The national debate over health care reform has focused new attention on the decisions people make about medical care at the end stages of life.

Public opinion polls show that Americans overwhelmingly support an individual’s right to decide whether he or she wants to be kept alive through medical treatment. In a 2005 Pew Research Center survey, 84% said they approved of laws which say medical treatment that is keeping a terminally ill patient alive can be stopped if that is what the patient desires. In addition, 70% said there are some circumstances when a patient should be allowed to die, while 22% said doctors and nurses should always do everything possible to save the life of a patient.

While a heavy majority of Americans support individual rights in this area, when it comes to personal preferences about medical intervention for oneself at the end of life, the public is more evenly divided. In the same Pew Research survey a narrow majority (53%) said if they were faced with a terminal illness and were suffering a great deal of physical pain they would choose to stop medical treatment, 34% said they would ask their doctor to do everything possible to save their life.

It’s not entirely clear what role the public thinks government should play in these complicated matters. After Congress intervened in 2005 in the case of Terri Schiavo, a brain-damaged Florida woman who eventually died when her feeding tube was removed, there was a significant public backlash. More than seven-in-ten Americans (72%) said Congress should have stayed out of the case, only 17% believed Congress had done the right thing.

In spite of the partisan political debate caused by the Schiavo case, Republicans and Democrats have similar views on the broader issue of whether individuals have the right to make their own decisions about end-of-life medical care. Equally strong majorities of Republicans, Democrats and independents approve of laws that let patients decide about being kept alive through medical treatment. Similarly, views about whether under certain circumstances a patient should be allowed to die do not differ by party. Race and religious affiliation are much more strongly linked to attitudes about the right to die. Among whites, 75% say that there are some circumstances where a patient should be allowed to die. Only 40% of blacks agree. Catholics and white evangelical Protestants are less likely than non-evangelical Protestants and seculars to say patients should sometimes be allowed to die.

Making Plans for the End-of-Life

One way to insure that an individual’s desires about end-of-life medical care are carried out is to put them in writing. Nearly all Americans know what a “living will” is, and most have given at least some thought to their own wishes regarding medical treatment at the end of their life. In the 2005 Pew Research survey, 35% said they’ve given this a great deal of thought and 36% said they’ve given it some thought. Even so, only 27% said they have put their wishes in writing and 29% said they have a living will. Though, this represented a significant increase from 1990 when even fewer — 12% — had some sort of living will. Not surprisingly, older people are more likely than young people to have thought about these issues and to have formalized their wishes. Half of those ages 65 and older (51%) say their wishes for medical treatment are written down and 54% say they have a living will.

Most Americans believe that family members should have a role in end-of-life decision making. A strong majority of the public believes that when a terminally ill patient is unable to communicate his or her wishes about medical care, the responsibility rests with a family member. In the 2005 Pew Research Center survey, 74% of respondents said in this situation, the closest family member should be allowed to decide whether to continue medical treatment.

Do family members who find themselves in this situation know what the wishes of their terminally ill loved ones are? A recent survey by the Pew Research Center’s Social & Demographic Trends project found that among those ages 65 and older with at least one living child, 63% have talked to their children about how to handle their medical care if they can no longer make their own decisions; 35% have not discussed this with their children. Older adults are more likely to have discussed their will and what to do with family belongings than they are to have discussed end-of-life medical decisions (76% have discussed their will with their children).

According to elderly parents, they are most often the ones who initiate these types of conversations. Among those who say they have discussed these topics with their children, 70% say they raised the issues while only 10% say their children initiated the conversations.

Older women are much more likely than older men to have discussed medical decision making with their children (71% vs. 52%). And older whites (66%) are more likely to have discussed this issue with their children than are older blacks (56%) or Hispanics (41%).

In addition to asking older Americans whether they had discussed these issues with their children, the Pew Social & Demographic Trends survey cited above questioned adult children about their communications with their aging parents. Among those adults with at least one living parent age 65 or older, 57% said they have talked with their parents about how to handle their parents’ medical care if they can no longer make their own decisions; 42% say they have not discussed this with their parents. Like their parents, adult children are more likely to say they have discussed their parents’ wills and what to do with family belongings than how to handle their parents’ future medical care.

Daughters are more likely than sons to have had these conversations with their parents: 65% of women vs. 48% of men say they have talked to their parents about how to handle their medical care if they become incapacitated. And white adults with parents age 65 or older are more likely than black or Hispanic adults with aging parents to have discussed this issue.

While a narrow majority of adults (52%) who have discussed these topics with their parents say it was their parents who initiated the conversations, fully a quarter say they themselves brought up these topics. In this way their perceptions differ from the older adults surveyed, most of whom say they are the ones to bring up these sometimes delicate subjects.

Whether or not a provision dealing with end-of-life medical care becomes part of a broader effort to reform the U.S. health care system, this is an issue that affects people of all ages — the elderly themselves as well as their loved ones. And as the U.S. population ages, more families will be faced with these difficult decisions.

For more research on aging, see “Growing Old in America: Expectations vs. Reality” at pewsocialtrends.org.

Ten years ago this month, Oregon enacted a law permitting physicians to prescribe a lethal dose of drugs to certain terminally ill patients, a practice often called physician-assisted suicide. The Death with Dignity Act, which took effect on Oct. 27, 1997, is the only law of its kind in the United States, making it an important and controversial milestone in the nation’s debate over end-of-life treatment.

