Serious Complications from Living Kidney Donation Should Rule Out Live Donor Organ Selling
Following up on my SHS post from earlier today that disagreed with Sally Satel’s push to legalize a market in live kidney donation to ease the organ shortage, I did a little digging on the risks. Although the surgery is generally considered quite safe, and donors appear to live as long as non donors after the surgery is over, it still carries very grave risks. For example, there is arterial bleeding, which as one study laid out pretty starkly, sometimes leads to death, morbidity, or serious complications. From the study:
In 213 surveys returned (24%), 66 and 39 episodes of arterial and venous hemorrhage were reported, respectively. Among arterial control problems, 2 resulted in donor death and 2 resulted in renal failure; 19 episodes required transfusion. Open conversions in laparoscopic nephrectomy or late reoperations for hemorrhage were reported for 29 cases. Locking and standard clips applied to the renal artery were associated with the greatest risks.
Significant hemorrhagic complications occur with living kidney donation in both open and laparoscopic approaches. Loss of arterial control jeopardizes donor life and health, especially when it occurs in the postoperative period.
It may be one thing for someone to choose to risk these complications in order to give someone a kidney because they are a relative or simply out of the pure goodness of their hearts. But it is quite another to seduce sellers into such a market–who would mostly be the poor or the desperate–and persuade them into risking life and health for money, or a mortgage down payment, or health insurance–some of Satel’s suggested enticements. There is a word for that, and I am afraid it is exploitation.
The agitation to increase the pool of potential organ donors by allowing people who are unquestionably not dead, but who have profound cognitive disabilities, to be killed for their organs continues. An article in the American Medical News, primarily concerned with organ procurement after “heart death,” is the latest example. From the story:
Other critics said the concept of transplanting a heart after cardiac death isn’t logical. “If someone is pronounced dead on the basis of irreversible loss of heart function, after all, it would not be possible for heart function to be restored in another body,” wrote Robert M. Veatch, PhD, a Georgetown University medical ethics professor, in an Aug. 14, 2008, NEJM essay. “One cannot say a heart is irreversibly stopped if, in fact, it will be restarted.”
This is to sow intentional confusion. The heart can beat outside the body because it has its own nerve clusters, and no one would say that the body from which it came was not dead. The issue is whether the heart could spontaneously restart beating, not whether the heart itself is so degraded it can no longer function.
Here’s the advocacy part:
Veatch said the dead-donor rule should be changed to allow patients or their families to opt for a standard that takes a loss of functioning consciousness (short of brain death) as another kind of death. Physicians could then procure hearts “in the absence of irreversible heart stoppage.”
Robert D. Truog, MD, said the Denver cases illustrate the underlying problem in how death is defined to facilitate organ donation and transplantation. He said it is time to reconsider the dead-donor rule. “The existing paradigm, built around the dead-donor rule, has increasingly pushed us into more and more implausible definitions of death, until eventually we end up with such a tortured definition that nobody’s going to believe it,” said Dr. Truog, professor of medical ethics and anesthesia at Harvard Medical School in Massachusetts.
This is known in the trade as “redefining death,” and if it ever comes to pass–people like Terri Schiavo could be called dead instead of unconscious and harvested to death. Moreover, we are not being “pushed” into this. Some want to choose it. It is our job to make sure it doesn’t happen.
It is interesting how some things never change. In the 1990s, Jack Kevorkian’s death circus lit a wildfire of debate over assisted suicide, with the default position being that since “terminally ill” people are going to commit suicide because the suffering is sometimes so unbearable, let’s legalize it–under controlled circumstances. It didn’t seem to matter a whit that Kevorkian’s clients–they weren’t patients since they only sought death from him, not care–mostly weren’t terminally ill and that some weren’t even sick at all. That truth for some reason could not or would not be seen–and often still isn’t.
A virtually identical paradigm has developed today in the UK. Suicide tourism is taking the lives of people who are dying and disabled, who fly to Switzerland for suicide facilitated by a lay assisted suicide group, using veterinarian euthanasia drugs prescribed by death doctors, who never intend to care for those who come to die. And as in the Kevorkian imbroglio, the media has established terms of the debate that assume these suicides were somehow necessary. The premises and narrative of the controversy have thereby stacked the deck, so to speak, in favor of legalization. Rarely is suicide prevention even mentioned.
It’s hard to get the anti assisted suicide message to penetrate in such a milieu. Occasionally opponents are able to write op/ed pieces, but the impact of these arguments is often muted because they lack the power of repetition accorded arguments in favor of legalizing hastened death. One such opposition piece appeared today The Herald, byline Ron Ferguson, and it is worth reading. From the column:
Despite the passionate and heart-felt arguments for legalising assisted suicide, I want to argue against it. Despite its merciful intentions, such a move would create an ultimately uncontrollable environment in which vulnerable people would be at risk. Relatives burdened by care and costs–or lusting after inheritances–would be tempted to insist that death was what granny wished. The conscientious elderly might feel obliged to make for the exit door to please their busy children, or to avoid being a burden on the state
And here’s the rub: physician-assisted suicide implicates other people. The doctor has to prepare the deadly prescriptions. I do not want to wonder whether my friendly GP actually intends to kill me. In times of extremity, I don’t want my physician to morph into Harold Shipman.
