Today, medical advances have made it possible for people with chronic illness to have successful treatment, improving life expectancy and quality of life. However, life-saving advances sometimes mean watching someone you love being kept alive when you are not sure what his or her choice would have been about the treatment being given. Often, doctors and families are asked to make difficult treatment decisions. In some cases, the courts have been called on to make these decisions.
Many decisions can be made by patients and their families before a medical crisis occurs. Patients with kidney disease might consider preparing a legal document to guide loved ones, doctors and other health care professionals in providing treatment in a time of crisis.
The Patient Self-Determination Act, in effect since 1991, gives adults with the capacity to make medical decisions for themselves the right to make decisions today about health care treatment they would want to receive in the future if they could not communicate what they want at that time. This law requires that hospitals, nursing homes and other health agencies give all patients information about their right to have a legal document called an advance directive. Dialysis units are not legally required to give you this information, but the National Kidney Foundation and many dialysis units believe dialysis patients should know about the right to make an advance directive.
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What is an Advance Directive?
An advance directive is a legal paper that tells doctors and health care providers how you want them to carry out medical decisions you have made for future crisis care, even if you cannot communicate these decisions for yourself. If you have an advance directive in your medical records, your doctor and other health care providers can take care of you based on your wishes as stated in the advance directive.
There are two basic kinds of advance directives:
- A durable power of attorney for health care decisions, or a health care proxy allows you to name someone, such as a husband, wife, daughter, son or close friend, to act on your behalf if you are unable to make medical decisions for yourself. It is important to ask this person if he or she is willing to act as your "agent" and to talk about what treatments you would want and those you would not want, as well as your short- and long-term goals and values.
- A living will tells your doctor or health care provider in writing what type of medical care you want or do not want if you should become unable to make these decisions for yourself or be unable to communicate them.
Your state's laws may allow you to have both a living will and a durable power of attorney or to combine them in a single form. You may want to speak to a lawyer or contact your state or local bar association about your state's laws concerning advance directives; your social worker or other health care professional can also provide assistance.
Could my family or friend just decide for me without an advance directive?
Laws are strict about this. Hospitals and other health care providers usually will not let a friend decide unless he or she is named in an advance directive. Without an advance directive, your family may have to go to court to have treatment stopped. Here is the typical legal order of potential decision makers if there is no advance directive in place: guardian, spouse, an adult son or daughter, a parent, an adult sibling, an adult grandchild, or an adult relative or close friend who is in close contact with the person and is familiar with the patient’s activities, health, and religious or moral beliefs and lastly the guardian of the estate.
What types of decisions can I make in an advance directive?
With an advance directive, it may be possible to accept all treatments recommended by the health care provider, accept some treatments and refuse others, or refuse all recommended treatments.
In your advance directive, you can choose to receive pain medicines for comfort even if you refuse other treatments. You may be able to accept or refuse other treatments, such as:
- Cardiopulmonary resuscitation (CPR) to restore breathing and blood circulation. (This may include heart massage, drugs, electric shocks and artificial breathing machines.)
- Tube feedings, including giving food and/or water through a tube into a vein or into the stomach.
- Artificial respiration (ventilator or respirator), which is a machine that breathes for a person through a tube in the throat.
- Antibiotics to fight infection.
- Dialysis for kidney failure, either hemodialysis or peritoneal dialysis.
- Surgery such as heart bypass, gall bladder, etc.
- Blood transfusions or blood products; you may also decide whether you would only want blood from your family members or friends.
Some states may limit your ability to delegate to someone else the authority to refuse one or more types of treatment, for example, providing artificial nutrition or water. Some states may require that treatment be continued once it is accepted by your surrogate. It is important to speak with a lawyer or social worker, or get a copy of your state's advance directive forms so you will understand your state's specific laws.
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Advance Directives and Dialysis
Can an advance directive state the conditions under which dialysis could be stopped?
Yes. An advance directive allows you to tell your doctor, family and loved ones the specific conditions that you feel would limit the quality of life you want for yourself. You may choose to stop dialysis if you have brain damage (caused by a stroke, Alzheimer's disease, etc.), if you cannot move independently (due to a stroke, paralysis, etc.) or if you have to depend totally on others. These are a few of the specific conditions that you can state in an advance directive. In contrast, you may state that you want to live under any condition.
