Psychological and Medical Issues in the Final Days or Weeks

By Roger C. Bone, MD, reprinted with permission

Page One of Three Pages

In Reflections: A Guide to End of Life Issues for You and Your Family, distributed by the National Kidney Cancer Association, this chapter is titled "Please come here and help me." Here the author, a physican who is facing his own death, discusses many of the problems that occur during the final days and weeks of a person's life.

As with several articles touching on the dying process, it is hard to know whether this article fits in this section or in the next, Facing the End of Life Together. Both the patient and his or her loved ones can learn of what to expect by reading both groups of articles.

The words "Please come here and help me" are uttered by Ivan llych Golovin near the end of his life in Leo Tolstoy's short novel The Death of Ivan llych.* This profound work of literature is one of the greatest explorations of life and death ever written. The main character is an ordinary man living in late nineteenth-century Russia. He has a family, is educated, and serves as a judge. He also suffers from an incurable disease. Tolstoy describes his physical and psychological journey as torturous and painful; however, it is a path that all of us who are terminally ill must take. Ivan consistently denies he needs any assistance and, by doing so, believes he is resisting his disease. He eventually comes to understand that his family and friends are there to comfort him. Only then can he say the words, "Please come here and help me."

This chapter deals with dying patients and medical treatment in the latter stages of their disease. There is a crucial point that all dying individuals must understand as they move toward death: in most cases, their involvement with physicians, nurses, and medical institutions, such as hospitals or hospices, will continue to increase and become a dominant aspect of their lives.

The patient may very well be at peace with dying and have every intention of being surrounded by family and friends when it is time. He or she may have signed do-not-resuscitate orders or requested not to be placed on life support. However, divorcing yourself completely from the medical establishment in our contemporary society is not necessarily in your best interest.

The thrust of this book is to make the process of dying a systematic, understandable, and natural process. Nevertheless, it would be wrong to deny that there are moments-and even extended periods of time-of psychological rage, family dysfunction, and general chaos. These times can seldom be avoided although their impact can be lessened through the efforts I discussed earlier on these pages, such as planning, communication, and faith. The final days in the hospital can often be the most chaotic just at the point when peace may be what is needed.

Why is this so?

It all goes back to Ivan llych's simple request, "Please come here and help me." The body as it progresses through the disease process does not give up. Bolstered yet battered by drugs and other interventions such as radiation treatments or surgical procedures, the body is at war. And that war is devastating to the patient. There is pain, often severe, and psychological disorientation. Medical assistance is invariably needed to try and maintain the status quo.

Unfortunately, in the medical community, death is often considered the unnatural enemy. Writing in the Journal of the American Medical Association, Dr. Jack D. McCue states:

Dying, which was once viewed as natural and expected, has become medicalized into an unwelcome part of medical care. It has been distorted from a natural event of great social and cultural significance into the end point of untreatable or inadequately treated disease or injury. Worse, death has become medicine's enemy-a reminder of our limitations of medical diagnosis and management.

Without question, this attitude is partially a product of modern technology. Modern science seemingly provides us with a chance to cure anything and everything. It is no wonder then that the person dying becomes a medical pariah, a bearer of death whose terminal disease defies the "technologic" of modern medicine.

Nevertheless, as a critical care physician, I believe the medical community as a whole has improved its attitude toward the terminally ill patient—if not toward death itself. Physicians who might blame the patient for certain disorders such as AIDS or lung cancer, which result from smoking, have come to understand that "terminal" is a human reality. They are not the moral begetters and determiners of who can justifiably have a terminal condition. Our role as medical practitioners is simply to administer to the suffering.

Many physicians have lost the sense that a terminally ill patient reflects their inability to "save" everyone, and perhaps, have also lost the consequent notion that a terminally ill patient must in some way carry the "blame" for his or her illness. A terminal diagnosis always hits hard and the victim, as well as those who care for him or her, is caught in an overwhelming sense of loss, fear, anger, and frustration with the common core of mortal human existence.

I also believe there has been an increased public awareness of diseases in general. Society has become better educated and more informed in general due to the increased role of the media and television in our lives. Drs. John W. Games and H.James Brownlee.Jr., writing in the January, 1996, Medical Clinics of North America note:

...many laypersons in the United States are now more sophisticated about health issues and treatment options. Although the word cancer [for example] continues to carry a significant emotional charge, a growing segment of the population now realizes that death comes in a variety of forms, many of which are treatable, if not curable in some cases.

Years ago, the word "disease" was unspeakable in our culture. We didn't discuss it. We whispered its name to each other as though it was a naughty word. Today, we are more accepting of the fact that disease as an entity is not a selector. Its impact is present solidly across the board. The absence of secretiveness has allowed caregivers, counselors, and families to step forward and work better with the sick. It is no longer the sole responsibility of the physician to provide support to dying patients, it is now everyone's concern.

A final factor that has improved the medical community's attitude toward the terminally ill is the opportunity, through modern treatment techniques, to make them more comfortable physically. We are much more sophisticated about dealing with the health problems of the terminally ill. Two generations ago, a patient was not told his or her disease was terminal. It was thought that an "ordinary" person could not handle the distressing news. Now, however, health care professionals know that a fully informed patient is much more receptive to treatment options. I do not think it is a coincidence that honesty has been accompanied with increasingly better medical practice.

In summary, the sensitization of the health care field, the increased knowledge of the average person, and the ever-improving treatment of serious diseases have all come together to create a better atmosphere and understanding between the medical community and the terminally ill patient. Although the situation is not perfect and never will be perfect—death will remain the physician's primary enemy—the recent advances in medicine and in quality of care need to be recognized.

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CONTINUED on Page Two

© Copyright 1997, National Kidney Cancer Association