Is that scare-mongering? Probably, but there are some scares worth mongering. You don’t have to agree with the doctrine of the sacredness of life to see that without a moral rootedness in the non-negotiability of the human, it is all too easy to slip into a utilitarian culture of death. I fear that the current enthronement of the choices of the individual adult –which is as questionable a “world view” as any religious position–takes us down a dangerous road…
I like the poet Arthur Hugh Clough’s “Thou shalt not kill but needs not strive, officiously, to keep alive”. There is a moral distinction between clinically-justified processes that may hasten death and the deliberate taking of life. There are some lines a civilised society should not cross.
Media is so pornographic these days, and not just about matters sexual. A Brit tabloid has published photos from an assisted suicide, depictions taken from a soon-to-be-aired television show. From the story:
It will be the first time an assisted suicide has been shown on British TV and will be sure to spark debate over the legality of the sensitive subject–as well as the controversial decision to screen it.
The retired university professor and dad-of-two decided to end his life as his illness was crippling his body. Mr Ewert said: ‘I am tired of the disease but I am not tired of living. I still enjoy life enough that I would like to continue but the thing is that I really cannot.
‘If I opt for life then that is choosing to be tortured rather than end this journey and start the next one. I cannot take the risk. Let’s face it, when you’re completely paralysed and cannot talk how do you let somebody know you are suffering? This could be a complete and utter hell.
Clearly, this was a suicide caused by depression and despair–and fear of the future. I wonder if he or his family consulted with hospice professionals who could have assured him that he wouldn’t have to suffer terribly unable to cry out. And who knows, had he hung in, he might have again found the joy in life.
I know of what I speak. My last hospice patient (as a volunteer) was a wonderful man named Bob Salamanca, who died of ALS. He told me that for the first 2 1/2 years of his illness, if he could have gone to Kevorkian he would have. He was depressed and very suicidal. But by the time I met him, he had “come out of the fog” in his words and was relishing life. Yes, it was hard. Yes, there were times when he despaired. But because his family supported his life, not his suicide, and also because the Mormon church reached out to him and let him know he was wanted–first through missionaries and then as a church, for example sending a taping crew to his house so he could present a Sunday message even though he was too ill to leave the house–and because he found the joy in life through the struggle of becoming a total quadriplegic, he rejected suicide. More than that, he would get spitting mad at assisted suicide advocates who used ALS patients as their bloody flag of advocacy. “They are trying to push me out of the bright lit boulevard into the dark alley,” he told me the day after watching a Nightline program that focused on an ALS patient who wanted assisted suicide. Indeed, he even wrote a column published by the San Francisco Chronicle, (”I Don’t Want a Choice to Die,” February 19, 1997, no link available).which read in part:
Euthanasia advocates believe they are doing people like me a favor. They are not. The negative emotions toward the terminally ill and disabled generated by their advocacy is actually at the expense of the ‘dying’ and their families and friends, who often feel disheartened and without self assurance because of a false picture of what it is like to die created by these enthusiasts who prey on the misinformed.
What we, the terminally ill, need is exactly the opposite–to realize how important our lives are. And our loved ones, friends, and indeed society, need to help us feel that we are loved and appreciated unconditionally.
Of course, if the death with dignity crowd had been able to get their hands on Bob before he came out of that fog, he would have been dead instead of relishing the end time of his life (”I wouldn’t have missed this for the world,” he once told me. Such statements by properly cared for dying people have become so common they are almost a hospice cliche`) And as he was lowered into the grave, the death with dignity facilitators would have been clapping themselves on the back about their oh, so deep compassion, ignorant of the coming good life that they had robbed Bob of when they yielded to his despair.
But that’s not the message media wants to send, and apparently it is not one many people want to hear. It is all about “death with dignity” now–as if Bob dying peacefully in his sleep wasn’t dignified.
And the tales of medical woe continue to mount in the UK as the NHS collapses. Now, there is a serious shortage of emergency room doctors. From the story:
The College of Emergency Medicine has issued a report calling for the number of A&E consultants must double within three years in order to ensure there is proper supervision of junior doctors so patients get the best care.
In their report The Way Ahead, the College said there needs to be 1500 emergency medicine consultants by 2012 as this would mean there was a senior doctor on duty in each A&E at all times. Currently only a minority of hospital emergency departments have adequate numbers of senior doctors and complex cases and very sick patients are seen by doctors who are still training.
The New York Times Softens the Ground for Utilitarian Health Care Rationing.
The New York Times has noticed the crass utilitarianism that permeates the UK’s NHS–run by the Orwellian-named bioethics board National Institute for Health and Clinical Excellence (NICE)–and seems to be softening the ground for our accepting similar utilitarian overlords here. From the story:
When Bruce Hardy’s kidney cancer spread to his lung, his doctor recommended an expensive new pill from Pfizer. But Mr. Hardy is British, and the British health authorities refused to buy the medicine. His wife has been distraught.
If the Hardys lived in the United States or just about any European country other than Britain, Mr. Hardy would most likely get the drug, although he might have to pay part of the cost. A clinical trial showed that the pill, called Sutent, delays cancer progression for six months at an estimated treatment cost of $54,000. But at that price, Mr. Hardy’s life is not worth prolonging, according to a British government agency, the National Institute for Health and Clinical Excellence. The institute, known as NICE, has decided that Britain, except in rare cases, can afford only Â£15,000, or about $22,750, to save six months of a citizen’s life.
