Hospice care relies on the patient's family to provide day-to-day care. Most often, family members are committed and reliable caregivers; but when they are not, ethical problems loom. Take the case of Jeremy Benton. He is a seventy-year-old man with metastatic lung cancer who lives with his wife, adult stepson and grandchildren. Based on the disarray in the home, the loud arguing between husband and wife, and Mr. Benton's soiled clothing and bedding, the hospice assessment team worries that his wife, Lucy, is neglecting him.
Mrs. Benton, who drinks heavily, insists that she is taking good care of her husband. Once in a while, she acknowledges, she is too tired to clean him. "I get worn out from cleaning and changing him so sometimes I just let it go. And he eats what the rest of us get." Mr. Benton does not complain and in repeated conversations with concerned staff, he insists that he wants to die at home.
The hospice team, concerned as much about how he lives as how he dies, are convinced that Mr. Benton's care is woefully inadequate. Ribald sexual allusions, noisy arguments, and pungent odors are not ideal conditions in which to care for a patient who is dying, they believe. What can the team do as they reflect on the particular understandings that seem to infuse the Benton household but challenge the team's idea of good hospice care?
Mr. Benton's insistence that he stay at home would appear to be a classic expression of patient autonomy. The team's concern represents their commitment to acting in the patient's best interests. Yet, best interests are multiple and shift according to the point of view adopted. Similarly, respecting autonomy does not require unmediated or "as is" acceptance of the patient's wishes.
Sometimes the only strategy for resolving such conflicts rests with the fine art of negotiation starting with mutual efforts to understand the situation from the other's perspective. In the home where the possibilities for changing ingrained behavior patterns are limited, and the decisions rendered are not for a single treatment or event, such explorations are essential.
In this situation, Mr. Benton cannot be autonomous without considerable assistance. The team is essential if he is to stay home and receive comprehensive end-of-life care. Through negotiation and fact finding, the team can learn the meaning of "best interests" from his point of view. What are his goals at this moment in his life? Cleanliness and tranquility may be as alien to him as the odors and noise are to the team. For Mr. Benton, emotional and social ease are probably as important as his physical comfort; sadly, he might not be able to have both. If inquiry suggests that he is relatively untroubled with the situation, the hospice team can refocus their energies. They might try, once again, to work collaboratively and sympathetically with Mrs. Benton to determine the help she needs to care for her husband and to meet the team's minimal conditions for continued involvement in Mr. Benton's care. Regular monitoring and, if necessary, renegotiation may result in a solution that no one finds entirely satisfactory but one that all can accept. Often in difficult circumstances, that is the best we can hope for.
