Dying safely.

• Author: Wesley, Patricia
• Position: Response to Timothy E. Quill, New England Journal of Medicine, vol. 324, p. 691. 1991

A rabbinical dictum has it that we should 'place fences around the law.' The idea is that restraints and prohibitions should be in place to prevent us from reaching, or at least impede our progress toward, the point of absolute and damning transgression. There should at least be safety rails around the abyss. Perhaps the best that our culture can provide are signposts warning against the danger ahead.(1)

I wrote the prescription with an uneasy feeling about the boundaries I was exploring--spiritual, legal, professional, and personal.(2)

Tenderness leads to the gas chamber.(3)

Doctors like to tell stories. Sometimes the story is a brief clinical vignette one physician shares with another over coffee in the nurses' station. Sometimes the story is a literary masterpiece by a renowned physician-artist such as William Carlos Williams, Anton Chekhov, or Walker Percy. And sometimes doctors tell stories designed to revolutionize the heart and soul of medical practice. Such a story, "Death and Dignity: A Case of Individualized Decision Making," appeared in the March 7, 1991, issue of The New England Journal of Medicine.(4) Author Timothy E. Quill, M.D., a Rochester, New York, internist, tells us about his patient Diane, who developed acute leukemia, refused treatment for it, and ultimately asked for and got his aid in killing herself.(5) This story is no simple clinical anecdote, however. While never directly saying so, Dr. Quill offers it as evidence that under certain circumstances, like those in which he and Diane found themselves, physician-assisted suicide can be clinically and ethically "right," and our laws should be changed to permit it.(6)

This text invites examination precisely because of its revolutionary agenda. Yet this story is so disarmingly simple and moving, and its surface so smooth and opaque, that our inquiry seems to be barred. The euthanasia project is hidden here behind the mask of plain narrative and attractive metaphor. How can we get up close for a clear look at this encounter between Diane and Dr. Quill?

Any text speaks to us on many levels. Astute readers note how the author writes as well as what he writes about. Close attention is paid to such formal elements as language, tone of voice, point of view, genre, plot, and figures of speech. We note patterns in the narrative action. Who says or does what to whom, when? In addition to reading on the lines, readers should attend to the white space between the lines. What is not being said? Are there paradoxes or gaps in a seemingly unified text that, once explicated, can lead us to a more complete understanding of the story? What is the author trying to persuade us about? Are there contradictions in such authorial claims on us that might qualify our assent? In what social and cultural context does the text appear? What audience is it designed to reach? Who publishes it, and why? No work of art is ever simply the product of its time and place; nonetheless, attention to these more external factors provides another perspective for apprehending the text in its fullness.

Patients also tell physicians stories, to which physicians listen, although not always as patiently as they should. The patient's account of a developing illness is still the threshold at which the physician enters the patient's life. One group of specialists who are particularly likely to hear such stories are psychodynamically oriented psychiatrists. They use some of the same techniques to understand their patients' stories that a reader uses to understand a novel or a short story. Of course, no live patient is equivalent to a written text, or vice versa. Nonetheless, similar techniques of listening do characterize these two human activities. Let me first describe how the psychiatrist listens. Then, let us "listen" to Dr. Quill's story in the same way, and perhaps find a way into its interior.

At the beginning, the psychiatrist will hear the patient's story as it is told but, equally important, will note how the patient tells his story. What kind of language does the patient use, in what tone of voice and manner? Is the patient glib, humorous, vague, dramatic, or sarcastic? Is his mood anxious, angry, or sad? Discrepancies between what is said and the affect accompanying it are also noted; for example, the psychiatrist would be puzzled that whenever a particular patient says he's angry, he smiles or speaks so softly that he cannot be heard.

What the patient doesn't say is important, too; the doctor/listener would observe that an elderly widow mentioned almost casually a few weeks ago that a much-loved, previously much-mentioned pet cat died, but since then she has said nothing further about this loss or her reactions to it.

