,
we developed a teaching curriculum for personcentered hospice care, regardless of whether
the patient can communicate verbally,” Montana
says. A basic four-hour course was offered to all
clinical staff, with additional content for nurses.
Patient care volunteers were trained in the basics
of dementia and were given activity bags with
46
NewsLine
ADVERTISEMENT
The planning group agreed that the human
connection between hospice caregivers and
patients with dementia is one of the most
important aspects of the care provided. HWR’s
philosophy of person-centered care affirms
and honors the value of the person, regardless
of severity of cognitive impairment. It also
recognizes the need for creativity, flexibility, and
attention to the emotional needs of patients.
HR - Studer Covenant Alliance
913 Gulf Breeze Parkway
Gulf Breeze, FL 32561
Or preferably email to [email protected]
People and Places
HospiceCare of Boulder and
Broomfield Counties Awarded
$50,000
HospiceCare of Boulder and Broomfield
Counties (Lafayette, CO) has received a
$50,000 grant from the Amgen Foundation
in support of its Bridge Palliative Home
Health Program. The Bridge program was
launched in 2006 to improve quality of life
for people with end-stage disease.
Among its goals, the Amgen Foundation
seeks to improve patient access to quality
care and strengthen the communities
where Amgen staff members live and work.
Since 1991, the Foundation has made more
than $85 million in grants to nonprofit
organizations. Shown here: Amgen’s executive director of quality and
its vice president of site operations with Kathy Coyne, director of fund
development for HospiceCare, and Darla Schueth (far right), executive
director of HospiceCare.
VITAS Recognized for Diversity
The Greater Miami Society of Human Resource
Management has awarded VITAS Innovative
Hospice Care® (Miami, FL) its prestigious
Diversity Award. The program was recognized for
the diversity of its workforce (57 percent of its workplace is comprised of
minorities) as well as its longstanding commitment to serving patients of
every age, race, gender, religion, sexual orientation and income level .
Cooney Named President-Elect of AAHPM
Gail Austin Cooney, MD, FAAHPM, has been named presidentelect of the American Academy of Hospice and Palliative Medicine.
The Academy is the professional organization for physicians
committed to improving the quality of life for patients and families
facing serious illness.
Cooney, who is the medical director at Hospice of Palm Beach
County (West Palm Beach, FL), officially assumed the role during
AAHPM’s Annual Assembly this past February. She will become the
Academy’s president in February 2009 .
NewsLine
47
Perry Fine and Steven Passik Honored
by American Pain Society
Every year, the American Pain Society rewards excellence in
the field of pain management. Among this year’s recipients
were Perry Fine, MD, and Steven Passik, PhD.
Fine has been a longtime advocate for hospice as well as
quality pain and symptom management. He was awarded
Perry Fine
Steven Passik
the John and Emma Bonica Public Service Award for his
outstanding contributions in public education and the dissemination of information to further the public’s
knowledge about pain.
Passik was the recipient of the Elizabeth Narcessian Award for his dedication and innovation in pain
education. Passik is the associate attending psychologist in the Department of Psychiatry and Behavioral
Sciences at Memorial Sloan-Kettering Cancer Center, and an assistant professor of psychology in psychiatry
at Cornell University Medical College. He has served on the editorial board of numerous academic journals,
including NHPCO’s official publication, the Journal of Pain and Symptom Management.
Brown Named Fundraising Professional of the Year
The Nashville Chapter of the Association of Fundraising Professionals
named Pam Brown its 2007 Fundraising Professional of the Year. Brown
is executive vice president of community development at Alive Hospice
(Nashville, TN). Under her leadership, the agency has continued to meet
and exceed its yearly fundraising goals, which included raising more than
$2.4 million during 2006—the highest amount in the program’s history.
Brown is also an active member of NHPCO. Since 2005, she has served as
the Development/Public Relations/Marketing Section Leader of NHPCO’s
National Council of Hospice and Palliative Professionals.
Full-time Palliative Care Physician Joins Exempla Lutheran Hospice
Exempla Lutheran Hospice at Collier Hospice Center (Denver, CO) has appointed
Gary Graham, MD, MA, medical director of palliative care services. Graham is board
certified in hospice and palliative medicine and most recently served as chief medical
director for The Denver Hospice.
Avery Named Fundraising Professional of the Year
The Central Florida Association of Fundraising Professionals named Bill Avery the
2007 Outstanding Fundraising Professional of the Year. Avery is vice president
of communications and development for Hospice of the Comforter (Altamonte
Springs, FL ). Within four years of creating an operational development
department, he increased the program’s total annual giving from $200,000—to
$1.43 million. Additionally, the program itself was named “2007 Employer of the
Year” by the National Board for Certification of Hospice and Palliative Nurses in
recognition of its exemplary, sustained support of the certification programs for
hospice and palliative caregivers.
