December NewsLine 2.indd - National Hospice and Palliative Care

Iss
ue
Fo
ur,
Wi
nte
r
‘05
-0 6
9
Rural Issues
Perspectives From Those Providing Care
A Family’s Perspective
Management
Care Delivery
Community as a Resource
More...
NewsLine
December 2005
NATIONAL COUNCIL OF HOSPICE AND PALLIATIVE PROFESSIONALS (NCHPP)
2005 SECTION LEADERS
CHAIR
Bob Miller, BA, MDiv
VITAS Healthcare Corporation
Miami, FL
CNA
Cassandra Cotton, CNA
Nathan Adelson Hospice
Las Vegas, NV
PHARMACIST
Phyllis Grauer, RPh, PharmD
Palliative Care Consulting Group
Dublin, OH
IMMEDIATE PAST-CHAIR
Barbara Bouton, MA, CT
Bridges Center, Alliance of Community Hospices
Louisville, KY
DEVELOPMENT/PUBLIC RELATIONS/MARKETING
Pam Brown, CFRE
Alive Hospice, Inc.
Nashville, TN
PHYSICIAN
Joan Harrold
Hospice of Lancaster County
Lancaster, PA
ADMINISTRATOR
Eric M. Storch, PsyD
Catholic Hospice
Miami, FL
FINANCE/INFORMATION SYSTEMS
Jill Lampley, MBA, SPHR
Hope Hospice and Palliative Care
Fort Myers, FL
RESEARCH/ACADEMICS/EDUCATION
Joy Berger, DMA, MT-BC, BCC
Hospice Institute, Alliances of Community Hospices
Louisville, KY
ALLIED THERAPIST
Richard Briggs, MA, PT
Enloe Hospice
Chico, CA
NURSE
Pat Gibbons, BSN, CHPN
Beacon Place/Hospice and Palliative Care of
Greensboro
Greensboro, NC
SOCIAL WORKER
Gary Gardia, MEd, LCSW
Saint George, UT
BEREAVEMENT PROFESSIONAL
Patti Homan, PhD, LPC, CT
Hospice of Lancaster County
Lancaster, PA
CEO/EXECUTIVE DIRECTOR/PRESIDENT
Samira K. Beckwith, CHE
Hope Hospice and Palliative Care
Fort Myers, FL
PERFORMANCE IMPROVEMENT/QUALITY ASSURANCE
Vice-Chair
Shareefah Sabur, MNO
Hospice of the Western Reserve, Inc.
Cleveland, OH
SPIRITUAL CAREGIVER
R. Bradley DeFord, MDiv, PhD
Torrance Memorial Home Health & Hospice
Torrance, CA
VOLUNTEER/VOLUNTEER MANAGEMENT
Kathy Roble, MS
The Hospice of the Florida Suncoast
Largo, FL
Insights
TABLE OF CONTENTS
Introduction: Working Wonders in Rural America . . . . . . . . . . . . . . . . . . . . p. 13
Section One — A Family’s Perspective:
Saying Goodbye to Dad . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 14
Section Two — Management
Delivering Hospice and Palliative Care in a Rural Setting:
A CEO Shares Her Thoughts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 20
Staffing Challenges and Rewards . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 24
Section Three — Care Delivery
Two Approaches to Bereavement Support:
The Unique Nature of Bereavement Groups in Rural America . . . . . . . . . . . . . . . . . p. 26
Grief Work at the Kitchen Table... and Other Places of Comfort . . . . . . . . . . . . . . . . p. 27
From the Clergy’s Perspective: ‘Doin’ Good in the ‘Hood’ . . . . . . . . . . . . . . . . . . . . . . . . . p. 28
Accessing Rural-Community Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 30
A Day in the Life of a Rural-Hospice Nurse . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 36
Section Four —Community as a Resource
Rural Hospice Volunteer Programs:
“Big Hearts and Boston Butt Fundraisers”. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 38
Fundraising and FRIENDraising Success Stories . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 39
Plus
Soothing the Journey: The Universal Power of Music Therapy . . . . . . . . . . . . . . . . . . . . p. 42
In the Firstperson: Listservs — A Blessing of Modern Technology . . . . . . . . . . . . . . . . p. 44
Additional Insight into Issues of Preparedness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 47
Issue Four
Winter 2005/2006
12
Working
Insights
Winter ‘05-‘06
13
Wonders
in Rural America
M
ost providers face the same key challenges in the delivery of hospice and palliative care across rural America. In this issue
of Insights, we not only examine some of these challenges, but also share the wonderful ways in which rural providers are
overcoming them, by drawing upon their creativity and understanding of the unique needs within their communities.
For example, Linda Todd shares her experience in developing a successful community-based pilot program in partnership
with her area’s health system... Donna Burgess and Barbara Lindeman each describe how they met the bereavement
needs of their communities in different, but equally effective ways... while Carolyn Nystrom documents her 15-hour day as
a rural-hospice nurse whose program spans a service area of 3,000 square miles.
These pieces — and the many others that comprise this issue — represent the voices of providers from across the
country, including Vermont, Michigan, Iowa, Minnesota, Idaho, Arizona and California. What’s more, their approaches and
solutions to the common issues they face are as varied as the rural landscapes in which they work — approaches and
solutions that can serve as an inspiration to us all.
Insights
Winter ‘05-‘06
14
A FAMILY’S PERSPECTIVE:
SAYING GOODBYE TO DAD
Excerpt from The Hospice Choice
By Marcia Lattanzi-Licht,
with John J. Mahoney and Galen Miller
Everything is changing for Garfield Platt and his family. Just two
weeks before he was diagnosed with inoperable lung cancer, Garfield
Platt was out in deep snow saving the newborn calves on his small
ranch. Now, five months later, at 71, his life is slipping away as
quickly as the morning mist on the prairie he has always called home.
Proud of his hard work and modest successes, Garfield Platt is
dedicated to his ranch and his family. His wife, Norma, has been with
him for 47 years, and their relationship reflects their quiet, steady
natures. Norma and Garfield have two grown children, Melanie and
Bob. Busy with demands of their careers and families, both Melanie
and Bob keep in close contact with their parents but are less close to
each other.
Melanie, the oldest, lives 700 miles away and visits two or three
times a year. A corporate attorney, she is divorced and has no
children. Bob, his parents’ favorite as a child, is a program manager for
a large computer manufacturer. He lives 60 miles away with his wife
and 10-year old son. Since his father has become more ill, Bob visits
at least once a week. Garfield would like Bob to visit more frequently
and stay longer, and often chides him about being in such a hurry.
In spite of the radiation treatments, Garfield’s breathing is becoming
more and more difficult. For the past 10 weeks, he has needed
constant oxygen and he finds wheeling around the tank bothersome.
His weight is dropping rapidly and he’s increasingly tired and
depleted. An independent rancher who could handle the crises of
severe winter storms and drought, Garfield feels his life is out of
control.
At Garfield’s visit to the oncologist, Dr. Phil Miller recommended the
care of the local hospice. While Garfield did not fully understand
the services, he trusts Dr. Miller. And, Norma is needing more help
and time to do errands. One of the ways that Norma copes with the
pressures of ranch life is by visiting with the local store merchants and
neighbors that she would see while shopping.
When the hospice nurse and social worker come by for the initial
visit, both Norma and Garfield are apprehensive. They listen as the
nurse and social worker describe the homecare services and the
Insights
support that hospice offers. Norma is openly relieved and eager for
some help. Garfield has numerous questions and is concerned about the
people who will be coming into their home. While they are friendly with
neighbors, the Platts are private and independent people who do little
formal socializing.
As the hospice nurse, Doris, examines Garfield physically, she soon
discovers through careful assessment that he is experiencing a fairly
constant low-level pain. Garfield describes his pain to the nurse as
a gnawing pressure in his lungs and ranks it as a three or four on a
10-point scale that ranges from a mild headache (one) to unbearable
pain (ten). They also discuss his shortness of breath, which is creating
restlessness and difficulty sleeping.
The hospice nurse continues to ask Mr. Platt about his other concerns.
Reluctantly, he admits that he is also having difficulty with constipation,
and that he does not enjoy eating much because it seems like too much
effort lately. When they talk about the seriousness of his illness, Mr. Platt
speaks about licking the cancer. He then concedes that he is very tired.
“Sometimes it’s hard to go on. One of the things I know from ranching is
how to deal with difficult times, but this has thrown me for a loop. I just
don’t know what to do.”
At the same time, out in the living room, Susan, the hospice social
worker, asks Norma about how she is handling the physical demands
of Garfield’s illness, and what types of support she would find helpful.
Norma says that she is feeling overwhelmed by Garfield’s weakness and
irritability, and tearfully admits that sometimes it is hard not to snap
back at him. The social worker agrees that full-time caregiving creates
a level of distress that most people find difficult to tolerate without
an occasional break. She offers the availability of a hospice volunteer
to come by once or twice a week. Norma thinks it would be good for
Garfield to have someone to talk to or play cards with while she does
errands.
Norma and Garfield are members of the local Methodist church. They
have attended regularly in the past, but have not been to church for the
past four months. Inquiring about support from the church, the social
worker learns that their pastor knows of Garfield’s illness, but not of his
decline. Norma hopes that he will come out for a visit to their home and
agrees to have the hospice chaplain contact their pastor and arrange for
him to visit.
The nurse and social worker explain the services to the family, and
give them a written pamphlet outlining the Medicare Hospice Benefit.
Garfield questions the costs of hospice and Norma is interested to
know what nursing services will be available. Even though Garfield
Winter ‘05-‘06
15
is still mobile, he only leaves home for his appointments with the
oncologist. “I’ve always been a man who loved his home, and this is
the only place where I want to be now.”
After a brief planning discussion, the family and the hospice
professionals decide upon twice-weekly nursing visits at the outset.
The volunteer will visit once or twice a week, and the social worker
will be involved if needed.
Within the first 72 hours of hospice’s involvement, Garfield begins
taking regular doses of an oral narcotic analgesic that Dr. Miller has
prescribed. It is adjusted to his specific needs and soon controls his
pain. When Garfield initially expressed concern about the addictive
nature of the medication, Doris, the hospice nurse, explained that
morphine has few side
effects and would allow
Garfield to stay awake and
alert. She went over the
possible side effects, and
pointed out that it was
most important for Garfield
to feel comfortable.
Norma is able to help
Garfield with his shower
for the first two weeks of
hospice care. After that, a
nursing assistant, Cathy, is
assigned to assist Garfield
three times a week with
personal care.
The hospice volunteer, Dave, comes by once or twice a week for a
couple of hours to play rummy or blackjack with Garfield for as long
as his energy holds up. Dave teases Garfield about quitting when
Dave is winning, so they are keeping a running score of the game.
Usually, after a half hour, they sit together and listen to a local radio
station, commenting to each other on items of interest. Three weeks
later, Garfield is too weak to play cards, and finds it hard to engage in
even small bits of conversation. Short of breath even with increased
oxygen, Garfield tells Dave, “I feel like I can’t say too much anymore.
I do like to have you here, though.” Dave continues to visit and reads
the local paper to Garfield, or watches television with him.
relationships with their parents. Longstanding resentments boil over,
and afterward, Bob and Melanie are not speaking to each other.
