DECIDING how and when TO DIE

Americans are increasingly ambivalent about delegating end-of-life decisions.

April 03, 2005|By Larry Williams | Larry Williams,PERSPECTIVE EDITOR

Terri Schiavo is dead. Pope John Paul II faces death's reality, and we find ourselves in the midst of a very public debate over who should decide when and how death will come.

Ordinary Americans, most of whom strongly support the idea that such decisions should be made privately by individuals or their families, might be excused if they wonder how we got to this point.

The answer is that the so-called "right to die" - built up in a series of judicial decisions and legislative actions over the last 30 years - is being increasingly challenged by advocates of the "right to live," a philosophical perspective that has deep roots in our nation's history

In March of last year, the Pope himself challenged the idea that families had a moral right to end artificial life-extending measures for dying patients.

"The administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act," he said in a speech to a Catholic conference in Rome. Denying such treatment would amount to "euthanasia by omission," he said.

Last week, the ailing pontiff acted on that belief, agreeing to the use of both feeding and breathing tubes as he fought for life.

Beyond such passionate advocacy of the sanctity of human life, there is a growing ambivalence about our willingness to defer unconditionally to families on crucial questions of life or death. It flows, in part, from an array of recent social and medical trends.

Not so long ago, death was most likely to come suddenly from diseases against which we had few defenses, including pneumonia, dysentery, infection or heart attack. Death arrived without preliminaries, and no ethical debate was necessary.

But in recent decades, medical science has built an increasingly powerful arsenal of weapons to battle mortality. As a result, we are living longer, more active and vigorous lives. But we also are far more likely than before to fall prey to severe chronic illness and disability in the last phase of life.

In 1900, the average American was likely to live 47 years and die at home with little or no disability beforehand. In 2000, average life expectancy was about 75 years, and the typical death took place in a hospital after, on average, about two years of disability.

The quality of those last years has become a painful issue for growing numbers of Americans and their families. Four out of 10 seniors who reach the age of 85 are ultimately likely to suffer from Alzheimer's or some other form of dementia, medical statistics suggest.

And the cost of maintaining life at any cost is growing. In 2000, 4.2 million Americans were 85 or older. By 2030, nearly 9 million will be over that age and facing the prospect of substantial disability.

In fiscal 2000, Medicaid paid for 45 percent of the $137 billion annual cost of long-term care in institutions. The government forecasts that the costs of long term care will reach $379 billion in current dollars by 2050.

What's more, health care industry experts worry that there will be a severe shortage in the future of the paraprofessional workers who provide more than three-quarters of care in nursing homes and more than 90 percent of care at home.

Families that once might have been relied upon to supplement formal care have evolved, with increasing frequency, into looser amalgams of spouses, children, brothers and sisters from two or even three unions. Fewer than before have the time or inclination to provide care to aging relatives.

Given all of that, it's not surprising that a growing number of Americans worry about a system that calls for life-and-death decisions from individuals who may or may not be cogent or families with little time or money to spare.

How can we be sure that we or our loved ones won't be ushered off life's stage by indifferent or greedy relatives? And who will pay if many more remain on life support?

Living wills can help, but such documents aren't nearly common enough. After all, it's only human nature for most of us to assume that we will live forever. And, doctors note, the wills frequently aren't sufficiently specific about what should or shouldn't be done as the end approaches.

The debate over who should decide how life ends has been stirred by religious and social conservatives who have linked the question to an array of controversial issues from abortion and stem-cell research to the political orientation of the federal judiciary.

"This loss happened because our legal system did not protect the people who need protection most, and that will change," said House Majority Leader Tom DeLay in a statement issued hours after Schiavo's death last week at a Florida hospice.

For the medical profession, the current discussion is a far cry from 50 years ago, when doctors were generally deferred to on questions of life and death.

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