The Doctor's Role in Death
By Howard Grossman '76

January 8, 1997, an ice-cold day in Washington, D.C. I sat in the back of the Supreme Court chamber, a room clearly meant to awe and intimidate those who come before the Court. With me was Dr. Timothy Quill of Rochester, lead plaintiff in our suit, Vacco v. Quill, et.al., which sought to overturn state laws preventing physician-assisted suicide of competent, terminally-ill patients. Just being at the Court was a sign of how far the debate over end-of-life decisions had come, but listening to justices' questions showed me just how much further we needed to go.

Dr. Quill and others have been fighting the battle for the right of self-determination for terminally-ill patients for many years. The issue has been ever-present in my practice, but I never expected to get involved on such a national level. I am an internist in private practice in New York City. I've been in practice for over 9 years, but have been involved with HIV-related disease since the beginning of the epidemic. About one half of my patients are HIV-positive. I've watched over the years as several hundred have died. Sometimes their deaths have been quiet and peaceful and as easy as death can be. But sometimes, their deaths have been painful and ugly and horrible, despite tremendous effort on the part of medical staff and family. Sometimes, despite everything we do, a competent, terminally-ill patient begs us to be allowed to die.

In May, 1994, the US District Court in Seattle struck down that state's law making physician-assisted suicide a crime. The decision said the law violated the 14th Amendment's guarantees of equal protection.

The group which fought that case is called Compassion in Dying. In June of '94, I was contacted by the lawyer in the case. Larry Kramer, one of the founders of GMHC and ACT-UP, had suggested that I might be willing to participate in a similar suit in New York. The AIDS crisis and the involvement of mostly young, empowered, informed patients was driving the issue of end-of-life decisions further than it ever had gone before.

I discussed the case with several patients. One came back to talk to me. Willie Barth was 28. He was an editor at Vanity Fair, talented, handsome and charming. He had been found to be HIV positive in 1991. He'd done well for a while but then came the Kaposi's sarcoma, cryptosporidiosis, a parasitic disease causing constant diarrhea, wasting and weight loss, all the skin problems---the things we see over and over when T cells, one of the most important immune cells in the body, have disappeared. Willie had failed all the available antivirals and the experimental ones, too. He wanted to be involved.

End-of-life issues are no strangers in a practice dealing with People with AIDS. All of us who work with the terminally-ill on a frequent basis have numerous guidelines that tell us artificial nutrition and hydration are medical treatments and like all such, can be withheld or withdrawn when medically or ethically appropriate. We know that this will bring about the end of a life. But we don't call this physician-assisted death or suicide. We console ourselves that the patient is being allowed to die of his or her underlying disease.

What we have not resolved is the idea that a patient who is terminally-ill with no hope of recovery, can make a rational, reasoned decision to actively terminate his life, without going through the drawn-out process of having his family and friends watch his sedated body die.

We hear numerous objections to physician-assisted suicide. One, that patients who have a terminal disease will decide on death because of improper medical care and a lack of adequate pain control; two that decisions on dying result from a failure to recognize and treat depression; and three, that decisions regarding death will be based on a cost/benefit analysis to save money.

It is true that many physicians do not know proper use of pain medications, and are inappropriately afraid of addiction in terminally-ill patients. We must teach early on the difference between addictive behaviors and appropriate dependence on pain meds for ill patients. Likewise, depression goes unrecognized and untreated. Many patients would be willing to stay alive longer if their pain and depression were controlled. For others it is not pain or sadness that drives them to suicide, but a wish to avoid a protracted death and a feeling that their lives are complete.

The argument about inadequate treatment also states that patients will choose early death because they and their physicians are unaware of potential treatments. Under our current system patients are at the mercy of the doctors they can afford, the ones their insurance companies allow, and their own ability to access care. If a patient is not receiving the latest treatments, there is rarely any oversight. Is it impossible to imagine that with a tightly regulated system of assisted suicide patients' cases would be reviewed by local experts in a field who would uncover areas of inadequate treatment and present better options?

Also, we finally have our hands on therapies that seem to be making so many patients better. What if some of the people who are getting better now had opted for suicide last year? Personally, I think people will always have to weigh that possibility. And then they make their decision. It is their right. I have asked my patients who were so close to dying and are now doing well how they feel about it. Without exception, they have said that if they had made the decision to end their lives it would have been the right thing for them and they would have expected my support.

