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Spirituality and End of Life Care in Nebraska
A 2004 survey on
end of life care in Nebraska revealed important findings regarding
death, dying and spirituality in our state. For instance, on
the issue of trust regarding end of life care, clergy ranked
second only to physicians with 50 percent of Nebraskans saying
they would trust their clergy members to provide information
on end of life issues.
While a significant percentage (37 percent)
of Nebraskans say they would want clergy to initiate conversations
about end of life issues, yet only 4 percent have had such
conversations with their faith leaders. Among older Nebraskans—those
age 75 and above—this disconnect is even clearer: 49
percent would want their clergy to initiate such a conversation,
but only 2 percent have had such a conversation with their
clergy.
Spirituality is a critical element for Nebraskans
at the end of life. Eighty-nine percent of survey respondents
say that when they are dying they believe it will be very
important to be at peace spiritually. Sixty-four percent
say it is very important to have comfort from spiritual or
religious persons; even among those who rarely or never attend religious
services, 60% felt it was at least somewhat important to
receive spiritual comfort.
Nebraskans look to their faith
communities for support at the end of life. Half look to
place of worship for encouragement; one third look for listening,
knowledge of the illness, understanding, and help with care
for other family members.
Given that so many Nebraskans turn
to the clergy for support and information, we offer this list
of resources to help your serve your congregations. In addition
to the items listed below, you might also want to check out
the resources
for social workers which include links to information
on depression and anxiety. Our page of resources for families might
also prove useful as it lists websites, books and articles
written for family patients and caregivers. 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.
Certainly,
if you have any questions or would like to talk with other
clergy who are actively working with end of life issues,
please contact us, the Grand Island Coalition for End of
Life Care, at info@respectmywishes.org or
308-398-5485.
Resources
Spirituality in Palliative Care
- Spirituality Grand-Rounds This
is a downloadable audio file of a conference call where
Douglas Miller, MD, Professor of Geriatric Medicine and
John Chibnall, PhD, Associate Professor of Psychiatry at
St. Louis University discusses the importance of spirituality
in palliative care. Originally recorded in 2002.
- Daaleman TP, VandeCreek L. Placing Religion and Spirituality
in End-of-Life Care. Journal of the American
Medical Association, 2000; 284: pp 2514. This article
is directed to physicians, helping them to understand
the spiritual aspects of terminal illness. It may
prove useful in working with doctors who are not
sure how to address this aspect of care.
- Core competencies for chaplains.
This excerpt from “How
to Establish a Palliative Care Program” addresses defined
roles/skills for pastoral care providers. 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.
Innovative Palliative Care Programs
- 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.
- 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.
End of Life Training Opportunities
- 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 available through the
Association of Professional Chaplains. Keep checking the
website for availability.
- Clergy to Clergy:
Helping You Minister to Those Confronting Illness, Death
and Grief. Especially for spiritual professionals, this
audiotape series is offered by the Hospice Foundation of
America. Each topic is conversational in format, including
practical suggestions and coping strategies. Topics:
-
Counseling Those With Life-Threatening Illness
-
Counseling
the Bereaved
-
The Funeral Ritual: Empowering Healing
-
Your Faith Community
as a Source of Support
-
When a Child
Dies
-
Helping Children Cope with Loss
-
Facing Illness as a Family
-
Facing Grief as a Family
-
Complicated Mourning
-
Caring for Yourself
-
What is Grief?
-
Coping with Loss
- 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 “other hospice and palliative
care education” 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.
- Supportive-Affective Groups for
Patients with Life-Threatening Medical Conditions: A Spiritual-Emotional-Relational
Approach to Helping Patients. This downloadable manual
put together by the St. Louis University Medical School
offers tips for conducting patient support groups.
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
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.
National Organizations
- The Health Ministries Association
is a cross denominational collaborative dedicated to
whole-person healing. It’s focus is much broader
than end of life care, nevertheless, it lists conferences
of interest and has a downloadable catalogue of resources
sorted by denomination.
- The Interfaith Health Program
is part of Emory University and the Institute for Public
Health Collaborations. Their premise is that every
faith community could adopt a region and make it their
mission to achieve a public health goal. Go to this website
for support materials on this community development approach
to public health.
- The International Parish Nurse Resource Center
offers support information for members of the clergy
who wish to establish a parish nursing ministry.
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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