48
NewsLine
A Closer Look at NHPCO’s
Inclusion and
Access Toolbox
NHPCO is grateful
to the Aetna
Foundation, HCR
Manor Care
Foundation and
Heartland Hospice
NHPCO’s Inclusion and Access Toolbox offers guidance—and resources—to
help you meet the diverse cultural needs of your own community. The
116-page manual includes chapters on the:
•Business Case for Inclusion
•Community Presence
•Marketing and Public Relations
for their generous
financial support of
the Inclusion and
Access Toolbox.
•Board Development
•Administration
•Quality Assessment and Performance Improvement
•Workforce Development
•Patient and Family Care Services
•Plus—Appendices on Engagement Strategies,
Individual and Organization Self Assessments, and more.
Practical Guidance From Your Colleagues
You will also find practical advice from hospice practitioners throughout
the country on such issues as recruiting and retaining a diverse
workforce, promoting your services to diverse communities, and providing
culturally relevant care to patients and families.
The Toolbox is available as both a manual and CD through NHPCO’s
Marketplace. Visit nhpco.org/marketplace (Item 821026; Member:
$24.99). More details about this resource can also be found at nhpco.
org/access.
NewsLine
49
Marketplace
Picks
T
his month we spotlight special items to
help you serve patients with a range of noncancer diagnoses.
Dates to
Remember
NHPCO’s Audio Web Seminars
Interdisciplinary Topics:
Second Thursday of the Month,
2:00 – 3:30 p.m. (EDT)
A Caregiver’s Manual: Caring for a
Loved One With Advanced Dementia
By Family Centered Care
Item: 821013, Member: $8.50
Expanding Access to Hospice
Care for People With ALS
Item: 821011, Member: $14.99
03/13/08—Supporting
Patients and Families
Toward Peaceful Life
Closure
04/03/08—Just a Heartbeat
Away: Caring for People
with Defibrillators
Leadership Topics:
Fourth Tuesday of the Month,
2:00 – 3:30 p.m. (EDT)
03/25/08—Hot Regulatory Topics
Medical Guidelines for
Determining Prognosis in
Selected Non-Cancer Diseases
Item: 713008, Member: $9.99
Palliative Care for
Non-Cancer Patients
By Julia M. Addington-Hall
and Irene J. Higginson
Item: 820431, Member: $63.60
The Family Guide to Alzheimer’s
Disease: Five Volume DVD Set
Item: 820866, Member: $108.80
Hospice Care for Patients with
Advanced Progressive Dementia
Edited by Ladislav Volicer
and Ann Hurley
Item: 820727, Member: $41.65
To order, visit Marketplace (nhpco.org/
marketplace) or call 800/646-6460.
Source Code: NL01.
50
NewsLine
04/22/08—Nurse Practitioners in Palliative Care
and Hospice: The Business Case for Hiring a NP
NHPCO Conferences
04/10 - 04/12/08—23rd Management and
Leadership Conference, Advocacy in Action:
Mobilizing People and Organizations to Lead
Change
Washington, DC
08/18 – 08/20/08—2nd National Conference on
Access to Hospice and Palliative Care, Obstacles,
Options and Opportunities
Minneapolis, MN
Hospice MDP
Two-Day
Foundational
Course
04/08 - 04/09/08—Washington, DC*
05/13 – 05/14/08—Providence, RI
Hosted by Home and Hospice Care of Rhode Island
*Additional MDP Modules will be available as MLC
preconference seminars on April 9. For details,
visit nhpco.org/mdp.
Save the Date...
2008 National Hospice Foundation Gala
A Red Carpet Affair
Friday, April 11, 2008 – Omni Shoreham Hotel, Washington, DC
Cocktails & Silent Auction - 6:30 PM
Dinner & Awards - 7:30 PM
Post Party Immediately Following
Master of Ceremonies - Bob Schieffer
CBS News Chief Washington Correspondent and Moderator, Face the Nation
Honoring
Melissa Gilbert
Actor, Advocate, and President, Board of Directors, Children’s Hospice
and Palliative Care Coalition
Recipient of the Humanitarian Leadership Award and
ADVERTISEMENT
Mary Fisher
Artist, Author and Speaker
Recipient of the Global Vision Award
Gala sponsorships are now available. For information contact NHF at 877/470-6472,
or visit: www.nationalhospicefoundation.org.