If an HMO did such a thing, the Times would never stop screaming. But with the prospects of a nationalized health care system growing, attitudes at the Gray Lady are apparently changing, with the term “evidence based” health care as the euphemistic honey to help the bitter medicine go down.
Lest you think such policies will never happen here, it is already being advocated by many of our betters among the intelligentsia:
At the present rate of growth, medical costs will increase to 25 percent of the nation’s gross domestic product in 2025 from 16 percent, with half of the increase coming from new drugs and devices, according to the Congressional Budget Office.
To arrest this trend, the United States needs to adopt at least some of NICE’s methods, said Dr. Mark McClellan and Dr. Sean Tunis, who served earlier in the Bush administration as, respectively, administrator and chief medical officer of the Center for Medicare and Medicaid Services. Dr. Tunis said he spent a lot of time in government “learning about NICE and trying to adopt the processes and mechanisms they used, and we just couldn’t.”
That’s because the idea of using price to determine which drugs or devices Medicare or Medicaid provides has provoked fierce protests. But Dr. McClellan said the American government would soon have no choice.
Make no mistake: This is the opening round of the coming debate about national health care that will, if it succeeds, put utilitarian bioethicists in position of tremendous power over all of our lives. It is up to us to make sure it does not happen.
Dick Sobsey On “Murder and Social Endorsement” of Parents Killing Their Children With Disabilities
Dick Sosey is an American professor who teaches at the University of Alberta, Canada, and is an expert on issue of discrimination against people with disabilities. In response to a story published in the Denver Postabout the murder of a boy with autism by his father, which Sobsey perceived to be unduly sympathetic to the killer, he has posted two blog posts that are well worth reading in full. In Part One, he writes:
Murder is wrong and there is no good excuse for it. Murdering any child is a despicable act.Murdering one’s own child is as bad as murdering someone elseâ€™s.Murdering a child with autism is just as bad as murdering any other child.
Most people who murder other people are experiencing stress and significant challenges in their lives of one kind or another. Being stressed is not an excuse for murder.
I am particularly incensed at people who commit murder and then tell us how much they love the victim that they murder. Suggesting that parenting a child with a disability is so challenging or stressful that killing these children is somehow understandable or excusable is no better than endorsing any other kind of murder.
Suggesting that parenting a child with a disability is so challenging or stressful that killing these children is somehow understandable or excusable adds to the probability that other parents will kill their children, because sick minds struggling with the impulse to kill can be assisted to go over the edge by social endorsements, which help them to rationalize murder…Let’s save our respect and empathy for the parents who go on facing challenges day after day, and recognize the child murderers who fail to face these challenges for who they are. Parents who kill children with autism are no better or worse than parents who kill any other child.
Lastly, I want to comment on why I believe the ideas in this article are dangerous. To understand child murder, it is less helpful to focus on what motivates some parents to kill their children but rather on what stops most parents from killing their children. This is not being glib. The reality is that raising any child is a lot of work, stressful at sometimes, and heartbreaking at others. At times even the sweetest child is an intrusion on our lives. However, most parents do not kill their children for some combination of four reasons: (1) Love and attachment, (2) Guilt, (3) Shame, and (4) Fear of Punishment. In most cases, this is the order of importance. Parents who claim to love their children but hate their autism are at best conflicted. Autism is a pervasive disorder, saying you love the child but hate his or her autism is a bit like saying I love you but hate everything about you or saying I love the child I wish you could be, not the child you are.
Sobsey probably knows more about this particular issue–the murder of children with disabilities and society’s reaction to it–than anybody I know. His wisdom is very worth pondering.
What We Are Becoming: Time to Dehydrate Debilitated Stroke Patient
A disturbing column in today’s LA Times has a woman wanting to “let” her Dad go by removing his feeding tube–which would really be to make him go, since there could only be one outcome from such a decision.
Dad isn’t unconscious. He is debilitated and disabled by a stroke. He apparently had an advance directive eschewing “extraordinary” care, which the family–rightly in my view–did not see as applying to a feeding tube. And yet, we are told that even so, he should be “let go,” e.g., be dehydrated to death, because his life isn’t worth living. From the column, byline Diana Wagman:
But what kind of life? Since that morning, he has been in a deep sleep, rousing rarely and unpredictably and only enough to say a word or two. He’s paralyzed on his right side. His eyes are closed, and the nurses, the doctors and his family cannot wake him. The rehab doctor literally knocks on his chest and shouts “Wake up, Arthur!” and he does not respond. He is not in a coma, he is not in pain, he is breathing on his own, his heart is strong, but he has basically checked out. The doctor said it’s not uncommon to be lethargic after a stroke, although my father’s response is unusually severe. The scans of his brain show that the bleeding and swelling have stopped, but he is not getting better. A feeding tube is keeping him alive.
Money is part of the issue, and no doubt, it is a big problem:
Now the hospital wants to move him. It is not a long-term care facility, and he does not need acute care. He needs what they call sub-acute care, daily maintenance and monitoring, some rehab therapy to keep blood circulating. We have begun the depressing, complicated process of looking for a home. The nicest place we found is $10,000 a month once his insurance and Medicaid run out. We have no idea how long he’ll be there. My stepmother would have to sell the income property whose rent supports them. Then she would have to figure out another way to live.
