When I discussed the stand-off with my colleague, Mrs. Palmer’s primary care physician, I told him it was the patient’s decision. That’s what my training in biomedical ethics had taught me—patients had the right to make their own decisions about their own health care. He was incredulous. He felt it was entirely up to the daughter whether or not she took in her mother. Finally, we agreed that it really was a joint decision and that our role was to sit down with both mother and daughter and facilitate a discussion between the two of them in which they each explained their concerns.
Years later, I remember this story because it was probably the first time that it struck me just how individualistic our model of healthcare is--and how unworkable that model is. When we speak of medical decision-making, the image we have is of a patient rationally weighing the pros and cons of the various alternatives that the physician presents and making a choice based on personal values and preferences. The current standard of care is “shared decision-making,” which means the physician provides the patient with the alternatives, explains the risks and benefits of each, and helps guide the patient through the decision process, but the final decision is the patient’s. If the patient is incapable of making a decision, usually because of either temporary or permanent cognitive impairment, then our expectation is that the health care proxy, usually a family member, will make the decision instead, and that that decision will be made from the point of view of the patient. The proxy is supposed to use “substituted decision-making,” which means doing what the patient would want if the patient were capable of choosing. Rarely does “shared decision-making” mean that the patient, together with significant others, together discuss what would be best for all of them. But for frail elders—and maybe for many other people as well—it is this sense of “shared” decision-making that is most appropriate.
The importance of this kind of shared involvement in medical care is highlighted in a short piece in the Journal of the American Medical Association this week. Appearing in the section labeled “A Piece of My Mind,” a pediatrician laments the decisions that were made for her father, who has dementia, decisions that failed to include the interests or well-being of her mother, his primary caregiver. At issue is not just “caregiver burden,” the topic of another article in the same issue of JAMA, although this is certainly a concern. At stake is the recognition that no man is an island.
The choices we make affect others around us, from our immediate family to our community, to the society at large. The decisions made by a single individual acting in his or her best interest may have emotional, physical, or financial repercussions. I don’t mean to suggest that making medical decisions is some sort of zero sum game—anything that helps me will hurt someone else, maybe even, as in the case of the Palmer family, the patient’s child. Often, the unit of analysis should be the couple or mother and daughter, recognizing that it is their joint welfare that we are seeking to maximize.
The US is a highly individualistic society. As we age, the limits of such a relentless focus on each person, with little regard for family, community, or nation, becomes dramatically apparent. Perhaps it’s time to rethink how we make the medical decisions that affect older people, and everyone around them.