December NewsLine 2 - National Hospice and · PDF filePatti Homan, PhD, LPC, CT Hospice of...

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December 2005

9

NewsLine

Issue Four, W

inter ‘05-06

Rural IssuesPerspectives From Those Providing Care

A Family’s Perspective

Management

Care Delivery

Community as a Resource

More...

CHAIRBob Miller, BA, MDiv

VITAS Healthcare CorporationMiami, FL

IMMEDIATE PAST-CHAIRBarbara Bouton, MA, CT

Bridges Center, Alliance of Community HospicesLouisville, KY

ADMINISTRATOREric M. Storch, PsyD

Catholic HospiceMiami, FL

ALLIED THERAPISTRichard Briggs, MA, PT

Enloe HospiceChico, CA

BEREAVEMENT PROFESSIONALPatti Homan, PhD, LPC, CT

Hospice of Lancaster CountyLancaster, PA

CEO/EXECUTIVE DIRECTOR/PRESIDENTSamira K. Beckwith, CHE

Hope Hospice and Palliative CareFort Myers, FL

CNA Cassandra Cotton, CNA

Nathan Adelson HospiceLas Vegas, NV

DEVELOPMENT/PUBLIC RELATIONS/MARKETINGPam Brown, CFREAlive Hospice, Inc.

Nashville, TN

FINANCE/INFORMATION SYSTEMSJill Lampley, MBA, SPHR

Hope Hospice and Palliative CareFort Myers, FL

NURSEPat Gibbons, BSN, CHPN

Beacon Place/Hospice and Palliative Care of Greensboro

Greensboro, NC

PERFORMANCE IMPROVEMENT/QUALITY ASSUR-ANCE

Vice-ChairShareefah Sabur, MNO

Hospice of the Western Reserve, Inc.Cleveland, OH

PHARMACISTPhyllis Grauer, RPh, PharmD

Palliative Care Consulting GroupDublin, OH

PHYSICIANJoan Harrold

Hospice of Lancaster CountyLancaster, PA

RESEARCH/ACADEMICS/EDUCATION Joy Berger, DMA, MT-BC, BCC

Hospice Institute, Alliances of Community HospicesLouisville, KY

SOCIAL WORKERGary Gardia, MEd, LCSW

Saint George, UT

SPIRITUAL CAREGIVERR. Bradley DeFord, MDiv, PhD

Torrance Memorial Home Health & HospiceTorrance, CA

VOLUNTEER/VOLUNTEER MANAGEMENTKathy Roble, MS

The Hospice of the Florida SuncoastLargo, FL

NATIONAL COUNCIL OF HOSPICE AND PALLIATIVE PROFESSIONALS (NCHPP)2005 SECTION LEADERS

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 — ManagementDelivering Hospice and Palliative Care in a Rural Setting:A CEO Shares Her Thoughts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 20Staffing Challenges and Rewards . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 24

Section Three — Care DeliveryTwo Approaches to Bereavement Support:

The Unique Nature of Bereavement Groups in Rural America . . . . . . . . . . . . . . . . . p. 26Grief Work at the Kitchen Table... and Other Places of Comfort . . . . . . . . . . . . . . . . p. 27

From the Clergy’s Perspective: ‘Doin’ Good in the ‘Hood’ . . . . . . . . . . . . . . . . . . . . . . . . . p. 28Accessing Rural-Community Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 30A Day in the Life of a Rural-Hospice Nurse . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 36

Section Four —Community as a ResourceRural Hospice Volunteer Programs:“Big Hearts and Boston Butt Fundraisers” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 38Fundraising and FRIENDraising Success Stories . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 39

Plus Soothing the Journey: The Universal Power of Music Therapy . . . . . . . . . . . . . . . . . . . . p. 42In the Firstperson: Listservs — A Blessing of Modern Technology . . . . . . . . . . . . . . . . p. 44Additional Insight into Issues of Preparedness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . p. 47

Issue Four Winter 2005/2006

Insights

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Insights Winter ‘05-‘06

Working Wonders

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in Rural America

Most 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.

Working Wonders

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A FAMILY’S PERSPECTIVE: SAYING GOODBYE TO DAD

Excerpt from The Hospice ChoiceBy 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

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

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.

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

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.

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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.

