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.
posted by Maurice Bernstein, M.D. @ 5:50:00 PM
8 comments
8 Comments:
Say goodbye to all these messy concerns about "ethics" if Obamacare gets passed. You won't have to worry about doctors and patients making "decisions." All concerned will be forced to merely follow some untrained bureaucrat's mandated rules and that will be that. The aged will be left to die without care because it's just too darn expensive and babies will be aborted at will.
Won't it be wonderful not to have to worry about "ethics" any more?
Ethics goes beyond "mandated rules". That's why people will protest even, as in Iran, risking their own lives. ..Maurice.
ummmm.....back on topic.
It seems like a bad idea for the mentally or developmentaly disabled to be used as family fertility extenders. I think I would be OK if they needed a kidney from her or something like that but to 'make' her become a parent unwillingly seems harsh on the kid and her unnessicary hormone and surgery trip she would be put on for egg harvesting. If they had a son how appropriate would it be to 'harvest' his sperm. I know for her it would be less sexual in nature but egg harvesting is very tedious and involved in a woman.
SuSuseriffic, thanks for steering us back to the main topic. First, it would seem from the story that the daughter would not really assume the responsibility of a parent since her own parents would be caring for the child (of course, in addition to the daughter.) Second, you are correct, obtaining eggs in a female is grossly more complicated and hazardous to the woman than obtaining sperm from a male. How would the parents feel if, on their decision, her daughter died from a hyperstimulation syndrome or complications of the surgical procedure?
Nevertheless, the issue is whether any decision where there is risk both in the procedures involved but also in the outcome (the parents die prematurely and society is left with a disabled woman and an orphan child) should not allow any option except doing the procedure for the best interest of the patient herself. Obviously, the intent of the procedure is not for the interest of anyone except the father and mother.
On the otherhand, one could argue and as Lindemann suggests that the decision should be based on the overall benefit for the entire family.
By the way, SuSuseriffic, do you really think comparing the risks/benefit that procuring a kidney, presumably without the fully informed consent of the mentally impaired daughter, is more ethical than obtaining her eggs? ..Maurice.
I'm assumingthey wouldn't take a kidney from her unless one of her parents was dying... so that is less troubling for me. Even if the daughter was not actually parenting the child ...she would have offspring unintentionaly. Would the child know that her mother is who she is?
I think the idea that 'extending the line' does benifit the family- is an idea I don't really care about. It is not like the 'olden days' where all financial and property right only went to direct decendants. Would they keep trying to have a baby untill they got a male for example? Is adoption not a logical soulution?
SuS, I think the whole idea behind the patient's parents wanting to harvest their daughter's eggs is to prevent their "spiritual death" upon their actual physical death later in life. While I do not personally think that this idea is nausea-free, I can understand that whether the reasons are cultural, personal, religious, or ethical, these concerns of familial continuation are valid.
This is a very interesting debate, and I do not believe it is one that can be answered simply. Were I to have an incapacitated child, I do not know what I would consider in regards to family and bloodlines. I do think that we cannot assume these parents are throwing their daughter's best interests out the door for their own peace of mind.
-NG
Nicholas, then I would presume you would find that it would be the family's best interest with the cognitively impaired daughter as part of the family (and therefore in the interest of the daughter) to prevent the family's "spiritual death"?
I think that if the daughter cannot speak for herself, then her parents who have invested their life to care for her, have the moral right to speak for the interests of their child as they have acted toward her best interests in the past. The only question though, in the creation of another child in the family, is what is society's interest in their decision? ..Maurice.
Whatever happened to genetics and survival of the fittest? Is this cognitively impaired woman actually meant to pass on her genes? So her parents want a grandchild - if the daughter were competent, would they insist on egg harvesting if she'd made a conscious decision not to have children? It's not for them to decide, or insist, whether she's competent or not.
KJB
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