Both parents are distressed over the conflict, but feel powerless to
know how to make things better. After the second day of Melanie’s
stay, Mr. Plat speaks openly to the hospice nurse during her regular
visit. “Things are just too complicated, and this is too hard on Norma
and the family.” Listening, the nurse reassures Garfield that his family
will work things out, with the hospice team available to help make
things smoother.
The hospice nurse remarks to Melanie that the stresses of seeing her
father so ill may be greater than she realizes. She suggests that since
Melanie will be in town for one more day that she and Bob meet with
the hospice social worker
to discuss family decisions,
their father’s care, and
any other concerns or
questions. Reluctantly,
Melanie and Bob agree,
and Susan, the hospice
social worker, spends
time with them clarifying
their concerns for their
father and their roles in
helping the family navigate
this difficult time. Both
acknowledge that they feel
helpless and are struggling
to deal with the loss of
their favorite parent.
To read this entire chapter from The Hospice Choice, go to nhpco.org/
newsline and scroll to the link under December 2005. To purchase The
Hospice Choice, go to nhpco.org/marketplace or call 800/646-6460.
The following week, Melanie comes out for a three-day weekend
visit and attends to her parents’ legal affairs and will. During the
visit, Melanie and Bob have harsh words with each other about their
Insights
Winter ‘05-‘06
The Top 10 Marketplace Bestsellers
Prepare for 2006 with the best products of 2005! The top 10 bestsellers of the year offer a comprehensive
selection for leaders and staff alike.
1. Final Gifts — a moving and compassionate book on the experience of dying.
2. Notes on Symptom Control in Hospice & Palliative Care — an excellent resource on successfully managing symptom control.
3. The Four Things that Matter Most — discusses the capacity for interpersonal healing and wholeness
even in the face of death.
4. Hospice Operations Manual: Resources for Managing a Hospice Program of Care — a must-have resource
for hospice managers and administrators.
5. It’s About How You LIVE Awareness Bracelet — demonstrate your passion
6. What is Hospice? (You Matter to the Last Moment of Your Life) — provides facts about hospice and the
hospice philosophy.
7. 2005 Hospice/Palliative Care Month Key Chains — displays the hospice quilt
8. Hospice Care: A Physicians Guide — a guide that helps physicians understand their role in hospice
care.
9. One Patient, One Day — 15 growth imperatives for growing your hospice one patient, one day at a
time.
10. Palliative Care Pocket Consultant — a reference guide for symptom management in palliative care.
To place an order, visit nhpco.org/marketplace or call 800/646-6460.
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HOSPICE ASSOCIATE MEDICAL DIRECTOR
Rhonda Craven, Recruitment Coordinator
Alliance of Community Hospices & Palliative Care
Services
3532 Ephraim McDowell Drive
Louisville, KY 40205-3224
Phone: (502) 719-4128
Fax: (502) 719-4213
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PRESENTING
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Most seminars will offer Continuing Education Credits for Nurses, Physicians and Social Workers!
Learn more at
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or call
800/646-6460
20
DELIVERING HOSPICE AND
PALLIATIVE CARE IN A RURAL SETTING:
A CEO SHARES HER THOUGHTS
By Linda Todd, RN, BA
Hospice of Siouxland, Sioux City, Iowa
Hospice is often included as a service provided in the health system,
but it is my belief the full value is not realized or even recognized.
With the increasing numbers of people dealing with chronic
advanced illness which will ultimately lead to end of life, health
systems will require the active participation of hospice and palliative
care providers.
Even though we believe our services are significant, we are but a
small portion of the grand scheme of healthcare systems. Other
service lines — such as cardiology services, emergency and trauma
services, and orthopedic services — are significant for the viability of
the health system. And yet:
•
•
•
•
How many dollars are spent caring for persons who are
chronically ill, have recurring emergency room visits and/or
repeat hospitalizations?
How many people are dying in hospital ICUs after suffering from
an advanced illness for a number of years?
How many people are dying on the medical or oncology units
who have had active and aggressive treatments but little
clarification of treatment goals?
How many referrals are coming to your hospice that are onservice for less than seven days?
These issues can be a source of frustration for hospice providers — or
are they the opportunities? I choose to believe these are opportunities
and if we wait for others to come and seek us out, then we are
missing the very opportunity at our doorsteps.
Hospice and palliative care providers have a responsibility to build
the relationship within the health system. We know our business.
We know the needs of patients and families who are dealing with
an advanced or life limiting illness, we have expertise in pain
and symptom management, in leading difficult conversations to
clarify treatment goals, in interdisciplinary team services, and in
coordination of care.
Health systems are committed to providing high quality services.
Acute care providers serve many roles that are key for hospice and
Insights
palliative care including: owner; referral source; contracted service for
inpatient and respite services; provider of care for the chronically ill;
and provider of care for end of life.
Building on our strengths and being part of the solution
to problems health systems face
The first step has to be to raise awareness of the hospice and palliative
care business as well as understand their business, their priorities,
and their challenges. With that understanding, we can identify
opportunities to advance hospice and palliative care.
Increasing awareness starts with the CEO and the administrators
and leaders at the health system. Have you ever invited the CEO or
other members of the leadership team to attend an IDT conference
or made a joint visit with your staff? CEOs care about people and
providing quality service — help them to see the heart of hospice
and palliative care.
“CEOs care about people
and providing quality
service — help them to
see the heart of hospice
and palliative care.”
It is not only the services that we provide, but also understanding the
business of hospice — the per diem reimbursement; the numbers
that are pertinent to your business; and the importance of length of
service and volume to your business. Just as the management of the
DRG reimbursement is pertinent to the financial management of the
acute care services — management of “per day” costs are important
in the world of per diem reimbursement.
Financial accountability and responsibility are also essential for the
advancement of hospice and palliative care services. Too often, there
are health system leaders who do not want to expand a program
that continues to be a financial drain to the system. Be responsible
for the financial viability of your organization. The health system
world operates on data — and your data is no different. For patients
who have been referred to hospice in the last week of life — find
a friend at the health system who can help you retrieve data on the
patient’s inpatient acute experience for the previous six to twelve
months. Record the number of emergency room visits and inpatient
admissions and the number of days — as well as the variance
between reimbursement and cost. Through those numbers you
Winter ‘05-‘06
21
can demonstrate the cost of end-of-life care in an acute setting
and communicate the unmet needs of the patient and family. This
also helps you to demonstrate the costs associated with short-term
referrals.
Our firsthand experience in being part of the solution
One of the initiatives at our health system was to improve end-oflife care. It is great that this was included on the list — but trying
to identify how we were going to accomplish this goal was the
real challenge. Our medical director and I decided we could make
several recommendations on how they could improve end-of-life
care, but what if they did not see these as issues, or thought we were
implying that they were not providing good care? We decided the
best approach was to listen
to them and see what they
would identify as issues.
We developed a series of
focus group meetings with
representatives from each
of the nursing units. The
staff clearly identified the
issues — they knew the
problems, but did not know
how to make changes or
improve the care.
•
•
staff expressed discomfort in talking with patients and families
without scripting or cues to assist them; and
staff believed there was confusion that centered around
inpatient palliative care services, community-based palliative
care services, and hospice.
Our challenge was not in identifying the opportunities, but in finding
ways to facilitate change; that is, what resources do we have that
would benefit the health system, and how do we move these issues
and concerns from the anxiety level into an action for improvement.
Discharge planners, nursing directors and unit managers, and social
service departments are all important to advancing hospice and
palliative care. Providing the tools, building the relationships, and
finding every opportunity to
make their jobs a little easier
will begin to bridge the
relationship with hospitals
and hospice and palliative
care providers.
Our community-based
case management pilot
program
The focus group meetings
were wonderful opportunities to not only share information, but also find meaningful ways
to improve care at end of life. It seemed like a support group and,
through their stories, much was revealed:
• staff anguished over the lack of communication that occurs in
clarification of treatment goals;
• though there had been great advancements in pain and
symptom management — there were still fears in “giving too
much of a narcotic”;
• staff felt that patients dying in the ICU were not receiving the
attention and care they deserved because the needs of others
seemed to take precedence;
• staff was experiencing grief when patients died, but had no
opportunity to debrief;
• patients who had been chronically ill for a number of years were
still dying in the ICU setting, with families facing the trauma of
discontinuing life support treatments;
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One initiative that has been
developed in partnership
with our health system has
been community-based case
management through our
community-based palliative care team.
The hospital is struggling with the financial burden of patients who
have recurring emergency room visits and repeat hospital admissions.
The financial burden to the hospital is great. It is our belief with
community-based palliative care services, that we can reduce the
number of emergency room visits and inpatient admissions if patients
have the level of community-based support. The fragmentation of
healthcare delivery leaves individuals and their caregivers to deal not
only with the physical difficulties of the advanced illness, but also
with the social and financial issues that are sometimes even more
significant. Not knowing who else to call or what else to do, they go
to the emergency room or hospital.
We presented a proposal to the vice president of Patient Care Services
to pilot caring for 25 of the patients who had a history of recidivism
continued on next page
Winter ‘05-‘06
22
A CEO’S THOUGHTS, CONT’D...
for emergency room visits and inpatient admissions. The hospital
would contract for these services from our palliative care team. Our
role was to coordinate community-based services and, if the only
provider, we would provide interdisciplinary services. Often, homehealth services may also be in the home, especially if the patient was
referred following an inpatient admission. We would not duplicate
services, but would fill in the gaps where necessary.
We have recently completed one year of the community-based case
management program. We cared for 46 patients who very much had
the pattern of recurring emergency visits and repeat hospitalizations.
The patients had advanced illness —multiple co-morbidities, and
they either lived alone or had caregivers that were overwhelmed
and exhausted. These were very challenging patients and, in order
to break an established pattern, initially required multiple visits to
establish the trust and develop the interventions which contributed
to their recidivism. But once trust was established and some of the
factors that were creating the crises were addressed, we began to see
a stabilization for patients and their caregivers.
“...we believe we can
reduce the number of
emergency room visits and
inpatient admissions...
with community-based
support.”
Throughout the year, data was collected on the number of emergency
room visits, inpatient admissions and inpatient days, the variance
of reimbursement and the cost to the system. We also looked back
twelve months prior to the start of care and then collected the
same data post community-based case management. In a report
card presentation to the vice president, the following results were
demonstrated:
• 30% reduction in emergency room visits;
• 25% reduction in inpatient admissions and inpatient days; and
• 22 % reduction in losses for the acute care system.
as well as patient and caregiver suffering were reduced significantly
and quality of life improved. The report card included the actual data
elements and the pain and suffering scores. Needless to say, from
the perspective of the health system, the community-based case
management program was a resounding success. The data spoke
volumes — and plans were made to further expand the communitybased case management program. I cannot stress enough the
importance of the presentation of data. We knew the program was
successful, but the data presented in a report-card fashion clearly
identified the impact of the effectiveness of the community-based case
management program.
“The data spoke volumes
— and plans were made
to further expand the
community-based case
management program.”