Final Gifts — a moving and compassionate book on the experience of dying. Notes on Symptom Control in Hospice & Palliative Care — an excellent resource on successfully manag-ing symptom control.The Four Things that Matter Most — discusses the capacity for interpersonal healing and wholeness even in the face of death.Hospice Operations Manual: Resources for Managing a Hospice Program of Care — a must-have resource for hospice managers and administrators.It’s About How You LIVE Awareness Bracelet — demonstrate your passion What is Hospice? (You Matter to the Last Moment of Your Life) — provides facts about hospice and the hospice philosophy.2005 Hospice/Palliative Care Month Key Chains — displays the hospice quilt Hospice Care: A Physicians Guide — a guide that helps physicians understand their role in hospice care.One Patient, One Day — 15 growth imperatives for growing your hospice one patient, one day at a time.Palliative Care Pocket Consultant — a reference guide for symptom management in palliative care.

1.2.

3.

4.

5.6.

7.8.

9.

10.

To place an order, visit nhpco.org/marketplace or call 800/646-6460.

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NHPCO’s 2006 Audio Web SeminarsJoin us in 2005 as NHPCO’s Audio Web Seminars offer 24 of the hottesttopics in end-of-life care. This year long educational exchange uses theinnovations of today’s technology to bring together the end-of-lifecommunity. Your participation ensures you remain connected and on thepulse of change in hospice and palliative care.

Connect now! We offer the standard audio seminar, and interactive webseminars that feature live online PowerPoint presentations, instantmessaging with conference attendees, live online question and answerperiods, and interactive follow-up with presenters. Audio Web Seminars thatfocus on Interdisciplinary Team Topics are held on the second Thursday ofthe month and Leadership and Management Topics are held on the fourthTuesday of the month. All Audio Web Seminars take place from 2-3:30pm ET.(Schedules are adjusted when holidays conflict with these dates.)

Start saving now with Special Annual Package Deals! This offer is good until January 1, 2006.

Register now and pay the full price later! Send in your registration form along with a $100 depositby January 1, 2006 and we’ll invoice you for the balance by January 16, 2006.

Most seminars will offer Continuing Education Credits for Nurses, Physicians and Social Workers!

Learn more at

www.nhpco.org/aws2006or call

800/646-6460

� BEST VALUE! ALL 24 Audio Web Seminars (two per month) BOTH Web-based andAudio + 36 Nursing CEU vouchers (worth $10 each — a $360 value!) for $2,249. Vouchers may

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� 24 Audio Seminars (No Web-based component) for $1,599 Attend all 24 audio seminars that run 2 times a month.

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New Resource for Pain Management Professionals

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NHPCO’s 2006 Audio Web SeminarsJoin us in 2005 as NHPCO’s Audio Web Seminars offer 24 of the hottesttopics in end-of-life care. This year long educational exchange uses theinnovations of today’s technology to bring together the end-of-lifecommunity. Your participation ensures you remain connected and on thepulse of change in hospice and palliative care.

Connect now! We offer the standard audio seminar, and interactive webseminars that feature live online PowerPoint presentations, instantmessaging with conference attendees, live online question and answerperiods, and interactive follow-up with presenters. Audio Web Seminars thatfocus on Interdisciplinary Team Topics are held on the second Thursday ofthe month and Leadership and Management Topics are held on the fourthTuesday of the month. All Audio Web Seminars take place from 2-3:30pm ET.(Schedules are adjusted when holidays conflict with these dates.)

Start saving now with Special Annual Package Deals! This offer is good until January 1, 2006.

Register now and pay the full price later! Send in your registration form along with a $100 depositby January 1, 2006 and we’ll invoice you for the balance by January 16, 2006.

Most seminars will offer Continuing Education Credits for Nurses, Physicians and Social Workers!

Learn more at

www.nhpco.org/aws2006or call

800/646-6460

� BEST VALUE! ALL 24 Audio Web Seminars (two per month) BOTH Web-based andAudio + 36 Nursing CEU vouchers (worth $10 each — a $360 value!) for $2,249. Vouchers may

only be used for Nursing CEU requests, each CEU voucher will have a serial number and can only be used one time.

� 24 Audio Seminars (No Web-based component) for $1,599 Attend all 24 audio seminars that run 2 times a month.

� 12 Audio Web Seminars for $1,249Purchase one track of Web seminars (Leadership and Managementtracks or Interdisciplinary Team track — no substitutions will be made).

� 12 Audio Seminars (No Web-based components) for $899Purchase one track of audio seminars (Leadership and Management tracksor Interdisciplinary Team tracks — no substitutions will be made).

Register now

and get the best rate!

Sign up for the “BEST VALUE!”

package by January 1st

and SAVE BIG!

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2020


DELIVERING HOSPICE AND PALLIATIVE CARE IN A RURAL SETTING:

A CEO SHARES HER THOUGHTSBy 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 on-service 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

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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.

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

“CEOs care about people and providing quality

service — help them to see the heart of hospice

and palliative care.”

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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-of-life 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.

