Thread by me.
"Incompatible with life." The doctor's words kept echoing in my head as I held my sobbing wife, Karen, just four days after the birth of our eighth child, Isabella Maria.
Bella was born with three No. 18 chromosomes, rather than the normal two. The statistics were heartbreaking: About 90 percent of children with the disorder, known as trisomy 18, die before or during birth, and 90 percent of those who survive die within the first year.
Bella was baptized that day, and then we spent every waking hour at her bedside, giving her a lifetime's worth of love and care. However, not only did she not die; she came home in just 10 days.
She was sent home on hospice care, strange as that sounded for a newborn. The hospice doctor visited us the next day and described in graphic detail how Bella would die. In sum, she could die at any time without warning, and the best we could hope for was that she would die of the common cold.
Karen and I discontinued hospice so that we and our amazing doctors, James Baugh and Sunil Kapoor, could get to work focusing on Bella's health, not her death.
Like so many moms of special kids, Karen is a warrior, caring for Bella night and day and, at times, fighting with health-care providers and our insurance company to get our daughter the care she needs.
Being the parent of a special child gives one exceptional insight into the negative perception of the disabled among many medical professionals, particularly when they see your child as having an intellectual disability. Sadly, we discovered that not only did we have to search for doctors who had experience with trisomy 18. We also had to search for those who saw Bella not as a fatal diagnosis, but as a wanted and loved daughter and sister, as well as a beautiful gift from God.
We knew from experience that Children's Hospital of Philadelphia was such a place. Fourteen years ago, we had another baby who was diagnosed as having no hope, but CHOP's Dr. Scott Adzick gave him a shot at life. In the end, we lost our son Gabriel, but we will always be grateful to Dr. Adzick for affirming the value of his life.
When Bella was 3 months old, she needed some minor but vital surgery. Some doctors told us that a child like Bella wouldn't survive surgery or, even worse, that surgery was "not recommended" because of her genetic condition - in other words, that her life wasn't worth saving. So we again turned to the Children's Hospital and found compassion, concern, and hope in Dr. Thane Blinman. He told us he had several trisomy 18 patients who did well - and so did Bella.
Next week, we will mark Bella's second birthday. Over these two years, we have endured two close brushes with death, lots of sleepless nights, more than a month in CHOP's intensive care unit, and the constant anxiety that the next day could be our little girl's last.
And yet we have also been inspired - by her fighting spirit, and by the miracle of seeing our little flower blossom into a loving, joyful child who is at the center of our family life.
Most children with trisomy 18 diagnosed in the womb are aborted. Most who survive birth are given hospice care until they die. In these cases, doctors advise parents that these disabled children will die young or be a burden to them and society. But couldn't the same be said of many healthy children?
All children are a gift that comes with no guarantees. While Bella's life may not be long, and though she requires our constant care, she is worth every tear.
Living with Bella has been a course in character and virtue. She makes us better. And it's not just our family; she enriches every life she touches. In the end, isn't that what every parent hopes for his or her child?
Happy birthday, Isabella!
Both threads by me.
This isn’t the first time that coupling assisted suicide/euthanasia has been suggested as a potential concept, but it may be the first time it has been actively advocated. Oxford bioethicists Julian Savulescu–for whom virtually anything goes–writing with Dominic Wilkinson argue that euthanasia coupled with organ harvesting would be a splendid way to obtain more kidneys, livers, and hearts. From “Should We Allow Organ Donation Euthanasia?” published in Bioethics (citations omitted):
It is permissible to withdraw life support from a patient with extremely poor prognosis, in the knowledge that this will certainly lead to their death, even if it would be possible to keep them alive for some time. It is permissible to remove their organs after they have died. But why should surgeons have to wait until the patient has died as a result of withdrawal of advanced life support or even simple life prolonging medical treatment? An alternative would be to anaesthetize the patient and remove organs, including the heart and lungs. Brain death would follow removal of the heart (call this Organ Donation Euthanasia (ODE)). The process of death would be less likely to be associated with suffering for the patient than death following withdrawal of LST (which is not usually accompanied by full anaesthetic doses of drugs). If there were a careful and appropriate process for selection, no patient would die who would not otherwise have died. Organs would be more likely to be viable, since they would not have sustained a period of reduced circulation prior to retrieval. More organs would be available (for example the heart and lungs, which are currently rarely available in the setting of DCD). Patients and families could be reassured that their organs would be able to help other individuals as long as there were recipients available, and there were no contraindications to transplantation. This is not the case at present with DCD, since many patients do not die sufficiently quickly following withdrawal of LST for organ retrieval.
