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Resources
for
long term care administrators
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Palliative care opportunities in the LTC setting
Even though 66% of Nebraskans
report a preference to die at home, 10% prefer a facility
of some kind (hospital, nursing home or assisted living)
and 18% report no preference regarding location. These statistics
present quite an opportunity for Nebraska nursing homes to counteract the stigma
attached to long term care and position themselves as a viable, perhaps even
preferable solution to difficult family circumstances.
The fact is that one in
four Americans die in a nursing home and one in two will spend some time in a
nursing facility in the last month of their lives. Nursing homes play an important
role in end of life care. And, as demonstrated in the story,
facility policies have a profound impact on the quality of
the family’s life together as they proceed through
this last chapter of a relative’s journey.
For instance,
when asked about end of life priorities, 86% of Nebraskans
rated “having things settled with family” as
very important. Similarly, 83% of the population ranks “not
being a burden” as very important. As institutions,
we have the opportunity to create family-friendly programs
and policies which make that difficult end of life period
a time of closeness and bonding. By removing the burdens
of care and creating a supportive environment, we can liberate
the family to concentrate on their relationships, resolving
their issues and saying the all too important “Thank
you,” “I love you, “ “I forgive you,” and “Good-bye.”
Beyond
family-friendly policies, how can we change community perceptions
of nursing homes as less than desirable alternatives? Given
reimbursement constraints, the strict regulation of long
term care facilities, and high staff turnover, institutional
change is challenging. But the team-based, patient-centered
focus of palliative care offers many options. Parameters
for success are defined by patients and families. Often they
are remarkably simple to achieve. And the interdisciplinary
focus of palliative care allows the burdens to be shared. Over
the last few years, many very practical programs have been
developed as nursing homes seek affordable ways to integrate
palliative care into their daily workflow.
On the modest side,
for instance, facilities have been able to increase family
satisfaction and help staff to cope with loss, by sending
sympathy cards to the survivors, or making a memory box in
honor of the patient. More ambitiously, some long term care
facilities have begun to branch out and work with allied
health professionals to improve care and community perception.
For instance, eighty-one percent of Nebraskans fear dying
in pain and 37% of Nebraska nursing home residents report
persistent, unresolved pain.
Innovative programs, however,
are being piloted throughout the country to improve pain
management in long term care. Innovative programs, however,
are being piloted throughout the country to improve pain
management in long term care. Many nursing facilities
are implementing pain management and palliative care teams
to improve outcomes related to unresolved pain. Nursing
home residents and their families are increasingly choosing
to supplement nursing home care with hospice benefits, to
aggressively address pain and symptom management as the end
of life draws near.
Below we have listed many articles and
organizations that are committed to helping nursing homes
come up with financially viable initiatives that can improve
quality of life for patients, families and staff. If you
have further questions, or would like to brainstorm on ways
to intregrate palliative care into local offerings, please
contact the Grand Island Coalition for End of Life Care at
308-398-5485 or e-mail us at info@respectmywishes.org. (Return
to List)
Resources |
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Innovative Programs
- Bedside
Vigils, Remembrance Boxes, Sympathy Cards: Practices
that Support Families and Staff. Easy to
implement touches that help families and staff
cope with grief and loss.
- A
Nurse Practitioner Palliative Care Consult Service
For Nursing Homes: An Interview with
Therese Rochon, RNP, MA, MSN
- Integrating
Palliative Care into Nursing Homes:
An Interview with Howard Tuch, MDand Pamela
Parrish, RN, BA, CHPN. Addressing advance
care planning, pain and symptom management
and the psychosocial/spiritual issues of
patients and families.
- Promoting
Excellence in End of Life Care. Robert
Wood Johnson funded research on 39 demonstration
programs throughout the country. Go to this
website and use the search function to find
articles about projects related to long term
care facilities.
- On the Road from
Theory to Practice. An online publication
of Last Acts, a national campaign to improve
end of life care. Search this collection of programs
to find suggestions related to the institutional
setting.