As you read this, one might say “this is not hospice — how did this
initiative do anything to expand hospice services?” The fact of the matter
is that 26% of the patients served on the case management program
were at end of life, either dying with a sudden change in symptoms
or admitted into the hospice program. The experience highlighted the
difficulty in determining prognosis for chronically ill people, and offers a
conversation on how we can better identify patients for hospice.
It does not matter what you do — you know your community and
health system —the important task at hand is to do something.
Patients and families will benefit from your efforts.
Linda Todd is Director of Hospice of Siouxland in Sioux City, Iowa. She was
a guest presenter/speaker on a variety of topics during NHPCO’s Rural
Intensive in July 2005 — including “Visioning: Promoting Hospice in Your
Health System.”
What’s more, 78% of the patients did not return to the emergency
room and 50% did not have a readmission. Just as important, pain
Insights
Winter ‘05-‘06
24
PALLIATIVE CARE IN
RURAL SETTINGS: STAFFING
CHALLENGES AND SOLUTIONS
Retention — Very Closely Linked to Recruitment
By Diana Pierce, RN, CHPN
Central Vermont Home Health and Hospice, Barre, VT
Years ago, I attended a presentation about staff retention and support.
It was during the Medicare IPS (Interim Payment System) years, when
agencies were faltering — and even failing. An investigation by
the Office of Inspector General was making things difficult for many
hospice programs, so the session was held late in the afternoon — a
Friday, I think. The speaker described her hospice program in glowing
terms. She had little staff turnover, great community support, no
reimbursement issues, and so on. When she got to the part about
leaving a candle (presumably the electric holiday type) burning in the
office window as a “beacon of warmth and hope” for staff returning
from their day’s journey, the whispers and murmurs of discontent
around me erupted. One attendee stood up and literally shouted “My
agency is in trouble financially, I’m worried about productivity, audits,
finding staff and keeping the ones I have, and you’re telling me to
light a candle?!?” She then stormed out along with several others.
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Assure That the Workplace is a Positive Place
•
To my mind, the presenter made a good point about the need
for staff support, but I think we all agree on the need for some
practical, doable approaches too. So, I’ll share some fairly simple,
straightforward approaches that we take at Central Vermont:
Recruitment
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Include your team in decision making relative to hiring more staff,
including caseloads, geographic considerations, productivity and
acuity. For example: Advise staff of any management and/or
administrative constraints —“Here’s what we have; now how can
we make it work?”
Conduct a salary market analysis annually, with salary increases as
indicated and rationale explained. For example: “We don’t pay as
well as the cardiac care unit at the hospital, but we pay as well as
other home health and hospice agencies in the state.”
Use recruitment letters. Nurses are in short supply and physical
therapists are in even shorter supply in our area, but a personal
letter sent to the mailing list (obtained from our state licensing
board) brought us several good prospects. The letter emphasizes
“making a difference.”
Become the employer of choice. This is mostly about how
employees are treated; the “unseen benefits” extend the “hospice
ethic” to staff and they’ll, in turn, tell their friends and colleagues.
Insights
Use per diems to assure regular staff time off. Also, include per
diems in team meetings and events to assure commitment and
familiarity.
Beef up per diem staffing during summers, holidays and school
vacations. (We use nursing students and other students with
LNA licensure, especially to provide extended-time visits.)
Draw from your pool of contacts for per diem staffing. (We
currently have the RN manager of a local RCF, a CHAP surveyor
who only does surveys 2 weeks per month, and an Atlanta
Georgia hospice nurse and another from Florida who both
summer in our cool mountains.)
Use continuous care. This decreases nighttime death attendance
which saves staff sleep. It’s also such a comfort to families and
is, of course, the right thing to do. (But this is another whole
discussion.)
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We acknowledge and validate personal feelings through the
use of a memory board and remembrance corner where we
can honor our losses. We’ve created a symbol of our collective
identity by asking each team member to bring in an item that
“speaks” to them in some way. Each item (from a pink golf ball
to a red satin kite to a ribbon from Talbot’s) is attached to a large
grapevine wreath hung in the team area. Beside it, we’ve added
a calligraphy quote etched by one of our LNA’s: “Our strength lies
in our connection to one another; by joining with one another
we grow to be our best selves.”
We also have a memorial garden, a quiet spot behind the office
building for meditation, planting — and yes, candle lighting.
Include staff in the business and financial aspects of your
program. Monthly financial reports are a regular part of team
meetings.
Provide “involved leadership” including home visits and
maintenance of clinical expertise to assist in problem solving.
Give staff control of weekend, holiday and on-call rotations.
Laugh often and heartily — together.
Acknowledge good work daily. For example, we give free car
washes and snack discounts after a particularly tough weekend.
We also pay for materials and the exam fee for CHPN and
CHPNA certification — and provide a normal salary increase
when the staff person passes. As a result, 100% of our eligible
staff are certified.
Miscellaneous perks like sponsoring a fuel-oil buying club, tire-
Winter ‘05-‘06
25
purchase discounts and a bottomless coffeepot are important
and simple ways to show staff that they’re valued.
Diana Peirce, RN, CHPN, is the Director of Hospice and Palliative Care
services at Central Vermont Home Health and Hospice in Barre (population
9,000). For the past 27 years, she has served those at or nearing end of
life in this rural Central Vermont community, where she also lives.
ADVERTISEMENT
Lest I sound like my colleague of years ago, painting a picture of
hospice utopia, let me acknowledge that this is not at all easy, doesn’t
happen overnight and doesn’t always work. Despite what, for many
of us, are the obvious advantages of working in a small rural area,
where literally “everyone knows your name,” there are significant
challenges, including:
• Struggling to maintain confidentiality;
• Caring for our own — friends, family members, staff
themselves. These require special support, but we wouldn’t have
it any other way;
• Technology transition — a real challenge for us all;
• Succession planning as leaders consider retirement and
necessary transitions present themselves.
On balance, I think the reasons for attending to issues of staff wellbeing are obvious. Average lengths of stay for staff and for patients
are quite connected really. The range of possibilities for creating a
climate of support where staff not only stay, but grow and flourish, is
endless. And lighting a candle to warm the end of a long day is not
such a bad idea after all.
Insights
Winter ‘05-‘06
26
TWO APPROACHES TO
BEREAVEMENT SUPPORT
When Patti Homan, NCHPP’s Bereavement Professional Section Leader,
learned that “rural issues” were the focus of December’s Insights, two
colleagues came to mind whom she knew had a wealth of experiences
to share. Donna Burgess and Barb Lindeman, both steering committee
members for the NCHPP Bereavement Professional Section, are
bereavement counselors serving primarily rural populations. “They
have done a wonderful job of conveying the ways in which they have
adapted their approach to meet the needs of the bereaved in their
communities,” Patti said, adding “In hospice, we always say we ‘help
people do what they need to do’ in caring for the dying patient. Donna
and Barb beautifully illustrate how that approach continues to be
carried out when providing bereavement services.”
The Unique Nature of Bereavement
Groups in Rural America
By Donna Burgess, MSW, ACSW, CT
with Theo Haage, LMSW
Hospice of Central Iowa, West Des Moines, Iowa
There is a sense of familiarity when you walk into the small-town
cafe at 8:30 in the morning. The coffee has been freshly brewed
several times and the smell of bacon that was cooked hours ago still
hangs in the air. When the door opens and someone walks in, there is
a welcome smile from those already there. The conversations change
to incorporate the addition to the crowd and, by the end of the
morning, everyone has figured out who the new person is, who they
are related to, and where their ancestors lived. Almost immediately,
that new person has a support group.
Facilitating a grief support group in rural America is a lot like walking
into that café. Individuals, who may not cross paths for any other
reason but their loss, follow the same routine of getting to know
each group member — who they are related to, and where their
“people” came from. Support group facilitators are always sure that
participants have not met before, however the participants always
manage to figure out how they know each other and who they know
by the end of the first support group meeting.
Insights
We remember starting a group in Fairfield, Iowa. One of the
members who attended the group was a young woman we’ll call
“Joanne,” whose 12-year-old son had died four months before. She
and her husband were originally from a smaller town about 20 miles
away, but they had not been in the area since their graduation from
high school. They moved back about four years ago to be closer to
their roots after their son was diagnosed with childhood leukemia.
They had spent much of their time since returning to Fairfield at the
hospital in Iowa City, pursuing treatment for their son. They knew
almost nobody in town other than people at their jobs. She worked
at the local grocery store and he was at the Co-op. They turned to our
hospice when their son’s disease became terminal.
“The sadness that
descends on the group as
they hear again and again
about the loss of their
friends and neighbors is
palpable....”
Another person attending the group, who we’ll call “Mabel,” was an
80-year old woman who had lived “by the lake” all of her life. “The
lake” is located 40 miles west of Fairfield and has become a weekend
resort for the moneyed people of Iowa City. Every possible day for
the past 10 years, Mabel has been at the nursing facility where her
husband of 62 years lay, following a debilitating stroke in 1995. She
had given up life at “the lake” and moved in to town. She had been
consumed with caring for her husband and needed to be closer to do
it. Despite his guarded condition following the stroke, he died quite
suddenly of a heart attack nearly a year ago. She was lost without
him, and hoped the group would help.
Before the group was even under way, Joanne and Mabel had figured
out where each of them came from. They knew which second cousin
was married to whose next-door neighbor’s kid, and that Mabel’s
daughter-in-law baby-sat Joanne when she was young!
While it is a great sign of support to be there for each other and find
the connection between these two (and eventually the other eight
in the group), in rural support groups we see that the burden of grief
becomes greater for a time. They all know each other so they end up
carrying the heaviness of all the losses. The sadness that descends
on the group as they hear again and again about the loss of their
friends and neighbors is palpable. Oddly, the facilitators of the group
Winter ‘05-‘06
27
are often the only ones left out of the loop, and the only ones who have not
heard the stories of the deceased.
One of the tasks of a grief support group is to let people tell their stories.
The benefit of groups is that, typically, nobody else knows their story. There
is healing in saying the words to people who have not heard it. The need to
tell and retell the story is the same in rural areas as it is in the big city. The
issue in rural areas is that it can be everybody’s story. The town mourned the
loss of Joanne’s son, and it mourned the loss of Mabel’s husband.
There are not many local papers that print daily, so other means of
communicating the death have developed. Deaths are often announced via
posters or placards placed in the café, or the drugstore and grocery store
in the town square. HIPAA is an unknown entity when the town needs
to grieve a loss. All are invited to come and be supportive of the family’s
suffering. The logic is
“You may need that same
support sometime, so you
need to make sure that
you offer it to others in
their time of need.”
While all share the
sadness, there is that
sense of camaraderie
that develops from the
group. Once they are able
to acknowledge each
other’s losses and share
that pain, they also have
the capacity to gather
themselves and be there for one another in ways that can only happen
in rural communities. When the group ends, these people will continue
to see one another — at the café in the morning or at the drugstore or
grocery store. They will greet one another, offer support and be there for one
another for years to come.
Donna Burgess was a Social Worker with Hospice of Central Iowa for six years
before going into private practice as a grief counselor. She returned to Hospice
of Central Iowa three years ago as the Grief and Volunteer Services Director.
Theo Hagge has been a Bereavement Counselor for Hospice of Central Iowa
for the past two years. Along with following survivors, she facilitates grief
support groups in several of its rural offices.
