Dialysis: Choosing Not to Start

Patients Rights and Responsibility

For many people with kidney failure, dialysis greatly improves quality of life. For some patients, however, dialysis may not improve quality of life significantly, often because of the severity of their health problems.

A patient has the right to decide not to start dialysis treatments if the burden outweigh the benefits.

Discussion and communication channels should always stay open between patient and physician when making this important decision.

However, the final choice about starting or not starting treatment is up to you. If you are no longer able to make these kinds of decisions, someone you have named earlier (such as a spouse, son or daughter or close friend) can inform the doctor and health care staff of your decisions. The person you choose to make medical decisions for you is called your surrogate.

How do I name someone to be my surrogate?

To name a surrogate, fill out a form called a health care proxy or a durable health care power of attorney. The person you name should be willing to act on your behalf and should know 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. You should complete a form called a treatment-specific living will, which will give your surrogate 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 depending 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, contact an attorney or your local or state bar association.

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

Yes. Your doctor will speak to you about what dialysis treatment involves. 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.

Suppose I am not sure whether dialysis can help me?

Sometimes it may not be clear whether the benefits of dialysis will outweigh the burdens. If this is the case, your doctor may recommend that you start treatment for a trial period, for example 30 days. During and after the trial period, you and your doctor and other members of your renal health care team will evaluate your condition. Based on these evaluations, the doctor will speak with you about whether dialysis is beneficial.

How do I discuss this decision with my family and friends?

Many people find it difficult to talk about whether or not to start treatment, and they worry about how others will react. Although it might be hard at first, the best approach is to discuss your feelings openly with your loved ones. You may wish to include your doctor in this discussion.

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 that you speak with a psychiatrist, social worker or other counseling professional. Depression may be treated successfully with counseling, medication 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 choosing not to start dialysis.

How long will I live if I choose not to start dialysis?

This varies from person to person. People in need of dialysis may live anywhere from one week to several weeks without treatment, depending on the amount of kidney function they have left and their overall medical condition.

Is death from kidney failure painful?

Death from kidney failure is usually painless. If you do feel any discomfort, pain medicine can be prescribed for you. Without treatment, toxic wastes and fluid will build up in your body, making you feel increasingly tired. The fluid buildup can make it difficult to breathe, but your doctor can prescribe diuretics or a treatment called ultrafiltration to remove fluid and make breathing easier. The doctor may also recommend that you limit your intake of salt and fluids to reduce fluid weight gain.

Is deciding not to start dialysis considered suicide?

Many faiths believe individuals have the right to refuse medical treatment, including dialysis, if they feel it will not help them. You may wish to speak with your religious adviser 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. You can and should discuss any additional concerns with your doctor.

Do I have a choice about 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. 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. 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 figure out if hospitalization is a possibility.

Can I get hospice care?

Usually. If you choose not to start dialysis, you are in what is called a terminal state and are eligible for hospice care. The type of hospice care available may be either a home hospice program or a hospice facility. A visiting nurse service or home care agency can help you and your loved ones make arrangements for hospice care.

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 insurance. 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). Your power of attorney must be a "durable" one in order to stay in effect even if you are unable to make your own decisions 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 policies, 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 handling estate affairs.
• A statement about your preference for funeral/memorial services, 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.

To learn more or see the original article, visit the National Kidney Foundation.

^{Copyright 2007 National Kidney Foundation. All rights reserved. This material does not constitute medical advice. It is intended for informational purposes only. No one associated with the National Kidney Foundation will answer medical questions via e-mail. Please consult a physician for specific treatment recommendations.}