In health-care reform, don't forget the patient

Arthur Caplan

February 22, 1993|By Arthur Caplan

MY father-in-law recently died of colon cancer. He spent his final weeks in a hospital bed, which afforded me an unwanted but important perspective on how well the health-care system deals with terminally ill patients.

First the good news -- a good deal of progress has been made in allowing terminally ill patients to control the use of medical technology. Doctors were generally very willing to abide by my father-in-law's wishes about aggressive medical care. He said he did not want any extraordinary forms of life support or heroic measures, and none was given. It was not hard to get agreement on a "no resuscitation" order once that time had come.

Those who think that there are large sums of money to be saved by encouraging the more conservative use of high technology on dying patients may not realize that clinical practice is already moving rapidly in this direction.

Now the bad news. It was not the life-and-death decisions but the routine, mundane activities of hospital care that were a source of ethical vexation. None of his doctors really wanted to tell him that he was terminally ill.

I finally asked him what he wanted to know and, when he said everything, spent a couple of hours talking about his diagnosis and what he could expect in the time that remained.

Once he got over his shock and sorrow, he went so far as to tell me about his will and what he wanted in the way of a funeral, since he was very concerned that his death not be a burden to his wife and family.

Those in white coats are not the only folks who have a hard time addressing the subject of death. When the topic of hospice or home care arose, I told my mother-in-law to call her church to find out how to make arrangements.

Despite the fact the hospice was church-affiliated, local church officials did not have a clue about what to do. I asked other clergy who came to visit about hospice and they, too, were at a loss. There is absolutely no excuse for leaving talk of hospice and home care for the dying to doctors.

The doctors and nurses were, on the whole, good people who did an outstanding job of caring for their patients.

But our hospitals are ridden with ethical micro-problems that grate incessantly on a patient's and family's nerves.

The delivery of three meals a day for weeks to a man who could not possibly eat a morsel would have been funny if it were not so sad. Chairs that would support a visitor comfortably for an hour when they needed to be occupied eight or 10 hours a day drove me nuts. Promises to be back in a minute to do something that were followed by mysterious, unexplained disappearances that stretched into hours left many a family member seething.

The major source of these little irritants is that doctors and nurses are too busy. The pace they follow creates an environment that is as caustic to human feelings as cancer is to the human body.

It sometimes took a busy nurse more than half an hour to administer a shot to relieve pain.

Senior physicians spend less than a minute in a patient's room when they visit, and they are too harried to visit very often. A family member with a question stands a much better chance of finding the doctor by hanging out near an elevator instead of the patient's room.

A good rule to follow about hospitals is never, ever go alone. If you are very ill, someone needs to be present to act as your advocate, gofer and confidant. A good corollary to follow is don't go on a weekend. Staffing drops to a minimum, and students are in charge.

The work level of big hospitals creates a huge problem for the coordination of information about each patient's diagnosis and treatment plans. Nurses coming on a new shift or part-timers working on a weekend often have no idea of the patient's status or what the doctor is planning to do next.

The doctors themselves are not always on the same page. It is easy to see why, since beepers, pagers and answering services are always beckoning. When calls are not returned for seven or eight hours, then workload levels have risen well beyond what patients have a right to expect.

One of the nastiest problems in hospitals is the continuing parade of persons who have tasks to do in the patient's room. Garbage is taken out, mail delivered, newspapers hawked, cable TV adjusted, food brought in, vital signs measured, baths administered -- the parade of humanity is uncoordinated and never-ending. My brother-in-law and I counted 24 entries alone in one eight-hour weekday shift.

Add to this stream of humankind the fact that lights in a room with two sick people in it rarely dim (and noise never subsides), and you have created a perfect sleep-free zone.

Backbreaking workloads in combination with cold, institutional environments can go a long way toward defeating the best of intentions and the most indomitable of spirits. As we begin the task of reforming our health-care system, we owe it to patients to try to make one that is not only more cost-effective but also a lot more user-friendly.

Arthur Caplan is director of the Center for Biomedical Ethics at the University of Minnesota Medical School.

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