Grief Work at the Kitchen Table...
and Other Places of Comfort
By Rev. Barbara J. Lindeman, MS, MS, MDiv, BCC, FT
NCHPP Bereavement Professional Section
Steering Committee Member
The phone rang. I picked it up. A man cleared his voice a few times,
then spoke slowly, his voice catching now and then... “Uh, we’ve
had a few deaths, and uh, you know, it’s been hard on the wife....on
Ma...and uh, you know, I miss them, too, and well, we saw your ad
for a group, but well, we don’t think we want to be in a group and
well ... anyhow, we’re planting now, busy in the fields, don’t have all
that time, and well, is there a way we could learn about getting over
deaths, you know?”
That was the conversation
that changed how some
of our grief support
is offered here in the
rural areas of southern
Minnesota. We have
always offered four- and
six-week support groups;
we’ve offered individual
counseling too. This family
didn’t have the time to
commit to a group, nor
were they interested in
meeting one-on-one.
After speaking to this man, I sat back and got to thinking. As I drove
about the countryside visiting our hospice families, mostly living on
farms, all busy tilling the fields, preparing to plant beans and corn,
I thought some more. Later that evening, I called that family back
and offered a seminar for about an hour and a half. The response:
“Seminar? Like a class, now that would be good. Sounds better than
support group or counseling. I like the idea of a seminar. One time,
huh? That would work.”
It is about the vernacular. For many, the words counselor, support
group, and even social service still evoke a state of wariness; it is one
of those red flags that seem to convey to others that “something is
wrong,” or “you aren’t pulling yourself up by your own bootstraps.”
continued on next page
Insights
Winter ‘05-‘06
28
GRIEF WORK AT THE KITCHEN TABLE,
CONT’D...
I grew up here in this rich rural country. I know how important it is
to remain stoic and never show signs of vulnerability — for after all,
what would the neighbors think? What will the neighbors think? This
is the credo around here. So we settled on a good time for the farmer
and his family to have a “seminar.” It turned out to be around noon, as
they had to stop work and eat anyhow, so perhaps they could fit it in
as they ate sandwiches and had their coffee.
Spontaneity is a Way of Life in Rural America
Now in rural areas, we tend to be rather spontaneous. I mean if it
rains and we can’t get in the fields, we can run to the “cities” and
shop. If the grain is dry enough, we cancel going to the State Fair,
and when someone calls and asks for ‘help’ — we act fast. The
concerned farmer had called on a Thursday morning, so by the next
Tuesday noon the first ‘seminar” on “Understanding Grief’ was up and
running. We had about five family members at the first seminar, and I
offered a follow-up session the following week, just in case questions
had arisen or people wanted another time to share or seek more
information. Two of the five attended the following week, at a local
hospital where we met in a conference room.
To be honest, I had been uncomfortable offering such a seminar,
knowing how in-depth our support groups became, and knowing
people often needed more than one session to get at their feelings
and feel safe enough to share their stories. Yet this approach has
clearly met a need. Hearing what grief may do to one’s physical,
emotional, and spiritual being was enough. They were reassured to
learn that they weren’t “going crazy.”They learned that the mind and
the body are connected, and sometimes it’s a good idea to see your
family doctor when you have experienced a significant loss. They
realized it was okay to grieve in different ways, and they knew they
could contact us if the need arose again.
At times I’ve met individuals in the back booths of restaurants, at
times we meet with entire families in their homes after dinner, on
Saturday mornings around a kitchen table, or on Sunday afternoons
sitting on the porch — all at their discretion, so it is safe and
comfortable for them. And at other times, we also offer the seminars
in public places such as libraries, churches or schools. In fact, I took
the materials and content from our four- and six-week support group
series and adapted it for our ninety-minute “seminars.”
In this part of the country, people tend to be private, yet always aware
of what others may be thinking. Here in rural Minnesota, people
seem to truly appreciate being able to safely say to their ‘neighbors’
— as that farmer shared several years ago — “I’m going to a class
about dying and learning what to say to the wife since her sister died,
you know.” In reality, of course, the man’s brother and father had
also died in the past year, and he needed to hear that his feelings,
his insomnia, and his ailments were in the range of normal — and
that it was quite appropriate and perfectly acceptable to see his
family doctor about such things; things he learned by coming to our
“seminar.”
In learning from the bereaved, and adapting our services accordingly,
we feel we have met a need in this rural area, where, as Garrison
Keillor says, “All the women are strong, all the men are good looking,
and all the children are above average.”
Rev. Barbara J. Lindeman has been a bereavement counselor for
15 years, and a minister/chaplain for 14 years. She is currently
the Chaplain and Bereavement Counselor for Immanuel St Joseph
Community Health (Hospice-Home Care), based in Mankato,
Minnesota — where she has worked for nine years. Although she has
also worked in cities such as St. Louis, Dayton, and Dubuque and loved
everyone there, she says “my heart is in the rural sector.”
FROM THE CLERGY’S PERSPECTIVE:
DOIN’ GOOD IN THE ‘HOOD’
By R. Bradley DeFord, PhD, BCC
NCHPP Spiritual Caregiver Section Leader
“Seminars” Are Now Offered Throughout the Region
So, thanks to that farmer who took that first courageous step to call in
the first place, we now offer these “seminars” throughout our region,
along with the longer support group options.
Insights
When my children were very young, a great many years ago now,
Sesame Street was a television staple in our home. Funny how things
work: They have probably forgotten many of the little ditties that the
show used to teach them, but I haven’t!
Winter ‘05-‘06
29
One of those songs asked, “Who are the people in your neighborhood?”
It said, “They are the people that you meet each day.” Our family was
living in rural southeastern Michigan at the time, and in large part,
that song rang true for us. Our neighbors were people that we’d meet
each day. This had not been true for us when we were living in Chicago,
a city touted for its neighborhoods. Still less was it true for me when
I had lived in New York City, where there really is a Sesame Street.
Neighborliness in each of these places meant something different. But
in southeastern Michigan, it meant that one might actually know the
shopkeepers and other folks on whom one would depend — such as,
perhaps, the professionals and volunteers from hospice.
I don’t think the good people who produced Sesame Street ever
showcased any hospice, much less palliative care, personnel; nonetheless, when you come onto a hospice service in a rural community,
you’re likely to meet someone you already know — or are related to!
Relationships are what make rural life special.
NHPCO’s rural toolkit, “Providing Hospice and Palliative Care in Rural and
Frontier Areas” — which was produced in collaboration with the Center
to Advance Palliative Care and the National Rural Health Association
— is especially helpful in outlining many of the practical issues that
face rural and frontier providers. When it comes to providing adequate
spiritual care, several of those issues come into particular focus.
For instance, the toolkit recognizes that staffing professionals in all four
core hospice disciplines has, in rural settings, certain complications due
to scarcity and limitations of resources. But, interestingly, many rural
hospice providers see themselves as already surrounded by professional
spiritual caregivers — in the persons of those who are clergy and
lay ministers of area churches; however, whether they are spiritual
caregivers, in a hospice sense may — or may not be true.
Distinguishing Between ‘Religious’
and ‘Spiritual’ Care
I believe that rural-hospice providers would benefit from beginning
with the distinction between “religious” and “spiritual” care. Religious
care is quite specific; spiritual care opens toward a more universal
perspective.
I have no doubt that local clergy and lay ministers provide their faith
communities with adequate religious care; that they have the capacity
within themselves to be available for the spiritual needs of hospice
patients — especially those not of their own denomination — takes
a different measure of the individual.
Professional chaplains have been trained in developing this
capacity within themselves; but not all professional
clergy, and perhaps only a few, have received this training. Many, if not
most, are more comfortable in providing religious care. And, I would say,
nearly all lay ministers are better suited to provide ‘religious’ rather than
‘spiritual’ care.
Thus when a hospice, rural or otherwise, relies upon clergy and lay
minister volunteers for “spiritual” care, those who administrate that
hospice should consider three things:
• First, local clergy and lay minister volunteers probably require
more — not less — supervision, in order to ensure that they are
indeed providing spiritual — and not religious — care, even to
those of their own denomination. There is a gap there that needs
to be bridged, and administrative attention is required to bridge it.
• Second, hospices which rely upon local clergy and lay ministers to
provide spiritual care may need to teach them what that is, since
the distinction between religious and spiritual care may not be
familiar or clear to them.
• Third, sample forms should reflect spiritual assessment; a distinction that may not be familiar to some hospice administrators. For
example, the rural toolkit includes samples of various forms used
by rural and frontier providers, including a spiritual assessment
form. However, this form is actually an assessment of ‘religious’
need. Providers should make sure they don’t short-circuit the
‘spiritual’ assessment process should the hospice patient indicate
that “religion or spirituality” is not important to them.
Spiritual options should be included with the religious options on
the sample form provided in the rural toolkit. For example, a more
adequate form would allow the staff person to help the patient
and family understand the distinction between religious and
spiritual care. This can be done by including some assessments of
the nature of the patient’s hope or the value of love in the family, in
addition to their sense of faith, which may or may not have led to
participation in a so-called “organized” religion.
Such teaching and assessing is important in rural areas — especially
for those hospices relying on volunteer clergy and lay ministers to
provide spiritual care. Moreover, in rural areas especially, you are, shall
we say, “labeled” by your religious affiliation. Such labeling is very
difficult to dispel, and it influences whether you are able to give or
receive spiritual care.
I remember when I was a volunteer hospice chaplain in that
southeastern Michigan community I mentioned earlier. When
people were asked whether they wanted the chaplain to visit, often
their first question was, “which church is he from?”They thought
they knew me if they knew my denomination! Of course,
continued on next page
30
FROM THE CLERGY’S PERSPECTIVE,
CONT’D...
to people’s homes on this scared mission and ignore the outcome, or
assume that everything would work out all right. Moreover, volunteer
spiritual caregivers especially, benefit from being “de-briefed.”
Providing spiritual care is emotionally and spiritually moving work.
nothing could be further from the truth. But the hospice patients,
expecting and perhaps fearing that the care I would offer would
be religious and not spiritual, took pause from my denominational
affiliation.
Ministers are identified with their churches, and churches with their
ministers. On the one hand, a patient or family might decline or accept a
visit from a clergy or lay minister simply because of the denominational
affiliation. On the other hand, a church whose clergy or lay minister
volunteers for a hospice might hope that that person will do precisely
what chaplains are constrained from doing — namely proselytizing.
In other words, there is more of a “territoriality” entailed in providing
spiritual care in rural hospices than in urban and suburban settings.
Administrators of rural hospices would do well to take this into account
and address this challenge with persistence, discernment and creativity.
For one thing, there is an amazing amount of both talent and heart
in rural areas. When it comes to providing truly spiritual care, talent
can be taught and heart encouraged. The rural toolkit mentions some
things that are helpful, such as sending would-be spiritual caregivers
to workshops or retreats where the distinction between religious
and spiritual caregiving is taught and articulated. Professional
development in this direction favors not only the hospice and its
patients and families, but also the faith communities such persons
already serve.
