Sunday, February 3, 2013

Western Bioethics Ignores the Family

At the end of my stay in Singapore I participated in a conference on "The Ethics of Family Involvement in Healthcare," sponsored by an international research consortium I'd not encountered before but whose mission I was totally in sync with:
Despite many attempts to broaden its ethical gaze beyond the patient-centered focus of traditional medical ethics, bioethics remains strongly individualistic. The patient is treated as a self-interested individual unencumbered by personal relationships, and the principle of self-determination is dominant. However, many areas of biomedicine call for a more relational perspective. This international collaborative project on family ethics is about just that.
In my clinical work I've been very attentive to the family context of my patients, but in my work on ethics it's the neglect of the individual's responsibilities as part of a society that I've attended to. I've argued ad infinitum that medical ethics - especially in the US - has attended too exclusively to the needs and interests of the "numerator" (the individual) without attending to the needs and interests of the "denominator" (the society the individual is part of). In the US that focus has led to wildly excessive health expenditures and neglect of public health and other social goods.

In 1989, during my first visit to India, I visited the psychiatry department at Banaras Hindu University. A resident who was Indian by birth but who'd lived in the US through his teen age years and seemed very American was showing me around. On a hospital ward I saw an older woman combing the hair of young adult patient. I asked about what I interpreted as remarkable nursing care. The resident explained that this was her mother, and that patients were accompanied in the hospital by family members. I then asked a very American question - weren't the patients worried about privacy and confidentiality? The resident, despite having grown up in the US, simply didn't understand my question. He explained that their worry was about not being extruded from the family.

My question showed that I'd been more influenced  than I'd realized by the tendency in US psychiatry to blame the family for the patient's problems. When I trained as a resident (1965 - 1968) and did a fellowship at the Family Studies Unit at the National Institute of Health (1968 - 1970), the concept of the "
schizophrenogenic mother" was still widely accepted. When I was responsible for a hospital unit at the Massachusetts Mental Health Center (1970 - 1973), I was concerned that many staff members had a hostile view towards families, and often made them feel unwelcome, and I did teaching sessions about the important role of families as caretakers. But at Banaras Hindu University my reaction focused on fear of not having privacy, not fear losing family ties.

I believe the tendency of US medical ethics to see the individual as an atom of self-interest and threatened rights comes from two main sources - (a) the anti-family tilt of American culture in the last half of the 20th century and (b) an effort to give the patient more authority and power in the patient/physician relationship. This latter aim has led to a beneficial and overdue rebalancing of the interaction between patient and physician elegantly conceptualized in the concept of "shared decision making," but US medical ethics needs to incorporate more recognition of the role of "families of origin" and "families of choice" in the ethical equation.

There's no way to make clinical ethics tidy. Sometimes families are intrusive, hurtful, and even profoundly destructive. Somtimes they are nurturing and crucial for an individual's well being. And, as most of us have experienced, family involvement is typically a blend of delight and exasperation. Sorting out the situation is what makes the health professions so challenging, so important, and so much fun!

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