January 20, 2019
Close Up Of Hospital Nurse Holding Senior Patient

Dying in America

by Peter Jaret  

Physician and writer Marcia Angell, MD, MACP, serves on the faculty of the Department of Global Health and Social Medicine at Harvard Medical School and the Center for Bioethics. Former editor-in-chief of the New England Journal of Medicine, Angell has written frequently about medical ethics, health policy, and care at the end of life. In a recent talk at the U.C. Berkeley School of Public Health, she explored the issue of “Dying in America.” She shares her thoughts with Berkeley Wellness.

The way most people die in America has changed dramatically over the past half century. Why?

It has everything to do with the development of new scientific advances that can keep people alive. More than any other technology, the development of antibiotics, especially penicillin, changed the way we die. Before they came along, people tended to die at home, and they tended to die quickly, often of pneumonia or some other infection. Pneumonia used to be known as “the old man’s friend,” because no matter what illness you had, you would usually develop pneumonia and within a couple of days you would die quickly and peacefully. Death was in some sense a medical event, but not primarily. It was an existential event. Doctors may or may not have been present. But if they were present, they didn’t help very much.

After World War II, doctors began to have medications and technologies like ventilators that could stave off death. Instead of dying quickly at home in a matter of days, people often ended up dying in hospitals, after a matter of weeks or months. And sometimes they suffered more from the treatments used to stave off death than from their disease. In some sense, doctors began to think of death as a medical failure. If a patient died, it was because they didn’t do the right thing. The battle was against death. But sometimes that’s not the right battle to be fighting. Sometimes that’s not what the patient wants.

In 1990, the Supreme Court affirmed a right to refuse unwanted treatments. Is that enough to help ensure that we won’t die unnecessarily prolonged deaths?

We have the Supreme Court decisions in 1990, and that same year Congress passed a law that says that every patient admitted to a hospital that receives federal funding has the right to prepare an advanced directive. That law affects nearly all hospitals. In addition, we have the right to assign a health proxy who can make sure that our wishes are followed even if we’re unable to communicate them. But there are limits to what an advance directive can do.

What are the limitations?

An advanced directive doesn’t cover all eventualities. The usual reason somebody doesn’t want life-sustaining treatment is because they are suffering and feel that life is no longer worth living. But there are people who are in great suffering because of a terminal illness who are not on life sustaining treatments. There is no ventilator that can be withdrawn. There are no antibiotics that can be refused. Patients in that situation can linger for quite some time while suffering. A patient with widespread lung cancer might need to be on an ventilator to last even one more day, for example. He has the legal right to say, remove this ventilator. In fact, most deaths in hospitals now involve some explicit decision to limit treatment. But a patient with pancreatic cancer instead of lung cancer may not need life sustaining treatment, but may be suffering just as much or more. What’s he to do?

It’s exactly that kind of scenario that gave rise to the physician-assisted suicide movement, or as it’s now called physician aid-in-dying.

Are aid-in-dying laws enough to ensure that patients have control over how and when they die?

In the five states that currently have laws, they help. But there are all kinds of safeguards built in to make sure physician aid-in-dying is used ethically—safeguards also mean that many patients who are suffering and want aid in ending their lives can’t get it.

What about euthanasia? Should doctors be allowed to administer the medication that ends someone’s life?

I originally favored only physician-assisted suicide. I worried that, in a country like ours, with as much inequality as we have, there could be misuse of the laws. I was concerned that elderly people, people living alone, someone whose nephew wanted to inherit the money could be railroaded into having an injection. But we haven’t seen misuse in Oregon, the first state to pass physician aid-in-dying, and the other states.. And the fact is, dying people can’t always swallow a lot of pills. I now believe that if someone has indicated that this is what they want, and they are receiving hospice care, at that point, with the full consent of the family, I think a doctor ought to be able to perform euthanasia.

Is there anything we as individuals can do to ensure that we die the way we would like?

The first thing is talk to your family about your wishes. You can fill out an advanced directive. The problem is that many advanced directive forms now are filled with details of all kinds of hypothetical situations that you can’t know about or understand. It’s gotten very bureaucratic. Every time someone drafts a new form, they add another hypothetical situation. If you’re lucky enough to have a loved one you totally trust, and who knows you well, the best thing is to have an advanced directive that says he or she is my proxy. There are no limitations. He or she can make any decision on my behalf. I think it’s important to give your proxy full latitude. That’s what I’ve done. And I’ve sent a personal letter to that person, saying, you know that the quality of my life matters more than the quantity of my life.

You’ve had personal experiences with death and dying. How have they shaped your thinking?

One experience was my father’s suicide, in 1988. He was 81 and had metastatic prostate cancer. He was about to be admitted to the hospital, and he was afraid that he would no longer have the means to end his life once he was there, that he would be a prisoner. He had a handgun at home and he used it to end his life.

In July, 2014, my husband, Arnold Relman, who was also a physician, died of metastatic melanoma. We didn’t expect that he would decline as fast as he did. We thought we would have more time. Instead, it accelerated over a period of a few days, to a point where he could not possibly have swallowed anything. So I and our children had to sit there and watch him suffer and struggle for air. He was on hospice. But it wasn’t doing him much good at that point. I would like very much to have been able to inject him with some barbiturates to end his suffering.

But even before my father’s death, when I was an intern, I had come to favor euthanasia under some circumstances. There were no regulations at the time. People hardly spoke about it. Yet I saw patients die terrible deaths. I and many other physicians at the time would provide some patients in great suffering with enough morphine to suppress their respiration and they would die. You had it in mind that they were suffering terribly and you wanted to help. It happened all the time.

The problem is that the patient wasn’t a part of this. It was more a measure of the doctor’s courage, compassion, and conscientiousness. There were also many doctors who didn’t, and the patients suffered, I think, more for it. Even early in my career as a doctor, I had the sense that some deaths were unnecessarily hard. After my father ended his life, it just reinforced my views about it. If physician-assisted suicide or euthanasia had been legal, my mother would not have had the shock of his traumatic, violent death. He could have confided in her, and me. He would have died a much better death.

This opinion does not necessarily reflect the views of the UC Berkeley School of Public Health or of the Editorial Board at BerkeleyWellness.com.

Also see Why Health Care Can be Dangerous for Your Health.