Dedicated to End-of-Life Care for Kidney Patients
Mission:
To promote effective interchange between patients, families,
caregivers, payers, and providers in support of integrated patient-centered
end-of-life care of chronic kidney disease (CKD) patients.
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Advance
Care Planning
Advance care planning allows
competent individuals to plan the type of care they desire
to receive at the end of their lives, as well as appoint people
to assist in carrying out these decisions when they are no
longer mentally capable. While an important aspect of advance
care planning involves advance directive documents, such as
a living will and a health care proxy, the documents themselves
are only part of the process. It is crucial that all individuals
be given the opportunity to exercise their rights to complete
advance directive documents. In doing so they also have the
right to be thoroughly and accurately informed about the documents
and the medical information they will need should they elect
to complete them. In addition, completing the documents is
not sufficient, in that individuals should be encouraged to
engage in extensive conversations with their family, significant
others and health care providers about their choices, as well
as the values and beliefs that underlie them.
*NEW*
The Advance
Care Planning Policy is a template to assist dialysis
facility staff in developing advance care planning policies
and procedures.
There are several tools available
to help an individual plan for the future.
- Hospitals,
hospices to receive CD with advance directive in 20 languages
*NEW*
- 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.
Remember it’s not just
about completing the forms, a living will and a health care
proxy, but sharing values and beliefs that underlie them.
- Aging
with Dignity includes information about the popular
“5 Wishes” document, which helps people communicate
their wishes about end-of-life care. States continue to
adopt "5 Wishes” as a legal document; check
to see if your state has adopted it.
- 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.
*NEW*
Caring
Conversations for Young Adults
- 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 place an order; there
is a small fee for shipping and handling.
- 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.
- The
National Kidney Foundation (NKF) has a website that
offers valuable information to educate patients on advance
directives. The Foundation also has a brochure, available
in its professional
publications catalog, entitled Implementing Advance
Directives: Guidelines for Dialysis.
Educational tools beneficial
for staff:
- The Literature
Review on Advance Directives is not just a summary
of research over the last 20 years, but a thoughtful and
comprehensive descriptive analysis of the issue in American
culture. It contains more than 360 citations. *NEW*
- The National Kidney Foundation's
Council of Nephrology Social Workers has prepared a 1-page
hospice
and dialysis care resource to help educate social
workers and others on Medicare coverage for hospice services
while receiving dialysis. *NEW*
- Understanding
End-of-Life Care: The Social Worker's Role is an online
course developed and offered by the National Association
of Social Workers. Social workers can earn CEUs for participation.
- Network
5’s End-of-Life Module is an educational tool
that provides a complete in-service training session which
defines palliative care and helps participants identify
end-of-life issues that might arise in the facility as
well as possible resources and support.
- American
Nephrology Nurses’ Association’s (ANNA) “Techniques
to Facilitate Discussions for Advance Care Planning (ACP)”
Module is the first in a series of educational modules
on end-of-life Decision Making and the Nephrology Nurse,
an in-depth, national program to promote education for
nurses and improve end-of-life care.
- Dying
Well (online course) is part of the Digital Imaging
Advancement Productions' (DIA) Learning division. This
course contains high-quality video documentary, text,
and quiz components and is approved by the National Association
of Social Workers-Missouri Chapter for 12 continuing education
hours
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