But do we really want to be a society that dehydrates people to death because they are debilitated elderly or have serious disabilities? Probably not–if these attitudes spread throughout the society we will be a society that wants to lethally inject them to death because we are, after all, humane.
I have great empathy for Wagman and her family. I certainly support their refusal of antibiotics or CPR in such a case. But depriving Dad of food and water–as she really does understand in this piece–is a huge thing, both medically and symbolically.
Being in anguish at one’s father’s real difficulties is natural. Wishing he would die for his own good is understandable. But I don’t think Wagman or her family should feel guilty for doing the right thing. Nor do I think it is a good idea to move society–as this piece seems intended to do–toward the time when people like her father are can be comfortably deemed too much of a burden on themselves, their families, or society to have their lives maintained.
Language Matters: Court Did Not Authorize Euthanasia in South Korea
One of the great difficulties we have in debating important cultural and ethical issues is the lack of a common frame of reference. Or to put it another way, when language is used very sloppily–whether negligently or intentionally–it becomes almost impossible to adhere to precise definitions and understand crucial distinctions that are prerequisites to informed and rational debate.
Sometimes this is an advocacy tactic. Thus, proponents for unfettered embryonic stem cell and cloning research intentionally changed the language of the debate in order to win public support–aided and abetted by a completely in the tank media. Thus language describing embryonic stem cell research and therapeutic cloning issues was intentionally devolved into mere “stem cell research.” As a consequence, adult stem cell breakthroughs, also called “stem cell research,” are often thought to be embryonic. Stories about the need for human eggs for “stem cell research” often do not let readers know that the issue involves the creation of human embryos via somatic cell nuclear transfer. This directed corruption of language is also a corruption of science and is profoundly disrespectful of democracy.
Sometimes, however, it is just a matter of sloppiness. Such is the story out of South Korea, headlines about which in several outlets have announced that a court has authorized “euthanasia.” No it hasn’t. It authorized removal of a patient from life support–a very different thing. From the story:
A court on Friday approved a request for euthanasia for the first time in South Korea, telling doctors to take a brain-dead woman off life support at her family’s request…The landmark ruling acknowledged an individual’s right to die for the first time here, but rekindled debate on euthanasia. The current law bans any form of assisted suicide and sees the removal of a respirator from brain-dead patients as murder.
Two inapt terms leap off the page in this short quote. First, it seems the patient is unconscious, not “brain dead.” Second the issue is about whether life support can be removed from such people, not whether they can be actively killed. Sometimes life support is removed from people in PVS and the don’t die (unless that life support is food and fluids).
These issues are international and need a consistent use of language and terms. Otherwise, we will have chaos rather than informed and rational ethical debates. Indeed, the language of bioethics at the popular level is already so muddled by sloppy language, rank redefinition, and euphemistic argument (”aid in dying”) that engaging these crucial issues in the public square is already near the point of futility.
Italy regulated IVF, only permitting 3 to be created at once and requiring that all embryos that come into being in the procedure be implanted.
Had the USA implemented such a policy, we wouldn’t have 400,000 embryos in deep freeze. Some look at these nascent humans as a natural resource for use in research. Others, on the other hand, feel called to “adopt” these excess embryos and gestate them to birth.
This procedure is known as “embryo adoption,” and it is beginning to gain a lot of attention, evidenced by a front page story in today’s Seattle Times. From the story:
The day the frozen embryo arrived via FedEx was the day Maria Lancaster began experiencing firsthand what she had always believed: that human life begins at conception.
Lancaster was 46 and, after having three miscarriages, she and her husband, Jeff, longed for a child. One day, they heard about “embryo adoptions”–where couples who’ve gone through in vitro fertilization donate any leftover embryos to infertile couples. Several months of soul-searching later, they received a frozen embryo from a North Carolina clinic–cells that were thawed and implanted in Lancaster’s womb. Now Lancaster looks at her 5-year-old daughter Elisha–lively and precocious–and thinks: miracle. “It was a demonstration to us that every embryo is a complete, unique and total human being in its tiniest form,” Lancaster said.
Lancaster has now started her own embryo adoption service.
I wrote about embryo adoption and a similar service called “Snowflakes” in Consumer’s Guide to a Brave New World, in which I interviewed both adopting mothers and the donors. The donor was thrilled her son was brought to birth, and the boy’s parents were absolutely ecstatic about their growing family. During our interview, I heard the baby crying and marveled that he had been in the deep freeze only a little while before.
There are debates in some circles about the morality of this. I think this flows from opposition to the IVF procedure per se. Others may object to one woman carrying the baby of another. And still others may resent the pro life message as presented in the story. As for me, regardless of what one believes about any of that, bringing the child to birth is in keeping with the reason the embryo was brought into being in the first place. It isn’t the answer to the embryo surplus because there are so many in cold storage. But surely, it is one answer.
Biotechnology offers tremendous promise and peril. The peril arises, in my view, from a general lack of humility within the sector and a professed unwillingness among some of its leaders to accept that there are any ethical lines that must be respected other than their own. More importantly, many have discarded the belief in the intrinsic equal moral worth of all human beings. As a consequence many in the field have come to look upon nascent humans as mere natural resources that can be used instrumentally. Most of this discussion now centers on early embryos. But the emerging predominate value system within the biotech sector–which denies intrinsic human worth and advocates for establishing moral value based on capacities–would just as easily justify using living fetuses in experimentation (which was done in the USA in the late 1960s), and even people born with profound cognitive impairments, a proposal already being voiced in some of the world’s most prestigious bioethical journals.
