The Moral Tragedy of Chronic Illness

http://www.pbs.org/inthebalance/archives/whocares/the_challenge/arthur_caplan.html

A few weeks ago I was presented with the following case; a young woman, sixteen years of age, had been brought to a psychiatric facility in Philadelphia. She suffered from anorexia. The staff of the hospital called to ask a very simple and straightforward question-was there any end to their obligation to care for this young woman?

This simple question presents some of the most profound ethical questions raised when an illness is chronic. And it also reveals some of the uniquely problematic and disturbing aspects of America's utter failure to deal with the realities of chronic illness.

The young girl, lets call her Loren, had suffered from anorexia since the age of thirteen. She had become very concerned about her body image about the time she began to undergo puberty. She was obsessed about her weight. She found herself very satisfied by feeling in control of her body. Bulimia and dieting became a way of life for her.

Her parents, who had divorced when Loren was ten, became concerned about her obvious loss of weight shortly after her thirteenth birthday. They had read about anorexia in magazines and seen a television program on the subject so they were quite terrified as their daughter began to grow thinner and thinner. Each parent tried to talk with Loren about the weight loss but she would simply withdraw or deny that anything was wrong.

The issue of weight loss became an issue between the parents as each one struggled to try and respond to their daughter's behavior. Each blamed the other for placing too much emphasis on food, on fashion and for pressuring their daughter in a variety of other ways.

Eventually, as Loren's weight dipped well below one hundred pounds on her five foot five inch frame, and as her friends and teachers began to make nervous comments, the parents decided to look into getting some form of treatment for Loren. What they learned amazed them.

The mom had no real health insurance from her job. The dad did but it had very limited benefits for outpatient, non-hospital services. The only way Loren would receive any care from a mental health professional was if she needed to be institutionalized in a hospital because her loss of weight was directly threatening her life. There were outpatient clinics and counseling for kids like Loren but these cost hundreds of dollars per hour and were well beyond their means.

The lack of coverage by any insurance programs meant that an adolescent girl with a serious disease could only receive care if the condition degenerated to the point where her life was in peril. While Loren did have a few sessions with her high school psychologist she quickly realized that Loren's anorexia was beyond her capacity to treat. So Loren wound up bouncing in and out of the emergency room at a number of psychiatric hospitals.

When her weight got so low that her doctors thought she might die she would be admitted for a three or four day stay. Her insurance carrier was always on the phone quick to demand that she be discharged since her insurance only covered required acute care services and anorexia was not in itself a basis for treatment.

Nothing was done to get at the underlying core of Loren's illness. Chronic mental illness is simply not covered by most insurance plans. This meant that Loren had to be in crisis to gain entry to health care. Not only is this inefficient but it had the effect of turning the health care providers against this young woman since the only time they saw her was when she was so emaciated that she was almost dead. They felt they could do nothing for her to get at her disease and having her appear periodically in their intensive care unit was frustrating to them beyond their endurance.

In one sense the answer to the medical team is clear. They must continue to treat Loren. They would not even think of turning away a heart attack patient no matter how many times they appeared in the emergency room. But chronic illness is not seen in the same light. Chronic illness stigmatizes those who have it. It makes them seem non-compliant and uncooperative. And the acute health care system where Americans put the bulk of their health care dollars has neither the orientation nor the services to cope with the problems of a Loren. The stigma of chronic illness only serves to reinforce the fact that a person with a mental illness like Loren is kept from gaining access to the services she needs.

If Loren needed a life saving transplant, no matter how long the odds, no matter what the cost she would get it. Americans do not say no to sixteen-year-old girls who are dying. But if Loren has a disease that kills her slowly, that stigmatizes her as crazy, that is frustrating to treat and lacks the glamour of having a hi-tech solution then it is all too easy to say no to her and the tens of millions of other Americans with chronic illnesses. And that is a moral tragedy.

Caplan is the director of the Center for Bioethics at the University of Pennsylvania.