In the spring of 2005, an American woman named Terri Schiavo, who had been in a coma since 1990, became the center of a national debate about when to “pull the plug” on someone who is on life support, and who can make that decision. The Schiavo case consumed the attention of the American public, the news media and even the highest levels of the federal government. On March 21, 2005, Congress passed a bill transferring jurisdiction of Terri Schiavo’s case from a Florida state court to a U.S. District Court [ref].
The two main parties in the conflict were Terri’s husband, Michael, and her parents, Bob and Mary Schindler. Several doctors had told Michael Schiavo that Terri was in a "persistent vegetative state" and that she had no hope for recovery, so he requested her feeding tube to be removed. The Schindlers disagreed and wished for the tube to remain in Terri. As her husband and court-appointed guardian, Michael Schiavo had the legal authority to have the feeding tube removed. And despite a legal battle lasting years and protests from high-ranking members of Congress, the courts sided with Michael Schiavo. (The United States Supreme Court refused several times to hear the case, instead upholding the decisions of lower courts.) On March 18, 2005, Terri Schiavo’s feeding tube was removed, and she died 13 days later. An autopsy revealed that her brain had shriveled to half its normal size and had suffered significant damage and scarring [ref].
The case of Terri Schiavo wasn’t the first of its type to become the center of a public debate. On April 14, 1975, Karen Ann Quinlan collapsed at a party after ingesting alcohol and valium. She survived but entered a persistent vegetative state. Her parents did not want to pursue “extraordinary means” to keep her alive, believing she was beyond recovery, but hospital officials wanted to keep her on a respirator [ref]. After two court cases, New Jersey’s Supreme Court awarded Karen’s parents legal authority over her medical care. Her parents removed her from the respirator, but Karen lived for ten more years before dying on June 11, 1985. Still, she never awoke from her coma before finally passing away.
Karen Ann Quinlan’s case established an important precedent regarding “right to die” cases. It also spurred debate about the subject and pushed many hospitals, nursing homes and hospices to establish ethics committees. Now, every state has laws about advance directives, commonly called living wills, and these documents have become an important tool for planning for one’s future medical care. It’s worth noting that Terri Schiavo did not have a living will, which likely contributed to the court battle surrounding her medical care.
A living will is a legal document that gives instructions for medical care in the event that someone is unable to communicate due to a severe injury, terminal illness or other medical condition. Also called a health care declaration, advance directive, medical power of attorney or patient advocate designation, a living will is not necessarily an easy subject to consider, but it is an important one. An estimated one third of Americans have had to decide whether to keep a loved one alive using “extraordinary means” [ref].
In this article, we’ll discuss why you may need a living will, how they work and how to avoid many of the ethical, legal and emotional complications that can accompany this process. We’ll also look at the issue of a health care proxy, someone whom you entrust with making medical decisions for you in case you can’t.
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Living Will Basics
There are some legal requirements that must be met in order to have a living will. You must be at least 18 years old and of “sound mind.” You must be able to sign the documents, or if unable to, you can direct someone else to sign them. Depending on state law, you may need witnesses and/or a notary public present. You can change or revoke your living will at any time, though it’s important to notify your doctors and family before doing so.
The living will takes effect when a doctor determines that you lack the capacity to make your own health care decisions. In some states, it’s possible to have a health care proxy take control of your medical care immediately. It may be preferable to have a trusted person in charge of your care. We’ll talk about health care proxies later in the article.
Doctors are required to obey a living will. However, some hospitals have policies about living wills that they’re required to tell you about when you’re admitted for care. (Some hospitals even require you to have a living will in order to be admitted.) If the hospital’s policy somehow conflicts with your living will, most state laws require that they make a reasonable effort to transfer you to another hospital that will follow the document. Pregnancy is one major exception when doctors may not be bound to the terms of a living will. In fact, in many states, a living will is not valid at all if a woman is pregnant. In other cases, for a woman in her second or third trimester, doctors may disregard the living will -- even if the woman’s condition is terminal or the living will mandates no extraordinary measures -- in hopes of keeping the woman alive until the baby can survive outside the womb.
If for some reason you don’t have a living will, medical decisions are left to the discretion of the doctors treating you, but they may request authorization from close relatives for serious procedures.
In the next section, we’ll look at the contents of a living will.
Contents of a Living Will
Most living wills contain conditional wishes for different types of situations. For example, would certain painful treatments be tolerated if there were a chance for recovery? Or, would you refuse a feeding tube if it would be required indefinitely?
One of the most important aspects of writing a living will is deciding what to do if you are terminally ill. Some people don't want treatment that would extend life for a short period of time if their desired quality of life can't be restored. Others do want life extended for as long as possible, even if they may be in pain, unconscious or unable to communicate.
The various types of disability leave this portion of a living will more open to dispute as doctors, patients and family members frequently have different values and expectations. Additionally, some types of chronic ailments or permanent disabilities may be better dealt with than others, depending on the individual.
A person must decide which circumstances he or she wouldn't be able to endure and should specifically define these circumstances with three criteria in mind [ref]:
- type of injury or illness
- prognosis, especially with regards to permanence or irreversibility
These descriptions should be clear and medical in nature -- saying that you don't want to be in a "hopeless condition" is less clear than requesting not to be on a respirator.
It generally takes time to determine if someone will be permanently disabled or if some measure of recovery is possible. If someone experiences cardiac arrest and suffers a lack of oxygen to the brain, he or she will likely be brain damaged, especially if oxygen was cut off for an extended period of time. Still, in many cases it can take weeks of observation before a definitive prognosis can be made. Someone's condition may also change unexpectedly. That is why it's important not to specify time limits in a living will. Instead, base your requests for treatment (or withholding treatment) on prospects for recovery, the likelihood of permanent pain or discomfort and the judgments of your doctors.