The problem isn’t that scientists and ethicists want to improve human health and wellbeing. We all want that (just not at any price). The problem, as I see it, is an emerging utopian attitude that threatens to make something of a religion out of science and accepts a utilitarianism that could devolve into a new eugenics. So, while we are certainly capable of controlling biotechnology, alas, I do not see a sufficient willingness among the leadership of the science and biotech sectors to do so. This not only bodes poorly for the weak and vulnerable but risks unleashing a popular backlash against science for refusing to adhere to reasonable societal norms.
The responses were supposed to be brief, and whole books could be and have been written on the subject, but that sums my thoughts up pretty well.
What We Are Becoming: Paralyzed Teacher Feels Need to Justify Existence
All of the advocacy and tub thumping promoting the euphemist phrase “death with dignity,” accompanied the widespread media and the public support for the suicides of people with disabilities or serious illnesses, sends the insidious message to similarly situated people that they are “burdens” or do not have lives worth living. Such cheering for death reflects an explicitly discriminatory attitude that would not be countenanced if applied against other disadvantaged groups.
People living with these circumstances are hearing the message that they are not really wanted. Case in point: A paralyzed teacher in the United Kingdom named Sue Garner actually felt the need to defend herself as not “selfish” for wanting to continue to live. From the story:
A paralyzed Merseyside teacher has spoken of her anger that the growing public sympathy for assisted suicide means she is now seen as ’selfish’ for wanting to carry on living. Sue Garner-Jones last night criticised the way seriously disabled people who choose to end their lives are commonly described as ‘courageous’ and ’selfless’.
Mr James’s parents said that after being left in a similar tetraplegic state, he was living only a ’second class existence’.
Attacking the ‘hysteria’ surrounding his case, she warned: “I am seriously concerned that this might have a severely detrimental effect on anyone who lives with disability, or cares for someone in this situation, especially as Mr and Mrs James are referring to his life as a tetraplegic as ’second class’.”
Note Garner’s defensiveness and the almost desperate need she feels to justify her continued existence:
She is given 24/7 care by her mother Pat, 72. “I feel Iâ€™ve contributed quite a lot to society,” she said. “People who come to my classes–they get a lot out of it. In fact, it’s society that’s second class in many ways. Society doesn’t accommodate disabled people”. We all have our good and bad times, but it should be said that many of us lead many worthwhile lives, she said.
The press coverage of Mr James’s suicide failed to reflect the view that disabled people could live full lives, she added. “They didn’t publish one comment and I know that there were some because I wrote some–saying that there’s an alternative. It’s just frightening it could open the door to people thinking if you become disabled thereâ€™s no future.
None of us should have to justify being alive. But this is what we are becoming. We ignore the warning signs at our own peril.
“Assisted Suicide: The Wind in Their Sails:” Digging Deeper Into Popular Support of Mercy Killing
After Washington voters passed I-1000 legalizing Oregon-style assisted suicide, First Things asked me to weigh in with some analysis. I look at the matter from two angles. The first is political. I noted that the assisted suicide movement had been essentially moribund since the passage of Oregon’s Measure 16 in 1994, and that advocates had adopted an “Oregon plus one” strategy to restore their momentum, which finally succeeded last Tuesday. From my column:
And with that success, the sails of the ghost ship Euthanasia rippled with the briskly rising breeze, and once again began to plow through the waves toward other shores, far and near. Soon, legislation will be introduced to legalize assisted suicide in state throughout the country–California, Vermont, Arizona, Wisconsin, Hawaii, perhaps Ohio, and others–to make it Oregon-plus-two, -three, -four, and -five.
The victory will also be used to further the euthanasia cause internationally. Every time a legal sovereignty says yes to mercy killing, it grants permission for others to do the same. Thus, expect I-1000â€™s passage to boost the cause in countries such as Australia, France, the United Kingdom, and New Zealand–to name just a few–all of which have been edging ever closer in recent years to joining the Netherlands and Belgium in permitting euthanasia, and Switzerland, which allows assisted suicide by lay facilitators.
The more important issue is why:
Think of it as a symptom rather than a cause. The euthanasia movement reflects a profound nihilism that has been spreading like a cancer throughout the West for the past hundred years.
The extent of our societal illness was described succinctly several years ago by the Canadian journalist Andrew Coyne. Writing in the wake of widespread public support for Robert Latimer, a Saskatchewan farmer who murdered his twelve-year-old daughter Tracy because she was disabled by cerebral palsy, Coyne wrote: “A society that believes in nothing can offer no argument even against death. A culture that has lost its faith in life cannot comprehend why it should be endured.”
I discuss three cases out of the UK, already dealt with here at SHS, as illustrations. The first is the horrible situation in which a suicidal woman drank anti freeze and was allowed to die by doctors because she had a note refusing treatment (even though she had called an ambulance). The second is the case of the parents who took their son, grief stricken after becoming paralyzed in a rugby scrimmage, to Switzerland for an assisted suicide. The third is the Debbie Purdy lawsuit, in which a woman with MS wants her husband to be able to take her to Switzerland with no legal consequences.