Of particular interest are contradictions between what the patient says he wants and how he goes about getting it. For example, a patient may announce that he is bound and determined to succeed in the same family business his father failed at, yet repeatedly makes easily avoidable errors in management that bring the business to the brink of bankruptcy.

From a more historical perspective, the psychiatrist would want to know when a depression developed and what life events preceded it. Did the patient end a love affair, or make an important scientific discovery that brought acclaim? Did a decision to divorce follow a year or so after the death of a child in a car accident in which one of the parents was the driver? Did a loss of self-esteem follow the diagnosis of a serious illness? An investigation of the historical antecedents, near or remote, of any life event can often be illuminating.

Very crucially, the psychiatrist would try to help the patient become aware of how past experiences, from early childhood, adolescence, and adulthood, shape current reactions and decisions. When and in what human context did the patient develop certain views about herself? How might those views protect against the remembering of old traumas or the resurgence of old needs in new situations? Sometimes, even the patient may not be fully aware of how such views can influence current choices. As we will explore later in more detail, did Diane's view that she must be independent and in control, no matter what the cost, impair her ability to fully assess all her options as she faced a life-threatening illness?

For the psychiatrist to be of help to the patient, he must construct a safe, structured, and rule-bound therapeutic setting, in which the patient can articulate, perhaps for the first time, wishes, hopes, and fears from both past and present life dramas. The psychiatrist must attend not only to the patient, but to himself and his interaction with the patient as well. Psychiatric residents are admonished to keep the following question always in mind: Why is this patient saying this to me at this time? Does the patient want me to see her in a certain way, feel certain things about, or with, her? Is the patient trying to please me, enrage me, make me an ally or a judge, or test me in some way? Is the patient asking a question by enfolding it in a seemingly simple statement, one that might make "perfect sense," to use Dr. Quill's characterization of Diane's stated intention to take her own life?

The psychiatrist must also be constantly aware of how his own values and personality can shape what he says to the patient and how, in turn, this can influence the story the patient tells. Patients tend to tell stories they know, or imagine they know, their doctors like to hear.

The famous American psychiatrist Harry Stack Sullivan captured the complexities of the psychiatrist's tasks in his concept of the "participant-observer."(7) As he warned on many occasions, it is no easy job to simultaneously participate and observe. The psychiatrist, or any other doctor who listens to a patient, must resonate, judiciously, to the appeal and power of the story the patient tells. At the same time, she must meticulously avoid re-enacting past traumas, or joining in self-deluding scenarios, with the patient--especially those involving unlikely posthumous reunions along the shores of certain European bodies of water. The difficult balance required here is to remain inside and outside the story, empathic toward, but not misidentified with, the patient and the tale he tells.

To be such a listener and such a questioner, the physician must appreciate the complexity, ambiguity, and multiplicity in all human desire and action and in every human life, lived or told. However much we may speculate about their psychodynamic origins, or know about their neurophysiological correlates, human character and behavior remain resilient mysteries. Unhappily--and happily--no human being can ever be completely understood by someone else, even when the someone else is a skilled psychiatric professional. This is a chilly reminder of our essential aloneness, but it is also a helpful reminder to be chary about ever claiming, as Dr. Quill does, that we can know someone else "well."

When we, doctors and patients alike, acknowledge that we do not know, and can never know in any final sense, all the motivations for any human action, then we have paradoxically secured the only foundation for knowing what can be known, incomplete and tentative as that may be. We should be listening and asking questions, but we cannot expect any "right" answers or be assured, as Dr. Quill is, that our decisions or those of our patients are the "right" ones. The fences against euthanasia are there to remind us that when so much is unknown, we need to be aware of the dangers of false certainty. Even dragons cannot live in that abyss.

With this background in place, let us begin our confrontation of this most seductive text, "A Case of Individualized Decision Making."(8) As we do, keep in mind that we have no direct, unmediated knowledge about "Diane" herself, as she was in life or in death, or about her actual interactions with Dr. Quill. We...