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. Application of the PSDA regulations and creation of comparable Advance Directive documents in the pediatric setting are evolving very slowly despite a clear need. The National Kidney Foundation, the American Academy of Pediatrics and dialysis units believe dialysis patients including children and adolescents and their parents should know about the right to make an advance directive.
Due to many complex reasons, our society permits independent decision-making for most matters including health care at age 18 years. Normal brain development studies show full development may not occur until age 25 years, but this may not reflect what happens physically or mentally to patients with chronic diseases and multiple medical experiences.
Parents, children and adolescents dealing with chronic illness including kidney disease need to talk about what is important in terms of quality of life and complete the legal documents that insure their wishes are respected.
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 living will, the more common type, 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.
- A durable power of attorney for health care decisions or a health care proxy allows you to name someone, such as a parent, 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.
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.
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 includes 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.
I’m 18 years old, why do I need an Advance Directive?
Parents, children and adolescents are used to the parent being the decision maker. However, when an adolescent turns 18 years old, the parent is no longer the decision maker and in fact, the law prevents health care providers from discussing issues with anyone other than the “patient” unless the patient gives permission or there is an appropriate advance directive according to the laws of the state of residence. Without an advance directive, your family may have to go to court to be included in treatment decisions.
Parents may be thinking that your adolescent will not exclude you from participating in medical visits or decision making about surgeries or other treatments. Adolescents may also be thinking that they would not be comfortable making decisions without a parent or other trusted adult involved. If you have been working with your health care team for some time you will hopefully have been planning for these types of transitions.
Attorneys recommend that young adults have two legal documents normally associated with older people: a durable power of attorney and a health care proxy. The first covers possible financial concerns if an adolescent is away at school for example, and the second covers health care issues. In an emergency, without a health care proxy or durable power of attorney for health care (name varies by state), the parent or legal guardian may need court approval to advocate on behalf of the adolescent/young adult.
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 and chaplain services) may be 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.
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.
- 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.
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 treatments would you want to continue?
- If you had severe and permanent brain damage, would you want any 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, and bone) to someone else at the time of your death? Specify what organs or tissues, if any, you would want to donate.
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.
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