That has been argued before, as we have discussed here often. But the bioethicists take it even a step farther, coupling it with assisted suicide, as apparently has been done in Belgium:
If we believe that we should not remove organs from patients who are still alive, even where they have consented to this and would otherwise die anyway, then one alternative would be to euthanize the donor and retrieve organs after cardiac death had been declared. This would already be a theoretical option in countries where euthanasia is permitted. Organ donation after cardiac euthanasia has been described in a patient in Belgium. Organ donors could be given large doses of sedative, and cardioplegic agents (to stop the heart). Again, this would reduce the risk of patients suffering after withdrawal of LST and make organ donation possible for some patients who would otherwise not be able to donate. In an extreme case, they might choose to undergo euthanasia at least partly to ensure that their organs could be donated.
As you may recall from my first piece against assisted suicide, published in my innocent days before immersing myself in these issues, I suggested that eventually assisted suicide and organ donation would be tied together “as a plum to society.” I just didn’t know it had actually happened–as opposed to having been “merely” advocated. We now learn it was done in Belgium. I will get that article and report about it here at SHS (and perhaps elsewhere).
I have a theory: If you are a bioethicist–the more brutal your ideas, the more denigrating of human exceptionalism you become, the more crassly utilitarian direction in which your advocacy flows–the more prestigious the university that will give you a tenured chair and a big salary, and the more likely you are to get the big grants. Think, Peter Singer and personhood theory/infanticide/Great Ape Project and Princeton and, as here, Jullian Savulescu and Oxford. Interestingly, both are Australian, so perhaps a pleasing accent is part of the mix. In any event, this article not only supports my theory, but proves another point I often make–if you want to see what is going to go wrong in society tomorrow, just read the professional journal articles published today.
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I found the article about the Belgian euthanasia coupled with organ harvesting referenced in my critique yesterday of a bioethics journal article urging that very approach. The woman in question was not terminally ill, but in a “locked-in” state, that is, fully conscious and completely paralyzed. She wanted to die–a desire accommodated by her doctors. Just prior to being killed, she decided to donate her organs. From, “Organ donation after physician-assisted death,” (Letter to the Editor) published in the journal Transplantation (21 (2008) 915–no link):
The day before the euthanasia, the patient expressed her will of after-death organ donation. The ethical and legal possibility of combination of the two separate processes, physician-assisted suicide and after-death organ donation was then considered and agreed by the institutional ethical committee president. The intravenous euthanasia procedure was performed according to the regular protocol, in the presence of the patient’s husband, in a room adjacent to the operative room. The patient was in her regular hospital bed. No member of the transplant team was present during the euthanasia. When the patient’s death was declared by three independent physicians after 10 min of absence of cardiac activity, her cadaver was placed on the operative table. The liver and both kidneys were harvested and transplanted according to the regular Eurotransplant organ allocation rules for after-death organ donation. Currently, more than 1 year later, all three recipients are enjoying a normal graft function.
If this doesn’t set off alarm bells about how the sick and disabled are increasingly being looked upon not only as burdens (to themselves, families, and society), but potential objects for exploitation, what will? A disabled woman was killed, even though people with locked-in states often adjust over time to their disabilities and are happy to be alive. Indeed, the book The Diving Bell and the Butterfly-written by–Jean-Dominique Bauby–tells just such a story.
Moreover, agreeing to harvest organs from euthanasia/assisted suicides raises the very realistic prospect that despairing people with terminal illnesses or disabilities (or perhaps, just despair) could latch onto being killed for their organs as a way of bringing meaning to their lives. This is very dangerous territory, made all the more treacherous by doctors, spouses, and a respected medical journal validating the ideas that dead is better than disabled and that living patients can, essentially, be viewed as a natural resource to be killed and mined.
The authors don’t see it that way, of course. They have visions of organs dancing before their eyes:
This case of two separate requests, first euthanasia and second, organ donation after death, demonstrates that organ harvesting after euthanasia may be considered and accepted from ethical, legal and practical viewpoints in countries where euthanasia is legally accepted. This possibility may increase the number of transplantable organs and may also provide some comfort to the donor and his (her) family, considering that the termination of the patient’s life may somehow help other human beings in need for organ transplantation.
Taking the organs was the easy decision. Once you’ve pulled medicine into the forbidden zone of active killing, finding self-congratulatory justifications becomes a most desirable quest.
Some might defend the act by noting the patient’s decision to be euthanized was not made concurrent with her decision to be an organ donor. I don’t see the distinction. Besides, once society accepts that the two can be joined, saving others could easily become a frequent motivation for asking to be killed. Heck, given the number of non voluntary euthanasia deaths in the Netherlands–coupled with the push for “presumed consent” to harvest organs–”choice” itself could one day become moot.
