Patient Centered Healthcare Ethics: Forgetting the Family

When a medical decision for a patient is being made, is the patient the only person who should be considered? In most cases, there are more individuals who can be affected by the decision than that of the single patient. The other “patients” can be members of the family associated with the patient.
In these days of patient autonomy and patient centered healthcare where physicians, lawyers and ethicists look to the patient him or herself for personal health decision making, these professionals may forget that the patient is just one member of a social group, whose members may also be affected in one way or another by the decision or have valid reasons to be a participant in a decision.

Ethicist Hilde Lindemann writing in the Hasting’s Center Bioethics Forum looks at a case where it appears that ethicists may be forgetting that there are others whose goals also need to be considered. The case: “a family consisting of a mother, a father, and their profoundly cognitively impaired 20-year-old daughter, whom they cared for at home. Neither of the parents was capable of producing any more children, but for both cultural and personal reasons, they desperately didn’t want the family line to end with them.” And so “they asked that their daughter’s ovaries be stimulated so her eggs could be harvested for fertilization with donor sperm and the resulting embryos brought to term by a contract birth-giver. They would then rear their grandchild themselves.”

Lindemann then presents the usual reaction from ethicists who look only to the “best interest” of the daughter patient, rejecting the parent’s request thus seemingly ignoring the interest of the father and mother who have been caring for their invalided daughter all her 20 years. Shouldn’t the family’s interests be recognized and accepted?

Hindemann concludes with “We need to stop assuming that patient-centered health care ethics is adequate to deal with any kind of morally puzzling situation that bioethicists are likely to face, and start paying closer attention to how families actually work” What do you think? ..Maurice.