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If You Choose Not to Start Dialysis Treatment
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If You Choose Not to Start Dialysis Treatment

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  • 1. If You Choose Not to Start Dialysis Treatment
  • 2. For many people with kidney failure, dialysis greatly improves qual- ity of life. For some patients, however, dialysis may not improve quality of life significantly—often because of their serious health problems. It is important to know that in such a situation, you have the right to decide not to start dialysis. Before considering this option, however, you should discuss it carefully with your doctor and your loved ones. This booklet has been written to answer your general questions about not starting dialysis. If you have additional questions, you should speak to your doctor. Can I really decide not to start dialysis treatment? Yes, you have the right to decide not to start treatment if you feel that the burdens of dialysis would outweigh the benefits to you. It is important to discuss this decision with your doctor and loved ones. However, the final choice about starting or not starting treat- ment is up to you. If you are no longer able to make these kinds of decisions for yourself, someone you have named earlier (such as a husband or wife, son or daughter or a close friend) can tell the doctor and health care staff what decision you would want to make. The person you name to make medical decisions for you is called your "surrogate." (See next question.) 2 NATIONAL KIDNEY FOUNDATION
  • 3. How do I go about naming someone to be my surrogate? This is done by filling out a form called a health care proxy or a durable health care power of attorney. It is important to make sure the person you name is willing to act on your behalf and that he or she knows your short- and long-term goals, your values and what treatments you would or would not want to have if you were not able to speak for yourself. It is helpful if you complete a form called a treatment-specific living will, which will give your surro- gate clear directions about your wishes regarding dialysis and/or other medical treatments. The role and responsibilities of the surrogate, as well as the types of decisions the surrogate may make, vary from state to state, depend- ing on the laws of each state. Generally, the surrogate must follow your wishes. For more information about naming a surrogate and about the laws in your state, you may want to speak with an attor- ney or your local or state bar association. You may also obtain copies of the forms used in your state by calling or writing: National Hospice and Palliative Care Organization, 1700 Diagonal Road, Suite 625, Alexandria, VA 22314; phone 800-658-8898 or 703-837-1500; www.nhpco.org (also see the National Kidney Foundation booklet Advance Directives: A Guide for Patients and Their Families). Will my doctor help me decide about whether to start treatment? Yes. Your doctor will speak to you about what dialysis treatment involves and what deciding not to start dialysis would mean for you. The doctor will provide emotional support to you and your loved ones while you try to make this decision. While the doctor may offer an opinion as to whether dialysis would benefit you significantly, the final decision about starting or not starting treatment remains with you or your surrogate. NATIONAL KIDNEY FOUNDATION 3
  • 4. Suppose I am not sure whether dialysis could help me? Sometimes, it may not be clear whether the benefits of dialysis to an individual will outweigh the burdens. If this is the case, your doctor may recommend that you start treatment for a trial period, for exam- ple, 30 days. During and after the trial period, you and your doctor and the other members of your kidney health care team will see how you are doing. Based on these evaluations, the doctor will speak with you about whether dialysis is helping. The final decision about stopping dialysis would be up to you or, if you are not able to make this decision, your surrogate. How do I discuss this decision with my family and friends? Many people find it difficult to talk about whether or not to start treat- ment, and they worry about how others will feel and react. Although you may find it hard at first, the best approach is to discuss your feelings openly with your loved ones. You may wish to include your doctor in the discussion with them. 4 NATIONAL KIDNEY FOUNDATION
  • 5. Will I be asked to speak to a mental health professional? Perhaps. If your doctor is concerned that you may not want to start dialysis for an emotional reason, such as depression, he or she may ask you to speak with a psychiatrist, social worker or other counseling professional. Depression may be treated successfully with counseling, medicine, or a combination of both. Your doctor may also want you to speak with a mental health professional to make sure you understand the full impact of what choosing not to start dialysis will mean. How long will I live if I choose not to start dialysis? This varies from person to person. People who have kidney failure and are in need of dialysis may live anywhere from one day to several weeks without dialysis, depending on the amount of kidney function they have left and their overall medical condition. Is death from kidney failure painful? Not usually. If you do feel any discomfort, pain medicine may be prescribed for you. Without treatment, toxic wastes and fluid will build up in your body, making you feel increasingly tired. The fluid build-up can make it more difficult for you to breathe, but your doc- tor can prescribe diuretics or a treatment called ultrafiltration to remove fluid and make breathing easier for you. The doctor may also recommend that you limit your intake of salt and fluids to reduce fluid weight gain. NATIONAL KIDNEY FOUNDATION 5
