If You Choose Not to Start Dialysis Treatment

If You Choose Not to StartDialysis Treatment

NATIONAL KIDNEY FOUNDATION2

For many people with kidney failure, dialysis greatly improves qual-ity of life. For some patients, however, dialysis may not improvequality of life significantly—often because of their serious healthproblems. It is important to know that in such a situation, you havethe right to decide not to start dialysis. Before considering thisoption, however, you should discuss it carefully with your doctorand your loved ones. This booklet has been written to answer yourgeneral questions about not starting dialysis. If you have additionalquestions, 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 feelthat the burdens of dialysis would outweigh the benefits to you. It isimportant to discuss this decision with your doctor and lovedones. 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 ofdecisions for yourself, someone you have named earlier (such as ahusband or wife, son or daughter or a close friend) can tell thedoctor and health care staff what decision you would want tomake. The person you name to make medical decisions for you iscalled your "surrogate." (See next question.)

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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 adurable health care power of attorney. It is important to makesure the person you name is willing to act on your behalf and thathe or she knows your short- and long-term goals, your values andwhat treatments you would or would not want to have if you werenot able to speak for yourself. It is helpful if you complete a formcalled a treatment-specific living will, which will give your surro-gate clear directions about your wishes regarding dialysis and/orother medical treatments.

The role and responsibilities of the surrogate, as well as the types ofdecisions the surrogate may make, vary from state to state, depend-ing on the laws of each state. Generally, the surrogate must followyour wishes. For more information about naming a surrogate andabout the laws in your state, you may want to speak with an attor-ney or your local or state bar association. You may also obtaincopies of the forms used in your state by calling or writing: NationalHospice 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 KidneyFoundation booklet Advance Directives: A Guide for Patients andTheir Families).

Will my doctor help me decide about whether to start treatment?

Yes. Your doctor will speak to you about what dialysis treatmentinvolves and what deciding not to start dialysis would mean for you.The doctor will provide emotional support to you and your lovedones while you try to make this decision. While the doctor may offeran opinion as to whether dialysis would benefit you significantly, thefinal decision about starting or not starting treatment remains withyou or your surrogate.

Suppose I am not sure whether dialysis couldhelp me?

Sometimes, it may not be clear whether the benefits of dialysis to anindividual will outweigh the burdens. If this is the case, your doctormay recommend that you start treatment for a trial period, for exam-ple, 30 days. During and after the trial period, you and your doctorand the other members of your kidney health care team will see howyou are doing. Based on these evaluations, the doctor will speakwith you about whether dialysis is helping. The final decision aboutstopping dialysis would be up to you or, if you are not able to makethis 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. Althoughyou may find it hard at first, the best approach is to discuss yourfeelings openly with your loved ones. You may wish to include yourdoctor in the discussion with them.


Will I be asked to speak to a mental health professional?

Perhaps. If your doctor is concerned that you may not want to startdialysis for an emotional reason, such as depression, he or she mayask you to speak with a psychiatrist, social worker or othercounseling professional. Depression may be treated successfullywith counseling, medicine, or a combination of both. Your doctormay also want you to speak with a mental health professional tomake sure you understand the full impact of what choosing not tostart 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 failureand are in need of dialysis may live anywhere from one day toseveral weeks without dialysis, depending on the amount of kidneyfunction 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 beprescribed for you. Without treatment, toxic wastes and fluid willbuild up in your body, making you feel increasingly tired. The fluidbuild-up can make it more difficult for you to breathe, but your doc-tor can prescribe diuretics or a treatment called ultrafiltration toremove fluid and make breathing easier for you. The doctor mayalso recommend that you limit your intake of salt and fluids toreduce fluid weight gain.


Is deciding not to start dialysis considered suicide?

Many religions believe individuals have the right to refuse medicaltreatment, including dialysis, if they feel it will not help them and willbe 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 tohelp me?

Yes. Your doctor should remain available to you and your lovedones. He or she can advise you about the type of care you mightneed and help you arrange for care. The doctor should also talk toyou and your loved ones about other concerns you might have.


Do I have a choice of where I die?

Your wishes about where you want to die will be honored as muchas possible. Many people choose to die at home, where they feelmore comfortable in familiar surroundings. If you choose this option,a hospice or home health agency may assist you and your lovedones in making any special arrangements for your care at home. Anursing home may be another option for some people. A hospitaladmission is not always available, depending on the nature of yourinsurance coverage and your overall medical condition. Your doctorcan help you decide if hospitalization is an option for you if youwish.

Could I get hospice care?

Usually. If you choose not to start dialysis, you are considered tobe in a terminal state, and you are eligible for hospice care. Thetype of hospice care available may be either a home hospice pro-gram or a hospice facility. A visiting nurse service or home careagency may be able to help you and your loved ones makearrangements for hospice care. For more information about hospiceprograms in your community, speak to your doctor, nurse or socialworker. You may also be able to get information from your clergy-man, from friends and neighbors who have had experience withhospice care, or by contacting local senior centers or the local orstate Office on Aging. Also check your local yellow pages or direc-tory assistance and Internet resources such as:www.hospiceinfo.org



If I choose to die at home, can I get a homehealth 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 aidemay be available to assist. If your insurance does not cover a homehealth aide, and you and your loved ones wish to pay privately forthese 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 wantto make sure the following items are in order:

■ Your will.■ Signed advance directive (living will, durable health carepower of attorney or health care proxy) complying with yourstate law.■ A durable power of attorney, complying with your state law,naming someone to act on your behalf on all matters other thanmedical (e.g. legal, financial, banking and business matters).

Your power of attorney must be a "durable" one in order to stayin effect even if you become unable to make your own deci-sions or if you die. ■ An inventory, including the location of your bank, brokerageand other financial accounts, stock and bond holdings, realestate 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 andbusiness associates who should be notified of your death orwho may have information that will be helpful in dealing withestate affairs.■ A statement about your preference for funeral/memorial serv-ices, burial or cremation instructions and decisions about organand tissue donation. ■ Written, video- or audio-taped message to family membersand other loved ones, business associates and friends.

What if I have more questions?

If you have more questions about medical concerns, you shouldspeak to your doctor. Additional information about living wills,health care proxies or durable health care powers of attorney maybe obtained from an attorney or your local or state bar associa-tion. You may also obtain copies of the forms used in your state bycontacting the National Hospice and Palliative Care Organization(see page 3 for contact information).

Other Resources:

You may find these other publications from the National KidneyFoundation helpful:

■ Advance Directives: A Guide for Patients and Their Families

■ Choosing a Treatment for Kidney Failure

■ When Stopping Dialysis Treatment is Your Choice



Questions for My Doctor


Questions for My Doctor

More than 20 million Americans—one in nine adults—have chronic kidney disease, and most don’t evenknow 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 fortransplantation. 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 theNational Kidney Foundation is funded by public donations.

© 1996 National Kidney Foundation, Inc., 2007 Edition. All Rights Reserved. 11-10-0330

National Kidney Foundation30 East 33rd StreetNew York, NY 10016800-622-9010

www.kidney.org

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If You Choose Not to Start Dialysis Treatment