Picking who gets your baby's heart

Lillian O’Connor is one month old, and won't survive without a new heart. Kaylee Wallace is two months old, and due to a brain condition, won't survive once she is taken off a ventilator.

Their story has raised a number of ethical concerns.

They are in the same hospital, Toronto's Hospital for Sick Children. Their parents heard each others' story, and Kaylee's parents offered their girl's heart to Lillian.

Kerry Bowman, an ethicist with the Joint Centre for Bioethics, called that a wonderful human gesture, but can't be done.

Bowman, quoted frequently on this case in the media, worries that such promises put us on a slippery slope, by connecting the death of one person to the survival of another. It's a small step from there, he warns, to saying that since the donor will die anyway, why not allow euthanasia to speed up the process?

The other fear is that allowing people to pick who gets a family member's organs might mean that the most deserving (as in, the sickest) patient might not get the life-saving transplant. People might want to give the organs to someone who is like them, socially or culturally.

They might even try to sell them, ethicists warn.

It seems there is no shortage of slippery slopes in this story.

Comments

[the Health Advocate (Alisa)]

Stuart,

This is an interesting case you bring to light and appropriately timed as April is National Donate Life Month here in America. There is something called Direct Donation in the American UNOS system. If a person is registered on the list as being in medical need of an organ, they can be tested first to see if they are a match, if the family of an organ donor makes such a request. My late brother was an organ donor and two of the four recipients he helped came by way of Direct Donation. We learned of their medical plights through church. At the time of my brother's death we remembered these individuals and made the request. They each turned out to be matches and received life saving organs. Had they not been matches, the organs would have gone to the first individuals on the list who were matches. I posted on this topic recently at my own blog (http://enbloom.wordpress.com).

We never had any issues around euthanasia. My brother suffered a brain death secondary to trauma. Yet, as individuals and families continue to talk candidly about end-of-life issues (their values, their wants and needs) and more people take advantage of advanced directives (including living wills and DNR orders), there will be less doubt around the issues of patient autonomy and nonmaleficence (do no harm) being respected. While, I believe organs should never, under any circumstances be purchased, direct donation is an ethical option. Consent has to be given in order to donate organs, without that consent the organs remain with the deceased. For some, the knowledge that they were able to help someone (already waiting and in need) aids in the grieving and ultimately, the healing process.

The argument that direct donation sets up an ethical slippery slope is unrealistic. 1) Better for an organ to go to a matching recipient lower on the list than to not be donated at all. 2) I'm sure the parents of the dying daughter would much rather their daughter live than she die, in which case they will donate her heart. These parents are not choosing the life of the other sick child over their own daughter, rather they are trying to gain some meaning and some healing out of the tragic loss of their own daughter. As someone who has taught health care ethics to medical (and other clinical professional) students and has lived through the experience herself, this is how I see the issue. Thanks for continuing to bring such complex issues to light.

[deana]

Er, that's supposed to read "scurrilous." As the unpopular opinion, I have to make sure I don't make any typos. Non-PCers are called crazy for any little thing.

[deana]

When you look out on to the highway every morning and survey the millions of people going to work, do you ever wonder what jobs all these people do? They don't all work as cleaners, store clerks, doctors, factory workers.... Many of them simply yakk for a living, giving the impression they are minding the store for society. They wait for appointments with journalists to record and publish their updates. The yakkers often occupy mystical looking offices (I've been to the Centre for Ethics at McGill). She (the resident ethicist) is quoted all over the place although no one ever knows what she says. But this is why she makes the drive in every morning. Ethicists now, have really come into their own, playing interference for special interests. They sell their commute, that's all.

About this article. Organs, once you want to donate them, are no longer yours. Show any signs of interest in the process, and you're immediately complicit in opportune medical murder. To get the perks (disposal of a burden by being a hero) you have to know your place. The guys who hold the patent to the process and pay the malpractice insurance claims say who gets the organs. Donation isn't really donation, it's a marketing board.

No longer yours, the organs get assessed and given to recipients on a priority list. This list has nothing to do with who is the sickest. First, victims of medical malpractice get a replacement organ as risk management for the doctor and hospital. Next come the rich or influential, and then the poster children who will advertize those occasions when a recipient does survives a transplant. Families are also looked at. Those who will glow with vacuous pride at the next transplant games will get their recipient to the top of the list. It's Organ Idol...

Strangely enough, anyone who specifically refuses a transplant but them agrees to one, will also get priority. This industry likes its converts.

Look at the pictures in the newspaper article that goes with the story. The young parents show all the signs of falling for environmentally-induced importance. They feel like they just graduated med school. Once home back in the 'burbs, the penny will drop.

So all in all, what a great set up... having the ethicists be the most unethical? Even I can't be called anything remotely as scurrilous. I am what I seem. I am a thinker. I am ethical.

[Susan]

Bowman, quoted frequently on this case in the media, worries that such promises put us on a slippery slope, by connecting the death of one person to the survival of another. It's a small step from there, he warns, to saying that since the donor will die anyway, why not allow euthanasia to speed up the process?
http://www.callcarenet.com/