(Return to List)
Training Materials, Tools and Other Resources
- George Washington University. Long known for
its pioneering work in end of life care, George Washington
University is now offering a post graduate certificate,
or a Masters of Science degree in Clinical Leadership
with an end of life specialty. Class are completed
online so busy professionals can continue working
while they complete their advanced education.
- Sunset
Program (Series to Understand, Nurture
and Support End-of-Life Transitions) is offered by
the Hospice Foundation of America in conjunction
with Ohio State University. This distance learning
opportunity has been approved by the National Association
of Boards of Examiners for Nursing Home Administrators.
Modules include communicating bad news, pain management,
cultural competence, decision-making, dementia, ethics,
grief and loss, spirituality, and families and end
of life care.
- New
Models - New Markets. Earn CEU and CME
credits with this CD of the Promoting Excellence
in End-of-Life Care presentation exploring successful
approaches and replicable models for improved delivery
of care. Find this and other educational opportunities
in the Marketplace and Education sections of the NHPCO
website (National Hospice and Palliative
Care Organization).
- Palliative
Care in Nursing Homes: Steps for Success.
Published by the Schervier Nursing Care Center
(part of Bon Secours New York Health System,
Inc.), this guidebook is designed to help
provide long-term care professionals with
a better understanding of the status of palliative
care, the components of a palliative care
program, and what needs to be considered
when developing or expanding quality palliative
care services in a nursing home setting.
- Improving Nursing Home Care of the Dying: A Training
Manual for the Nursing Home Staff. Henderson
ML, Min, Hanson LC, Reynolds KS. Springer
Publishing Company, May 2003. This book examines
eight topics in end-of-life and palliative care in
a long-term care setting. Topics include: recognizing
the final phases of life, grief and loss, advance
care planning, choices about eating and drinking,
pain management, emotional and spiritual care, and
caring for the caregivers. Chapters contain learning
exercises, clinical cases to facilitate group discussion,
and useful appendices.
- Hospice
in a Skilled Nursing Facility - a Model for Success.
Developed by the Colorado Department of
Public Health & Environment this guide
includes tools and charts to assist skilled
nursing facility and hospice care providers
in their partnership by setting forth the
responsibilities of the two providers.
- Tools
from Promoting Excellence in End of Life
Care.
This webpage provides downladable tools from
these innovative demonstration projects.
Some tools that may be relevant to long term
care include:
- Attitudes Toward Death Survey
- Family Palliative Care Quality Survey A & B
- Identification of a Palliative Care Customer
- MDS Trigger Guide for Palliative Care
- Pain Assessment Tool, Palliative Care Worksheet
- Physical/Emotional Symptom Tracking Form
- Advance Illness
Nurse Practitioner Service. This
is a consulting and management group affiliated
with Dr. Dan Tobin, pioneer of the Advanced
Illness Care Coordination Model. AIP’s
goal is to improve long-term care by incorporating
specially trained nurse practitioners working
in a fee-for-service model that are employed
by facilities. This innovative model provides
turn-key, outcomes-based and sustainable
clinical and operational programs. The
Grand Island Coalition for End of Life
Care does not specifically endorse this
service, but includes them as a sample
resource of the kinds of programs and services
now becoming available.
- Frontline
Publishing. Frontline Publishing
develops training materials that focus on
the personal and professional development
of frontline health care workers, including
nurses and nursing assistants working in
long term care facilities. They also have
self-study booklets with CME units available
to nurses and administrators.
- Care of the dying in long-term care settings.
Hanson LC, Henderson M. Clinics in Geriatric Medicine. 2000;16(2):225-237.
(Return to List)
Hospice/LTC Partnerships
- Miller SC, Mor VNT. The role of hospice care in
the nursing home setting. Journal of Palliative
Medicine. 2002;5(2):271-277.
- Zerzan J, Stearns S, Hanson L. Access to palliative
care and hospice in nursing homes. Journal of
the American Medical Association. 2000;284(19):2489-2494.
(Return to List)
Ethics and Advance Care Planning
Pain Management
- Teno JM, Weitzen S, Wetle T, Mor V. Persistent
pain in nursing home residents. Journal of the American
Medical Association. 2001;285(16):2081.
