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So Tired Of Life
The standard for my work as a physician has been to treat patients as I would wish to be treated in their circumstances. But I would never want to be treated the way I treated Sarah Brownstein. Sarah (whose first and last names are fictitious) lived on the eleventh floor of an assisted living facility on Manhattan’s West End Avenue. Her large apartment was flooded with sunlight. The furnishings were sparse, and there were no collections of mementos or other tchotchkes one might expect from more than ninety-two years of living—merely some paintings whose artists she identified, readily telling a story about each one. The place was spotless with not one item out of order. I was there at the request of Sarah’s nephew, a friend and longtime colleague. At our first meeting the diminutive Sarah was as poised as a debutante at her coming-out party. She was meticulously dressed, with just the right amount of makeup to look like she had been sunning in Florida, although I later found out that she rarely left her apartment. She wore no glasses, but a strained squint revealed her deteriorated eyesight. Hearing aids were barely covered by her scant and wispy hair. She greeted me like a rescue worker coming to take her from her burning home. Yet she was uncomfortable about something in the other room, where a brief rustling of papers could be heard. Sarah put a finger to her lips as if to warn me of a hidden danger. Moments before, a visiting nurse had arrived. Normally a welcome visitor, right now the nurse intruded into Sarah’s plans to talk with me in private. Sarah asked the nurse to take the medications she was documenting to the lobby because she "needed some privacy" with her doctor. Soon we were alone. Sarah ushered me to the couch that occupied one wall of her living room. She sat down next to me, her shoulder against mine, and grabbed my arm with both her hands. For a minute we both sat silently as she held my arm firmly but gently, as if to make sure I was real or to make some physical connection between us. "Dear Doctor," she began. "I hope you can help me. I am so tired. So very, very tired. I have lived a wonderful and full life, and now I am just no good. No good to myself and no good to anybody else. I have become a burden to everyone, and I have nothing left to live for. I hope you will help me. I just want to die. I am so very, very tired of living." Her eyes welled up with tears. "Tell me about yourself," I suggested politely, postponing any response to Sarah’s direct request until I could construct a fuller picture of the circumstances surrounding her bold request. "I want to know more about you."
Sarah briefly outlined her life in perfect chronological order. "I was married to a most wonderful man," she started. "Together we shared a full and exciting life. We loved art and supported many local artists in our time, some of whom have become quite famous." She rose to pull an art book off the shelf, one of only two books visible in her apartment. She turned to a well-worn page and told the story of an abstract artist whose work she pointed to. It was clear from the oil smudge on the page that she had done this countless times before. "My husband and I sat on the board of directors of music and art associations in our time, and we helped to start a new museum that is still there today." Then her eyes turned down. "But my darling Richard passed away more than thirty years ago, and I have been alone for such a long, long time." Her storytelling was impeccable except for her inability to recall names, which would cause her to raise her fist at the ceiling as if to curse the higher power that brought mental dysfunction into her life. "I am no good," she whined. "I can’t hear, I can’t read, I can’t even think." A tear would then come to her eye, and I would reassure her that she could take her time to tell the story. This was not altruistic on my part; I was mesmerized. One could not help notice the juxtaposition in her stories of the younger Sarah—an intellectual and social powerhouse—and today’s slight and failing Sarah, alone in her New York City apartment and ready to end her life. Next she spoke of her sons. "The worst thing a mother can do is outlive her son—no, to watch her son’s health deteriorate," she said. "My younger son lives out west, and he is slowly dying of Parkinson’s disease. I can’t bear to think about this, and it is on my mind constantly. My older son is a famous scientist, and I do not want to be a burden on him. You see, I am no use to anyone. Not even to myself. My medicines and my home nurse are using up the little money I have saved for my sons. I am so very, very tired. I want to die." Sarah had nothing to look forward to. She wanted desperately to die. She wanted me to help her, to prescribe some medication that would put her to sleep so she wouldn’t have to wake up anymore. She was ready. She would do it now, or tomorrow, or whenever I could accommodate her request. This was uncharted territory for me, and we both knew it. I wanted just to be her doctor and take care of her as a doctor would. But Sarah didn’t want a doctor to treat her malady; she wanted a doctor to end her misery. Nonetheless, unsure of what else to do, I fell into the role I knew best. I asked her to produce the tray of medications she had been taking. She laid out before me yellow bottle after yellow bottle of pills. There were medications for heart failure, hypertension, depression, seizures, and elevated lipids. There were platelet inhibitors, diuretics, and a potassium replacement. They totaled fifteen different medications—twenty-four pills a day—all designed to keep Sarah alive months after she had decided she wanted to die. Some things about Sarah’s request to die didn’t fit. She lacked most signs of depression. She was eating and sleeping well, and she dressed up and put on makeup every morning. Even her affect was not depressed except when she talked about her physical condition or her ill son. She obediently took her medications laid out weekly by the visiting nurse while repeatedly asking me if all of the medications were necessary. Sarah’s medical condition was stable, and I was loath to change her regimen. Even so, after relating to me her desire to reduce the most costly drugs for fear that their cost would erode her sons’ inheritance, I stopped six of the drugs on the first visit. Her condition remained unchanged.