Doctors’ letting Wooltorton die, James’ parents taking him to Switzerland to die, Purdy’s lawsuit agreed upon by her husband, and suicide-supportive columns like Purves’ are unquestionably intended to be kind; but they are not. With such deaths emotively and sympathetically reported in the media, and with every lawsuit that chinks away at the laws intended to protect people with serious difficulties from suicide, mercy killing becomes more easily envisioned, more comfortably embraced.
By passing I-1000, Washington voters added dry kindling to this smoldering fire. If more of us donâ€™t man the hoses soon, we risk being consumed by the flames.
I believe that support for I-1000 specifically and euthanasia generally, is a vote of no confidence in modern medicine, but also in the intrinsic value of life itself. It constitutes a breakdown of societal cohesion in which abandonment masking as “choice,” trumps love and interpersonal commitment. Unless this trend is reversed–which I still believe is doable–we are heading into very dark days.
I try to be a realist and an idealist. I promote human exceptionalism, knowing that as an imperfect species, we are unlikely to ever fully achieve the dream of universal human equality. But the only way to get very close, it seems to me, is for our reach to exceed our grasp. That’s my idealism.
My realist side tells me that this ideal has been almost universally rejected at the level of the intelligentsia, and that our betters among the big brained intend to move us to a “quality of life” culture that will literally become a culture of death for the weak and vulnerable.
This is epitomized by the advocacy of Peter Singer. Alas, being a realist, I have to admit that Singer’s anti-human values are triumphing and becoming increasingly mainstream among society’s movers and shakers. Witness the appalling success of the Great Ape Project, about to become a legal reality in Spain only 15 years after it was launched. Witness the increasing respectability of infanticide, with the notion of killing babies for eugenic purposes not only occurring regularly in the Netherlands, but touted as a matter of respectable consideration in the New England Journal of Medicine, the Hastings Center Report, and the New York Times, among other places.
When Culture of Death first came out, my bioethicist critics claimed that it was all Peter Singer all the time and that he was a fringe thinker. That was bunkum, as I demonstrated in a letter reacting to one particularly caustic review. I wrote in part:
I am also criticized for quoting extensively from Joseph Fletcher and Peter Singer. I do make much of Fletcher, and with good reason. Based on the flow of events, it seems to me that he was, perhaps, the most influential American philosopher of the last half of the 20th century. (Would that Paul Ramsey had had such influence! Bioethics would have taken a far different path.) I am faulted for calling Fletcher the “patriarch of bioethics.” But I am not the first person to make that assertion. I was quoting Al Jonsen from his book on the history of bioethics. As to Peter Singer (who I like to call Son of Fletcher), he is probably the most publicly known and influential modern-day bioethicist, as painful as that may be to others in the movement. That is why he was brought from Australia to Princeton University, despite advocating the right of parents to kill unwanted infants during their period of nonpersonhood, among other travesties.
But to claim that I dwell almost exclusively on Fletcher and Singer is to do a real injustice to my work. I make it very clear that as important as these two are, they are not the sum and substance of bioethics. Indeed, I explore the thinking and advocacy of many prominent bioethics practitioners, including Callahan, Veatch, Harris, Glover, Beauchamp, Childress, Hardwig, Dworkin, Frey, Arnold, Youngner, Agich, and Caplan, among others. Most of these promote at least some “death culture” policies to one degree or another.
For example, while Callahan opposes assisted suicide, he is the nation’s foremost proponent of healthcare rationing and strongly supports futile care theory, both of which lead, at least implicitly in my view, to a duty to die. Meanwhile, Hardwig posited an explicit positive duty to die in a cover story for the Hastings Center Report. Battin also has supported the odious notion, among others. Frey believes that if we are going to vivisect animals we had better also be willing to vivisect those humans who have a lower moral status than animal subjects based on an inferior quality of life. Youngner believes in doing away with the dead donor rule in organ procurement. Veatch accepts redefining death to include a diagnosis of permanent unconsciousness. (I guess if such a person awakens, we would have to call it a resurrection.) Frankly, many among the general public are shocked and deeply disturbed when they learn that these are deemed respectable subjects in bioethics discourse.
If that was true then, it is even more true today. Indeed, proving the point, Singer will give the keynote address at the American Society for Bioethics and Humanities (ASBH), the primary professional organization in the field. This validation of Singer by the most important bioethics society in the country illustrates the radical direction in which the field is increasingly going. Fringe character my removed tonsils!
The answer, of course, is to never give up, but keep striving to let the greater population understand the wickedness that this way comes. As I alluded to in my letter, our hope lies in the common sense and decency of Main Street. The universities and similar environs are the problem, and are not likely to be the solution any time soon.
Why do media so often describe non-dying people who want assisted suicide as terminally ill? Is it on purpose? Mostly, I don’t think so. I think they have accepted a false premise; that assisted suicide is about terminal illness. So when someone who is not dying wants assisted suicide, it’s like a reflex, and very soon the suicidal person is described as terminally ill even though they aren’t actually dying.
