Your Relationship With the Medical Community

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 "Critical Caring." Here the author addresses the many issues that arise between the patient and the medical community. It is an excellent introduction to this topic that is especially valuable for anyone who has just been given a diagnosis of a terminal disease.

This chapter deals with the extremely complex relationship between the terminally ill patient and the medical community. On a personal level, dying is a simple and private matter. Unfortunately, this is not the case with contemporary America's medical community, which involves hospitals, ambulances, and hospices; primary care physicians and specialists; and diagnostic imaging centers and home health care organizations. In addition, there are insurance companies, which consist of everything from government programs such as Medicaid and Medicare to private Health Maintenance Organizations (HMOs). The terminally ill patient must navigate his or her way through this medical maze as well as possible. I assure you it will not be easy.

A friend of mine told me the story of a fifty-year-old wife and mother who was dying of breast cancer. Her highly educated, university-employed family decided to provide her with home health care and cautiously prepared for her death. They made it possible for friends to visit and say good-bye, which created a very peaceful situation. Everything was under control until the university's insurance company refused to pay an ambulance bill. It was not a lot of money, but the "unfairness" and "unsympathetic attitude" of the insurance company almost sent the family, including the patient, over the edge. The family did not return to an even keel until my friend advised them to simply return the bill to the university insurance office for reprocessing and to forget about it for six months.

Terminally ill patients and their families have too much to worry about to allow medical industry bureaucracy to interfere with the dying process. Yet, the medical establishment is absolutely necessary and can be a great help to everyone. It can also create unnecessary confusion and problems.

For example, a recent research study published in the Journal of the American Medical Association and widely reported in the popular press concluded that physicians and other health professionals are often ignorant of the wishes and directions of dying patients and their families. Fewer than half the physicians knew their patients did not want to be resuscitated. Do-not-resuscitate orders were written 46% of the time just two days prior to death instead of being well- planned in advance.

The study further noted that most physicians and caregivers do not communicate well with patients or their families about death. Doctors attempt futile and agonizing heroic survival efforts for terminally ill patients who would be better served by being made comfortable. Many physicians find themselves in conflict with their oath if they do not save the sick, even when such efforts are useless, expensive, and ultimately detrimental. The patient needs to sort out his or her desires and make them known and noted.

Medical students and residents who are faced with learning massive amounts of scientific and medical knowledge, which will double and triple before they even go into practice, find it difficult and irrelevant from their point of view to take contemplative classes on ministering to the terminally ill or studying the ethics of dying. Sometimes these courses are not even offered or, at best, sporadically taught in academic medical centers. In addition, pupils pick up the subliminal message from physicians, nurses, and other health professionals that it is easier to hide behind complicated high tech machinery or complex pharmacological compounds to keep patients alive instead of engaging in a straight-forward discussion on death and dying.

Of course, patients and their families often share the blame for not realistically confronting their own situation. Who would not want everything possible done to save a parent, spouse, or child? Plus, few people have the sophisticated medical knowledge needed to understand the complexity and effectiveness of what is currently being done or plans for future treatment.

In a sense, what both the medical profession and the patient need is someone to step in and make the right rational decision. In Shakespeare's play, The Tempest,* the magician Prospero plays this role. At play's end, he sorts out all of the conflicts between the victims of the shipwreck and the island inhabitants. Unfortunately, not many Prospero's walk the hallways of today's hospitals.

Therefore, health care professionals, families, and terminally ill patients must struggle with many difficult medical decisions. Dr. Patrick Francis Sheehy in his book, On Dying With Dignity,* describes the best outcome:

If the patient has been fortunate enough to have a physician who can be completely honest with him, the patient will begin to see he has a second option. This is to exercise the right to quit frantically seeking a miracle or cure and face the fact of his death.

[* NOTE: By clicking on the title and buying this book from Amazon.com, you help support LPO.]

CONTINUED on Page Two

© Copyright 1997, National Kidney Cancer Association