The ethicist Reinhold Niebuhr said it's impossible to know the depth of a person's faith in God until that person faces death.
I learned that was true as a young Episcopal priest in the early 1960s, administering communion to hospital patients in New York City. Most of them were very sick. Some were bitter; some were fearful; some were begging God to intervene.
But the patient I remember most clearly was a lawyer, successful and respected in his profession, who had an incurable heart condition. I visited him a number of times. A few days before his death he said, "I don't know how much longer I have to live, but I don't think the number of days I have left is the most important thing in the world."
This was not an expression of despair or even of resignation. I took it as a simple statement of faith. Life is good, but its goodness is not doled out by the day. It would be good if it went on for years, or if it ended, as it turned out, very quickly.
It was an important message, a message about the meaning of life. And it was a very different message than what we hear from all kinds of sources.
A great question of medical ethics is whether there are or should be any limits to healthcare, any limits to what medicine should do to eke out a little more time in this life. For that patient the amount of time was not the highest value. There are people at all levels of healthcare decisionmaking who seem to disagree.
It may be argued that it's crass to state ethical issues in budgetary terms, but clearly a society does define what it values by how it spends its money. To say that there are no limits to the cost of extending life for a year is to say that the extension of life is the highest value we have. And it is to say that everything else-the education of children, the safety of our communities and, most particularly, the legacy we bequeath to future generations-must be diminished to accommodate our highest value.
A one-year extension of life should not have an unlimited claim on the Treasury. But very few people in elective politics who care about winning the next election would publicly argue that position.
The great healthcare debate that consumed the first two years of the Clinton presidency began with a dual mandate: to expand benefits and to contain costs. But for politicians, expanding benefits is popular and containing costs is not. As the debate progressed, talk of cost containment faded. Hard choices about limiting how much healthcare we can have weren't considered.
It's not possible to accomplish meaningful cost containment simply by squeezing providers. The way to reduce cost is to buy less healthcare, and this we are not willing to do. Each year we spend more and more. At the present rate, Medicare will grow from $196 billion this year to $435 billion in 2005. Medicaid will grow from $97 billion this year to $229 billion in 2005.
Valuing unlimited healthcare at the end of life is more than a position taken by politicians in political debates. It's held by ordinary citizens, good people responding to poignant circumstances.
In the case of Baby K, born without a cerebral cortex in a Virginia Hospital in 1992, a court ruled that a mother's wish to keep a baby alive through artificial means outweighed the physicians' desire to avoid futile treatment and to let the baby die a natural death. In the court's view, a mother can decide there should be no limit to stabilizing healthcare for her child, despite the cost and the ethical reservations of hospitals and physicians.
Should a relative, loved one or friend be able to force a healthcare provider to give care in futile cases that the provider does not wish to give? My own view is that the answer must be no, that the mere prolonging of the process of dying is justifiably abhorrent to many people.
Consider the reverse of the Baby K case-the Karen Ann Quinlan and Nancy Cruzan situations. If parents aren't entitled to demand the provision of futile care, should they be able to demand an end to the futile care?
The reason living wills and durable powers of attorney are important is to make it clear in advance that there are higher values to the patient than extending the days of breathing. In the eyes of the patient, there is a fate worse than death, and that is the artificial prolonging of the act of dying.
What is at stake in medical ethics is not the locus of power but the meaning of life. Courts are necessary to an orderly society, but they are not places to resolve disputes about fundamental values. Two federal appeals court cases decided this year on the subject of assisted suicide make that abundantly clear. In one case, the court held that assisted suicide could not be made a criminal offense. In the other, the court said that laws against assisted suicide violate the equal protection clause of the Constitution.
Assisted suicide may be gaining in popularity, but surely it is not a value so ingrained in our history and tradition that it is entitled to constitutional protection. Although the court of appeals may see no difference between a medical practice that lets nature run its course and the administration of lethal substances to sick people, many of us see the differences quite clearly.
To believe that life has a dignity that does not depend on ventilators, that can be dishonored by aggressive treatment, is the opposite of the view that life in its last stages is so worthless that we are free to dispose of it at our own discretion.
Last November, the Journal of the American Medical Association reported in a study on terminally ill patients that "physicians do not implement patients' refusals of interventions. When patients want CPR withheld, a do-not-resuscitate order was never written in 50% of the cases." The study found that "communication is often absent or occurs only during a crisis" and that "physicians today often perceive death as failure."
Testifying before a congressional subcommittee, Kathleen Foley, M.D., chief of pain services at Memorial Sloan-Kettering Cancer Center, called for a shift in the current debate on assisted suicide "to the broader issue that concerns the American public-improvement in the care of the dying." That would be a significant shift-from a fixation on the length of life and the end of life to the quality of life for as long as it lasts.
Foley is correct. We have focused on the duration of life, on frantically working to keep people breathing or on actively hastening their death. We have lost the sense that duration isn't the highest value and that we should honor and enhance life however long it lasts.
This article is excerpted from the Robert C. Biblo Memorial Lecture given to the Midwest Bioethics Center in Kansas City, Mo., May 16.