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Patient & Family
Education
What
happens if your heart stops beating?
The Kidney End-of-Life Coalition’s CPR Workgroup developed
this document to educate patients on cardiopulmonary resuscitation
(CPR).
Questions
and Answers is a document intended
to educate ESRD patients and their families about end-of-life
care.
The Center for Practical Bioethics’
Caring
Conversations booklet is a consumer education initiative
that helps individuals and their families share meaningful
conversation while making practical preparations for end-of-life
decisions.
Consumer’s
Tool Kit for Health Care Advance Planning is provided
by the American Bar Association’s Commission on Law
and Aging. This tool kit includes 10 tools for health care
planning.
Caring
Connections is a program of the National Hospice and Palliative
Care Organization (NHPCO). It is a national consumer engagement
initiative to improve care at the end of life, supported by
a grant from the Robert Wood Johnson Foundation. It provides
free resources and information to help make decisions about
end-of-life care and services as well as free state-specific
advance directive documents and instructions.
The
POLST Form is a standardized form designed to convert
wishes for life-sustaining treatments into medical orders.
It was created to ensure that treatment wishes are honored
in the event that a patient/resident is unable to speak for
himself or herself. Surrogate decision-makers may communicate
treatment preferences on behalf of incapacitated individuals
so the form can be used for those who lack decisional capacity.
Although the POLST program was originally developed in Oregon,
programs based on the POLST paradigm are now used in West
Virginia and Washington as well as parts of Wisconsin, Pennsylvania,
New York, Utah, New Mexico, Michigan, Georgia and Minnesota.
Aging
with Dignity includes information about the popular “5
Wishes” document, which helps people communicate their
wishes about end-of-life care. "5 Wishes” is a
legal document in 38 states and the District of Columbia.
Advance Care Planning:
For Dialysis Patients and Their Families was developed
by the Mid-Atlantic Renal Coalition (Network 5) and the Academy
for Educational Development to help dialysis patients plan
for their care. Contact
the Kidney EOL Coalition to request a copy; there is a
small fee for shipping and handling.
Growth
House has a collection of international resources for
end-of-life care. This site includes a search engine to provide
in-depth resources on compassionate care for those suffering
from serious illnesses.
National
Alliance for Caregiving a non-profit coalition created
in 1996 to support family caregivers and the professionals
who serve them. Its membership includes more than 30 national
organizations.
National
Family Caregivers Association provides services, support,
and education to improve the quality of life for caregivers
and families. The association offers free membership for family
caregivers.
MediCaring.org
is a site sponsored by the Washington Home Center for Palliative
Care Studies (CPCS), and it is affiliated with Rand Health.
This site offers a variety of resources on improving end-of-life
care such as caregiver guides and research on chronic illness.
Dying
Well is a book written by Ira Byock, MD, which provides
resources for individuals facing serious illness. Dr. Byock,
a palliative care expert and advocate for enhanced end-of-life
care, also offers information for families and professional
caregivers.
The National Kidney Foundation's A to Z Health Guide provides
a number of useful brochures about planning for the end of
life:
These three
publications can be ordered in full booklet version from the
NKF
catalog or by calling 1-800-622-9010.
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