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Sound Familiar?
Human Reproduction

Hilde Lindemann

, 06/18/2009

Sound Familiar?

(Human Reproduction) Permanent link

Not long ago, a group of bioethicists were chatting about a case that was worrying one of us. It concerned 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.

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.

Our worried colleague said, “The physician who involved me in this case hasn’t had much interaction with the daughter, but he’s pretty sure she isn’t capable of understanding the procedure or its consequences. It seems to me that the parents are using her as mere means to their own ends, and the physician probably shouldn’t go along with it. But I’d like to know what you think.” 

“Well,” said Tom, “I don’t see how you could justify the procedure unless it’s in the daughter’s best interests.”

“Yeah,” said Dick. “Could she benefit somehow? For instance, would the child take care of her when her parents are too old to do it anymore?”

“Hardly seems fair to the child,” objected Harry. “But I’m more concerned about the daughter. If the parents are the primary caregivers for their grandchild as well, they might neglect her.”

“That’s a side issue,” argued Jane. “The real point is that you can’t justify a procedure that risks the health and life of an already impaired patient simply for the emotional gain to her parents.”

“At least not without the fully informed consent of the patient,” Jean amended.

“Right,” nodded Joan. “And that means the patient. The surrogate consent of the parents isn’t enough, considering the obvious conflict of interest.”

“Absolutely,” said Harry. “Parents shouldn’t be granted the authority to make surrogate decisions in cases where the parents get all the benefit and the patient gets all the burden.”

“Certainly not,” said Tom. “This is a request for clinically nontherapeutic, cosmetic reproductive medicine for parental indications on a patient unable to consent. Granting it is clearly not in the patient’s best interests.”

“Is it possible,” Jane wondered, “that the daughter needs to be protected from her parents?”

“Perhaps a court-appointed guardian for the daughter would be in order,” suggested Jean.

This conversation strikes me as a pretty representative of the ways that bioethicists tend to order the moral universe. You start with the patient’s best interests as determined by a burden-benefit analysis, shift smoothly to a discussion of informed consent and surrogate decision-making, and parse the problem as a conflict of interests, possibly one to be resolved by court order.

It’s all business as usual, the standard grist for the bioethical mill. There are patients and there are caregivers, and caregivers are all answerable to the same ethical code of conduct, regardless of who they are.

It depresses me, really. I sometimes wonder if all my colleagues are like the slave child Topsy in Uncle Tom’s Cabin, who never had a mother and never was born, but suspects she “just growed.” It’s hard to see otherwise why they evince so little understanding of the ethics that govern relationships of familial intimacy.

Your mother isn’t simply your informal caregiver—she’s your mother, who probably loves you deeply if not perfectly and who will be an inextricable part of your life even after she herself no longer lives. Your dad likely loves you too and occupies his own place, whatever it might be, inside your psyche for all of your life.

And if you’ve raised children you also know the brutal strength and resilience of the parent-child bond. Do bioethicists simply forget what their families are like when they leave home in the morning?

My co-conversationalists might have been talking about three enemies rather than two parents caring for their badly damaged child. In Hobbes’s “war of all against all,” strangers in a cold and hostile world might have to treat one another with suspicion, looking out solely for their own interests and determining how to get what they want by means-ends reasoning.

In our world, where conditions are somewhat better, strangers often help each other without calculating what’s in it for them. And in families, where hostilities flare up, to be sure, but where there are also affection, long-term commitments, and the stability of the familiar, what’s in one person’s interest is often, for that very reason, a matter of importance to the others.

It’s not that interests don’t conflict in families; they do, and sometimes to tragic effect. But to see families primarily as clusters of self-seeking interest maximizers is to miss what is arguably the most important thing about them: the ongoing and enduring relations of intimacy that bind their members together. These relationships permanently imprint the people caught up in them, often to the point of shaping the course of their lives: a mother takes a job in Bangladesh and her children learn Bangla; an accident leaves a man paralyzed from the neck down and his wife is swept up in the consequences.