Week after week I visited Sarah. While trying to assess and respond to her changing needs, I desperately avoided the subject of my helping her to die. Sometimes we both pretended this issue was off the table; sometimes she would ask me what I had decided to do to help her end her life. One Wednesday, on my way to the office, I double-parked in front of Sarah’s building as usual and nodded to the doorman in a gesture we both knew meant that he would watch my car. My double-parked visits were usually short, but today Sarah had other ideas. "Damn it!" she said when I walked in. "When are you going to do what I asked? Don’t you see how I’m living? I can’t hear, I can barely see to read, my life is useless. You promised to help me." I hadn’t promised anything, but I knew there was no longer any escape. "Mrs. Brownstein," I started, making up my response as I went. "I cannot give you medication to kill yourself. You are asking me to do something that is against the law. I run the risk of losing my medical license and even being put in jail. I have discussed this with my wife, who begged me to help you in any way I could—without putting my own professional life in jeopardy. My colleagues advised the same. I know what I want to do, I know what you want me to do, and I believe it is your right to end your life if you so choose. But I cannot do it for you or even give you medication to do it yourself. I know this was not your expectation when I first came to see you." She remained silent and looked at me scornfully. The charade was over. I could not do the job she had hired me to do. I waited for some cue from her as to what to do next. There was none. Then, spontaneously, I went on. "I do have a few ideas that may help you." She continued her stare. "You could stop taking all of your medications. That is completely within your control. I cannot predict what will happen, but if you should become uncomfortable or filled with fluid from heart failure, I can prescribe a pain medication to take away the sensation of being out of breath, without treating your heart failure. I promise to come to see you, any time day or night, if you should become uncomfortable at the end. You are of sound mind, Sarah, and you still have control over the treatments you accept and those you reject." We both stared at each other. "OK," she said. "But what happens when the visiting nurse who counts out my medications sees that I am not taking them?" Without waiting for an answer, she continued. "I will ask her to stop coming. I will tell her that a relative is counting out my medications and that you are monitoring my blood pressure." The plan was hatched, and the visiting nurse came no more. Sarah stopped taking all her pills except aspirin, the drug to prevent a recurrent stroke (at my suggestion), and the nightly sleeping pill. For months she had no change in symptoms or mental status. This infuriated her even more, as she recounted the huge expenses she had incurred for her medicines.
Then, one morning, everything changed. My cell phone rang about 6 a.m. with Sarah’s home health aide on the line. "Mrs. Brownstein is very bad," she said. "I can’t understand what she’s saying—she’s screaming, hitting me, and wandering around the apartment completely confused." "Don’t call 911," I retorted, remembering Sarah’s Do Not Resuscitate order lying prominently on her dining room table and her living will stating that she did not want to be brought to a hospital under any circumstances. I quickly dressed and rushed off to her apartment. Sarah had experienced another stroke. She had had many before, and although they were possibly responsible for some of her mental deterioration, they had not left her physically disabled. She was fighting with her home health aide as I entered the bedroom. She appeared uncomfortable in her own skin, pulling on her clothes, struggling to walk around but clearly aimless in her intent. The sight of me seemed to agitate her even more. I retreated to the living room, out of her sight. I called her older son with whom I had spoken many times before and explained his mother’s condition. Together we decided to treat her with a low-dose antipsychotic medication known to help in these agitated states. Sarah improved but remained miserable, combative, and in psychic pain. For the next month I visited weekly. As confused as Sarah was, her anger with me was obvious. At the mere sight of me she would turn away and become increasingly agitated. I had failed her, and now she was suffering. I felt deep remorse for my prior inability to have helped her. Months later her son transferred her to a nursing home near him in Boston. She died shortly thereafter—a bout with pneumonia and a family decision to honor her request for no more treatment finally took her life. A year later I cannot get over Sarah’s pain and misery in her final months and my own inability to intervene on behalf of this fragile woman who sought my help. I was not the cause of her suffering, but I surely was not the merciful helper she sought.
As doctors we are restricted from helping those in pain at the end of their lives to end their own suffering. We are restricted from using marijuana to help those suffering from the nausea of chemotherapy. We run risks when using drugs "off label" for conditions that have proved to be remediable but for which the drug maker has neither sought nor received permission to list as a "use." And we are asked to balance our moral position on these issues—and many others—against the possible legal consequences of acting in what we consider to be our patients’ best interests. The laws that govern medical practice are not created by physicians or ethicists but by governments. Like most laws, they lack the ability to distinguish subtleties in the human experience that might require extraordinary interventions. Yet as physicians we must consider the needs of each person and individualize our actions in our patients’ best interest. In 1997 the Supreme Court upheld states’ rights to legislate the legality of physician-assisted suicide in deciding on matters brought before it by advocates of the practice from Washington and New York States. To date, Oregon is the only state to legalize physician-assisted suicide. Between 1998 and 2002 only 129 deaths in Oregon resulted from doctor-written prescriptions; four-fifths of these deaths were cancer patients. Would Mrs. Brownstein’s end have been more humane if she had been treated by a physician in Oregon? Even if physician-assisted suicide had been legal in New York, would she have fit into an allowable category? Would I have felt differently about assisting in her death? I do not know. I do not think any of us can predict how we would feel in Mrs. Brownstein’s situation. But if I should find myself aged and failing physically and mentally and if I sought relief from the "pain" my life was causing me, I would hope that the physician I turn to for help has a good understanding of palliative care and end-of-life options, has the courage to act on my behalf, and has more merciful laws to protect the decisions we may make together about my end-of-life care.
Neil Calman (ncalman{at}institute2000.org) is a practicing family physician and president of the Institute for Urban Family Health in New York City.
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A Life Once Lived
A Request Denied
