Elizabeth is a healthy 35-year-old mother of two. She and her husband agree that quality of life is very important. One day Elizabeth is in a car accident. When her husband arrives at the hospital, he is told that Elizabeth suffered severe brain injuries and is being kept alive by artificial life support. After several weeks of treatment, it is clear that there is no hope for recovery. Elizabeth would be in a vegetative state for the rest of her life. Her distraught husband wants the doctors to remove all artificial life support and “let nature take its course.” Should the doctors remove the machines and let Elizabeth die? What if the doctors refuse?
Charlotte, 76 years old, is relatively healthy. She entered the hospital for hip replacement surgery. Charlotte did not react well to the surgery, and her health began to fail. Worse, she became confused and lost. Now she lacks the capacity to make decisions for herself, and her husband must decide whether to allow the doctors to operate again or to give Charlotte medication with serious side effects. The surgery and the medication would prolong her life, but neither would help her to actually recover. Charlotte’s husband does not want the doctors to operate or to give her medication because Charlotte always told him that she did not want extraordinary measures taken to prolong her life. Can Charlotte’s husband stop the doctors from prolonging her life when he knows that she will never recover her health?
You clearly have a legal right to refuse treatment, even if that treatment would prolong your life. In fact, with a few narrow exceptions, you can refuse any treatment, at any time, as long as you are competent. Contrast that with assisted suicide, to which you have no right, at any time, in all states but Oregon.
Since 1914, courts have recognized the right of adults of sound mind to make decisions affecting the integrity of their bodies. This right includes the right to refuse medical treatment that may save or prolong life.
In 1957 Pope Pius XII announced that a Catholic person was not required to agree to extraordinary medical treatment, even if death would result from refusing it. The Pope also stated that it was acceptable to administer pain-relieving drugs to a patient in unbearable pain even if the drugs would shorten the patient’s life. According to the Pope, neither the doctor nor the patient would be committing a sin or a crime as long as the primary purpose of the drugs or the decision was to relieve pain and suffering.
The dilemma comes when you are unable to tell your doctor whether you wish to continue with life-sustaining treatment such as artificial life support. In that case your parent, spouse, child, or sibling may need to implement or to make that decision for you. This is a difficult burden for any of your loved ones, but you can make it easier for them by putting your wishes in writing. These documents are often known as advance directives, which include living wills and durable health care powers of attorney. Oral statements of your wishes can also serve as an advance directive, but you should make sure that you’ve discussed your wishes with your personal physician and that your oral statements are documented in your medical record.
While advance directives are unpleasant to think about, they are necessary. In one case a husband and wife agreed that if one of them ended up in a vegetative state, the other one would refuse to let artificial life support prolong life. They did not put their wishes in writing. When the husband suffered an accident and ended up on life support, his wife sought to have the machines removed. The husband’s sister did not want to stop life support. Because the husband’s wishes were not in writing, his sister was able to stop the wife from having the life support removed. The husband remained in a vegetative state for years, while his wife was drained emotionally and financially. While this is an unusual result—laws in most states would permit the wife to speak for the husband (act as a surrogate decision maker)—it would not have happened had there been a written directive.
A LANDMARK CASE
In 1975, 21-year-old Karen Quinlan collapsed and ceased breathing for at least two fifteen-minute periods. This left her in a chronic persistent vegetative state with no hope of recovery. Her parents wanted doctors to remove artificial life support. The doctors refused. The New Jersey Supreme Court held that a terminally ill patient or the patient’s surrogate decision maker has a constitutionally protected right to make doctors withdraw life-sustaining medical treatment. This right is grounded in the right to privacy. The case is In re Quinlan, 355 A.2d 647 (NJ 1976).
If you spell out in writing what you want to happen in case you end up on artificial life support with no hope of recovery, your doctor will be much more confident that it is your wish that is being carried out. While most states give great deference to the decision that would be made by your family, the only sure way for your family to know what you would have wanted is to put it on paper.
TALKING TO A LAWYER
Suicide?
Q. Is it suicide to refuse life-sustaining treatment?
A. No. All of the court opinions that look at this issue have clearly distinguished suicide from the refusal of treatment, including life-sustaining treatment. Suicide is a self-inflicted death. When treatment is withdrawn or withheld, if death then results, it is primarily the result of the underlying disease.
Answer by Lois Snyder, Director,
Center for Ethics and Professionalism, American College of Physicians-
American Society of Internal Medicine, Philadelphia, Pennsylvania
TALKING TO A LAWYER
Refusal of Life-Sustaining Treatment (Part 1)
Q. My mother is terminally ill, and she wants to die. Still, there are new treatments that could extend her life. Following her wishes, her doctor refuses to go ahead with the treatment, even though my mother will surely die without it. Can I take legal action to make the two of them agree to the treatment?
