If you’re on an organ donor registry…

You’re no doubt a generous person concerned about the vulnerable who need hope and the chance to live. But you have to be aware of how vulnerable you may be, as a registered donor on the state rolls.

My colleague, Nancy Valko, has been working for…ever…as a nurse advocate for the seriously impaired, trying to educate not only the public but the medical community itself about bioethics and how we’re navigating the new frontier of bio-technology and re-defining life and death. One of the many issues she talks and writes about is organ donation, as in this startling piece Nancy published in 2005, in which she says that ‘misguided zeal’…

has led many ethicists and transplant experts to try to develop new ways of increasing organ donations, usually without public input or even awareness. For example…the controversial issue of NHBD was developed in the early 1990s to allow families or even conscious people on ventilators to withdraw life support so that organs can be harvested if or when the heartbeat stops without a diagnosis of brain death. Most people are not aware of this and most of the organ donation web sites I’ve seen still continue to provide fact sheets mentioning only brain death and emphasizing that every effort will be made to “save your life” before donation is considered.

Other strategies propose changing organ donation rules requiring patient or family consent for donation to “presumed consent”, which legally assumes that everyone is automatically willing to be an organ donor unless they have documented an objection to it. Some states already have laws to enforce organ donation if a person has signed an organ donation card, regardless of family objections.

Recently, she wrote this:

When I first started investigating non-heartbeating organ donation (NHBD) in the early 1990s, I was appalled. This new rationale for taking organs from people who were not even considered “brain dead” really seemed to be an unholy marriage between the “right to die” groups promoting withdrawal of treatment decisions and the aggressive push for more organs to transplant…

But I noticed that when NHBD became better known and organ-harvesting protocols were being rewritten, there was a major language change. NHBD became donation after cardiac death (DCD) and the few news articles calling attention to this sea change in organ donation ethics started mentioning patients who were “imminently dying”. Apparently, people were already conditioned to the term brain death and thus some kind of phrase using death was needed and donation after cardiac death seemed to work better than NHBD. And the term “imminently dying” seemed immensely more reassuring than the description of the potential NHBD donor by a Wisconsin organ procurement organization as “a severely neurologically injured patient who is expected to expire within 120 minutes following extubation”.

Valko and other devoted nurse advocates for life put out a resourceful bioethics news list and frankly, I can’t keep up with the fast paced news stories of changing legislation and efforts to re-frame issues life and death. But along comes this one now. It’s evidence of the ‘wordkill’ Valko writes about, and the arbitrary way medical decision are made and justified. This story should get more coverage.

Pledges of aid have prompted the father of 26-year-old Yıldız Alçı’s six-month-old unborn baby to consent to the baby’s birth after the extraordinary story made headlines across Turkey.

Alçı, who has been on life support since she succumbed to meningitis and was pronounced brain dead on Jan. 3, has two young children with Erdinç Ceyhan. Ceyhan had publicly asked doctors to sever life support for his partner — and subsequently that of his unborn child’s — after surmounting medical bills and the prospect of raising three children alone overcame the grieving father.
Ceyhan changed his mind over the fate of the six-month-old fetus after receiving pledges of financial support and even a house from the government and other charitable donors earlier this week.

Now look at this explanation:

Alçı was diagnosed with meningitis in early January and lapsed into a coma with little brain activity on Jan. 3 at the Cerrahpaşa Medical Center. Doctors decided to keep her alive for her unborn baby and connected her to life support. Doctors are planning to deliver the baby by cesarean section in about a month if Alçı maintains her current medical condition.

Two of the nurses who put out the bioethics news list added their comments to this story.

Cheryl wrote this:

Don’t miss this quote…”We will do our utmost to keep Alç alive to save her fetus …”  So, she is or isn’t dead – yet!

Here’s what Nancy Valko added:

As Cheryl points out, this kind of case illustrates the problems with the “brain death” diagnosis. The public is told by the organ transplant groups that brain death is real death of the entire brain, but obviously the whole brain isn’t dead since, for example, hormones produced by the brain are essential in maintaining pregnancy.

And, obviously, the argument that the heart will stop anyway despite the technology - shortly after a person becomes “brain dead” – isn’t exactly truthful either.

See the dilemma?

And it continues. Here’s a snip from one of the latest news items, proving that we have much to learn yet.

A 2005 Gallup Poll commissioned by federal health authorities found that 78 percent of Americans surveyed would be “likely or very likely” to donate their organs for transplants, but just 43.2 percent said they supported or strongly supported the presumed consent standard.

Did you know some officials are working toward “presumed consent” to take organs, when they presume the time has come for the donor to give them up?

Miss Honohan [an organ procurement official] said other partnerships are under way in the United States to encourage organ donation and to register people as donors in easily accessible computer databases.

Meanwhile, many moral biomedical experts want you to be aware of all the issues, the dangers, and the medical ethics before you’re the one on the table. We can all decide to give the gift of life when that time comes, but we and our loved ones should ultimately decide when that is, based on an informed moral judgment, and love.