When should I refuse treatment?
If you don't want certain treatments, it's important to identify those in a living will. Many living wills tell physicians to withhold "extraordinary care" or "life-sustaining or life-prolonging" treatments, but those terms can be unclear [ref]. Similarly, some living wills distinguish between "ordinary" and "extraordinary" care, but very complex or technologically advanced procedures can be common now. Keep the specific details in mind: a patient may not mind having a respirator if he has a collapsed lung and is expected to recover but would refuse one if he is in an irreversible coma.
Other reasons to refuse treatment may include:
- Not worth the pain or risk
- Will prolong life but in an uncomfortable state (i.e. long, burdensome dialysis sessions)
- If there's a procedure you know that you wouldn't want under any circumstances
Do Not Resuscitate (DNR) Order
A DNR Order prevents doctors and emergency personnel from giving you cardiopulmonary resuscitation (CPR). This order can be added to your medical record, stamped on a bracelet or kept close at hand in case paramedics come to your home, hospice, etc. A DNR Order is frequently used in tandem with a living will -- for example, if someone is terminally ill and doesn't want to be resuscitated should he or she stop breathing.
For an example of what a living will looks like, follow this link.
Making a Living Will
The best time to consider a living will is when you're in a calm frame of mind and if possible, in reasonably good health. Also, keep in mind the case of Karen Ann Quinlan: she was only 21 years old when she fell into a coma. The cause of Terri Schiavo's coma is still unknown [ref]. In other words, there's no specific age or state of health that marks when you should decide on a living will and health care proxy. Unfortunately serious medical events can happen at almost any time and to anyone.
Before drafting a living will, you should talk with your doctor, family and friends. Share your feelings and opinions with them so that they are informed about your thoughts. Being open and communicative about this process will help in case a situation does arise where you may need to use your living will. Your friends and family will know to look at the living will and that you put time and consideration into your decisions. Conflict among family members may also be prevented if they are aware of your wishes.
It's also important to consider how this process may affect your friends and family emotionally and even financially. In addition to being costly, long term care for someone who is incapacitated or otherwise beyond recovery is an intense, draining process.
Senior centers can provide help, advice and reference documents, and some non-profit organizations or clinics can as well. Be wary of living will seminars that charge a fee -- senior centers and hospitals often provide the same service for free. Pre-made forms are available, but it's important to tailor them to your needs.
An attorney is a key partner in drafting a living will. He or she will be able to advise you on its legal implications and to adapt the necessary forms so that they conform to state law.
If you spend significant time in more than one state, make sure your living will applies in both states. Though hiring a lawyer isn't required, one who is experienced drafting wills can be helpful for answering such questions.
After your living will is complete, give a copy to your doctor so that it can be put into your medical file. It may be wise to keep a card on you or to wear a bracelet stating that you have a living will on file. You should also give a copy of your living will to your health care proxy (more on health care proxies below) and make sure that he or she has a clear knowledge of your wishes.
Health Care Proxy
A health care proxy -- also known as a health care power of attorney, durable power of attorney for health care or a medical power of attorney -- is a person you authorize to make medical decisions for you should you be incapacitated or unable to understand your situation.
Some people only give a health care proxy permission to carry out what’s in the living will, but it may be wiser to give more latitude to someone that you trust completely. The rights of a health care proxy vary between states, so it’s best to ask a lawyer about the law in your state. Generally, a proxy can make decisions about hiring or firing doctors, authorizing procedures, which health care provider to use, disclosure of medical records and whether to limit visitation rights. Health care proxies can even make decisions in the event of a death, such as whether to conduct an autopsy or to donate organs.
Choosing a proxy can be a delicate and difficult process. The proxy should be someone who knows you well, a friend or loved one whom you can trust to follow through on your requests. But you should also remember that this person may have to fight with doctors, friends or family to see your wishes done. For that reason, it’s important to name someone whom you trust with this ability and who is also willing to act as your proxy. Your proxy should live nearby (preferably in your town or city) in case he or she has to be with you at the hospital over a period of weeks, months or even longer.
For more information on living wills and related topics, check out the links on the next page.
Related HowStuffWorks Articles
More Great Links
- ”History.” http://www.karenannquinlanhospice.org/History.htm
- “Living Wills and Healthcare Power of Attorney.” FindLaw. http://estate.findlaw.com/estate-planning/living-wills/
- “Right to Die: Red Flags.” Public Agenda. http://www.publicagenda.org/issues/red_flags.cfm?issue_type=right2die
- ”Understanding the Durable Power of Attorney for Health Care.” DHR Division of Aging Services. http://aging.dhr.georgia.gov/DHR-DAS/DHR-DAS_Publications/DPAHCVR.pdf
- Durable Power of Attorney for Health Care § Title 31, Chapter 36 of O.C.G.A. § 31-36-10, 2006. http://w3.lexis-nexis.com/hottopics/gacode/default.asp
- Clark, Elizabeth G. and Freer, Jack P. “The Living Will: A Guide to Health Care Decision Making.” http://wings.buffalo.edu/faculty/research/bioethics/lwill.html
- “Terri Schiavo has died.” 3/31/2005. CNN.com. http://www.cnn.com/2005/LAW/03/31/schiavo/index.html
- Brown, David and Murray, Shailagh. “Schiavo Autopsy Released.” 6/16/2005. The Washington Post. http://www.washingtonpost.com/wp-dyn/content/article/2005/06/15/AR2005061500512.html