Jacob Appel: Bad Medical Historian, Questionable Ethicist or Just a “Spin Doctor?”

bioethics, euthanasia, infanticide, jacob appel, media coverage, medical decisionmaking, Netherlands, Our News & Commentary Blog, research, unethical ethicists

As a left-handed tribute to “bioethicist and medical historian” Jacob M. Appel, I have titled this blog entry as a question, leading uninformed readers to think maybe I will seriously analyze an issue with two or more sides.  In fact, as readers of this blog know, I have a definite viewpoint and people come to this blog reading the content with that in mind.

However, when readers of the Huffington Post come across an entry by “bioethicist and medical historian” Jacob M. Appel, titled in the form of a question, they might be inclined to think they are going to get expert, honest and unbiased analysis.  Since most readers of the Huffington Post aren’t any more inclined to critical thinking than attendees at a Tea Party event, most readers might miss that while Appel may be an “expert,” they don’t get any analysis, let alone unbiased and honest analysis.

The source of this mini-rant is an essay posted by Appel on Huffington Post:

Should Children Have A Right to Die?

First off, the essay is about killing children rather than “letting them die.”

Second, the essay is about why we should allow children to be killed, rather than an analysis of the pros and cons.  The title is subterfuge.

The title, to be honest, should read something like “Parents should be able to ask doctors to kill their seriously ill and disabled children.”

But the misleading nature of the title only skims the surface of the distortions, omissions and manipulations in the essay by Appel.  They begin with the first sentence:

Advocates for aid-in-dying have largely focused their efforts on the rights of mentally-competent adults to end their lives when and how they wish.

Almost a year ago, this blog featured a post devoted to revealing the history of pro-euthanasia leaders promoting legalized killing of ill and disabled kids in the US and Canada. Maybe “historian” Appel didn’t know about that.

The impetus for Appel’s essay was the publication of a new study published in Archives of Pediatrics & Adolescent Medicine.  From the AP story on the study:

The study was published Monday in the March edition of Archives of Pediatrics & Adolescent Medicine. It was based on interviews with parents of 141 children who had died of cancer and were treated at three hospitals, in Boston and Minnesota.

Among parents studied, 1 in 8, or 13 percent, said they had considered asking about ending their child’s life, and 9 percent said they had that discussion with caregivers. Parents of five children said they explicitly requested euthanasia for their dying children, and parents of three said it was carried out, with morphine.

The lead author of the study is quoted as doubting the interpretation of parents who believe the lives of their children were ended, saying they were probably given sufficient morphine to quell symptoms and that timing of death (imminent anyway) was “coincidental.”

None of those nuances are explored by Appel.  He reasons that since a small percentage of the parents wanted the lives of their kids ended, it should have been legal for doctors to do it. 

What else does Appel do in the course of his essay?

  • Fails to mention that the Netherlands – after lobbying from some medical professionals – has accepted infant euthanasia as a practice.  The first known “beneficiaries” were infants with (nonterminal) spina bifida and hydrocephalus.Where’s a “medical historian” when you need one?
  • Sets up a “straw man” argument citing fears of “nefarious parents,” ignoring the historical reality of the willingness of some doctors in the US to manipulate parents to accepting “nontreatment” leading to death as the best thing to do with infants with spina bifida and hydrocephalus.  It’s an important episode in US medical history – to disability advocates and activists, anyway.  To bioethicists and “medical historians,” – not so much.
  • Engages in his own rhetorical “slippery slope” as he glides through the essay discussing the euthanasia of “terminally ill” kids with cancer, then moves on without effort to include “chronically ill.”  All of it falls under “end of life.”
  • Finally, and probably most egregiously, Appel really should have told his readers that he took a public position on this matter in an article published last year.  And to be totally honest, his position is that the potential suffering of a child or infant should be the determining factor in deciding to kill them – not the consent of parents.

I already knew that intellectual honesty and rigor weren’t required to gain prominence in bioethics circles.  Apparently these traits aren’t held in esteem in the field of medical history, either.  –Stephen Drake

Illinois: Kangaroo Hearing on “Presumed Consent” Organ Donation Bill Scheduled Today

bioethics, brain death, Illinois, kaylee wallace, legislation, organ donation, Our News & Commentary Blog, Ruben Navarro

From the Peoria Journal Star:

Public can weigh in on organ donation bill

Excerpt:

PEORIA —A public hearing is scheduled for 3 p.m. Tuesday in Springfield to receive comment on state Sen. Dale Risinger’s bill to establish a presumed consent policy for organ donation in Illinois.

Sometimes called the opt-out policy, presumed consent has been adopted by many countries and has significantly reduced shortages and waiting time for donated organs. Rather than requiring people to sign up to be a potential organ donor, everyone is considered a potential donor except those who specifically opt out of the program.

Risinger’s bill proposes a presumed consent policy applies for people 18 and older.

“This is an important first step to getting a law in Illinois that helps us have more organ donors. This is just the first step. To get it right, we need public input. The current bill is not in its final form,” said Risinger, R-Peoria.