A. A competent adult has the right to refuse medical treatment, including life-sustaining treatment. This is now well established in law and medical ethics. If there is good reason to challenge your mother’s ability to make decisions, you could try to have a court declare her incompetent. But refusal of life-sustaining treatment is not an indication of incompetence.
Answer by Lois Snyder, Director,
Center for Ethics and Professionalism, American College of Physicians-
American Society of Internal Medicine, Philadelphia, Pennsylvania
TALKING TO A LAWYER
Refusal of Life-Sustaining Treatment (Part 2)
Q. I want to pursue this further. What is the process of becoming my mother’s guardian? If I succeed, can I order the new treatment for her?
A. If your mother lacks capacity to make health care decisions for herself, you may petition the court to be her guardian to make these decisions. The court will appoint a lawyer to represent your mother at a hearing concerning her capacity. Should your mother be found unable to make such decisions, the court will consider a variety of factors concerning your appointment. Among the factors that the court will consider is her terminal prognosis even with treatment, her wishes, and the invasiveness and consequences of the treatment. Additionally the probability of success and the potential side effects of the new therapy will be considered by the court.
Should you lose the hearing, as a practical matter you will not have any further recourse. If you win and are appointed guardian, you could not compel your mother’s physician to provide the new therapy. However you could obtain the services of another physician who was willing to provide the treatment to a terminally ill unwilling patient.
Answer by Salvatore J. Russo, Executive Senior Counsel,
New York City Health & Hospitals Corporation,
New York, New York
It is understandable to safeguard your private papers, but you should remember that your family will need these papers in order to carry out your wishes. It is not uncommon for family members to know that the person in the hospital has an advance directive and then not be able to find the document. Tell your family where to find your advance directive and give them a copy of the document.
You should also give a copy to your personal physician and your lawyer and have a copy with you while traveling.
States also vary in the type of proof needed to remove life-sustaining treatment. If you executed a health care advance directive appointing an agent to make decisions for you when you are no longer able to do so and you granted your agent authority to remove life-sustaining equipment, that should suffice. In other circumstances, the person making the decision for you may have to prove that you clearly wanted the treatment to be discontinued under the circumstances. Remember, although you have a constitutional right to forgo medical treatment, you (or your loved one) will have to prove that you wanted to assert that right. This is easier to prove if you put your wishes in writing; but, as noted above, oral instructions can be effective, especially if there is some written record to verify them, as in a physician’s notes.
If you don’t put anything in writing, your wishes might not be followed unless all of the members of your immediate family agree to removal of treatment. In most cases doctors will abide by the wishes of your family as long as your family can reach an agreement on whether the treatment should be stopped. If even one person disagrees, doctors will usually err on the side of caution and continue treatment, unless your family can prove that you would want the treatment to stop. A number of states, though, have laws to cover this type of situation. In those states, such as Illinois, there is a legal hierarchy of relatives who can make health care decisions for you if you do not have an advance directive. Some of these states even recognize a close friend as a potential surrogate in the absence of family.
Until you have something in writing (and even after), be sure to talk to your doctor and family members about what you would want them to do if you were placed on life-sustaining treatment. This may or may not be enough to convince a court of your wishes, but it will help in guiding your doctor and family in making decisions regarding your care and may help avoid a trip to court altogether.
TALKING TO A LAWYER
No Next of Kin
Q. I have a patient who is incapacitated and unable to make decisions for himself. He has no family or close friends. Whom do I turn to when decisions about his medical care need to be made?
A. In states that have them, you can contact the state guardianship office to set in motion the process of obtaining a guardian for your patient. If your patient is hospitalized, a hospital social worker can do this. In a few states, including Alabama and Arizona, ethics committees, in cooperation with the physician, are authorized to act as decision makers about certain kinds of treatment when there is no family member or friend to do so.
Answer by Bethany Spielman,
Department of Medical Humanities,
Southern Illinois University School of Medicine,
Springfield, Illinois
There is a good reason for you to have to prove that you do not want life-sustaining treatment. First and foremost, doctors want to make sure that it is their patients’ wishes that are being carried out, and also doctors want to protect themselves from liability. Proof of your wishes is needed to assure the doctors that they are in fact carrying out your desires and not those of others who may not have your best interests at heart.
Many states allow for living wills, durable powers of attorney for health care, or some other type of formal recognition of the right of someone else to make medical decisions for you if you are unable to make those decisions for yourself. These forms vary from state to state, but the common goal is to help your family make the decision you would make if you were able to have a say in whether to continue treatment. These directives let you decide in advance about life support and/or pick someone to make decisions for you about medical treatment.
