Should We Accept Kidney Donation from our Children?

I've been looking into the phenomenon of organ donation from children to parents. Since I believe our national approach to Medicare injures future generations on behalf of us in the over 65 cohort, I wanted to see how we're dealing with the most tangible form of intergenerational transfer - organ donation.

Here's what the Handbook of Kidney Transplantation has to say about donation from children to parents:

Parents often are reluctant to turn to their children as potential donors, yet as those parents age, it becomes less and less likely that a donor from their own generation will be available. It is useful to point out to parents that their grown children are adults who are capable of making independent decisions; that the welfare of the donor will be protected in the evaluation and donation period; and that, if they exclude their children as donors, they may be preventing them from enjoying the psychological gain of helping a beloved parent. Older patients will often insist that they would have been prepared to donate to their own parents while simultaneously expressing reluctance to permit their own children to donate to them.

To my eye, the author evinces an unseemly rush to persuade us that it's right to cannibalize our children's bodies. He treats reluctance to accept kidney donation as an irrational stance. And with regard to the donor, he minimizes concern for physical and psychological risk, and envisions only "psychological gain [from] helping a beloved parent."

By way of contrast, Sharon Kaufman, professor of anthropology at UCSF, has written a wonderfully thoughtful article based on interviews with kidney recipients over 65 and their donors - Aging bodies and kinship matters: The ethical field of kidney transplant. She demonstrates that attitudes range from what I would call "entitlement" (in effect, "I have a right to your kidney so that I can go on living") to a view that transfer of body parts from child to parent is wrong (in effect, "if you need a kidney I should give it to you, but absolutely not the other way around").

Here's a vignette from a patient who ultimately accepted a child-to-parent donation:

The children talked me into it. I said, I’m not taking my daughter’s kidney! But other family members persuaded me. You know, I kind of went along with my older daughter’s insistence, and we didn’t say too much one way or another, whether I wanted to or not. But I was hopeful that I could get a cadaver—right up to the night I was hospitalized. My point was, I didn’t want to take an organ from my child. If it were the other way around, I would have gladly given my kidney to one of them, but because it was coming as a hand-me-up sort of thing, I thought about it a lot. It didn’t feel like it was the right thing to do. Help should go the other way, from parent to child. I, really, there were periods of time I just really didn’t want to do it. There was no real point in time where I decided I wanted to have it done. I just went along with the flow. I was going along for the ride because things were being arranged for me.

The clinical and ethical issues will vary from family to family. Parental age matters. A 50 year old still raising children who dies from kidney disease is "abandoning" dependents and missing out on half of adult life. An 80 year old has lived a full life span. I don't know how others would assess the ethics of taking a child or grandchild's kidney at that age. In my view it would represent monstrous narcissism.

The fact that the 2010 Handbook of Kidney Transplantation discusses child-to-parent transplantation as if the only moral issue was clearing away impediments to going ahead suggests the degree to which the technological imperative to do what is technically possible to do has gone onto automatic pilot. Organ donation from a child to a parent demands careful medical, psychological and ethical attention. It deserves better than the superficialities the Handbook offers.

Fidelity and Stewardship as the Guiding Values for Medicare

I've used this diagram for many years in teaching about the ethics of health care provided to a population within a budget - HMOs, ACOs, VA, public sector mental health, and countries that provide universal coverage. Given the absurdly fragmented system we have in the U.S., it's difficult for patients, physicians and the public to have a sense of the denominator we're part of (the population served under a budget).

I believe the diagram shows the right ethical perspective on Medicare. We want attention to the needs of the individual to predominate in the exam room, but not to the total exclusion of awareness of our responsibilities to others as well as to ourselves. We want attention to the needs of the population to predominate at the policy level, but not to the total exclusion of awareness of the implications of policy decisions on individuals.

Ability to embrace complexity is part of maturity. I'm convinced that if we were able to survey the Medicare population, a large majority would embrace the moral perspective shown in the diagram. Wider endorsement of fidelity to the needs of the individual AND stewardship of shared resources on behalf of the population will provide the ethical basis for doing what we need to do to make Medicare secure for the future.

My aim for this new blog is to encourage my fellow members of the Medicare community to give stronger voice to fidelity AND stewardship as the proper guiding values for Medicare reform.