Of Death and Dying: Not a Simple Case of Acute Leukemia : Ethics: A patient’s decision to forgo treatment and hasten the end by suicide, aided by her doctor, is a choice society unfairly condemns.

Diane was feeling tired and had a rash. A common scenario, though there was something subliminally worrisome that prompted me to check her blood count. I wanted it to be viral, trying to deny what was staring me in the face. Perhaps in a repeated count it would disappear. I called Diane and told her it might be more serious than I had initially thought--that the test needed to be repeated and that if she felt worse, we might have to move quickly. When she pressed for the possibilities, I reluctantly opened the door to leukemia.

Diane was raised in an alcoholic family and had felt alone for much of her life. She had vaginal cancer as a young woman. Through much of her adult life, she had struggled with depression and her own alcoholism. As she took control of her life, she developed a strong sense of independence and confidence. In the previous 3 1/2 years of the eight years I had known her, she was completely abstinent from alcohol, she had established much deeper connections with her husband, college-age son and friends; her business and her artistic work were blossoming.

A bone-marrow biopsy confirmed the worst: acute myelomonocytic leukemia.

We looked for signs of hope. This is an area of medicine in which technological intervention has been successful, with cures 25% of the time--long-term cures. The outcome of no treatment--death in days, weeks or, at most, a few months.

Believing that delay was dangerous, our oncologist broke the news to Diane and began making plans to begin induction chemotherapy that afternoon. When I saw her soon after, she was enraged at his presumption that she would want treatment, and devastated by the finality of the diagnosis. All she wanted to do was go home and be with her family. She had no further questions about treatment and, in fact, had decided that she wanted none. We agreed to meet in two days.

Diane returned with her husband and son. They had talked extensively about the problem and the options. She remained clear about her wish not to undergo chemotherapy and to live whatever time she had left outside the hospital. Diane was convinced she would die during the period of treatment and would suffer unspeakably in the process. Her family wished she would choose treatment but sadly accepted her decision. It was she who would be experiencing all the side effects of treatment and that odds of 25% were not good enough for her expectations. She had a remarkable grasp of the options and implications.

I have been a longtime advocate of active, informed patient choice of treatment or non-treatment, and of a patient’s right to die with as much control and dignity as possible. Yet there was something about Diane giving up a 25% chance of long-term survival in favor of almost certain death that disturbed me.

But I gradually understood the decision from her perspective and became convinced that it was the right choice for her. We arranged for home hospice care, left the door open for her to change her mind and tried to anticipate how to keep her comfortable in the time she had left.

Just as I was adjusting to her decision, she opened another area that would stretch me profoundly. It was extraordinarily important to Diane to maintain control of herself and her own dignity during the time remaining to her. When this was no longer possible, she clearly wanted to die. When the time came, she wanted to take her life in the least painful way possible.

I explored her wish but also thought that it was out of the realm of currently accepted medical practice and it was more than I could offer or promise. In our discussions, it became clear that preoccupation with her fear of a lingering death would interfere with Diane’s getting the most out of the time she had left until she found a safe way to ensure her death. I feared the effects of a violent death on her family, the consequences of an ineffective suicide that would leave her lingering in precisely the state she dreaded so much, and the possibility that a family member would be forced to assist her, with all the legal and personal repercussions that would follow. I told Diane that information available from the Hemlock Society might be helpful to her.

A week later she phoned me with a request for barbiturates for sleep. Since I knew that this was an essential ingredient in a Hemlock Society suicide, I asked her to come to the office. She was more than willing to protect me by participating in a superficial conversation about her insomnia, but it was important to me to know how she planned to use the drugs and to be sure that she was not in despair or overwhelmed in a way that might color her judgment.

It was apparent she was having trouble sleeping, but it was also evident that the security of having enough barbiturates available to commit suicide when and if the time came would leave her secure enough to live fully and concentrate on the present. I made sure she knew how to use the barbiturates for sleep, and also that she knew the amount needed to commit suicide. We agreed to meet regularly, and she promised to meet with me before taking her life. I wrote the prescription with an uneasy feeling about the boundaries I was exploring--spiritual, legal, professional and personal. Yet I also felt strongly that I was setting her free to get the most out of the time she had left, and to maintain dignity and control on her own terms until her death.

During the next several months, there were emotional and physical hardships. There followed two weeks of relative calm and well-being, and fantasies of a miracle began to surface.

We had no miracle. Bone pain, weakness, fatigue and fevers began to dominate her life. Although the hospice workers, family members and I tried our best to minimize the suffering and promote comfort, it was clear that the end was approaching. Diane’s immediate future held what she feared the most. As we had agreed, she let me know.

When we met, it was clear Diane knew what she was doing, that she was sad and frightened to be leaving, but she would be even more terrified to stay and suffer. She promised a reunion in the future at her favorite spot on the edge of Lake Geneva, with dragons swimming in the sunset.

Two days later her husband called to say that Diane had died. She had said her final goodbyes to her husband and son that morning, and asked them to leave her alone for an hour. After an hour, they found her on the couch, lying still and covered by her favorite shawl. There was no sign of struggle. She seemed to be at peace. They called me for advice.

I called the medical examiner to inform him that a hospice patient had died. When asked about the cause of death, I said, “acute leukemia.” He said that was fine and that we should call a funeral director. Although acute leukemia was the truth, it was not the whole story. Yet any mention of suicide would have given rise to a police investigation and probably brought the arrival of an ambulance crew for resuscitation. Diane would have become a “coroner’s case,” and the decision to perform an autopsy would have been made at the discretion of the medical examiner. The family or I could have been subject to criminal prosecution, and I to professional review, for our roles in support of Diane’s choices.

So I said “acute leukemia” to protect all of us, to protect Diane from an invasion into her past and her body, and to continue to shield society from knowledge of the suffering that people often undergo in the process of dying.