|
Patient & Family
Education
Today's treatments for kidney failure allow you to participate in life and enjoy your family and friends. Dialysis is a life-saving treatment, but it is not a cure. Most people with kidney failure have other diseases or conditions that get worse over time. At some point, you could face failing health and - as all people do, regardless of their health - the end of life.
Looking ahead can be overwhelming and scary to think about. But it helps to take control of your care by telling your health care providers and your family about your wishes and the type of care you want as your diseae progresses. This also will make it easier for them to make decisions for you if you become too sick to make them yourself.
Many people on dialysis say they feel better knowing that they talked with their family or social worker about their wishes for the future. They say that they:
- Feel a sense of control over their future
- Have peace of mind
- Know they have made sure that they will be taken care of with dignity, through pain relief and other chosen treatment
- Feel they will be less of a burden to their family, who will not have to make difficult decisions on their behalf
All these decisions are called "advance care planning," which is simply planning for your care before you need it. When making plans, it is helpful to have an understanding of the progression of your illness, anticipated outcomes, and treatment options which include not doing dialysis. Your physician should participate with you in determining appropriate care for you and helping you to fully understand what your journey may be.
Your dialysis facility staff is ready to work with you to put some of these decisions in writing so you can have peace of mind about your future. You can always change any of your decisions later; they are not set in stone.
Advance Directive Information
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.
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 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.
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.
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.
The vision of the National Kidney Foundation (NKF) is to enhance the lives of everyone with, at risk of, or affected by kidney disease. Their A to Z Health Guide provides a fact sheet on Advance Directives and their brochure Advance Directives: A Guide for Patients and Their Families addresses important questions that kidney patients and family members may have when discussing end-of-life care. Click here to order a FREE copy of this brochure. (Thank you to the NKF for providing this resource at no cost to our website visitors.)
*NEW 12/2009*
Choosing Not to Start and Choosing to Stop Dialysis
The National Kidney Foundation (NKF) has created publications for kidney patients to address choosing not to start and choosing to stop dialysis. The brochure If You Choose Not to Start Dialysis Treatment was created to answer general questions about not starting dialysis. The NKF website also offers information on stopping dialysis, including a fact sheet on Dialysis: Deciding When to Stop and the brochure When Stopping Dialysis Treatment is Your Choice: A Guide for Patients and Their Families, which answers commonly-asked questions about dialysis withdrawal.
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.
The Kidney Research UK is a non-profit organization that promotes research and increased public awareness of kidney disease in the United Kingdom (UK). Their Choosing Not to Start Dialysis document provides information on who to talk to, treatment alternatives to dialysis, organizing care, what to expect without dialysis, and things you should know and do when you decide to forgo dialysis.
EdREN, the website of the Renal Unit at the Royal Infirmary of Edinburgh, Scotland, provides educational information to both patients and staff. The EdrenINFO page provides a section on witholding and withdrawal from dialysis, which includes information about how long a person can expect to live on dialysis, keeping well without dialysis, and implications for staff.
The Kidney Foundation of Cananda is the national volunteer organization committed to reducing the burden of kidney disease. Their publications page provides a number of brochures about not doing dialysis. These publications can be downloaded from their website.
Personal Stories
“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.
Additional Resources
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.
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.
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
|
