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Supporting families at the end of life
Although 96% of Nebraskans
want to die at home, 2/3 die in a hospital or nursing
home. Hospice provides instrumental, medical, emotional
and spiritual support so patients can die at home, but
only 1/3 of Nebraskans die using this service. Why so
few? There are many reasons, but it appears that lack
of knowledge about hospice is one of them. In our
2004 statewide survey, half the respondents said
they knew little or nothing about hospice. Sixty-two
percent did not know it was a covered benefit under Medicare.
From the statistics, it appears that hospice does is not
reaching all those who need it. And even among those who
register with hospice, 1/3 die within a week, having received
7 days or less of service. The end of life is a difficult
time. Families need support to process all the changes and
to get their affairs in order. National organizations suggest
that patients and families have hospice support for at least
60 days in order to receive optimal benefit. With so
many receiving 7 days or less of care, it indicates that
families are in crisis mode, unnecessarily handling very
stressful situations by themselves when full support
is available.
It is our hope, as palliative care becomes an
integral part of treating the seriously ill, that social
workers as members of the interdisciplinary team will be
able to educate families about the benefits of hospice and
help patients clarify their wishes regarding care.
To that end, we have included on this page general information on social work
and palliative care. We also offer resources for continuing
education in the field, and information on psychosocial
issues, advance care planning, economic forces, cultural
competence, and innovative programs being developed throughout
the country. You might also be interested in checking
out the resources for clergy to learn more about spiritual
concerns, and resources for families to find websites
and materials that may be helpful for your clients. Of
course the educational articles in this website (Medical
Concerns, Important Decisions, Emotional-Spiritual Issues)
and the online guide to Community Programs will also
be helpful.
Resources
General information on Palliative Care
- Concise description of common issues social workers
are likely to confront in the context of palliative care.
Put out as part of the Center for the Advancement of Palliative
Care website.
- Core competencies for social workers.
This excerpt from ìHow to Establish a Palliative Care Programî addresses
defined roles/skills for social workers. The overall booklet includes a
historical review of palliative care; values and ethical principles; norms/standards
of practice and guidelines; policies & procedures; measures; financing
issues; hospice-hospital relationships; program components; and case
examples.
- Improving Care for the End of Life.
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.
- Monroe, B. (1998) Social work
in palliative care. In Doyle, D et al. (Eds) Oxford
Textbook of Palliative Medicine, Oxford Medical Publications,
NewYork, pp 867-880.
Online Educational Opportunities
- 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 with an end of life specialty. Class are completed
online so busy professionals can continue working while they
complete their advanced education.
- Grant MacEwan College.
Earn a post diploma certificate in Palliative Care while
learning about the Canadian approach to end of life. This
distance learning program is offered for social workers,
pastoral care professionals, RNs and therapists, etc.
- National Hospice and Palliative Care Organization presents
a listing of all their offerings (conferences, etc.)
Check out their section on ìother hospice
and palliative care educationî which
includes online courses in conjunction with Mt. Ida College.
Up to 10 continuing education units are available for nurses,
social workers, mental health counselors, marriage and family
therapists, and teachers.
- Engaging Faith Communities
in End of Life Care.
The Hospice Foundation of America is
planning an Internet version of curriculum presented
to Florida clergy in 2002-2003. Continuing Education
credits will be offered through the Association
of Social Work and the National Board of Certified
Counselors. Keep checking the website for availability.
Psychosocial Issues
- Dying
Well: The prospect for growth at the end of life.
Written by end of life pioneer, Dr. Ira Byock, this
book frames the end of life as a stage of human growth
and development. Through a series of stories, Dr. Byock
highlights common issues and ways that families can
constructively approach closure.
- Teaching About Living, Teaching About Dying: Seymour Byock
- Questioning Assumptions and Dawning Awareness: My Journey
- Learning to Die Well: Anne-Marie Wilson
- Suffering and Beyond: Douglas Kearney
- Finding Dignity Amid Disease and Disintegration: Wallace Burke, Julia Rosauer,
Hap Visscher
- The Hardest Decisions and the Greatest Opportunities: Janelle Haldeman
- Writing a Personal Script for Dying: Steve Morris
- Accepting the Gift of Dependence and the Burden of Care: Jake Edwards
- Growing Within Tragedy: Michael Merseal
- Facing Unbearable Pain, Unspeakable Losses: Terry Matthews
- Letting Go, Growing On: Maureen Riley
- Getting There from Here: Social and Cultural Dimensions
- Caregivers
and Loss: Family Needs, Professional Responses.
Essays interweave with Case Studies as 13 professionals
in the field talk about grief before and after the
death of a loved one, the changing roles of providers,
and innovative support programs. Published by the Hospice
Foundation of America.
