Power inequality in end of life decision making: The case of Barbara Howe
At the VP-Net 2006 Spring Institute, Adrienne Asch argued that cases like those of Barbara Howe, and the situation she and her family found themselves in, is of particular concern to the disability community. She used this case to illustrate how the values of the healthcare providers can often override those of the patient and/or their family. This example illustrates the power imbalance that exists in the existing end of life care system.
Barbara Howe was a 79 year old woman with ALS (Amyotrophic Lateral Sclerosis). She had lost her capacity to speak, she was alert. She had three daughters, two of whom were visiting constantly. She had been in a hospital for many years. Now why she was in a hospital instead of in her home with personal assistance I don’t exactly know. She needed a very, very great deal of assistance. She needed to be moved and turned every few minutes in order to prevent pressure sores. She cold not speak, she could not move. She could no longer make very many gestures facially, so her ability to respond was extraordinarily limited. She had named one of her daughters as a health care decision maker for her and had instructed daughters—and the staff understood these instructions—that as long as she was appreciating visits from her family she wanted to remain alive. No one disputed that statement, and no one disputed that she had named her daughter as her decision maker. What then became disputed was that…she was continuing to enjoy those visits. It was never very clear on what basis they disputed that. It was clear that her health care insurance had been exhausted—this wouldn’t probably exist in Canada—it was clear that she did experience physical discomfort. It was clear that her health care providers experienced emotional discomfort at continual administrations of food, antibiotics, physical turning, and were uncomfortable with the lack of gesture and responsiveness from this woman. The hospital went to court to remove her daughter as a health care proxy and to say that the treatment she was getting was futile and inhumane and that she should be removed from it…What happened was that Barbara Howe died before the conclusion of things. But a settlement was reached when, according to her attorney, a very reluctant daughter said ‘all right if my mother’s still alive by June 30th I’ll be willing to end respiratory support.’ This was in March. Her mother died in May.
Adrienne Asch argued that the hospital should never have gone to court in this case for three reasons:
First, because the last time this woman was able to communicate she was enjoying her life; we must assume that she continues to enjoy her life, since she has not expressed a view to the contrary.
- Second, because she had appointed a medical decision maker in her family who was in frequent contact with her, on whose judgment the assessment of whether her she was continuing to enjoy the visits should have depended;
- Third, if they took a view that valued family decision making they should have respected the family’s decision.
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