If a patient chooses to stop dialysis, how would he or she die?
Deaths from kidney failure do not have to be unpleasant. If kidney failure is allowed to take its natural course, there will be a build-up of toxic wastes from food and the breakdown of body tissues. Fluid will build up in the tissues, which may cause the patient to become short of breath. The doctor may prescribe diuretics or a type of dialysis (ultrafiltration) that only removes fluid, to make breathing easier. Pain medicines may be prescribed if there appears to be any discomfort. The length of time a dialysis patient can live without treatment varies. If a patient chooses to stop dialysis, hospice services (which may include nursing care, social work, chaplain services, and other supportive services) are available to help. Medicare and insurance can help pay for these services. If you have any questions about stopping dialysis, speak with your health care team.
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Other Important Points
- You are not required by law to have an advance directive
- You do not need to see a lawyer to make an advance directive; however, you may want to speak to a lawyer or social worker to fully understand your state's laws.
- You can get advance directive forms from your state or local bar association, most senior citizen centers, some health care providers, state health department Web sites or www.partnershipforcaring.org.
- You can list the treatments you would want or not want without using a form, but a court or medical provider may not accept them.
- State laws may require that advance directives be witnessed or notarized. Banks and other business have notaries who can do this.
- You should speak to your doctor before making an advance directive. He or she can explain treatment options and tell you whether he or she would object to carrying out your choices.
- Be sure to tell the necessary people about your advance directive. The only way your family, friends, doctor or health care providers will know you have one is if you tell them. It can be made a part of your medical record.
- If you change your advance directive, you need to tell everyone you have given copies to and give them the new one. If you cancel it, you need to get back all of the copies.
- If you are religious, you may wish to speak with your family and your religious advisor to understand your religion's views in regard to advance directives.
- An advance directive goes into effect only if and when you are not able to communicate and make your own health care decisions. Note: It is possible that you can communicate without speaking.
- Having an advance directive does not affect the quality of your care.
- Having an advance directive does not affect life or health insurance.
- Your wishes for donating organs or tissues can be stated in your advance directive. It is also important to tell your family and friends about your wishes so they will carry them out.
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Talking about the following questions with a family member or a close friend may help you understand how you feel about these life and death issues.
- What is the minimum quality of life acceptable to you?
- What are your attitudes toward death?
- How important are being independent and making your own decisions to you?
- Do you have any health problems now? How would you describe them?
- Would your religious beliefs affect your attitude toward life-sustaining treatments? If so, which ones?
- If you were terminally ill with no hope of recovery, which life-sustaining treatments would you want to continue?
- If you had severe and permanent brain damage, would you want any life-sustaining treatments would you want to continue? If so, which ones?
- If you were in a permanent coma, would you want any life-sustaining treatments to continue? If so, which ones?
- Do you feel your family and friends would support you in your decisions about future medical care?
- Who would you want to speak for you and state your decisions if you were unable to express them yourself? Would this person be agreeable to doing this?
- Would you want to donate any organs or tissues (heart, kidneys, liver, eyes, bone) to someone else at the time of your death? Specify what organs or tissues, if any, you would want to donate.
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National Hospice and Palliative Care Organization
Spanish HelpLine: 877.658.8896
American Bar Association
Commission on Law and Aging
740 15th Street, NW
Washington, DC 20005-1022
Video In Your Hands: The Tools for Preserving Personal Autonomy may be rented or purchased. Booklets on advance directives are also available for purchase
Where can I get more information?
Talk to members of your health care team or any health care provider who must give you information about advance directives. Talk with your lawyer, your local bar association or to the Legal Aid Society in your community. Also, see the list of resources further on.
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Checklist of Things to Consider
In order to be prepared for a possible medical crisis, you 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 (legal, financial, banking and business matters). Your power of attorney must be a "durable" one in order for it to stay in effect even if you become unable to make your own decisions or if you die.
- An inventory, including 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 dealing with estate affairs.
- A statement about your preference for funeral/memorial services, burial or cremation instructions and decisions about organ and tissue donation.
- Written, videotaped or audiotaped message to family members and other loved ones, business associates and friends.
To download this brochure click here.
If you would like more information, please contact us.
© 2015 National Kidney Foundation. All rights reserved. This material does not constitute medical advice. It is intended for informational purposes only. Please consult a physician for specific treatment recommendations.