  • 6. Is deciding not to start dialysis considered suicide? Many religions believe individuals have the right to refuse medical treatment, including dialysis, if they feel it will not help them and will be burdensome. You may wish to speak with your religious advis- er if you have concerns about this. If I make this decision, will my doctor continue to help me? Yes. Your doctor should remain available to you and your loved ones. He or she can advise you about the type of care you might need and help you arrange for care. The doctor should also talk to you and your loved ones about other concerns you might have. 6 NATIONAL KIDNEY FOUNDATION
  • 7. Do I have a choice of where I die? Your wishes about where you want to die will be honored as much as possible. Many people choose to die at home, where they feel more comfortable in familiar surroundings. If you choose this option, a hospice or home health agency may assist you and your loved ones in making any special arrangements for your care at home. A nursing home may be another option for some people. A hospital admission is not always available, depending on the nature of your insurance coverage and your overall medical condition. Your doctor can help you decide if hospitalization is an option for you if you wish. Could I get hospice care? Usually. If you choose not to start dialysis, you are considered to be in a terminal state, and you are eligible for hospice care. The type of hospice care available may be either a home hospice pro- gram or a hospice facility. A visiting nurse service or home care agency may be able to help you and your loved ones make arrangements for hospice care. For more information about hospice programs in your community, speak to your doctor, nurse or social worker. You may also be able to get information from your clergy- man, from friends and neighbors who have had experience with hospice care, or by contacting local senior centers or the local or state Office on Aging. Also check your local yellow pages or direc- tory assistance and Internet resources such as: www.hospiceinfo.org NATIONAL KIDNEY FOUNDATION 7
  • 8. If I choose to die at home, can I get a home health care worker to help my loved ones? The types of services covered at home will depend on your insur- ance. If you are in a home hospice program, a home health aide may be available to assist. If your insurance does not cover a home health aide, and you and your loved ones wish to pay privately for these services, you can do so. Discuss this with your doctor. Is there anything else I should know about not starting dialysis? If you decide not to start treatment, you or your surrogate may want to make sure the following items are in order: ■ Your will. ■ Signed advance directive (living will, durable health care power of attorney or health care proxy) complying with your state law. ■ A durable power of attorney, complying with your state law, naming someone to act on your behalf on all matters other than medical (e.g. legal, financial, banking and business matters). 8 NATIONAL KIDNEY FOUNDATION
  • 9. Your power of attorney must be a "durable" one in order to stay in effect even if you become unable to make your own deci- sions or if you die. ■ An inventory, including the location of your bank, brokerage and other financial accounts, stock and bond holdings, real estate and business records, medical and other insurance poli- cies, pension plans and other legal papers. ■ Names, addresses and telephone numbers of your attorney, accountant, family members and other loved ones, friends and business associates who should be notified of your death or who may have information that will be helpful in dealing with estate affairs. ■ A statement about your preference for funeral/memorial serv- ices, burial or cremation instructions and decisions about organ and tissue donation. ■ Written, video- or audio-taped message to family members and other loved ones, business associates and friends. What if I have more questions? If you have more questions about medical concerns, you should speak to your doctor. Additional information about living wills, health care proxies or durable health care powers of attorney may be obtained from an attorney or your local or state bar associa- tion. You may also obtain copies of the forms used in your state by contacting the National Hospice and Palliative Care Organization (see page 3 for contact information). Other Resources: You may find these other publications from the National Kidney Foundation helpful: ■ Advance Directives: A Guide for Patients and Their Families ■ Choosing a Treatment for Kidney Failure ■ When Stopping Dialysis Treatment is Your Choice NATIONAL KIDNEY FOUNDATION 9
  • 10. Questions for My Doctor 10 NATIONAL KIDNEY FOUNDATION
  • 11. Questions for My Doctor NATIONAL KIDNEY FOUNDATION 11
  • 12. More than 20 million Americans—one in nine adults—have chronic kidney disease, and most don’t even know it. More than 20 million others are at increased risk. The National Kidney Foundation, a major vol- untary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well- being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. Through its 50 affiliates nationwide, the foundation conducts programs in research, pro- fessional education, patient and community services, public education and organ donation. The work of the National Kidney Foundation is funded by public donations. National Kidney Foundation 30 East 33rd Street New York, NY 10016 800-622-9010 www.kidney.org © 1996 National Kidney Foundation, Inc., 2007 Edition. All Rights Reserved. 11-10-0330