For another, encouraging persons of different faith affiliations to work
together not only improves the level of spiritual care a hospice provides,
but also strengthens community. I remember working with the
indefatigable Sr. Marcella Gardener, a Dominican dynamo, in providing
bereavement services for the families of our hospice patients, again back
in that rural southeastern Michigan locale. It was my impression that
because we were of different religious traditions but were working as a
team, those we served were more trusting of the probability that they
were receiving spiritual and not religious care.
Finally, in considering the costs entailed with providing professional
spiritual care, administrators of rural hospices would do well to
consider two factors which are often overlooked. One revolves around
the costs associated with providing adequate supervision of volunteer
clergy and lay ministers. You simply would not want to send folks out
Insights
The other matter for rural hospice administrators to consider is
the impact upon the interdisciplinary team in having one or more
of the core disciplines being represented by a volunteer. When
spiritual caregivers are compensated — and required to come
to team meetings — several dynamics cascade. The status of
spiritual caregiving is enhanced. The quality of the interdisciplinary
conversation is improved. The descriptions of the patients and their
families are broadened and deepened. And the spiritual caregiver
feels ‘included’ in the community of mutual support that is the
hospice team. All of these relationships benefit.
Hospices serving rural and frontier communities have their own
challenges, certainly. Yet there is a richness in relying upon
relationships in places where relationships are already of relatively
high importance. Patients are more likely to be persons, and families
are more likely to be people other people know. Such places are
fertile soil for growing spiritually significant connections. A hospice’s
spiritual caregivers are its best gardeners.
Rev. Brad DeFord, PhD, BCC, has been the Chaplain for Torrance
Memorial Hospice in Torrance, California for more than eight years. He
has also served as the NCHPP Spiritual Caregiver Section Leader for the
past six years and, in that capacity, has enjoyed consulting with rural
hospices about how they might provide excellent spiritual care.
ACCESSING COMMUNITY RESOURCES
IN RURAL AREAS
by Suzanne Y. Bushfield, Ph.D., LCSW
and Margie Rodriguez Le Sage, Ph.D., LMSW
NCHPP Social Work Steering Committee Members
While there is no single standardized definition used to designate a
place or population as rural, rural hospice social workers recognize the
unique aspects of their work where populations are less dense, access to
services and professionals may be limited, poverty and early mortality
rates are higher and more persistent, and there is a greater reluctance to
seek outside help.
continued on page 35
Winter ‘05-‘06
35
ACCESSING COMMUNITY RESOURCES,
CONT’D...
The development of hospices in rural areas is generally embraced for a number
of reasons. Most importantly, there are advantages for rural communities to
provide care for seriously ill patients and their families close to home. Some
rural hospices have the advantage of knowing and engaging with their
community members before they need hospice care, thereby permitting
hospice philosophy to be part of their rural community’s discourse. Moreover,
hospice care is advanced by the rural inclination for community members to
form linkages and partnerships to meet shared needs — even in the face
of scarce resources. As a result of resource challenges, rural hospices become
instinctively creative in mobilizing resources and networks, including recruiting
and sharing staff and volunteers to best provide end-of-life care.
Despite the advantages for rural hospices, the uniqueness of rural livedexperience provides excellent opportunities for social workers to respond
proactively. First, the expected risk for staff and volunteers to engage in
various contexts with potential hospice consumers challenges social workers
to promote organizational protocols that ensure the integrity of hospices
and the well-being of the patients and their families. Social workers can
help their respective hospices to address concepts of dual relationships and
confidentiality and redefine them if necessary to best meet the community’s
sense of moral goodness. Social workers are challenged to advocate for
professional dialogue of unique ethical quandaries at both national and
international levels.
Second, social workers are prompted to fully use their generalist knowledge,
skills, and values to identify and address a number of rural realities that
uniquely challenge rural living and dying, including older populations,
premature mortality, struggling economies, faltering health and social service
infrastructures, and isolation.
The isolation of rural areas in general, and for specific hospice consumers in
particular, presents the added challenge of under-resourced support systems,
difficulty in hiring trained staff across all the disciplines for hospice care, longer
rural response times, increased travel costs and risks, less staff productivity,
and reduced accessibility to training opportunities. Given these challenges
and opportunities to serve, social workers are called to aggressively carve a
niche for social work in rural hospice care and to employ multi-level generalist
approaches to introduce innovation that advances hospice care in rural areas.
No where is generalist social work more essential than in rural hospice care.
Social workers are needed in a number of roles in all layers of rural end-of-
Insights
life care.They can remain active in effecting change towards optimal
hospice care in several areas:
• Making inequity in rural access to hospice care a public matter at
all societal levels;
• Addressing inequitable funding and payment formulations at both
state and federal levels through public information dissemination
and advocacy for policy changes;
• Networking and collaborating to broker and develop needed
service options with varied individuals, groups, and organizations
— including religious groups, schools, local businesses,
corporations, media sources, and professional and philanthropic
organizations;
• Partnering with disease-specific organizations to enhance
outreach to rural customers;
• Providing caregiver training to faith-based and religious groups to
assist them in providing care;
• Providing leadership in identifying innovations which work in rural
settings, by providing a voice of rural hospice concerns at regional,
state, and national meetings, and engaging in outcome-based
research to establish evidence-based models;
• Developing, training, and supporting teams of “on call” volunteers
who can respond more quickly to emergent needs;
• Employing effective engagement strategies with diverse
constituencies to provide access to culturally relevant hospice care;
• Using technological resources such as listservs and electronic
journals to make current information accessible to rural hospices
and their respective communities.
The combination of generalist social work knowledge, skills and
values makes it possible for social workers to offer a “whole systems”
approach to rural hospice care. Given their occupational due, social
workers can contribute to the development of new and viable
hospice delivery models that consider the unique features of rural
communities and the multi-level challenges that hospices face in
providing optimal care in rural areas.
Dr. Suzanne Bushfield is an Assistant Professor of Social Work at
Arizona State University in Phoenix, Arizona. She has been a social
worker since 1978, with 25 years of practice experience in rural
settings.
Margie Rodríguez Le Sage, Ph.D., LMSW, is Assistant Professor in the
School of Social Work at Michigan State University. Much of her endof-life practice — spanning over 25 years and based on hospice and
other palliative care models — has been in the context of marginalized
rural communities.
Winter ‘05-‘06
36
Early Afternoon
A DAY IN THE LIFE OF A
RURAL-HOSPICE NURSE
By Caroyn Nystrom, RN
Hospice of the Wood River Valley, Ketchum, Idaho
Early Morning
The sun was just barely touching the top of the mountain, it was a
cool fall morning, and the temperature was 24 degrees. The phone
rang at 6:45 am, a hospice patient had died. I offered immediate
reassurance and said I’d be there soon. I quickly grabbed a piece of
toast with peanut butter, my brushed stainless thermos with coffee,
my cell phone, a sweater and a parka. Luckily, I was headed south
on the only road through our valley — the northbound lane was
congested with commuter traffic. It took me 30 minutes to travel the
20 miles.
The family dogs met me at the gate and followed me down the dirt
road to the house, a two-story wooden frame structure surrounded
by a variety of fruit trees. The patient’s son was distraught because he
had spent the night sleeping in the orchard to chase off the moose
who had been intruding and eating apples, instead of being with
his mom. The family was eager to have the body removed from the
home so I called the only funeral director/coroner in the county, who
arrived in his unmarked white Suburban.
After taking information from the family and explaining that
cremation would take place 60 miles away in another town, we
wrapped the body in a sheet and carried it down the stairs to the
awaiting gurney and out to his Suburban. I provided comfort to
the family and they told more stories and shared remembrances.
I dispensed of the controlled substances and put the bedside
commode, room monitor, leftover gloves, adult briefs, and lift sheets
in my car.
Mid-Morning
I called the office, connected with the other RN, and stopped by one
of the four pharmacies in our 3000 square-mile jurisdiction to pickup meds for a patient. It was still too early to see most of the patients,
so I quickly checked on the two patients at the only long-term care
facility (21 beds). Fortunately, everyone seemed stable and I was
able to arrive at the Senior Center in enough time to facilitate the
Caregiver’s Group at 10:30.
Insights
At noon, I headed up the highway. At mid-valley, I turned left up the
canyon, called the office to tell the office manager that I would be out
of cell range for the next hour or so while I made a bereavement visit.
The day had warmed to about 63 degrees, the air had the smell of dry
leaves, and I noticed the hillside aspens were just beginning to exhibit
that golden glow that we all love about living in the Rockies.
When I arrived at my destination, I stopped at the green iron gate,
unlocked the chain, drove through, and relocked the gate behind me.
Horses roamed freely across the property. I stopped at the electric gate,
got out of my car to release the electric fence, dropped it on the ground,
drove through, got out of my car and reconnected the fence. The house
was another quarter of a mile away and, once there, I was invited to sit
by the wood-burning stove and have a cup of coffee.
The gentleman I was there to see was 85 years old. His wife of 66 years
had died in the spring of metastatic breast cancer. He had cared for her
for almost nine months, with the support of hospice volunteers. He
had lost three fingers and walked with a limp as the result of a mining
accident many years ago. He had also lost a son in an avalanche. For
many of us, this man’s life was difficult. He cut all of his own wood,
hunted, fished, and repaired all of his own vehicles. At the same time,
he was eager to keep his wife home, bring her coffee, make her soup,
and sit by the log bed he had made and read to her. When she died, he
didn’t call. He waited until morning and then calmly called to say...”My
bride died last night. I didn’t want to bother you and I just wanted us to
have a few more hours together.”
During this visit, we discussed bereavement issues with a lot reflection
on how his grief was mirrored in the isolation of the landscape and how
he, too, felt a change of season occurring in his life. While he could see
the value in participating in an organized grief group, he felt stronger
that nature would be his teacher, that he had survived other things and
would survive this loss too. He requested that we come back, “just to
check in” and added with a smile...”when you’re in the neighborhood”!
I drove the seven miles back to the main highway and continued my
day by dropping off meds to a pleasant man determined to remain in
the home where he had been born. He was adamant about not having
a caregiver and was comfortable with the idea of no one being present
if he should die.
He had been bedridden in the hospital for more than 10 months, and
stable on MS Contin 15 mgm BID to control the shortness of breath
related to his end-stage COPD. A neighbor came twice a day... in the
morning to fix coffee and oatmeal and to leave cheese, crackers and
grapes at his bedside for his lunch, and again in the evening to heat
Winter ‘05-‘06
37
a meal, empty the bedside commode (which he was able to use
independently during the day), and put a blanket at the foot of his bed.
I fixed him some lunch, took out the garbage, filled his Mediset,
reassessed his pain and listened to stories about the now-silent
mines. I offered the services of a volunteer, but he politely declined,
indicating “I’m doin’ okay at the moment.” Before I left, we decided
we’d visit again in three days... it would be the weekend, but he felt
every three days was the frequency he liked.
Later in the Afternoon
When I arrived at the office, there were several messages to return and
the weekly paper to read. The next hour I was on the phone... to the
home health supplier to pick-up the bed of the person who had died
earlier... to the volunteers who had been involved... and to all who
had called about other issues.
