Dec. 3, 1999 (Atlanta) -- They made their decisions under a time of extreme stress, but Israeli researchers have found that, by and large, a group of adult children whose parents were dying 6 years ago don't regret the past medical choices they made for their loved ones. But at the same time the study finds that many of these children had no idea what their parents' wishes were in the first place.
"Fifty percent did not know what ... their parents wanted," says Moshe Sonnenblick, MD, a study author from the Department of Geriatrics at the Shaare Zedek Medical Center in Jerusalem. "They never discussed it. The parents never even mentioned it."
Sonnenblick says another reason offspring in Israel can be burdened with life and death decisions is that living wills -- which spell out a parent's wishes in the event of a terminal illness -- are rare in that country, with just 1% to 2% of patients having them.
The study, which appears in the latest issue of The Journal of the American Geriatric Society, was split into two phases. The first took place 6 years ago, when researchers interviewed the children of 48 terminally ill patients, to test their attitudes towards three "life-sustaining" medical issues. These included the DNR or 'do not resuscitate' order, the continuance of food and medicine, and euthanasia.
Six years later, the researchers located about half of those surveyed and interviewed them again. While some expressed second thoughts about what they'd decided for their parents, overall attitudes toward life-sustaining measures didn't change. There was continued support for feeding and medicating dying patients -- but at the same time, not resuscitating them if they stopped breathing -- as well as overwhelming opposition to euthanasia.
Where significant differences did crop up was in a separate group that had not gone through the death of a close relative. Twice the number of these people -- nearly 50% -- said they would request a DNR order, and almost twice as many said they would request euthanasia. But the researchers found that about half in that group had never discussed these options with the very people they would affect the most -- their parents.
The study results are no surprise to Norman Ables, Ph.D., professor of psychology at Michigan State University and past president of the American Psychological Association. "These are such excruciating decisions made under such stressful situations, it seems most people wouldn't want to change their minds about it," he says -- mainly because people want to believe they did the right, best thing for their loved one.
"The difficulty, of course, is you can't always tell when the end of life is going to occur," he adds, as some terminally ill patients can linger for weeks or even months.
Given the complexities involved in these decisions, one physician recommends families discuss their own mortality. "You don't have to anticipate getting Alzheimer's tomorrow, but you do have to anticipate the possibility of getting into a car accident tomorrow," says Lissy Jarvik, MD, PhD, professor emeritus at the University of California, Los Angeles.
She says those discussions should take place relatively early -- perhaps when the children have reached their twenties -- and that if a living will has been executed everyone should know where it is. "At the last minute and under pressure, often the living will can't be found," she says, "and the children don't know one exists."
And in most cases in the U.S., one won't exist. According to John Banja, PhD, an associate professor in the department of rehabilitation medicine at Emory University in Atlanta, only about 25% of patients have one -- and in some situations they offer no protection. For example, "[there is no protection] when a family member can't tolerate the idea -- even with a valid living will -- that a health care provider is going to discontinue life-prolonging treatment," Banja says. Threats to sue often follow, and he says "invariably" the health care provider backs down.
An even more powerful legal instrument is the Durable Power of Attorney for Health Care. It gives another person power over medical decisions, and its scope goes beyond that of the living will. Banja says while the living will only covers three prognoses: terminal illness, persistent vegetative state, and irreversible coma, the power of attorney covers other situations in which a patient may be extremely sick.
But before settling on an "end-of-life" plan, Banja says families should know some medical facts -- such as the relative futility of trying to resuscitate an elderly person. He says while television shows such as "ER" show "phenomenal" resuscitation rates -- with around 70% of patients recovering -- the success rate in sick, elderly patients can be more like 5%.
And Banja adds that in some cases resuscitation does more harm than good. "I have been at some hospitals where the nursing staff will take one look at a patient in the ICU and say, 'No way do I want to do cardiopulmonary resuscitation on this patient.' It's because the patient is in such bad shape."
- In a group of adult children whose parents were dying 6 years ago, most did not regret the medical choices they had made for their parents, even though about half did not know what their parents' wishes were.
- Families should discuss their mortality relatively early, and everyone should know whether a living will exists and where it is located.
- In a second group of people, who had not gone through the death of a close relative, twice as many said they would request a DNR order or euthanasia.