Risinger’s stated commitment to soliciting public input seems pretty disingenuous.  Outside of a few careful readers of today’s edition of the PJ Star, it’s a pretty good bet that the only people who know about today’s hearing are supporters of the bill. Predictably, the “public input” will reflect overwhelming support for a radical change in organ donation policy, simply because Risinger and his supporters have carefully stage-managed the coming show.  Look how well the PJ Star article is managed – no voice of caution or dissent.  A few phone calls to various bioethics departments would have yielded some.  If you want to know just how radical this change would be, consider that Illinois would be the only state in the country with such a policy.

So why would anyone have a problem with this?  I can only speak for myself – a former Illinois resident, but I’ll give a few basic objections.

First, the term “presumed consent” is deceptive – as is the term “opt-out.”  In fact, you can’t really talk about “consent” at all with a bill like this, unless you think “imposed consent” makes any kind of sense as a term.

Second, some of us refrain from registering as organ donors because we don’t trust some of the lesser-known, but worrying realities regarding organ donation and attempts to expand the donor pool.

I’ll start off with brain death.  Most people assume that since the state they live in considers them a corpse if they’re declared “brain dead,” then the state also imposes some sort of uniform standards regarding how that determination should be made.

That’s a comforting thought, but it’s not the reality.  In fact, a 2008 article published in the Journal Neurology found wide disparities in how hospitals made determinations of brain death. It’s not surprising considering how the statutes relating to brain death were written (from the article):

In accordance with the Uniform Determination of Death Act, guidelines for brain death determination are developed at an institutional level, potentially leading to variability of practice.

Notice that the autonomy of individual hospitals is treated with a great deal more deference in the UDDA than Risinger and his colleagues believe Illinois citizens should have over their own organs.

In case you’re wondering, there have been a handful of cases made public in which people declared brain dead “miraculously” recovered.  Zack Dunlap’s “miraculous” recovery is the most well-known.  Not so miraculous when you know that some institutions aren’t as rigorous as others at making those determinations.

Maybe medical professionals aren’t all that hung up on whether or not the determination of brain death is accurate or not, anyway.  Over the past several years adoption of the Donation after Cardiac Death protocol has allowed harvesting of organs from individuals within a short (a very short time) after their heart stops beating, usually through removal of a ventilator.  The issues here are too long and complicated to get into, but there are already some pretty troubling stories associated with the protocol that should give any reasonable person pause.  For more information on that, I recommend reading  this link on Ruben Navarro, this one on Kaylee Wallace, and this article by Dick Sobsey on “Schrödinger’s Ethics.”

Does that mean I would never be an organ donor?  No, it doesn’t.  What it does mean is that my family knows that if I am declared “brain dead,” they will demand to know exactly how the determination was made and how that stands up to the standards determined by the American Academy of Neurology.  If the “gold standard” has been met, they can get the organs.

I am not OK with the donation after cardiac death protocol and my family knows this.

See how much there is to discuss?  Wouldn’t it be a great idea if Risinger decided to actually open this bill up to a real debate?  Isn’t the public entitled to something better than what looks like a stacked deck masquerading as an open public dialog?

For more info on this bill, please check out the following link:

Bill status for SB3613 (includes link to full text of legislation)

According to the PJ Star article, testimony can be emailed to Sen. Risinger here.  He says he wants to hear from the public.  –Stephen Drake

Addendum: In my haste, I forgot to thank Nancy Valko for alerting me and others to this bill.  I doubt I would have heard about it without her digging out the information and sending it on.

UK: The Independent – “Disabled people need assistance to live, not die,” by Clair Lewis

advocacy, assisted suicide, clair lewis, crime and punishment, Homicide / 'Mercy Killing', media coverage, Our News & Commentary Blog, United Kingdom

By now, readers of this blog are probably getting familiar with the name and the writing of Clair Lewis.  Today is another chance to read what she has to say about the recent developments in the UK. 

Writing in The Independent, Clair says “Disabled people need assistance to live, not die. “

Here’s the first part of her essay:

There is a saying among disabled people that goes: “If it hurts, we know we’re alive”. Like most humans our natural instinct is not merely to survive but to flourish. For this we need assistance to live, not die. Disabled people suffer so much neglect, isolation, exclusion and discrimination that some volunteer for euthanasia. But this is not the only way to address suffering. What about assistance to live?
When healthy people are suicidal, the usual response is to try to help them live better lives, not provide a solution which encourages them to die. It seems that disabled people are the only people who can be suicidal and mentally competent at the same time. Help offered to people with suicidal feelings is often inadequate. But however strapped for cash the NHS is, the one thing they won’t do is offer to finish the job off properly. 
This is why people like me are so concerned about the Director of Public Prosecution’s new guidelines on assisted suicide. On the surface, they look like an attempt to equalise the legislation – they move the focus on to the motivations of the assistant, widen up who may assist in a suicide and pay particular attention to whether an assistant’s actions were “compassionate”. But what is the definition of compassion?
Read the rest here.  And consider leaving a comment on the site so the paper know the essay was read and appreciated.  –Stephen Drake

