Decisions About Life & Death
By Lynn N. Duke
NYT Regional Newspapers
A living will is important, but a durable power of attorney for health care may protect your rights better
The unprecedented public debate over the fate of Terri Schiavo has many people wondering: “What if that happened to me?”
Many assume that if the Florida woman (who doctors say has been in a persistent vegetative state for 15 years) had had a living will, the conflict between her husband and parents about whether to remove her feeding tube would never have become public, never mind making it all the way to the U.S. Supreme Court.
But some experts say that a living will by itself may not be enough to guarantee that your wishes for end-of-life care are carried out.
A living will is one of two documents that are considered an advance directive, the other being a durable power of attorney for health care. A living will typically spells out what you do or do not want done in case illness or injury incapacitates you. A living will also usually names a health care surrogate who will ensure those wishes are met.
A durable power of attorney for health care makes no specific stipulations about care, but designates a person to make all of your medical decisions for you once you cannot make them for yourself.
But living wills may give people a false sense of security and, in the worst case, could actually prevent their caregivers from carrying out their wishes. For example, advances in technology could create life-prolonging situations unheard of when you made out the will.
“The most important thing is to name a health care proxy. They’re able to make decisions in assessment of the situation. You want to give them authority, but don’t give them binding instructions,” said Lois Shepherd, the D’Alemberte professor of law at the Florida State University College of Law. “I want someone close to me trying to make that decision at that moment, rather than me trying to anticipate years ahead of time what might happen.”
The Advent of Life Support
Right-to-die cases were almost non-existent until medical technology allowing long-term, artificial life support became more widespread in the 1960s. And it wasn’t until 1975 that a family’s wishes to let a loved one die needed a court order to succeed. Karen Ann Quinlan was 21 when she was left severely brain damaged by a drug and alcohol overdose in April 1975. When doctors refused to remove her from a ventilator, her parents went to court seeking the right to let her die. The New Jersey Supreme Court granted that right. Ironically, once the ventilator was removed, Quinlan began breathing on her own and lived in a coma for another 10 years before succumbing to pneumonia.
Since then, advance directives in one form or another have become recognized in all 50 states. The Patient Self Determination Act, passed in 1990, requires all health care agencies receiving federal money (Medicare or Medicaid) to inform patients of their right to direct their own health care, their right to accept or refuse medical treatment, their right to prepare an advance directive and make one available to them if they wish, said Angela Fagerlin, a research scientist at the University of Michigan, whose studies include improving health care decisions. .
Any advance directive, whether a living will or a durable power of attorney for health care, can be drawn up without an attorney. Statutes vary from state-to-state, but most require two witnesses, neither or which can be your named health care surrogate, and at least one of whom cannot be a spouse or blood relative.
Advance directive forms can be found online, and at websites like Aging with Dignity, which offers a document called Five Wishes http://www.agingwithdignity.org/5wishes.html. In addition to providing a living will and naming a health care surrogate, Five Wishes allows people to address other end-of-life issues, like what kind of environment they want to be in (music? incense?), how they want to be treated and spiritual requests. Five Wishes is recognized as a legal document in 36 states. In the remaining 14, it can be used as an attachment to the form recognized by that state.
Despite the ease of obtaining an advance directive, fewer than 20 percent of adult Americans have a living will, Fagerlin said. Among hospital patients in one study, fewer than 25 percent had accurate records about whether they had a living will.
Whether you use a living will, a durable power of attorney for health care, or both, whom you choose to execute your wishes is important. But it may not necessarily be your closest blood relative. For example, if the person who would seem the logical choice to be your surrogate has strong religious beliefs that differ from your own, they may not be comfortable making the end-of-life decisions you want.
“This is best done when families are not in a crisis situation,” said Ken Doka, a senior consultant to the Hospice Foundation of America in Washington, D.C. “The Schiavo case has taught us three things: Everyone needs to be thinking about an advance directive; you really have to get a surrogate who shares your values, and you really need to discuss your wishes with all shareholders involved.”
That includes your doctor, who should keep a copy of your advance directive in your medical records.
And try to be specific. For example, make sure your health care surrogate understands how you would define “heroic measures” to keep you alive; or what you would consider a “short period of time” to be kept alive. For some people it’s a couple of hours, for others weeks or months.
Discussing the options
It’s hard for many people to talk about death and dying. But discussing end-of-life care in the context of making sure a loved one is treated according to their wishes can ease family members into the conversation, Doka said.
“If it’s a parent, you can start out by saying, ‘You’ve told me about your will, but who’s your health care proxy?’ and take it from there,” Doka said.
People with no immediate family, or who are estranged from their family, should turn to their circle of close friends or faith community for a surrogate who they trust, Dako said.
Faith-based health care institutions that will not comply with your advance directive must transfer you to a facility that will, Shepherd said.
Advance directives are not just for people of advanced age. And those who could linger the longest in a vegetative state, people in their 20s and 30s, are also the least likely to have an advance directive, Fagerlin said.
They may also have the hardest time imagining end-of-life conditions, so they must also be cautious.
“If you put something ambiguous, treatment instructions could be used to counter the authority of your treatment agent,” said Bruce Jennings, a senior research scholar at the Hastings Center, a bioethics research institute in Garrison, N.Y. “You have to be careful when you write out treatment directives, because you have to realize they’re going to be interpreted in unknown circumstances.”
In light of the Schiavo controversy, Jennings recommended putting in writing that your health care proxy knows your wishes specifically relating to artificial nutrition and hydration (a feeding tube).
“Talk to your agent, express your concerns and your wishes, but you don’t necessarily want to write them down so that the hospital’s lawyers can get at it and twist your words,” Jennings said. “We can achieve good dying in this country. It’s within our grasp. We just have to make the effort.”