- The Four Things
that Matter Most: A Book about Living. For
twenty years, Dr. Ira Byock has worked with the seriously
ill. His work with the dying—perhaps the people
who know the most about what is important about living—taught
him that there are four phrases that can be positively
transformative: “Please forgive me; I forgive
you” “Thank you” “I love you” and “Good-bye.” This
book is full of stories of how people have been able
to use these phrases to restore relationships long
gone adrift. Excellent resource for understanding the
opportunities for healing afforded at the end of life.
- Depression
at Lifeís End Even people at lifeís end find things that still bring them
pleasure. If you are working with a client who is unable
to derive any pleasure from life, he/she could easily be
depressed. There are treatments and they are worth pursuing.
The Palliative Care Response book put together by the Veteranís
Administration is available online. Scroll down the left
hand side of the website to find the section on Depression.
- Block SD for the ACP-ASIM End-of-Life Care Consensus
Panel. Assessing and Managing Depression in the Terminally
Ill Patient. Annals of Internal Medicine, 2000; 132: pp
209-218
- Anxiety
at Lifeís End Continuous apprehension while understandable at lifeís end,
significantly impactís the individualís quality of life.
The Veteranís Administration
has put sections from their Palliative Care response book
online. Scroll down the left hand side of the website to
find the section on Anxiety.
Advance Care Planning
- Check out the Important
Decisions section of our website. From there
you can download an advance directive and read articles
about defining quality of life, making choices regarding
health care and starting the conversation with family.
- Caring
Conversations is a consumer education initiative
that helps individuals and their families share meaningful
conversation while making practical preparations
for end of life decisions. The downloadable booklet
was put together by the Center for Practical Bioethics
and is available in both English and Spanish.
- Talking
about Your Choices is a downloadable guide
for talking with your family about end of life decisions.
Produced by Partnership
for Caring, this group also offers live chats,
moderated discussions and opportunities to participate
in advance care planning advocacy activities on the
national level.
- Consumer's
Tool Kit for Health Care Advance Planning.
This is a very thorough, yet readable, set of articles
developed by the American Bar Association to help
consumers prepare an Advance Directive.
Tool 1: How to Select Your Health Care Agent or Proxy
Tool 2: Are Some Conditions Worse Than Death?
Tool 3: How Do You Weigh Odds of Survival?
Tool 4: Personal Priorities and Spiritual Values Important to Your Medical
Decisions
Tool 5: After Death Decisions to Think About Now
Tool 6: Conversation Scripts: Getting Past the Resistance
Tool 7: "Proxy IQ Test" for Family or Physician
Tool 8: What to Do After Signing Your Health Care Advance Directive
Tool 9: Guide for Health Care Proxies
Tool 10: Resources for Advance Planning for Health Care
Economics of end of life care
- Emanuel EJ, Fairclough DL, Slutsman J & Emanuel LL.
Understanding Economic and Other Burdens of Terminal
Illness: The Experience of Patients and Their Caregivers.
Annals of Internal Medicine, 2000; 132: pp 451-459.
- Zerzan J, Stearns S & Hanson L. Access to Palliative
Care and Hospice in Nursing Homes. Journal of the
American Medical Association , 2000; 284: pp 2489.
- Payne SK, Coyne P, Smith TJ: The health
economics of palliative care. Oncology 2002; 16: 801-808.
Cultural Competence
- Download Diversity Notes to
gain better insights regarding African American, Hispanic
and Asian approaches to end of life issues. These were
created byt the National Resource Center on Diversity
in End of Life Care.
- Crawley
L, Payne R, Bolden J, Payne T, Washington P, Williams
S. Palliative and End-of-Life Care in the African American
Community. Journal of the American Medical Association,
2000; 28: pp 2518.
- Hallenbeck, J & Goldstein, MK (1999) Decisions at the
end of life: cultural considerations beyond medical ethics.
Generations Spring 24-29.
- Die-Trill, M. (1998) The patient from a different culture.
In J. Holland etc al (Eds) Psycho-oncology, Oxford
University Press, New York
Innovative Palliative Care Programs
- Promoting Excellence in End of
Life Care provides tools
for professionals that were used in numerous demonstration projects. The
following topics are included: clinical care, evaluation, education, organizational,
and research.
- Last Acts Palliative Care Resource Center.
In this section of the Last Acts website you can browse
or search the Promising Practices database, which is
organized by common barriers, recommendations and promising
practices, along with examples in the hospital, LTC and
hospice context.
- VA Nationwide Palliative Care Network A
new partnership between the Veteransí Administration
and Hospice has resulted in unique programming
geared to the specific needs of individuals who served
in the military.
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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