March 11, 2003
By Jamie Talan
Deciding how to die turns out to be no easy task, as the case of 92-year-old Margaret Russell illustrates.
Russell is the Lynbrook woman who lived for another six weeks after a legal guardian instructed that artificial feeding - nutrients fed into her stomach through a tube - be ceased, based on the guardian's interpretation of documents Russell had signed over the years. Russell's relatives disputed the order, insisting that her condition after two strokes did not warrant such a measure and that she should be fed by artificial means to see if she could recover sufficiently to resume swallowing. Last week, a judge refused to intervene, and early yesterday, Russell died.
Advance directives - living wills and proxies - to plan for end-of-life care generally lay out scenarios to be addressed and what kinds of medical interventions are desired. But when a person's health is failing, the instructions in the directive can seem ambiguous or at least open to varying interpretations. More than that, say some experts in geriatric care, the documents don't cover the range of possibilities.
And as medical technology grows even more sophisticated, scientists, doctors and ethicists say that end-of-life decisions that millions of people face each year are becoming increasingly complex.
In the case of Margaret Russell, for instance, no one thought to ask her two critical questions, said Dr. Joanne Lynn, director of the Washington Center for Palliative Care studies in Washington, D.C.:
"If artificial feeding and hydration could get you over a tough spot until you could resume eating, and it could be stopped at any point if it isn't helping, would you [want it]?"
"And then, to what extent would you want health care providers to yield to the views of the family" if they are contrary to the directive?
These types of questions are not addressed in the standard health proxy or living will forms, experts say. And studies have indicated that most people asked these questions would want artificial feeding, at least as a temporary measure. They also say they would respect and follow the wishes of loved ones in failing health if doing otherwise would bring anguish to the family, Lynn said.
Lynn, a 51-year-old geriatrician, has taken care of more than 3,000 patients in life's final phase. Her own directive specifies that health care providers heed the instructions of her loved ones "and not use anything I ever wrote or said to make these decisions."
"I want my family to make peace with whatever is happening," she said.
Experts who have grappled with end- of-life issues said it is probably better to designate a health care proxy - someone who clearly knows and respects your wishes - rather than rely on a living will. It's essential, they say, to have an honest and open conversation long before such decisions need to be made.
"The majority of people don't have the 'death talk,'" said Dr. Kathleen M. Foley, the director of the Project on Death in America, which studies end-of-life care and the process of dying. "We want people to have these discussions before they get to a place where they might not be able to tell anyone want they want."
Dr. Judith Ahronheim, chief of geriatrics at St. Vincent's Hospital in Manhattan, is a strong advocate of discussions with loved ones about the health-care options when health is failing. She said that cases like Russell's are "unfortunately too common."
"People who say that they don't want this and they want that are not very sophisticated in the language of medicine," she said. "They don't necessarily have an idea of these treatments and what avoiding them entails."
And she wonders why, in Russell's case, doctors wouldn't permit a morsel of soft food to be brought to her lips. "She never said, 'Don't give me pleasure by giving me a tasty morsel,'" Ahronheim said. "There are no laws saying that you can't spoon-feed someone. It won't make her healthy or give her enough nutrition, but it's a positive, humane thing to do."
Eighty-five percent of deaths in hospitals and 90 percent of deaths in long- term care nursing facilities are preceded by the cessation of life- sustaining treatments, according to Dr. Steven Miles, a professor of medicine and a geriatrician at the Center for Bioethics at the University of Minnesota. That's about 2 million deaths a year that involve withdrawing, withholding or refusing such care.
Increasingly, end-of-life cases are being decided in courtrooms. Miles said nationwide there have been about 10,000 trial court decisions, most of them health care proxy disputes. About 60 to 70 cases have resulted in appellate court decisions since the late '70s.
"Dying is inherently messy," said Dr. Daniel Sulmasy, director of ethics at St. Vincent's Hospital in Manhattan. "And the law is clumsy in regulating that process."
"I look at advanced care directives with a great deal of humility," added Charles Sabatino, an assistant director of the American Bar Association's commission on law and aging. "It is never a black-and-white issue."
Despite health care proxy laws, only 15 percent of people have actually filled out such a document, experts say.
A 1989 New York law allows people to designate a proxy, someone to make decisions if the patient is no longer capable of making intentions clear. And though 47 states have legislation on living wills - in which an individual directs what health care is to be provided - New York does not. Nevertheless, experts say health care providers and the courts take such documents seriously.