Being Held in Conjunction with NHPCO’s 23rd Management and Leadership Conference
Do You Want to Be the
Number One Provider in
Your Service Area?
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Let Optimum Hospice Solutions help you achieve
measurable outcomes and become the number
one choice for end-of-life-care. OHS provides
comprehensive solutions exclusively for hospice
because we know the “business.”
• Inpatient/Residential Feasibility Studies
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• The Watchman™ Program — The First Hospice
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NewsLine
51
Professional. Responsive. Expert.
RESULTS YOU CAN SEE
Since 1989, The Corridor Group, Inc. (TCG) has provided
the knowledge, resources and expertise to help clients be
resilient through times of change and growth.
Whether implementing quality initiatives, identifying an
executive candidate or fortifying education resources,
TCG is focused on helping you achieve your goals.
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while achieving results that drive your success. Contact us at
52
THE CORRIDOR GROUP, INC.
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your single source of contact
866-263-3795 | www.corridorgroup.com
NewsLine
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866-263-3795 or visit www.corridorgroup.com.
Choices
®
A pioneer and leader in the American hospice
movement, and an advocate for the rights of the
terminally ill, VITAS works to expand hospice
access to population groups historically
underserved by healthcare providers.
When life is limited, aging in place is what people
want. Our professional team of hospice experts
helps patients remain at home.
At VITAS, patients and families come first.
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hospice leader?
Please call 305.350.6957
www.VITAS.com
RECRUITING PROBLEMS?
HMR conducts searches
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Specializes in the recruitment of hospice/homecare
professionals.
Has filled hundreds of openings throughout the
United States for both large and small
hospice/homecare organizations.
Works on a contingency basis, which means a fee
is only payable if a candidate is hired
as a direct result of our efforts.
Senior Level Managers
Administrator/General Manager
Director of Patient Care Services
Clinical Directors/Patient Care Managers
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FOR MORE INFORMATION
PLEASE CONTACT:
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Brian Johnson
Director of Recruitment
[email protected]
www.hmrjobs.com
Hollywood, Florida
NewsLine
53
Eternal Reefs creates permanent living
cremation memorials that preserve, protect and enhance the
marine environment.
These living legacies benefit future generations.
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54
NewsLine
1-888-423-7333
★
★★
★★
★ ★ ★ ★★ ★ ★ ★ ★
★★
★
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★
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★★
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★★★★★★★★★
★★
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CoPs on the Way!
★
★
★★★★★★★★★★★★★★
★
★
DON’T DELAY!
★
Planning Tips for Success
A
s NHPCO has previously reported, the
final rule of the new hospice Conditions of
Participation is expected to be published in
the Federal Register in May 2008. Will your hospice
be ready?
new regulations. There will be changes in the final
hospice CoPs, but reviewing the proposed language
now, and beginning the process of updating your
organizational materials, will save you time and
effort once the CoPs are final.
As we begin the countdown to the new CoPs,
you can begin preparing and planning for
implementation success. It is expected that
hospices will have 60 days from the date the final
rule is published to become compliant with the
Follow the easy steps below to begin your plan
for CoP success! And, be sure to use NHPCO’s
“Checklist for Success” that is posted at the
Regulatory & Compliance Center of our Web site
(nhpco.org/regulatory).
Form a CoP
implementation
workgroup within
your hospice
organization—and
involve field and
office staff. You will
have more success if
staff members have a
stake in the process.
Review
your patient
handout materials
and update
them with new
information from
the Patient Rights
section of the
proposed hospice
CoPs (418.52).
Review
your policies and
procedures—
incorporating
language from these
proposed hospice
CoPs:
•Comprehensive
assessment of the
patient,
•IDG care planning
& coordination of
services, and
•Quality assessment
and performance
improvement.
Look for more planning tips in next month’s NewsLine.
NewsLine
55
National Hospice and Palliative Care Organization
1700 Diagonal Road • Suite 625
Alexandria, VA 22314
This year’s National Hospice Gala is set for Friday,
April 11—in conjunction with NHPCO’s 23rd MLC
in Washington, DC. As part of the festivities,
Melissa Gilbert, board president of the Children’s
Hospice and Palliative Care Coalition, will be
honored with the 2008 Humanitarian Leadership
Award for her advocacy efforts on behalf of
pediatric palliative care. Join us for this special
event. For details, see the display ad on page 51
or visit www.nationalhospicefoundation.org.
Please visit our Web site at nhpco.org.
Non-Profit Org.
U.S. Postage PAID
PERMIT
NO. 6418
Merrifield, VA

March 2008 NewsLine - National Hospice and Palliative Care

Transcription

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