Today’s treatments for kidney failure can allow you to enjoy your life with family and friends. Dialysis is a life-sustaining 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 the end of life.
Looking ahead can be overwhelming, but you can gain some control by telling your healthcare providers and family about your wishes for care as your disease progresses. This will also make it easier for them to make decisions for you if you become too sick to make decisions yourself.
All of these decisions are called advance care planning, which is simply making choices about your care before you need it. It is helpful to understand the progression of your illness, what is expected to happen, and your treatment options that include not having dialysis. Your physician should help you to identify the care you want and to fully understand what your journey may be.
Your dialysis facility staff can work with you to put some of these decisions in writing—an advance directive—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.
Care planning resources:
- REVISED 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 booklet (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.
- Consumer’s Tool Kit for Health Care Advance Planning is provided by the American Bar Association’s Commission on Law and Aging.
- Aging with Dignity, a non-profit organization, created the popular Five Wishes document that helps people communicate their wishes about end-of-life care. Most states have adopted Five Wishes as a legal document; check the website to see if your state is one of them.
- 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. 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!