UK: Director of Public Prosecutions Publishes Guidelines on How to Get Away with Murder

assisted suicide, clair lewis, crime and punishment, Our News & Commentary Blog, United Kingdom

The long-awaited – and dreaded – “guidelines” from the Director of Public Prosecutions in the UK have been published.  There are many reactions and lots of commentary out there, but by far the best I’ve read so far is from Clair Lewis, who writes “Getting Away With Murder: Discriminatory how-to guide is a national disgrace“:

(excerpt)

In an unprecedented move, the Director of Public Prosecutions will release his special guide on how British citizens can aid and abet suicides with his approval.. as long as they only do it to the people he’s selected as fit for death.

Helping end someone’s life is a crime, which usually carries a 14 year prison sentence, but not so if the corpse is one of someone who was very sick and they were ‘asking for it’. In which case, judging by recent news and the killers walking free among us, you get freedom and national hero status.

Now we will all have a neat little guide to help us kill our loved ones right.. to CPS standards. State approved Assisted Suicide Kits aren’t available, but then, it takes time to organise given how many hundreds of thousands of very sick people must need their family’s ‘help’.

In a late addition to her blog entry Clair added the following:

If you want a full copy of DPP guidelines on assisting suicide, message me your email address – I just got sent one by Roger Daw, the DPP himself.

It seems, quite differently to the draft which came earlier, he has unexpectedly taken out the reference to impairment/health and Mr Daw wants to know if we’re satisfied now (am about to read the full thing so can’t confirm, anything yet).

Is this a victory for disabled people.. have the public in response to their consultation talked him round?  Does this mean now anyone can help anyone commit suicide? I find that unlikely. And who else would this law affect except the only community considered (impossibly) to have improved lives via death? Who else can be killed for their own good?

If I get where Clair is going with this, I agree.  It’s pure bullshit to think that age, health status and disability – characteristics of the deceased – will cease to be the most important criteria in determining who escapes prosecution.  After all, it pretty much works that way now, without “guidelines” from the DPP.

 I meant to write more on this earlier today and will follow up tomorrow.  Clair brings up some other issues – such as a decreased presence of disability activists in the debate.  I have been thinking about these things and how they relate to how the whole pro-euthanasia movement seems to be snowballing right now.  I have some possible answers – and I’ll write more about that tomorrow.  –Stephen Drake

Testimony of Karen Scheiderman – MA Assisted Suicide Hearing

advocacy, assisted suicide, Massachusetts, Our News & Commentary Blog

Karen Schneiderman reconstructed her testimony from notes and memory – the following is a fairly accurate recounting of her testimony:

For the Boston Center for Independent Living
60 Temple Place 5th floor
Boston MA 02111

Regarding House No. 1468
Assisted Suicide

My name is Karen Schneiderman, and I work for but am not presenting an official position of the Boston Center for Independent Living. I am a woman with a disability who lives in the state of Massachusetts and has deep distrust about the motives and needs to institute assisted suicide in the Commonwealth.

We live in a culture that does not value people with disabilities even when we are healthy. We are considered a financial burden and a frightening look at anyone’s potential future. Our lives are perceived as sad and lonely. As a productive woman, with two jobs, a Ph.D., married and living a good life, I resent this stereotype and I worry that I would be just the sort of person who might be a good “candidate” for assisted suicide were I terminally ill or suffering and unable to be cured of some additional illness or disability in addition to the one I was born with – Spina Bifida – the second most common genetic disability. The medical profession has at times been both a friend and an enemy to me, saving my life at birth and experimenting on me later in life.

This profession is a profit-driven institution that makes decisions based on financial as well as medical issues and were I to be in a situation where I were so sick that it became financially burdensome to the State, I suspect many physicians would support my decision to kill myself with their help if I were in a state of fear and helplessness. I can hope that family members will be around to help me through the depression and fear but one cannot be sure of such a thing. It is easy to see why in such a state I might decide with the “help” of the medical profession to choose death.

This is a deeply private decision, not one to be made with a doctor, even a doctor with scruples, because the entire culture in which we live already sees me and my sisters and brothers with disabilities as throw aways. I know there will come a time when I will feel the desire to end my life, as I suspect most people do at some point. As the daughter of a healthy 92 year-old man who chose to jump to his death in an act of suicide a decade ago, I know whatever drew him to it was not helped by the same culture that worships youth and puts up with elders, despite their value as human beings of any age.

I oppose assisted suicide at this point in history where people with disabilities are perceived has inherently less worthy than non-disabled people and I choose not to put the final piece of my fate in their hands. Not now, when our culture sees us through a prism of uselessness and dependency. That model is inaccurate now and I have no illusion that there will be a sea change in my lifetime, however long that is.

Thank you.

We will post others as they become available. If the documents are too long, we’ll post excerpts with a link to a document online. –Stephen Drake