SUPPORT and the invisible family.

"I just have to believe that my mother simply isn't aware of what she's doing to me and my life." The tone of weariness and near desperation in my friend Jane's voice made it clear that if she did not believe this, she would be filled with anger and resentment at her dying mother. Despite terminal heart disease, her mother, Helen, an eighty-three-year-old former nurse, keeps opting for life-prolonging treatment. For the past eighteen months, the hospital has pulled Helen through crisis after crisis, each time discharging her back home, lucid and grateful, and only slightly more dependent than she was before. For millennia, medical ethics has focused on the doctor-patient relationship. Thus, the SUPPORT trial to improve clinical decisionmaking for seriously ill patients can be viewed as a report about the failure of this dyadic relationship. That is the way I expect most people to read it. And there clearly is a failure of this dyad: physicians who are so unconcerned about patient preferences that they don't even bother to look at them when they're placed in the chart, and patients who do not take advantage of opportunities to discuss their treatment preferences with their physicians. Helen's case, though, is different. Intelligent, articulate, and assertive, Helen has made her preferences for treatment very clear to her physicians and her wishes are being followed. The dyad seems to be working fine here. If we look only at Helen, the story seems to be an unqualified success. A very difficult case (this woman might not have pulled through this episode) managed well. Discharged back home, still in a lucid state. End of the case, a job well done. Congratulations all around for one of those spectacular successes of modern medicine. But we need to understand Jane's weariness, frustration, anger, and resentment. These are not feelings generated by a simple success story with a happy ending. We must learn to tell the story from Jane's point of view and not to end the story when Helen is discharged. Jane's story is usually not heard. Helen has many advocates--doctors, nurses, ethics committees, most bioethicists, and our entire legal system. Jane will usually have none. If Helen's case is viewed simply as Helen's case, Jane becomes invisible. The impact of the treatment on her life is not considered, her interests do not even enter the equation. At best, she is marginalized: her interests are considered, but Helen's interests always trump Jane's. Often, she is treated as a means ("family support system") for helping her mother achieve her goal of continuing to live in her invalid state. Helen does have a strong family support system and that system is Jane. The home to which Helen is discharged is, in fact, Jane's home. I cannot do justice to Jane's story here. But I will at least mention some of the things her mother's fight against death have meant for her. She has been driven to the edge of physical, emotional, and economic collapse. Her savings have been exhausted. The prospects for her own old age have been devastated--a fifty-five-year-old with a modest income has too little time left in her employable life to rebuild a nest egg for retirement. Jane clings to a full-time job and another part-time job, desperately needing the money. She also knows that if she quits or is fired, she will have to relocate or change careers, neither a simple task for a single woman of her age. Fortunately, she can do much of her work at home, sandwiched between periods of caring for her mother. Jane has no social life now and no time to herself except during the periods when her mother is rehospitalized. That's also when she can get some rest. Jane's employers have begun to worry that Jane is not doing a very good job these days. Viewed in terms of its impact on Jane's life, her mother's treatment is not a miracle of modem medicine, a triumph, or even a clear success. It is more like a disaster. …