The Dying Patient

Preventing things from going wrong

Death is a fact of everyone’s life—not so much our own death, which is projected into some indefinite, unthinkable, future, but rather the death of others– of those people we care about. Usually as early as childhood many of us have experienced the death of a grandparent or some other aged member of the family. On growing older inevitably we live through the death of other relatives, perhaps parents, then growing even older, through the death of still others whom we have loved. If we live long enough—very long– we will survive the death, one after another, of brothers and sisters, of most of our friends, of a spouse, and sometimes—perhaps most painful of all—even of children. Death is a familiar, banal event; yet because it is so purposeless from the point of view of the individual human being, it seems strange and mysterious somehow, even unnatural.

Perhaps it is that sense of strangeness that makes the fact of death hard to accept or to believe in, sometimes even for a physician. Sometimes when a patient has expired, the doctor hesitates, nevertheless, to declare that person dead—for that pronouncement makes him dead irrevocably. The thought of death is abhorrent.—unacceptable. Yet unavoidable.

If the fact of death is hard come to terms with, its meaning is even more elusive. In a way it has no meaning, for death is arbitrary. Like most of life it is decided by random circumstance that takes no consideration of anyone’s wishes or requirements. Sudden death seems even more capricious. All it is is an ending. But when death takes place over a period of time, it does have significance to the person who is dying and to those others who share his life and who care for him. That time of dying is a special time of life.

In order for a person to die successfully—in peace and with some sense of the meaning of his life—he must achieve certain purposes. He must remember and understand his past. He must be able to plan for the future—for there continues always to be a future, for his family or for his work perhaps. He must say good-bye to the people who matter to him. It is a time of drawing away, and yet also a time of drawing close, since the façade that people interpose between each other tends to fall away during these final moments. For that reason, dying is an intimate experience.

The person who undergoes this last, most lonely experience must have someone with whom to share it. For some, this final time of life must be a time of growing up once and for all. Death is probably always sad and painful to some extent, but for those who come to accept themselves as they really are, there are some days of grace and contentment.

However, there are disturbances of dying in which the meaning of death is lost or perverted, with the result that the natural melancholy of death develops into an overt depression or into some other less precise kind of emotional distress; these disturbances, like any other kind of emotional disturbance, require treatment.

The following is a brief statement of what went wrong in the care of one patient’s care while he was dying. (For the full account of Mr. L.’s course prior to his death, see “Caring…pp. 219 and following.)

1. He was lied to about the seriousness of his illness (Cancer) and was, therefore, unable to make plans to deal with his business and tend to important family matters, such as his will.
2. He chafed against the rules of the hospital where he spent the last months of his life. Some of these rules were unnecessary and took no heed of his special emotional needs. Most of the time he was never permitted to do things (such as walk on the hospital grounds) that he was fully capable of doing.
3. A number of medical procedures and treatments were inflicted upon him unnecessarily in the waning days of his life. These only increased his pain and discomfort.
4. The staff avoided him much of the time because he was difficult and demanding. As the result he became frustrated and angry. Frequently, he was alone.
5. When they gave him pain medications, it was in arbitrary amounts on a rigid schedule, which did not, in fact, control his pain.
6. Since his family could not tolerate his dying, he could not talk to them about it; as the result, certain things that needed to be said, could not be said. He wanted to say goodbye.
7. Although he was an atheist, he worried about what would happen to his body after he died. Certain arrangements he wanted could not be discussed since the family kept insisting he was going to get better.
8. Since he was nominally a Catholic, a priest came unbidden to his bedside, annoying him further.
9. He wanted for a number of reasons to return home to die; but he was not permitted to do so.
10. Although he was obviously going to die very soon, he was kept alive against his wishes by undergoing medical procedures that at best could only have extended his painful existence by a few days or weeks.

Death is not just a loss of life, but rather the dissolution of emotional attachments. It is the loss of everything and everyone who has mattered. This loss takes place over time and in stages. It should not be worsened by denial or by the individual being treated as simply one more hospital patient, without the needs and peculiarities that made him a distinctive person.

Although Mr. L had always been an independent person, he was not allowed to make ordinary decisions about his life. He was managed, often arbitrarily, by his physicians, by hospital staff, and by his wife. His eating, sleeping, elimination, and all of his daily activities were determined for him by others, as if he were a child.

Because his life was in danger, his identity—his sense of himself—was threatened profoundly; and at just that precisely wrong time, he was prevented from engaging in activities that were the foundation of his self-esteem and self-image. His dedication to his work and his concern over his family’s future were all ignored. His religious convictions were slighted. As the result his values and his respect for himself were undermined. Everything he had always been was made out to be unimportant.

And his family, too, suffered in different ways too complicated to describe here.

Proper treatment of the dying patient requires attention to all these matters. Families, in particular, find it difficult at such a time to maintain their own equilibrium; and yet terminal care requires their best resources. Indeed, taking care of a dying person is difficult and stressful for anyone, including medical and nursing staff. Yet the experience of providing such care is often enriching, even ennobling.(c) Fredric Neuman