From my desk, I moved to our “common computer” and did the
discharge summary to the M.D. and the letter of condolence to the
family I had seen this morning. It was almost 2:30 by now. I grabbed
some yogurt from the fridge and began my documentation. At 3:00,
someone came into the office seeking resources for private caregivers,
so I took the time to determine whether or not the patient may
be appropriate for hospice or palliative care. I also suggested our
Caregivers Group might be helpful. Then the phone rang.
A patient’s wife called. The couple had just returned from seeing his
oncologist in a city two and one-half hours away (there are no local
oncologists here). She indicated her husband was too weak to get up
the stairs and into the home and “could we come to help?”
I headed north. About five miles out of town, just as I rounded
a curve, sheep were obliterating the two-lane highway. Basque
sheepherders on horses were slowly moving them from the high
country, and dogs were darting here and there to keep them in some
sense of order. The band moved a little to the right and I was able
to inch my way up the highway. After getting the patient back in
his home, safely in bed after his exhausting day-long trip, he was
still eager to relay the physician’s visit and the conclusion that more
chemotherapy was no longer an option. So what I thought would
be a “short” visit was, in reality, an opportunity for him to share the
thoughts and feelings that had been in his head for the past three or
four hours.
engine airplane once every other week to practice and oversee the
nurse practitioner.
Early Evening
The office was closed when I returned. I changed the on-call RN
message and headed to the post office to pick up my personal
mail (there is no mail delivery here). I unlocked the box and while
throwing out the catalogs, was interrupted by someone who
participated in our Men’s Grief Group. He wanted to tell me how he
had celebrated the first anniversary of his wife’s death and how it had
affected him. I listened as if we had had an appointment and then
went to the market, taking care to avoid anymore “chance meetings”
in a town where everyone knows everyone.
I was able to accomplish my “mission” until a large donor approached
me and wanted to hear about how our bereavement camp had been
this summer. While I was happy to explain the camp, I was reluctant
to take more time at that moment. I indicated we had great pictures
at the office and hoped she’d stop by soon and see for herself what
her support of hospice allowed us to do. I got in my vehicle and called
the other RN from my cell to coordinate care for the night. We also
updated each other on our day’s visits and talked about the next day.
We had asked a physician to make a home visit to change a foley and
a supra-pubic catheter on a medically complicated patient with an
ileo-bladder fistula. We had decided we would ask a local massage
therapist to borrow her table for the procedure because the patient
was in a bed almost level with the floor.
The Day’s End
It was now close to 7:30 pm... there was work left undone and there
was unexpected work completed. The sheep had delayed one visit,
but the autumn colors and vistas provided renewal throughout the
day. While there was little time to talk with other professionals during
the day, the small team is close — and we can confide in each other.
The temperature had dropped to the 40s. I could see smoke coming
out of the chimney as I drove into my driveway — glad we had
gathered up and chopped wood a month earlier. The day was over...
almost. I still had to launder the lift sheets I picked up this morning
and return them to the office tomorrow. I also needed to make soup
to take to patients in celebration of the first day of fall.
Carolyn Nystrom, RN, is currently the Executive Director
of Hospice of the Wood River Valley in Ketchum, Idaho
where she also sees patients and is the only full-time
employee. She has been in hospice for 25 years, the last
15 of which has been spent in this rural setting.
By the time I drove back to town, the sheep had been herded up to
bed down for the night. A local family-practice physician returned
an earlier call on my cell phone. He was calling from a clinic in a
community 150 miles north of here which he flies to in his single-
Insights
Winter ‘05-‘06
38
RURAL HOSPICE VOLUNTEER PROGRAMS:
“BIG HEARTS AND
BOSTON BUTT FUNDRAISERS”
By Sandra Huster
Covenant Hospice, Dothan, Alabama
I have experienced the blessings of working with hospice volunteers
over the past nine years, in both urban and rural settings. Hospice
volunteers, regardless of locale, have one thing in common: a big heart.
Nowhere is that more true than in rural areas like southeast Alabama.
In 2001, when I moved from the Tampa Bay area and left my
volunteer management position with The Hospice of the Florida
Suncoast, my friends told me that I would learn to bake biscuits and
fry corn bread. Little did they know that instead, I would learn to cook
Boston Butts! (For a long time I couldn’t even say the words!) For
readers who don’t know what a Boston Butt is, it’s a pork shoulder
roast, popular in this part of the country, cooked on big smokers for
hours and sold by the side of the road! In 2003, a group of dedicated
Covenant Hospice volunteers, in Dothan, Alabama, organized the first
annual Boston Butt Sale. They cooked 24 hours a day, for three days
and raised over $30,000 the first year and $38,000 the second year!
Now, I’m proud to say the words “Boston Butt Sale”!
So what is unique about managing a rural hospice volunteer program
— other than unusual fundraisers, like a Boston Butt Sale? Rural
programs, like our urban neighbors, face unique challenges and
realize special rewards.
Some Challenges...
Transportation: Patients and families who need volunteer support
may live as far away as 50 miles from the hospice office. Often these
families need help with transportation to the doctor or hospital,
sometimes located another 25-50 miles away from their homes.
Current gas prices and limited budgets for many senior volunteers
— actually for volunteers of all ages — present barriers in meeting
the needs of rural patients and families.
Trust: Rural patients and families are often hardworking, Godfearing people who take pride in “caring for their own.” Sometimes
it’s difficult for these families to allow a volunteer to come into their
homes and help. (This may be true for any member of the hospice
team.) If a volunteer is not a local person, fellow church member or a
part of another close group, building trust with a patient and family
may take time.
Insights
Territory: Oftentimes, rural hospice programs serve a
geographically large territory, comprised of many individual
communities. Each small community has its own identify and sense
of pride. Volunteer managers are challenged to meet volunteers
in their individual communities — to recruit, train and support
volunteers “at home.” Often volunteers are not willing to travel 20-30
miles to join other volunteers from neighboring communities and
counties. This results in multiple volunteer groups and programs, and
places great demands on the rural volunteer manager’s time.
...And Rewards
Faith: Rural communities have at their hearts strong faith
congregations that care for their members and neighbors. Recruiting
and training members of rural congregations strengthens the hospice
volunteer program. African-Americans in rural areas are more likely to
volunteer for hospice through their churches. The benefits to hospice
organizations partnering with rural faith congregations include
volunteer recruitment, increasing awareness of hospice programs and
services, and greater access to hospice care.
Family: In rural settings, volunteers are truly part of the hospice
family. Relationships and ties are strong between volunteers, staff,
patients and families. It’s not unusual for volunteers to cook meals
for patients, bring cakes to families after a death, or sew curtains for
hospice office windows. Volunteers build ramps, mend fences, repair
porches and “fix whatever needs fixing” for patients, families and the
hospice office. The sense of faith and family that is so strong in their
day-to-day lives is extended to their hospice volunteer experience.
Friends: Rural volunteers serve as everyday ambassadors for the
hospice programs that they serve. They serve as both fund- and
friend-raisers. There is no better spokesperson for any hospice
organization than a dedicated volunteer. Rural volunteers talk about
“their hospice” at church gatherings, sewing clubs, local restaurants
and wherever they go. Their testimonials have a tremendous impact
on our hospice organizations...one that money can’t buy.
If you ever travel through southeast Alabama, please be on the
look out for a “Boston Butt Sale.” If you see one, it may be a group
of hospice volunteers. Please stop and say hello. Big hearts are
guaranteed (and so is good food)!
Sandra Huster, who is Director of Volunteer Programs for Covenant
Hospice, has received numerous accolades for her work, including an
Award of Excellence in Volunteer Programs from Florida Hospice.
Winter ‘05-‘06
39
FUNDRAISING AND FRIENDRAISING
SUCCESS STORIES
By Pam Brown, CHFR
NCHPP Development/Public Relations/Marketing
Section Leader
Do you think running a successful development program can
only happen in big cities or the “burbs”? Think again. The hospice
programs you are about to meet are raising dollars, educating their
communities and developing loyal donor bases. Their approaches are
different from each other, but they have one thing in common: They
have learned what works in their unique communities and they’re
using that knowledge in fundraising and FRIENDraising. Read on and
you’ll discover that development creativity is alive and well in rural
America.
Hospice Services, Inc.
Phillipsburg, KS:
Annual Dinners
Tailored to Each
County’s Residents
Executive Director Sandy
Kuhlman reports that
Hospice Services, Inc.’s
three-county service
area covers 12,000
square miles and has a
population of less than
60,000. Residents tend
to support activities in the counties in which they live. That means
when it’s time to plan the annual dinner and silent auction, planning
must be multiplied by three — one of the dinners is semi-formal
to best play to the “vibe” of that county and the other two are casual.
“We are very fortunate,” Sandy said. “Staff do very little of the work on
these dinners. They are planned and carried out for the most part by
volunteers.”
Not only do volunteers put in a lot of time, but generous support
from local businesses helps offset costs and ensure more net dollars
go to providing hospice services. In the 23 years Sandy has been with
Hospice Services, Inc., she has learned the differences and similarities
of the three counties and each event is tailored to its locale. The
uniqueness of each county is taken into consideration right down
to the ticket pricing — in one of the counties, there is no charge
for the dinner, but a “love offering” is taken at the door; in another,
Insights
patrons pay $7.50 per ticket; and for the semi-casual dinner, the cost
is $25 per ticket. The dinners are advertised in local newspapers and
tickets are sold at local bank locations. “It took a few years for these
dinners to ‘pick up steam.’ Now they are viewed by the community
as big social events that people add to their social calendars well in
advance,” Sandy says.
The dinners and silent auctions net about $70,000 each year. The
remainder of the program’s development dollars comes from local
foundations, individual donations and memorials. “We have been so
blessed. This is an agriculturally based area. Farm prices are down. But
the people find a way to support Hospice Services, Inc.”
Cross Timbers Hospice
Ardmore, OK:
Annual Luncheon is
‘Talk of the Town’
If there is a line of 650
people outside the
First Baptist Church of
Ardmore, Oklahoma,
it must be time for the
annual salad luncheon
benefiting Cross Timbers
Hospice. This annual
event, which nets about
$2,500, is the talk of
the town. Cross Timbers’
Community Services
Coordinator, Kim Turner, says the event wouldn’t be possible without
the support of all the area restaurants, church groups, and hospice
volunteers and staff who donate salads and desserts. The cost for
attending such a feast? “It’s all you can eat for $5.00,” said Kim. “We
have never increased our prices.” Generous at-the-door donations
help with the event’s success. “People will give the door volunteer a
$20 bill and tell us to keep the change.”
In addition to enjoying delicious salads, patrons attend the luncheon
each year to enjoy the beautiful table centerpieces. A very special
volunteer makes them and they are sold after the luncheon. That
volunteer is none other than Kim Turner’s mom. And to further
maximize the event’s moneymaking potential, Kim answered patrons’
requests for salad recipes by printing and selling a cookbook. The first
edition sold out quickly. Could a second edition be in the works?
continued on next page
Winter ‘05-‘06
40
FUNDRAISING AND FRIENDRAISING,
CONT’D...
Kim reports that the event becomes pretty labor-intensive about
three weeks prior. She sends flyers to people on the hospice’s
bereavement list and to contacts she has cultivated as well as
every church in the area. Local TV and radio stations run PSAs and
volunteers are out in force spreading the word.