The latest is in the Debby Purdy case, which I have written about here previously. Purdy has MS, which is generally not a terminal illness. She has said she wants assisted suicide when her disability increases to the point that she can’t take it anymore, not if she is ever diagnosed as dying. And yet, guess how she is described? From the story, byline Nick Allen, in the Telegraph:
A terminally ill woman who wants her husband to help her die lost her landmark legal bid to clarify the law on assisted suicide but welcomed a High Court ruling that suggested Parliament should review the issue.
Why can’t media be accurate? It makes me want to pull my hair out.
The same phenomenon squared was and is seen with Jack Kevorkian. How often is he described in the press as the retired doctor who helped terminally ill people kill themselves? Yet, in reality, most of his assisted suicides were not dying when they went to Michigan to die in his rusty van or other such places, while five weren’t even sick according to their autopsies. Yet getting media to change their wording about Kevorkian–which I have often worked at–is almost always very tough going.
Like I said, sometimes it’s bias, but most of the time I think it is an unthinking reflex. But when you think about it, which is worse?
Debby Purdy, the UK woman struggling with progressive MS, went to court seeking an order assuring her that should she want to die, that her husband could assist her and face no legal consequences. (This case was similar to that of Diane Pretty a few years ago.) The trial court refused. From the story:
Debbie Purdy, 45, had launched a High Court challenge to determine whether her husband would face prosecution if he helped her end her life before her conditioned worsened.
Purdy told reporters she was “disappointed and surprised” that the judges refused to interpret the 1961 Suicide Act, which says assisting someone in a suicide is a crime punishable by up to 14 years in prison.
Purdy, speaking from a wheelchair beside her husband Omar Puente, said she would appeal. She has said she wants the option of assisted suicide if her pain one day becomes unbearable.
Her case asked the judges to tell her at what point her husband would be breaking the law if she committed suicide with his help. “I’m not prepared for Omar to break the law,” she said. “How can we make sure that we act within the law without potential prison sentences if they won’t tell us under what circumstances they would prosecute?”
These cases tug at our hearts, but not in the right way. By applauding her right to “choice,” we abandon her to the worst fears she may have about her future, and indeed, agree that her life will not be worth living, that she will be a burden, etc. Our effort toward Purdy should be just the opposite, to support her in living, to continually reaffirm her value, in suicide prevention so that she hopefully loses the desire to kill herself. Indeed, I find it interesting that these stories never say what, if any, such help she is receiving, or indeed, whether she has refused such assistance. Why the lack of curiosity by journalists?
Besides, the issue is far larger than her individual desires. Purdy’s activism–and the public support she receives–sends an insidious message to other people struggling with difficult diseases and conditions, that their lives are not worth living and not worth protecting. And wider society gets the message too. Moreover, if killing is acceptable for a woman because she has MS, why not include any other serious condition that causes despair, including existential agony? As we have seen in Switzerland, the Netherlands, Kevorkian, etc., that’s precisely what happens. In the words of the late, great Dutch anti-euthanasia activist Dr. K.F. Gunning, once we accept mercy killing as acceptable in one circumstance, we will soon come to accept it in one hundred.
May Purdy receive the loving and compassionate care of her community, may she come to see her life as worth living regardless of her physical circumstances, but for her sake, that of other people with disabilities and serious illnesses, and that of society–may she unequivocally lose her case on appeal
For years we have been warned that there would be a “brain drain” if we did not pour billions into ESCR and human cloning research. I have called this the “blank check” demand.
Meanwhile, in Brave New Britain–the country that never says no–scientists wanting increasing funds warned that unless they received all of their demands, stem cell scientists would flee to the USA when President Bush leaves office and the policy changes. And now, a brain drain may have begun in the UK–only it is over the country’s insufficient support for adult stem cell research. From the story:
A leading British scientist is leaving the country to work in France after claiming that British science gives too much priority to embryo experiments over “more ethical” alternatives.
Colin McGuckin, professor of regenerative medicine at Newcastle University, believes that more funding should be given to work with adult stem cells. He is quitting after just three years with one of his most senior colleagues to go to an institute in Lyons.
McGuckin was part of the first team to grow liver tissue using adult stem cells taken from blood in the umbilical cord. Some scientists believe that it is more ethical to use adult stem cells, as research work on cells from human embryos destroys the embryo…
McGuckin says Newcastle University and the government’s funding bodies give too much preference to embryo experiments. He told Times Higher Education that France had kept a “much more reasoned balance”. He added: “[France] is very supportive of adult stem cells because they know that these are the things that are in the clinic right now.
“A vast amount of money in the UK from the government has gone into embryonic stem cell research with not one patient having been treated, to the detriment of [research into] adult stem cells, which has been severely underfunded.”
I believe that ethical research is also the best science since it permits the kind of societal consensus necessary for long term support of the scientific enterprise.
Gynecologist Assists Suicide for Person with Neurological Disease
This is so typical. A Swiss gynecologist death doctor named Alois Geiger admits helping with the suicide people outside his medical specialty. He is a gynecologist. From the column:
Should one not be allowed to make use of medical means to release oneself from suffering? The wish to commit suicide is most understandable when it develops over time, rather than overnight. Only a doctor with a medical practice can prescribe strong sleeping medication. For me there is no question about writing such a prescription in a tragic situation, knowing that it cannot help his illness but will help him realise his wish for a self-determined suicide…
The other day a patient came to me suffering from a spreading neurological disease that was increasingly paralysing his muscles. He lived alone, had no family responsibilities. As a doctor I have seen many people in worse conditions and who none the less were ready to carry on living with their suffering and disabilities. Is it my right, or even my duty as a doctor to turn down a prescription for NaP for this man and make it very difficult for him to end his life–just because somebody in a similar situation is prepared to live longer? Does the opinion of other people overrule one’s own sense of worth?