HEALTH CARE ADVANCE DIRECTIVE—SAMPLE
Appendix C contains a model advance directive prepared by AARP, the ABA, and the AMA. It combines a living will and a durable power of attorney for health care. This is a general form that meets the requirements of most states. Even if it does not meet the requirements of your state, it may provide an effective statement of your wishes if you cannot speak for yourself.
The sample health care advance directive included in this book permits you to avoid any possible confusion caused by having both a living will and a durable health care power of attorney. It simply encompasses both in a single document. If you do have both in separate documents, you might be heading for difficulty in some states because the two documents might conflict given the facts of a particular case. For example, the living will is often vague or unclear and could potentially thwart the legitimate powers of your health care agent, who is trying to carry out your wishes as reflected in the health care power of attorney. Check with an attorney or other information source to find out what the law requires in your state. You can also get more specific information about your state’s laws by contacting Partnership for Caring, 1035 9th St. NW, Washington, DC 20007 (800-989-9455).
As noted in the preceding section, we recommend wherever possible that you execute a comprehensive health care advance directive, as we consider it to be superior in flexibility and usefulness to a living will. Nonetheless, because so many Americans are familiar with the concept of a living will and may have one, we discuss them in this section.
A living will is not actually a will because it does not dispose of property and because it takes effect while you are still alive. It is your written statement about your feelings regarding the use of life-sustaining medical care if you become terminally ill and unable to communicate, if you are in a persistently vegetative state, or if you become irreversibly comatose.
LEARNING THE LINGO
Living will: A document that tells doctors and family members whether you want to be placed on life support in the event that you are unable to tell them yourself because of illness or injury. It is not an actual will and does not require a lawyer’s help to execute, but it is often drafted at the same time as a real will. Many lawyers include living wills or other advance directives as part of their estate planning services for clients.
If the living will is properly prepared and clearly states your wishes, the hospital or the doctor will be immune from criminal prosecution or malpractice for withholding treatment. Do not be afraid that writing a living will means your doctor will abandon you too soon. You can specify in your living will that you want your doctor to try all possible treatment until there is no hope of recovery. Whatever your wishes, put them in writing so that your doctor and loved ones are able to carry them out.
These days you can walk into any office supply store and buy a general living will form. Laws vary by state, though, so these forms may not be tailored according to the laws in your state. Your lawyer can help you draft one that meets your state’s requirements.
If you decide to write a living will yourself, be specific. One of the biggest problems with living wills is that many are either too vague (i.e., “extraordinary treatment”) or so specific as to be inflexible. Writing a living will is much like a riddle. There are simply so many gray areas and changing circumstances when it comes to the end of life that it is impossible to predict every possible situation that may arise. That is one reason why more people are turning to health care advance directives that incorporate a durable health care power of attorney. That power gives your agent more room to deal with other kinds of disabilities, injuries, or illnesses that you might suffer.
A durable power of attorney for health care is a written document whereby you appoint another person to act for you as your agent if you become disabled and can no longer make medical decisions for yourself. This power of attorney applies only to health care decisions.
As noted earlier, such a power is incorporated in our sample health care advance directive. This discussion will help you understand how it works as part of that document or standing alone.
Durable power of attorney differs from a living will in that it designates a person to make decisions for you regarding life-sustaining treatment. This power of attorney applies only to decisions regarding health care. Durable means that it remains in effect after you become incapacitated. It ends when you die or when you cancel it (which you can do at any time while competent).
DURABLE POWERS OF ATTORNEY FOR HEALTH CARE
In all states you will definitely want to have a durable power of attorney for health care, preferably as part of an overall health care advance directive, as long as there is someone you trust to make decisions for you.
A durable power of attorney for health care offers three advantages over a living will.
The laws on creating a durable power of attorney for health care vary by state, but usually it has to (1) be signed, (2) witnessed or notarized, (3) specify that it is durable, and (4) name the person you want to be your agent. This person can be your spouse or child or anyone else you choose. A durable power of attorney for health care can limit your agent to decisions about life-sustaining treatment, or it can give your agent the authority to make decisions about things such as nursing homes or surgeries.
A durable power of attorney for health care is much more flexible than a living will. Keep in mind that this is a tool for your agent. Be sure to discuss your values and wishes with the person you appoint as your agent. He or she will need this information to carry out your desires if you should become incapacitated. Another point to consider is that being an agent is entirely voluntary. In other words, the person you choose to be your agent must agree to act in that role for you. It’s a good idea to name an alternative agent in case your agent will not or cannot serve. If there is no one you trust to act for you, perhaps you should content yourself with a living will.
SELF-TEST
Questions to ask yourself before making advance directives:
What are my values?
Who should be my agent?
Keep in mind that in some states health care providers who are treating you are not allowed to act as your agent.
What guidelines should I impose?
You need to leave your agent some flexibility if the unexpected happens. If you have specific wishes, however, you should write them down to help guide your agent in making decisions on your behalf.
