Patient
& Family Education
“The Shadow of Your Smile” details the end-of-life story of dialysis patient Jerry Eilers, as told by his wife and caretaker Denise Eilers, RN, BSN.
"The Importance of Hospice in End-of-Life Care," by John J. Lombard, Jr., details the experience of Barbara Mallon Lombard and her family during her last illness with Acute Myeloid Leukemia.
Renal Info is an educational site that helps patients and their family members cope with kidney disease and provides information on the disease, how kidneys work, and treatment options. The No Treatment page includes information about not starting dialysis, stopping dialysis, and what to expect when dying from kidney failure.
Who
Needs an Advance Health Care Directive? This article from
the American Association of Kidney Patients' (AAKP) RENALIFE
publication is provided with the Association's permission.
American
Bar Association offers information in layman's terms about
Health Care Advance Directives. It describes the Patient Self-Determination
Act (PSDA) and provides useful information to consider when
drafting your own document.
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 (available in English and Spanish)
is a consumer education initiative that helps individuals
and their families share meaningful conversation while making
practical preparations for end-of-life decisions.
Caring Conversations for Young Adults, also from the Center for Practical Bioethics, provides a starting point for young adults and their families to talk about topics like organ donation, do-not-resuscitate orders, and serious illness.
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. Download an order form.
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.net is a site sponsored by the Palliative Care Policy Center, formerly known as Center for Palliative Care Studies (CPCS). 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 publications
can be ordered in full booklet version from the NKF
catalog or by calling 1-800-622-9010.
End of Life Prayer
When my life is finally measured
In months, weeks, days, hours,
I want to live free of pain,
Free of indignity,
Free of fear,
Fear of loneliness.
Give me shelter.
Give me your hand.
Give me your care.
Give me your understanding.
Give me your love.
Then let me go peacefully
And help my family (and friends)
To understand.
Anonymous prayer found at Hospice House, Williamsburg, VA
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