- Strumpf NE. Improving care for the frail elderly: The
challenge for nursing. Journal of Gerontological Nursing. 2000;26(7):36-44.
(Return to List)
Administrative articles
- State Inititatives in End of Life Care, 1999-2000
- Promising
educational initiatives for staff, regulators, and families.
- How regional
long-term care ethics committees improve end-of-life care.
- Facts and controversies
about nursing home reimbursement.
- Developing quality
indicators for end-of-life care in nursing homes.
- Improving Care for the End of Life: A sourcebook for health
care manager and clinicians. Developed by Dr. Joanne Lynn
of the Center for Palliative Care Studies, this
book is fully downloadable from the Internet. It
covers a range of topics for setting up a palliative care program,
including interventions that address physical, emotional and spiritual
concerns at the end of life.
- Katz JS, Sidell M, Komaromy C. Dying in long-term care facilities:
Support needs of other residents, relatives, and staff. American
Journal of Hospice & Palliative Care. 2001;18(5):321-326.
- Lawhorne LW. End-of-life care in the nursing home—is a good
death compatible with regulatory compliance? Bioethics Forum. 1999;15(3):23-28.
- Lazer D, Schwartz-Cassell TL. Adding Value to Long-Term Care:
An Administrator's Guide to Improving Staff Performance, Patient
Experience, and Financial Health. San Francisco: Jossey-Bass,
2000.
- Froggatt, KA. Palliative care and nursing homes: Where next? Palliative
Medicine. 2001;15(1):42-48.
- Hanson LC. Creating Excellent Palliative Care in Nursing Homes. Journal
of Palliative Medicine 2003; Vol. 6 Number 1.
- Teno JM. Now is the Time to Embrace Nursing Homes as a Place of Care
for Dying Persons. Journal of Palliative Medicine 2003;
6:293-296.
(Return to List)
Bibliographies
- Palliative
Care Education Resource Team Bibliography developed
by Washington State as they recognized that 1/3 of Washingtonians
dying of chronic illness were dying in nursing homes. Topics
include:
- Advance Directives and Medical Decision Making (including tube feeding, dementia
and establishing capacity)
- Hospice and the Nursing Home
- Pain (including pain in the cognitively impaired)
- The Role of the Nursing Assistant
- Culture and the End of Life
- Spirituality and the End of Life
- Symptom Management
- Ethics and the End of Life
- General End-of-life Resources
- Communication at the End of Life
- Grief and Bereavement
- Quality of Life and Quality Improvement
- Center for the Advancement
of Palliative Care (CAPC) This Robert Wood Johnson
initiative is dedicated to assisting hospitals
and other health care institutions in setting up palliative
care programs. Although the emphasis is on hospital
based systems, they do have an extensive resource
list for long term care facilities including
- Articles
- Books
- Research References
- Presentations
- Toolkits
- Training
- Long-Term Care Models
- Organizations
(Return to List)
Policy Papers
- Precepts
of Palliative Care. This two page summary was
assembled by Last Acts, a Robert Wood Johnson campaign
to improve end of life care through a coalition of professional
and consumer organizations. The document addresses issues
around patient goals, preferences and choices; comprehensive
caring; using interdisciplinary resources; the needs
and concerns of caregivers; and systemwide mechanisms
of support.
- Clinical
Practice Guidelines for Quality Palliative Care.
Download the 65 page booklet created by the National
Consensus Project for Quality Palliative Care, an interdisciplinary
consortium comprised of a representatives from a wide
range of professions and settings. Guidelines address
8 domains: structure and processes; physical aspects
of care; psychological and psychiatric aspects; social
aspects; spiritual/religious/existential aspects; cultural
aspects; ethical legal aspects; and care of the
imminently dying patient.
(Return to List)
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Please Note: Grand Island Coalition for End
of Life Care does not specifically endorse these
resources, but offers them as a sample of the kinds
of materials and services that are available.
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This website was created by the Grand
Island Coalition for End of Life Care, a community organization dedicated
to improving end of life care through education, advocacy and support. We
gratefully acknowledge the generosity of KDSI for
their donation of webhosting services. Site design and layout created by Let's
Collaborate! |
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