Just now, there was another conversation with him. He is not wheelchair-bound yet. With a stick he can still climb a few stairs. He is missing everything that he has lost through illness–his career, his walking, climbing, driving a car. He will not be able to take care of himself much longer, already depends on outside help. And there is the nub–he does not want to be ever more dependent on other people…He needs me for that slip of paper. Is it correct to deny him the indisputably most humane means to determine the end of his life? If I do not help him, do I not play God, taking away from him the option of a gentle and, in his eyes, a rational death?
So, Geiger helps kill patients whose conditions are outside his area of specialty based on ideology and his determination that the suicide is rational. Death on demand
This is pure Kevorkianism, a doctor consulted, not for treatment or palliation, but death. Recall that Kevorkaian was a pathologist who never treated a living patient after his medical residency. Yet, he was a doctor and he believed that gave him the authority to decide who to allow access to assisted suicide–even though he hadn’t the slightest idea about new techniques that might help the patient not want to die.
In Oregon, we see a similar phenomenon, doctors prescribing to patients who they have not cared for with condition outside their specialty, consulted for the sole purpose of getting the coveted signature on the prescription pad. There is an oncologist, a favorite of Compassion and Choices (formerly Hemlock Society) who assists the suicides of non cancer patients, for example, I recall one specifically had Lou Gehrig’s disease.
The media should make a stink! But they won’t. They are in the tank. And as the Fourth Estate snoozes away or roots for the new compassion to take hold in Washington State with I-1000, people who might have been helped to live are abandoned onto death. And the same doctor shopping will happen there too if the initiative passes, but all we will hear are that things are peachy keen.
That’s what happens when the intrinsic value of human life loses its potency as a fundamental principle of society.
A disturbing study has been published indicating that many doctors prescribe placebos instead of efficacious medications to their patients. From the story:
Many rheumatologists and general internal medicine physicians in the US say they regularly prescribe “placebo treatments” including active drugs such as sedatives and antibiotics, but rarely admit they are doing so to their patients, according to a study on bmj.com…
The authors report that among the 679 physicians (57%) who responded to the survey half of them said they prescribed “placebo treatments” on a regular basis. Most physicians (62%) believed the practice to be ethically acceptable and were happy to recommend or prescribe placebo treatments.
The most commonly used placebo treatments prescribed in the past year were over the counter painkillers (41%) or vitamins (38%). Some of the physicians reported using antibiotics (13%) and sedatives (13%) as placebos, only 3% reported using sugar pills.
Interestingly, among those who prescribe placebo treatments, most doctors (68%) said they typically describe the placebo treatments to patients as “a potentially beneficial medicine or treatment not typically used for their condition”, only rarely did they admit to explicitly describing them to patients as “placebos”.
Man, there are a whole heap of problems here, the following of which leap immediately to mind. First, this is lying to patients and it interferes with informed consent and refusal. Second, patients are receiving drugs that may cause side effects for no purpose other than to think they are receiving treatment. Third, patients are paying for drugs they don’t need. Fourth, such “treatments” can cause harm, such as increasing the likelihood of antibiotic resistant bacteria. Fifth, it is a way of shining patients on without finding out their real underlying issues. (Why do I think this might happen to women more than men?) Sixth, it could lead to patients thinking they were nuts when they still had symptoms, perhaps preventing them from seeking further help.
Yes, I know there is such a thing as a placebo effect, which is why they are used in human medical trials, where they are appropriate. But even if this does work once in a while, it is wrong.
I have warned against this from time to time, but it always bears repeating. The hype tossed around so casually in the great stem cell debate–mostly but not exclusively by ESCR proponents–has raised hopes so high that some people are rushing for unproven stem cell treatments in places like India and China. I worry that this is quackery. Remember, ES cells cannot be used safely in humans and most adult stem cell treatments remain at the clinical trial stage.
An Australian woman was recently taken in and feels cheated. From the story:
A NEW type of traveller dubbed the stem cell tourist is worrying Australian scientists and doctors who say the vulnerable ill are being duped. Australians with debilitating and sometimes terminal diseases are spending tens of thousands of dollars for unproved stem cell treatments in Third World countries.
Many, such as Townsville paraplegic Asti Poole, are coming home out of pocket, and extremely let down, after seeing little or no improvement in their conditions. Ms Poole, 28, went to an infertility specialist’s clinic in India last year for two months of embryonic stem cell treatment.
Four other Australians were also at the clinic receiving treatment for spinal cord injuries. None has shown significant improvement. “We’d all joke that we were getting our dose of water for the day,” Ms Poole recalls. “It just looked like they had filled a needle up with water. We used to joke that we were all being conned. None of us are miraculously walking.”
It’s better that they were conned than actually injected with embryonic stem cells. Otherwise, they’d have to worry about dying from tumor formation.
Please. Please. Anyone thinking of obtaining stem cell therapies, do so through a reputable doctor or via a certified human trial. Otherwise, you might not just get cheated financially, you could put your heath at material risk.