Kim routinely hears three reasons why patrons attend the annual
luncheon: (1) people want to support Cross Timbers Hospice; (2)
people are curious about how the decorations and centerpieces will
carry out each year’s theme; and (3) people enjoy seeing each other.
Hospice of Amador
Jackson, CA:
Thrift Stores That Look Like ‘Real Stores’ and
Generate Big Dollars
Located in the foothills of the Sierras, Hospice of Amador is situated
within a population base of about 45,000. Executive Director Abigail
Gessler has been with this program for four years, but has many years
of experience operating hospice thrift stores — which she’s putting
to good use for Hospice of Amador. Her program has two stores that
earn about $187,000 annually. Six paid FTEs and 90 volunteers keep
the stores humming.
Abigail offers six reasons why thrift stores work:
1. People love to recycle and they know donating items to the
thrift store will help someone else;
2. People who can’t afford to purchase elsewhere can still have a
positive shopping experience;
3. The dollars received from the thrift store are unrestricted;
4. The stores are open seven days a week;
5. They create good will in the community;
6. They create another means for volunteers to become involved
with the hospice program (and volunteers make lasting
friendships by working the same shifts with each other).
She reports that less than 10% of the items donated come from
families of patients served by Hospice of Amador, proving her point
that thrift stores create good will in the community and give people
the satisfaction of knowing their donations help others.
Insights
Hospice of Amador takes great care to ensure that its thrift stores
utilize nice fixtures, and merchandise is displayed with style. One day,
a volunteer overheard a comment that let them know they achieved
this goal. A little boy, who seemed to have spent much time in thrift
stores said to his mom, “Thank you for bringing me to a real store.”
Hospice Care Corporation
North Central, WV:
Bingo, a Walkathon — and a ‘Jewelry Bash’!
Hospice Care Corporation serves eight counties in West Virginia
and four in rural Pennsylvania. Special events have become a way
to donors’ hearts. One of this program’s successful events can be
explained with five letters: B I N G O! That’s right, Hospice Bingo
occurs 10 times per year. Bingo enthusiasts pay a $20 entry fee,
which includes one bingo packet. Extra packets can be purchased for
$10. Each month, between 60 and 90 people participate.
Hospice Care Corporation also holds three golf tournaments a year,
each netting about $11,000. A ‘Walk for Hospice’ takes place in six
counties, and two 5-K races are held each year with about 80 runners
participating (including development director Kim Riley). One race is
held just prior to the Preston County Buckwheat Festival; that festival
also has a fundraising element for HCC. “Each year a gentleman loans
us his parking lot. Hospice volunteers park cars for festival attendees
and the parking fee goes directly to our program,” Kim says.
Another special event, the ‘Jewelry Bash,’ supports the program’s
children’s bereavement camp. Tickets cost $30 and every 10 minutes,
the name of a ticket holder is drawn. Each winner wins a piece of
jewelry. The last Jewelry Bash netted $5,000. And each October, a
local church produces a haunted house with proceeds — of between
$800 and $1,500 — benefiting the hospice.
So you see, there are many ways to raise funds in rural communities.
To do so takes knowing the community, the ability to think outside
the box, and staff and volunteers who are willing to go the extra mile.
Pam Brown is Vice President of Community Development at Alive
Hospice, Inc. in Nashville, Tennessee. She’s been with Alive for nine
years. She acheived her Certified Fund Raising Executive (CFRE)
certification in 2002.
Winter ‘05-‘06
ADVERTISEMENT
41
National Hospice and Palliative Care
Organization
NHPCO and Florida Hospices and Palliative Care, Inc. gratefully acknowledge
the following sponsors for their support of our 20th Annual Management and
Leadership Conference:
NHPCO Insurance for the Cyber Station
Robert Wood Johnson Foundation for the Caring Connections track
Hospice Pharmacia for the conference badges and lanyards
TowerCare Technologies for the hotel room keys
VITAS for the conference bags
Thank you!
Insights
Winter ‘05-‘06
42
SOOTHING THE JOURNEY:
THE UNIVERSAL POWER OF MUSIC
by Russell E. Hilliard, PhD, LCSW, MT-BC
Allied Therapist Section Member
Beatrice was a 94 year-old woman who had lived at home with
her husband for over 60 years. She was diagnosed with congestive
heart failure and had been admitted to the hospice program in her
local community. Although she had become increasingly weak,
suffered shortness of breath, and experienced dizzy spells, Beatrice
was cognitively alert, engaged in her family’s lives, able to attend
church occasionally, and enjoyed directing her home-health aide
in the kitchen. Because she had become increasingly sorrowful and
began to withdraw from others, the social worker referred the music
therapist to her in hopes of lifting her spirits and helping her cope
with her anticipatory grief.
During the assessment visit, the music therapist sang songs which
Beatrice and her husband, Frank, had requested. Frank requested
several songs that he dedicated to Beatrice as a sign of his love and
appreciation of her. The song that made her smile and laugh was Ain’t
She Sweet, and after the therapist and Frank sang it for her, the couple
reminisced about their early years of dating. While sharing memories,
their smiles were bright and laughter filled the room.
As part of the music therapy assessment, the therapist ascertains
the type of music the patient prefers, historical use of the music,
and identified care plan needs, along with goals and objectives. The
assessment concludes with recommendations for music therapy,
and the therapist contributes this information to the hospice’s
interdisciplinary care plan. For Beatrice, the identified care plan need
was anticipatory grief, and the therapist recommended weekly music
therapy sessions to help her and her family cope.
In subsequent music therapy sessions, Beatrice reviewed her life
experiences through the music. As she requested songs from various
decades, she shared her important life moments as they related
to the songs. During a visit when Frank was not present, Beatrice
requested What a Wonderful World. Although her affect was lifted
at the beginning of the song, by the end, she was tearful. When the
therapist inquired about the tears, Beatrice said, “What’s so wonderful
about the world?” Having been a social service worker, she had
witnessed intense hardships faced by others, and she shared many
of these experiences. She expressed feelings of becoming a burden
to her family, as her husband Frank was needed to stay home more
often in order to care for her.
Insights
The therapist validated her feelings of loss and frustration and invited
her to rewrite the song with her own views. Together, they wrote
about the things Beatrice had seen in her life and about how much
she feared her own demise. They wrote two verses when Beatrice
said, “This isn’t all there is; I’ve seen so many good things, too.”With
the therapist’s assistance, Beatrice wrote lyrics to a third verse about
the many blessings she had experienced in her life. At the end of
the session, Beatrice said she felt relieved at having expressed her
thoughts because she had been burdened with them for days.
Over the next two months, the music therapist visited Beatrice on a
weekly basis, and continued to use live music interventions to help
her and her family cope with the feelings of anticipatory grief and to
increase quality of life.
“The therapist validated
her feelings of loss and
frustration and invited her
to rewrite the song with
her own views.”
During the last music therapy session, the nurse paged the music
therapist for a visit because Beatrice had declined rapidly over the
weekend and was actively dying. When the music therapist arrived,
Frank was at Beatrice’s side. She appeared semi-comatose with
labored breathing and a tense affect. The music therapist began
singing some of Beatrice’s favorite songs. Matching the music to her
distress level, the therapist sang and played guitar accompaniment
somewhat loud and fast. Over time, the therapist slowed and
softened the music as she began to relax, and her breathing became
calm and less labored. Eventually, the therapist was able to slowly
and softly sing her favorite hymns, Just As I Am and Amazing Grace.
During these pieces, Frank joined the singing while holding Beatrice’s
hand and stroking her forehead. While the therapist played the guitar
while Frank sung, Beatrice died peacefully. With tears in his eyes,
Frank reached down to kiss his beloved goodbye. He looked at the
music therapist and softly whispered, “thank you.”
Music therapists treat a variety of care plan needs for hospice patients
and families. These include emotional needs such as anticipatory
grief, fear, denial, depression, anger, and anxiety; physical needs
such as pain, mobility, and shortness of breath; spiritual needs; and
social needs. They use a variety of techniques, including singing, song
writing, lyric analyses, and music-prompted reminiscence.
Winter ‘05-‘06
43
Research Confirms the Benefits of Music Therapy
Over the past few years, researchers have documented music
therapy’s effects on a variety of treatment needs for people with a
terminal illness in the empirical literature. In a randomized clinical
trial, music therapy significantly improved the quality of life for
home-care hospice patients diagnosed with terminal cancer (Hilliard,
2003). Single music therapy sessions have significantly decreased
anxiety, pain, and agitation among hospice patients (Krout, 2001).
The profession is moving toward an evidenced-based approach to
hospice and palliative care, with the efficacy of the intervention being
documented with increased frequency (Hilliard, 2005).
While the nation has seen an increase in the number of healers using
music as their modality,
the only credential in the
field is the Board Certified
Music Therapist (MT-BC).
The Certification Board for
Music Therapy (CBMT) is
the only organization to
certify music therapists
to practice music
therapy nationally. Since
1986, it has been fully
accredited by the National
Commission for Certifying
Agencies (NCCA).
Over 4,000 music
therapists have attained the MT-BC credential and now participate in
a program of recertification designed to maintain or increase initial
competence in the profession of music therapy. To become a Board
Certified Music Therapist, candidates must meet the educational
requirements established by the American Music Therapy Association
(AMTA). At a minimum, music therapists must complete a
baccalaureate degree or its equivalency in music therapy, a 1,040hour internship, pass the CBMT examination, and comply with
continuing music therapy education requirements.
The American Music Therapy Association (musictherapy.org or
301/589-3300) and the Certification Board for Music Therapists
(cbmt.org or 800/765-CBMT) provide assistance to those interested
in becoming a Board Certified Music Therapist (MT-BC). The
organizations also provide resources about music therapy and the
MT-BC credential.
Russell E. Hilliard, PhD, LCSW, MT-BC is an Assistant Professor in Music
Therapy at the State University of New York at New Paltz and the Music
Therapy and Social Work Coordinator at Hospice, Inc. He has a long
history of creating first-time music therapy programs throughout the
nation which has resulted in 20 new full-time music therapy positions.
References:
Hilliard, RE (2003). The
effects of music therapy
on the quality and length
of life of people diagnosed
with terminal cancer.
Journal of Music Therapy,
40(2) 113-37.
Krout, RE (2001).
The effects of singlesession music therapy
interventions on the
observed and selfreported levels of pain
control, physical comfort, and relaxation of hospice patients. American
Journal of Hospice and Palliative Care,18 383-90.
Hilliard, RE (2005). Music therapy in hospice and palliative care: a
review of the empirical data. Evidence-based Complementary and
Alternative Medicine, 2(2) 173-78.
Because music is a powerful medium and can elicit intense emotional
and physiological reactions, it is in the best interest of patients and
families that music therapy is administered by a highly qualified,
credentialed music therapist. The MT-BC credential ensures that the
clinician has met the established educational requirements and has
been tested to verify the safe, competent practice of music therapy.
