Resources
For Patients & Families
All of these decisions are called “advance care planning” which is simply planning for your care before you need it.
Advance Care & End of Life Planning
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
We encourage important family discussions and help facilitate Advance Care Planning.
All of 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.
Additional Resources
The brochure, Planning Today for Tomorrow’s Healthcare: A Guide for People with Chronic Kidney Disease, introduces patients and their kidney care teams to the process of advance care planning. It details the five steps of planning that allow patients to have control over their healthcare in the event that they cannot speak for themselves.
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 understandable terms about Health Care Advance Directives. It describes the Patient Self-Determination Act (PSDA) and suggests useful information to consider when writing your own directive.
The Center for Practical Bioethics’ Caring Conversations Workbook (available in English and Spanish) helps individuals and their families share this important conversation while making practical preparations for the end of life. There is a special edition for young adults.
Caring Connections – a program of the National Hospice and Palliative Care Organization (NHPCO—provides information to help make decisions about end-of-life care as well as free state-specific advance directive documents and instructions.
National Kidney Foundation’s (NKF’s) A to Z Health Guide provides a Fact Sheet on Advance Directives. Their brochure, Advance Directives: A Guide for Patients and Their Families, addresses important questions that kidney patients and family members may have. Thank you to the NKF for providing this resource at no cost to our website visitors!