A number of studies suggest that decisions based on such directives might not follow the intentions as clearly as anticipated. According to Sulmasy, researchers have brought couples into a laboratory, separated them and asked various "What if?" questions:
What if you are in a coma, and a respirator is necessary for breathing to continue?
What if a feeding tube, inserted through the abdominal wall into the stomach, were necessary to provide nutrients and hydration?
What if a medical event rendered you incapable of communicating with loved ones?
And what if your loved one did not follow the instructions in your living will - and did just the opposite?
The results suggest that loved ones aren't really talking about the "what ifs" in a way that is heard and interpreted correctly: Only 54 percent of husbands and wives answered all the questions identically.
Nevertheless, Sulmasy said, relatives are a critical resource in this end-of-life decision making. New York's proxy law is intended to protect the patient's wishes to choose appropriate medical treatment. "The fact that these laws don't fit the reality of decision making has been ignored," Sulmasy said. "In complex cases, the law ought to defer to family members."
But complex cases sometimes begin with fairly simple documents. Some living wills and health care proxies provide only broad-brush strokes about medical intervention. Margaret Russell's directed that "life- sustaining procedures should be withheld or withdrawn if I have an illness, disease or injury, or experience extreme mental deterioration, such that there is no reasonable expectation of recovering or regaining a meaningful quality of life." In 1995, when she signed a one-page living will and a health proxy naming her nephew, she was in good health and said that she would not want "surgery, antibiotics, cardiac resuscitation, respiratory support or artificially administered feeding and fluids."
The case of Mary O'Connor vs. Westchester County Medical Center is routinely cited in end- of-life care legal decisions.
O'Connor had spent her career working in hospitals, and her two daughters were nurses. As a result, she knew what she wanted: no machines to keep her body going. When she suffered a stroke, her family argued that a ventilator and feeding tube were exactly what she didn't want. The court initially agreed. But an appeal took the case to the desk of then- Chief Justice Sol Wachtler in 1988, before New York had a health proxy law.
Wachtler decided that there must be "clear and convincing evidence" about the patient's wishes before decisions to withdraw such intervention should be carried out. "Even though she could sit up and watch television and 60 percent of her answers were relevant," Wachtler said in a recent interview, "she could no longer talk, and there was not enough evidence that she would want hydration and fluids removed."
So he ruled that the hospital could continue to use such medical interventions. Soon thereafter, O'Connor died.
"There is a place in public life for recognizing the difficulty that King Solomon faced in the Bible," Joanne Lynn said. "It is impossible for anyone to know where they will end up."
As important as it is for patients to live and die as peacefully as possible, it is equally important for their loved ones to find peace, Miles said. "Although the health care system treats death as a medical event, it is a social event," he said.
"As a person dies, they teach the next generation how to face death, and they teach their children how to be caretakers," he said. "In medicalizing and legalizing these decisions, we disrupt the intergeneration teaching which ultimately helps people make these tough decisions about dying."
1) The majority of people dont have the "death talk." We want people to have these discussions before they get to a place where they might not be able to tell anyone what they want.- Dr. Kathleen M. Foley, director of the Project on Death in America 2) There is a place in public life for recognizing the difficulty that King Solomon faced in the Bible. It is impossible for anyone to know where they will end up.- Joanne Lynn, director of the Washington Home Center for Palliative Care Studies
Three hundred people were asked:
If you slipped into a coma tomorrow and your surrogate was at your bedside, would you want treatment to follow instructions you had provided previously? Or, if your surrogate told us to do the opposite, should we follow his/her advice?
Fifty-four percent chose to have their surrogates make decisions in most circumstances. Among their reasons:
"I feel my sister's decision would be made out of love and caring for me."
"My father would make smart decisions."
"I trust my wife's judgment."
"If I had no control, then I feel it is best for my loved ones to do what's best. ... They should make decisions that benefit them as well as me."
Forty-six percent wanted their own wishes followed. Among their reasons:
"I want to make the choices for myself."
"It's my life."
"I don't want to put my husband through making decisions."
"I don't want to be a burden to her ever."
"[My] daughter would want to prolong life. I would say take me off everything."
"My wife is emotional, and I don't think she could make a good judgment."
"He might get sympathetic and want to prolong things."
SOURCE: The Journal of Clinical Ethics; interviews conducted with 300 patients from Johns Hopkins Hospital, the Johns Hopkins Bayview Medical Center and the Georgetown University Medical Center