I’d be reluctant to move straight to the thought that the parents would be treating their daughter as mere means to their ends unless I were also willing to use that kind of language for what the daughter is doing to the parents. She has, after all, no choice but to make instrumental use of them, yet that way of talking here is distinctly odd. It doesn’t capture anything of the intricate practices of love and responsibility that permeate situations like this one, where there are no exit options even though none of the parties chose how they must live.

If the parents are decent people who have provided good-enough care for their daughter all these years, it’s hard to see the relatively small sacrifice they wish her to make for their sakes as exploitation or abuse. It’s precisely because familial relations of dependency and care require people’s lives to be closely intertwined for long periods of time that everyone involved in them must sometimes give way to the interests of the others.

In this respect, the ethics of families is distinctly not patient centered. Everyone counts, even when extreme vulnerability requires some to count more than others.

I’d also want to be very careful not to dismiss as unimportant the parents’ longing for the family line to continue. It’s not one of my values, but that’s easy for me to say: I have six children and four grandchildren. I don’t know how I would feel about it if the possibility of grandchildren were ruled out forever by the kind of tragedy this family has had to endure. The point is, though, that my own economy of values is here quite irrelevant.

Many people have a deep desire that their family not end with them—so deep that when they can no longer hope for it to go on, the loss darkens the rest of their lives. The tens of thousands of dollars apiece that childless couples spend on in vitro fertilization surely attests to how passionately important this desire can be. Why, then, should we dismiss it in the case at hand as “simply emotional”? There may be nothing simple about it.

That bioethicists so frequently behave as if the people they deal with are either health care professionals, patients, or Hobbesian strangers is all the more depressing when you consider how very many patients enter the health care system with families attached. Isn’t it time for us to come to terms with this fact and complexify our moral theories accordingly? 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.

If you think that isn’t important, go ask your mother.

 

Posted by Greg Kaebnick at 06/18/2009 08:46:30 AM | 


Comments
First, it is not a tragedy to have a child with a severe or profound disability. Some people have disabilities, and some don't. It is that simple. It's ableist to say disability is a tragedy, and I'm pretty offended by that assumption as a person with a disability who works in the disability rights community. I hope that in the future you will embrace all forms of human diversity rather than single out people with disabilities as a tragic population, and stop framing the parenting of a child with a disability as an unbearable burden. People have a lot more potential to live unexpected, powerful lives than you're affirming in this article. There is also far greater capacity to live lives of greater community than most people realize, more supports available than are currently apparent. There are some powerful forces lined up to keep us from thinking outside the box---unions, institutional bias, social attitudes. Lots and lots of money. That 20 year old is worth a great deal as a Medicaid "bed" in an institution...over $100,000 a year.

I also think that you're neglecting to consider radical, inclusive visions of a) being a parent with a disability and b) person-centered planning and community support. No cultures on earth fully accept these sorts of radical visions. The struggle for personhood for people with disabilities exists in all cultures. If you don't think people with disabilities haven't considered their human rights very deeply, ask the team of international disability rights activists who spent two years drafting the UN Convention on the Rights of Persons with Disabilities.

Also, in terms of the case at hand, I don't think the fact that the 20-year-old's eggs would be removed with some kind of needle and then inseminated through artificial means is really fundamentally different in human rights terms than some man sticking his penis in her and swiveling it around hoping to dribble some sperm on her eggs and make a baby, without her consent or understanding.

In real life, what are the parents' long term plans for caring for their daughter? What if they died tomorrow? Does she have a special needs trust? Is there a plan for guardianship? Have the doctors referred them to people who can help with these plans? And regardless, the case would need to go before a hospital ethics review board. Hopefully, depending on the state, there would be probate statutes in place for providing a guardian ad litem. IF the review board is familiar with disability ethics, and IF the GAL were properly trained the rights of people with cognitive disabilities, then maybe her rights as a human would be protected.

There are a lot of IFs because again, there's a lot of ableism floating around, and it is as deep, pervasive and financially fueled as racism, and as tough and painful to combat.

Amber Smock
Posted by: ambity@aol.com ( Email ) at 6/29/2009 11:44 PM