Some people have voiced the objection that in an era of managed care and cost containment decisions to terminate life will be based on the financial interests of managed care companies and on doctors' greed. Frankly, as a physician, I can't imagine going through the long process of treating a person with a life-threatening disease like cancer or AIDS, developing the close personal relationship that this often entails and then lightly deciding that OK, you're done, time for you to die because it costs too much to keep you alive.

What about the managed care companies themselves? We are moving from a society that rations care based on income to one that rations it at the whim of an insurance company. We may someday arrive at a system where interventions are based on a true understanding of their potential for successful outcome, but right now such guidelines are nonexistent or vague at best for most serious illness. Decisions are already being based not on what treatments are available, but on what your insurance company will cover.

Under a system of legislated and regulated physician-assisted suicide, a process conducted in the light of day and open to scrutiny, wouldn't it make sense that HMO's would be obligated to pay for the latest life-saving treatment and for psychiatric care before the decision could be made to allow a patient to die?

I have heard from a number of doctors who think that we were wrong for pursuing this issue so publicly. They feel that doctors have long been able to help patients to die in clandestine ways and are worried that there will now be increased public scrutiny. One need not look very far to see the danger in this argument. There is a doctor under indictment for murder in Florida for helping a patient to die. And in California there was the case of the lover of a man with AIDS, who was present when his lover killed himself with carbon monoxide in their garage. The lover stayed with him as long as he could and retaped the hose to the car when it fell out. He called the police and was tried for murder by an overzealous prosecutor. He was eventually cleared of the charge, but not before he lost everything he and his lover had saved, including his home and his job.

If there is one thing I will always be grateful to Haverford for teaching me it is that community responsibility starts with each of us. Every time I have helped a patient to die and remained silent, I avoid my responsibility.

There were two constitutional issues debated at the Supreme Court. The 2nd Circuit Court of Appeals in the New York case found that current prohibitions violated the equal protection clause of the 14th Amendment, because dying patients on life support could choose to end their lives by terminating that care, while patients not on such devices had no choice. In the Washington case, the 9th Circuit Court of Appeals found that the Constitution assures a right to die, making this a liberty issue.

As I listened to the oral arguments at the Supreme Court and the justices' responses to them, it became obvious to me that we were not going to win this time. The justices were uncomfortable with the idea of finding a new liberty in the Constitution that was not clearly spelled out, and that had not been tested in "the laboratory of the states." Most tellingly, though, they displayed very little understanding about what really happens at the end of terminal illness. They didn't seem to comprehend just how active an intervention it is for medical personnel to terminate life-support on a patient, to remove the respirator tube and the other machines and then watch a person slowly die. As long as they could see writing a prescription as active and terminating life-support as passive, there was no chance they would understand the equal protection argument. They were also ignorant of the Dutch experience. In the Netherlands there are guidelines for assisted suicide and euthanasia, but these are still illegal acts (despite what our opponents would have one believe).

On Thursday, June 26, the last day of the Supreme Court's calendar, the decision was announced that the Court had decided against us in both cases. While we lost this particular battle, advocates can point to several victories. First, the Court held that it was legal to give high doses of pain killers, even if the end result was that the patient died. This had never been as clearly spelled out before. Second, the Court left open the possibility of reexamining the issue if various models were developed in the states. And third, the whole range of end-of-life issues, from treatment of pain and depression to the need for hospice care, has moved to the forefront of the national agenda.

People often ask if I would get involved in this case if I had it to do over. There is a certain amount of pride having one's name on a case that went before the Court, but I don't delude myself as to my role. When you're sitting in those chambers you know that it's not about the plaintiffs or their stories--it's all about the lawyers and the press.

When I look back on my involvement, however, I mostly think about Willie Barth, my patient who was also a plaintiff. Soon after filing his statement Willie became very ill. He was diagnosed with lymphoma which spread rapidly to his brain. He tried chemotherapy, but it failed and he decided to stop all interventions.

Willie's mother, grandmother and sister were with him every day. They made every day another holiday, cooking the food and decorating his room for the Thanksgiving, Christmas and Valentine's day he wouldn't see. They said their goodbyes and everything else that needed saying.

Willie was not in pain, but he was clearly failing. After 4 weeks of this he turned to me with tears in his eyes and asked "when will this all be over?" I didn't have an answer.

He lingered for another 3 weeks and then he died.

Every time I needed a reason to go on being involved on this issue, I think about Willie and have that reason.