While most Americans believe that in some circumstances patients should be allowed to die, the minority who believe doctors should always do everything possible to keep someone alive has more than doubled since 1990, said a new survey from the Pew Research Center.
Two-thirds of those asked about end-of-life care for others said a patient should be allowed to die in certain cases; 31 percent said there are no such circumstances. In 1990, 15 percent said doctors and other health professionals should "always do everything possible to save a patient." In 2005, that number was 22 percent.
"That's almost a doubling in the share of adults who say medical staff should always do what they can," said Cary Funk, senior researcher at Pew. The change is two-pronged, she added, with fewer people taking the view intervening may not always be a good idea, along with more people who express an opinion at all. In earlier surveys, the percentage with no opinion or not responding was higher.
A different end
One of the things families haven't gotten their heads around is the change in how people are arriving at the end of their lives, said Dr. Joanne Lynn, director of the Altarum institute in Washington, D.C., and who was not involved in Pew's survey. That may contribute to the shift in views. For much of the past, people came to the end of their lives somewhat predictably. Barring an accident, they'd know they had a terminal illness and move into the category labeled "dying." "Once in that category, there were things that should be done," she said.
It's less clear now. People instead come down with multiple problems over an extended period of time and are still often pretty stable until a couple of weeks before they die, she said. "We've never put together a care system, a Social Security system, a financing system around that reality, but it's there."
That change may have changed how people view end-of-life issues. "There are so many things you can keep doing and sometimes they work. They work enough. Until a little something comes along that is big enough to topple those reserves," Lynn said.
The Pew survey of roughly 2,000 adults, conducted in March and April, also found Americans are closely divided on physician-assisted suicide, with 47 percent approving laws that would allow it, compared to 49 percent opposed. That has changed little from 2005. The percentage that believe a person in great pain with no hope of improvement has a right to take his own life rose to 62 percent from 1990's 55 percent.
Most of those surveyed noted circumstances in which they would want to halt their own treatment and be allowed to die: 57 percent if they were in a lot of pain and 52 percent if they had an incurable disease and depended entirely on someone else for care. On the other hand, just over a third said they would tell their doctors to do everything possible "to keep them alive, even in dire circumstances, such as having a disease with no hope of improvement and experiencing a great deal of pain," the report said. That's up from 28 percent in 1990.
Young adults in particular thought medical professionals should always do everything possible to save the life, said Funk. She was also interested to find that nearly half of those surveyed had had to think about some of the issues at least indirectly and sometimes very directly. Forty-seven percent said that through a close friend or in their family they had experienced the issues of someone in a coma or who had a terminal illness.
"It's not abstract as they're thinking about this kind of situation," Funk said.
Race and religion
Strong differences showed up by both religion and ethnicity, Funk said. "The patterns vary a little bit depending on the concept, which will surprise some people. Blacks and Hispanics more than whites were more apt to say they want a doctor to do everything possible for them."
Most white Protestants, whether mainline or evangelical, and most white Catholic said if they could not be cured and were suffering great pain, they'd stop treatment. Black Protestants and Hispanic Catholics said even in those circumstances they'd ask the doctor to do everything possible to save them.
There were racial and ethnic differences within religions, too, said Funk, who noted "striking" differences among Catholics. "You can separate white non-Hispanic Catholics from Hispanic Catholics and see sharp differences.... The majority of Hispanics say do everything possible."
Religious division was also found on the topic of suicide, with about half of white evangelic Protestants and black Protestants disagreeing that a person "has a moral right to suicide" in the various circumstance on which they were surveyed. Those without religious affiliation, and whites who were either mainline Protestants or Catholics were more likely to find a moral right to commit suicide. The racial and ethnic divisions were similar for physician-assisted suicide.
Ready or not
Families face myriad issues when someone they love is dying, said John Mastrojohn, senior vice president of the National Hospice and Palliative Care Organization, based in Alexandria, Va. In hospice, "families are always facing impending loss and they know that loss is coming. They are dealing with the impending loss and other emotional issues around that, as well as financial issues for some."
Most Americans 65 and older surveyed said they'd given at least some thought to what kind of treatment they'd hope for in different circumstances at the end of their lives. Even so, 27 percent said they had not given any thought to how medical professionals should care for them at the end of their lives. Of those 75 and older, 22 percent said nothing was written down and they had not talked to loved ones about their wishes. Of those older seniors who described their own health as just fair or poor, 30 percent had not had such a conversation or prepared an end-of-life directive.
Mastrojohn and other experts in end-of-life issues say some of the stress can be reduced if people will think about what they might want in the future and then fill out advance directive paperwork. Each state's paperwork is available on his group's website.
There are a lot of misconceptions, particularly about hospice care, he said. "Hospice does nothing to hasten or prolong death, but it views death and dying as a natural part of the life cycle. Hospice is there to help with issues related to pain, symptoms, the psychosocial and emotional issues one may be facing and for those to whom it is important, spiritual issues."
He said families say they wish they'd involved hospice sooner.
Decisions ahead of time
The end of life can be more challenging because people can be caught off guard by it, said Judy Citko from the Coalition for Compassionate Care of California, a Sacramento-based collaboration focused on education to help people get care they want in the face of illness. People want to do the best they can, but it's possible to be overwhelmed, she said. It takes a discussion of what makes life worth living for that person and to determine how much the patient is willing to tolerate in terms of pain, medical equipment, hospitalizations and more. "If at least some of the conversations take place early, it isn't so hard when the decision actually has to be made."
Her professional experience has not matched Pew's findings, she said. "What we're seeing is that people are getting more educated about end of life and what kind of medical issues might arise and becoming more sensitized that (treating no matter what) might be a path they don't want to go down."
Regardless, she said, conversations about end-of-life wishes — which can be changed as your views and circumstances change — are important.
"The conversation is the most important thing," said Citko. "It should be with anyone who is important in your life." What often happens, she added, is a family member who was left out of the conversation shows up at the bedside, creating conflicting views.
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