The focus group meetings were wonderful opportuni-ties 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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staff expressed discomfort in talking with patients and families without scripting or cues to assist them; andstaff 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

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

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continued on next page

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, home-health 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.

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.

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

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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 community-based 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.

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.”

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“The data spoke volumes — and plans were made

to further expand the community-based case management program.”

A CEO’S THOUGHTS, CONT’D...

“...we believe we can reduce the number of

emergency room visits and inpatient admissions... with community-based

support.”

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PALLIATIVE CARE IN RURAL SETTINGS: STAFFING

CHALLENGES AND SOLUTIONSBy 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.

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

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.

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Retention — Very Closely Linked to Recruitment

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.)

Assure That the Workplace is a Positive Place

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-

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purchase discounts and a bottomless coffeepot are important and simple ways to show staff that they’re valued.

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.

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On balance, I think the reasons for attending to issues of staff well-being 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.

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.

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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, CTwith 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.

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.

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

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“The sadness that descends on the group as

they hear again and again about the loss of their

friends and neighbors is palpable....”

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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, FTNCHPP 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.”


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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.

“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.

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, BCCNCHPP Spiritual Caregiver Section Leader

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!

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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; none-theless, 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 distinc-tion 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,

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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

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.

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 AREASby Suzanne Y. Bushfield, Ph.D., LCSW

and Margie Rodriguez Le Sage, Ph.D., LMSWNCHPP 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.

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FROM THE CLERGY’S PERSPECTIVE, CONT’D...

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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 lived-experience 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-

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 end-of-life practice — spanning over 25 years and based on hospice and other palliative care models — has been in the context of marginalized rural communities.

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ACCESSING COMMUNITY RESOURCES, CONT’D...

A DAY IN THE LIFE OF A RURAL-HOSPICE NURSE

By Caroyn Nystrom, RNHospice 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 pick-up 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.

Early Afternoon

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

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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.

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-

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.

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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, God-fearing 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.

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.

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FUNDRAISING AND FRIENDRAISING SUCCESS STORIES

By Pam Brown, CHFRNCHPP 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,

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 HospiceArdmore, 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?


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Insights Winter ‘05-‘06Insights Winter ‘05-‘06

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 AmadorJackson, 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:

People love to recycle and they know donating items to the thrift store will help someone else;People who can’t afford to purchase elsewhere can still have a positive shopping experience;The dollars received from the thrift store are unrestricted;The stores are open seven days a week;They create good will in the community;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.

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3.4.5.6.

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 CorporationNorth 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.

FUNDRAISING AND FRIENDRAISING, CONT’D...

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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!

National Hospice and Palliative CareOrganization

ADV

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ISEM

ENT

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.

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.

SOOTHING THE JOURNEY:THE UNIVERSAL POWER OF MUSIC

by Russell E. Hilliard, PhD, LCSW, MT-BCAllied 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.

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“The therapist validated her feelings of loss and

frustration and invited her to rewrite the song with

her own views.”

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 1,040-hour internship, pass the CBMT examination, and comply with continuing music therapy education requirements.

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.

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 single-session music therapy interventions on the observed and self-reported 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.

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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 DevelopmentAlive 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)

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.

Donna Rodriguez, Bereavement Coordinator,Hospice of South Texas

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.

IN THE FIRSTPERSON:LISTSERVS — A BLESSING OF

MODERN TECHNOLOGYBy 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.

Margaret Cogswell, Executive Director,Hospice of the Panhandle, Inc. (FL)

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.

Chris Foley, Director of Full Circle,Hospice of Savannah, Inc. (GA)

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

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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).

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].

AdministratorsCEO-Executive DirectorFinance and Information TechnologyPharmacistSocial WorkerAllied-TherapistsCertified Nursing AssistantsPhysiciansSpiritual CaregiversBereavementDevelopment

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NursesResearch-AcademicsPerformance Improvement, Quality AssuranceVolunteersRural HospicesState CoalitionsCommunity CoalitionsUrban IssuesVeterans IssuesCorrectional Facilities

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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.

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.

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LISTSERVS, CONT’D...

Patti’s Tips on Using the Listserv:

For anyone planning to join a listserv, I offer three specific suggestions:

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. 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.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

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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)

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....

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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, PharmDChief Performance Officer

Hospice Pharmacia215/282-1609

[email protected]

ADDITIONAL INSIGHT INTO ISSUES OF PREPAREDNESS

December NewsLine 2 - National Hospice and · PDF filePatti Homan, PhD, LPC, CT Hospice of...

Documents

Transcript of December NewsLine 2 - National Hospice and · PDF filePatti Homan, PhD, LPC, CT Hospice of...