Insights
Winter ‘05-‘06
44
IN THE FIRSTPERSON:
LISTSERVS — A BLESSING OF
MODERN TECHNOLOGY
By Patti Homan, PhD, LPC, FT
NCHPP Bereavement Professional Section Leader
I expect I was asked to write an article about the benefits of
participating on a listserv because bereavement professional section
members are known as a chatty bunch. However, rather than
speak for others, I posted the question on three listservs to which
I subscribe, asking: “How have the listservs been helpful to you?”
Below are excerpts from the many responses I received. And, as you
will see when reading them, many who benefit from the listserv are
seasoned hospice staff as well as people new to the field!
Donna Burgess, Grief and Volunteer Services Director,
Hospice of Central Iowa
An example of how the listserv has been helpful to me is when I
asked a question about the Vigil programs that other hospices have. I
received numerous responses, references, and Web sites to visit along
with program training to attend. The response was beyond what I had
ever imagined it being. I expected a few vague responses. Instead, I
got details and places to go to expand the search. I was grateful for
the information.
some days it’s as if y’all can read my mind. I can’t figure out what to
do for a memorial gathering, I open my email and voila...there is a
discussion going on about that very topic! I have a rough day with
a client and suddenly someone shares an uplifting story....Though I
have only met a few of the folks on the listserv, I feel I know them all.
Pam Brown, Vice President for Community Development
Alive Hospice, Inc. (TN)
I first began using the Development/PR/Marketing listserv this year.
Now I wonder what took me so long to join! The listserv is a fast and
easy way for me to communicate with other hospice professionals
working in the same disciplines. I appreciate it when others post
questions on the listserv. After all, we are all working on a united goal
— access to quality hospice care — and helping each other is the
right thing to do. As section leader for the Development/Marketing/
PR section, the listserv has also enabled me to publicize our newly
created online chats. I have to admit, I am now spoiled by this
technology!
Rex Allen, Grief Support Services Supervisor,
Providence Hospice of Seattle (WA)
I have watched and used the listserv for some time now. It is
like having an ongoing networking session. I have asked several
questions myself, including the process hospices use to evaluate the
executive director. I find that solutions offered are often based on
size, so you hear what works for small hospices and larger ones. I also
think there is value in seeing that other hospices are struggling with
similar issues.
The listserv has offered me the opportunity to access the collective
wisdom of hospice professionals across the country on every level
of need including humor! Often the perspective offered by others
illuminates any given question in such a way as to bring about a
totally new understanding of the issue at hand. The various cultures
of differing hospices also help me to better understand the culture
of my own and help give context to the challenges of a bereavement
program. The listserv also continues to challenge me to rethink
and to relearn how to do this work. While conversations with local
professionals are always helpful, it is far too easy to become isolated
in my thinking and standard of practice. The listserv helps challenge
me to continually set the standard high and, as a consequence, the
growth that results is always rich with the wisdom of the many and
not the few.
Chris Foley, Director of Full Circle,
Hospice of Savannah, Inc. (GA)
Donna Rodriguez, Bereavement Coordinator,
Hospice of South Texas
I’m not sure I could do my job effectively without the listerv. Without
it, I would have wasted hours recreating the wheel. I have found
valuable expertise in bereavement, support from people doing this
work, and unlimited resources. I don’t know if others find this, but
We have learned so much about grief, loss and life by being a
part of the listserv. Not only have we gotten lots of new ideas and
confirmation that what we are doing seems to be the norm, we have
been inspired, energized and enlightened.
Margaret Cogswell, Executive Director,
Hospice of the Panhandle, Inc. (FL)
Insights
continued on page 46
Winter ‘05-‘06
45
45
Listservs – An Easy Way to Network With Colleagues
How to Sign Up:
As Patti notes in her article, think of a listserv as a network of people who share your interests and to whom you can turn for answers, perspectives, ideas,
problem solving and support. Consider them your “list friends.”
There is a listserv for each of NCHPP’s 15 sections, as well as “specialty” listservs like “rural hospices.” Below is the complete list. To sign up for one or more,
visit www.nhpco.org/listserv (and have your member I.D. and password handy).
•
•
•
•
•
•
•
•
•
•
•
Administrators
CEO-Executive Director
Finance and Information Technology
Pharmacist
Social Worker
Allied-Therapists
Certified Nursing Assistants
Physicians
Spiritual Caregivers
Bereavement
Development
•
•
•
•
•
•
•
•
•
•
Nurses
Research-Academics
Performance Improvement, Quality Assurance
Volunteers
Rural Hospices
State Coalitions
Community Coalitions
Urban Issues
Veterans Issues
Correctional Facilities
How to Use Them:
After you sign up (or join) the listserv, you simply submit a question (via email) that you want to pose to members of that listserv. Your submission is
automatically distributed to all of the other people on the listserv. Here is one example of a question posed on the rural listserv recently:
“We are a small (8-12) nonprofit stand-alone hospice serving a large rural demographic area. Over the last 10 years, many of our patients
have resided 60 or 100 miles one way from where our program is based. I would like to talk to others who have encountered similar
situations regarding staffing numbers, policy and procedure manuals and other related topics.”
Colleagues on the rural listserv will then respond, providing answers and tips to assist you. If you have specific questions, contact Scott Vickers, NHPCO’s
Manager of Consumer and Professional Services, at [email protected].
Insights
Winter ‘05-‘06
46
LISTSERVS, CONT’D...
The biggest benefit was that by the time I arrived at the national
convention, I recognized many of the names of people who would be
speaking from the listserv. And having enjoyed email dialogue with
them, knew which speakers would address my specific interests.
Sr. Elizabeth Worley, President and CEO,
Catholic Hospice (FL)
Mellissa Auer, Volunteer Manager,
Hospice of Northeastern Illinois
I have found the listserv very helpful in sharing stats that can be used
in implementing benchmarking. I have also found it very helpful in
getting tips for new programs, finding new ideas for training, and
to hash out rules and regulations. When we wanted to start a vigil
program, massage therapy, and pet therapy, I was able to get some
great ideas — things to avoid, helpful hints, etc. I like being able to
communicate with others doing the same job, as it is in many ways
unique, not like managing other kinds of volunteers.
I am viewing much on the conversation on the listserv only because
one of our executives resigned and I have had his mail forwarded so we
would not lose track of anything. I find the conversations very enriching,
serving as a source of examples of multiple approaches to challenges
shared with the group, and as an excellent source of benchmarking data
— such as on staffing patterns. Information about successful programs,
data and very good responses to questions posed are shared freely for the
benefit of the group....
Patti’s Tips on Using
the Listserv:
Jeremy Lees, Spiritual/Bereavement Counselor,
Hospice of New Jersey
I am a big believer in listservs. They are invaluable for sharing ideas,
getting feedback, and providing support. It can be so helpful to throw
a concern or issue out there and see what other hospices are doing
and what they’ve tried.
Deborah Andrews, Medical Social Worker,
Odyssey HealthCare (AZ)
The bereavement listserv has become a wonderful resource for me.
I have been in the hospice field for 16+ years. The listserv gives me
validation, support, humor, creative ideas, and info that jumpstarts
me to create and update the work I do.... The listserv serves as a
vehicle to share information and encourage all of us to be the best at
what we are doing — caring for the dying and their families.
Mary Paulauskis Johnson, Associate Director Psych/Social/
Spiritual Services, Hospicecare Inc. (WI)
As a new manager of bereavement services, through listservs I
have learned about (1) bereavement department memorial events
— how often, what methods, results; (2) how programs are
physically situated; (3) how programs do their work; (4) caseloads,
support groups offered; and (5) resources, new books, etc.
Insights
For anyone planning to join a listserv, I offer
three specific suggestions:
1. You will rarely get any responses if you request copies of
forms, policies, or procedures. Most agencies don’t share this
information. Instead, think about what you are seeking, and raise
questions about content and process rather than the actual copy
of a form or policy. You’re much more likely to receive a variety of
responses, and you can, in turn, use the information offered to
create your own form, policy, or procedure.
2. Keep in mind that listservs cannot address prices charged or
costs incurred for hospice services; they cannot promote certain
products or services or address any other competitively sensitive
information due to federal and state anti-trust laws.
3. Realizing that your listserv posting will be read by literally
hundreds of others, Jeremy Lees, Spiritual/Bereavement Counselor
at Hospice of New Jersey, suggests printing out your question
and reading it before you post it on the listserv. “I know whenever
I have done this,” he says, “I inevitably make changes and am
relieved I took the time to read and revise what I’ve written before
sending it!”
— Patti Homan
Winter ‘05-‘06
47
ADDITIONAL INSIGHT INTO ISSUES OF PREPAREDNESS
The following letter to the editor was submitted to “Insights” in response to
the most recent edition. It provides further understanding into an important
aspect of crisis preparation and management. We would like to share this
with NewsLine/Insights readers.
The article, “Amidst Hurricanes, Blackouts, and Floods...How Prepared is Your Hospice?” that
appeared in the Fall 2005 issue of Insights is an informative article that merited reprinting.
Originally published in 2003, it reminds us how vulnerable we are as patients, caregivers
and suppliers to disruptions in our daily lives and being severed from life’s necessities. Its
messages were underscored once again this year by Katrina, Rita, Ophelia, and Wilma.
While a solid preparation plan is key to saving time and focusing efforts and resources
before a disaster strikes, the article concludes with a well placed message that “the final
lesson learned is to always debrief shortly after the crisis is over.” At Hospice Pharmacia, we
routinely debrief after each business interruption event and thought it would be of interest
to NewsLine/Insights readers to learn how disaster planning and recovery is managed at the
nation’s leading hospice pharmacy provider.
Our business is medication management — we work with caregivers to determine the most appropriate medication for the patient, then we provide it for nearly
52,000 patients nationally.
Early in 2001, HP formalized and tested a comprehensive “business interruption plan” that encompassed every department in the company. Each year the
company takes one weekend to close all systems, test, and recover to demonstrate the appropriateness of the plan. The plan itself, managed by the performance
improvement office and information technology group, covers unexpected occurrences from hurricanes, blackouts, air strikes and other natural disasters.
During the attacks of September 11, 2001, the HP team was able to work quickly to establish a command center and plan alternative methods for medication
access before many hospice agencies across the country even knew what had happened.
When Wilma hit the southern part of Florida in October 2005, local access to medications was limited due to the power outage. We received a call from the
nation’s largest hospice provider to support them during this time of crisis. Within hours, HP’s services were made available to over 2,500 hospice patients that
needed medication delivered to their homes. These were hospice patients that we had not served before.
As part of our follow-up efforts after the recent hurricane disasters, HP hosted disaster debriefing conference calls with partnering hospices. One of the topics
discussed is the development of a Disaster Planning and Recovery Manual comprised of lessons learned from hospice organizations across the country. The
manual will provide data collection sheets and serve as a single resource for key contact information and planning processes. NewsLine/Insights readers are
welcome to contribute to the development of this Disaster Response Manual.
HP’s goal is to encourage and work with each client to develop their own Business Interruption Plan that includes medication access. Much has changed since
2003 when the original article was written. HP has helped clients to manage through four major hurricanes this year alone. Each year, we have more experience
to improve performance for future patients, caregivers and hospice providers.
Stephanie A. Zarus, PharmD
Chief Performance Officer
Hospice Pharmacia
215/282-1609
[email protected]