A number of other countries, including the Netherlands and Belgium, allow physician-assisted suicide. In the United States, several other states — including Vermont, Michigan and Washington — have considered measures to legalize physician-assisted suicide, but efforts to enact such laws have failed either in the state legislature or at the ballot box. The most recent attempt, in California, stalled in the state assembly earlier this year.

Oregon’s law applies only to patients who are terminally ill and likely to die within six months, a diagnosis that must be confirmed by two physicians. In addition, eligible patients must possess the mental capacity to give informed consent; cannot suffer from depression; and must sign a written declaration, in front of two witnesses, stating that they are mentally competent and acting voluntarily. Finally, while doctors may prescribe the lethal drugs, the dose must be administered by the patient. Between the time the statute was enacted in 1997 and the end of 2006, 292 terminally ill people had availed themselves of the right to end their lives, according to state records.

Opponents of physician-assisted suicide — including some medical groups, such as the American Medical Association; some disability-rights advocates; and some more socially conservative religious groups, such as the Roman Catholic Church, Orthodox Jews and evangelical Protestant denominations — argue that suicide is a tragedy, not a personal choice. Furthermore, they say, the practice will inevitably lead to abuses, such as patients who might be pressured to take their own lives by family members and others who wish to save money or end the burden of caring for someone with a debilitating illness. In addition, opponents say, doctor-assisted suicide devalues human life by sending a message to the broader culture that some people’s lives are worth less than others. Finally, they contend, physician-assisted suicide is at the top of a very slippery slope that could eventually lead to involuntary euthanasia of people who are severely handicapped or infirm.

Supporters of the practice include some more socially liberal Christian and Jewish religious denominations, some civil rights groups and some organizations that advocate on behalf of the rights of patients, particularly the terminally ill. These groups generally prefer the term “physician aid in dying,” contending that calling the practice “suicide” unfairly imbues it with negative connotations. The practice, they argue, is not about forcing or pressuring anyone but rather about giving people with no hope of recovery the option to end their lives before their physical pain becomes unbearable or before they fully lose control of their mental faculties. In addition, supporters argue, giving people the option to end their suffering does not devalue human life. On the contrary, they say, physician aid in dying promotes human dignity by allowing those in the last stages of potentially painful and debilitating illnesses to end their lives on their own terms.

Public Opinion

Polls show that the country is divided on the issue of physician-assisted suicide, although the numbers differ somewhat based on how the survey questions are worded. For instance, a July 2005 poll conducted by the Pew Research Center for the People & the Press and the Pew Forum on Religion & Public Life asked half the participants about their views on the issue using one question and asked the other half a differently worded question. The survey found that 44 percent of respondents favored making it legal for doctors to “assist terminally ill patients in committing suicide” when the question was worded this way. But support for the practice rose slightly, to 51 percent, when people were asked if they favor making it legal for doctors to “give terminally ill patients the means to end their lives.”

For more on the history of the debate go to pewforum.org

When the Oregon law was first enacted in 1994, the Justice Department, under then-Attorney General Janet Reno, determined that the law did not violate the CSA. In 2001, however, then-Attorney General John Ashcroft reversed this finding and issued a ruling designed to halt the practice of physician-assisted suicide under Oregon’s law. The “Ashcroft Directive,” as it came to be known, stated that physician-assisted suicide was not a “legitimate medical purpose,” as defined by the CSA. Thus, any prescriptions written for that purpose would be unlawful and expose the offending medical practitioner to civil, or even criminal, sanctions. Ashcroft’s successor, Attorney General Alberto Gonzales, also endorsed the Directive.

The Supreme Court, by a 6-3 vote, ruled that the Directive exceeded the powers that Congress granted to the attorney general under the CSA. The court thus affirmed a ruling by the U.S. Court of Appeals for the Ninth Circuit that had held the Directive “unlawful and unenforceable.” Dissenting in the case were Justices Antonin Scalia and Clarence Thomas, as well as Chief Justice John Roberts, who cast his first dissenting vote since joining the court on Sept. 29, 2005.

The immediate legal impact of the court’s ruling is clear: Oregon physicians may prescribe drugs under the Death with Dignity Act without fear of federal penalty. The broader legal significance of the ruling, however, is less clear. Although other states may be encouraged to adopt similar provisions, those who oppose physician-assisted suicide will likely continue to try to use the CSA to impede the practice. Opponents may also attempt to press Congress to enact a nationwide assisted-suicide ban, although past efforts to pass such legislation have come to naught.

As explained below, the court in Gonzales v. Oregon did not completely close the door to federal regulation of physician-assisted suicide. In fact, it may not even have foreclosed administrative regulation of the practice under the CSA. If federal executive branch agencies, through their own processes for adopting administrative rules, end up remedying the defects identified by the court in Gonzales v. Oregon, the state’s victory could be fleeting. If, however, the defects identified by the court relate to the more basic issue of the distribution of authority between state and federal government, then overcoming the court’s decision will, at a minimum, require congressional action — action that, as already noted, Congress thus far has declined to take.

Download the Decision Analysis at pewforum.org