HBO Is Making Sure We Don’t Know Jack About Jack Kevorkian

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Caveat: I haven’t seen the HBO “docudrama” You Don’t Know Jack yet, but the many reviews I’ve read, along with the info on the HBO site devoted to the film, are painting a pretty clear picture – namely, that people who watch this movie probably won’t know Jack Kevorkian at all. 

I grew increasingly suspicious as almost every article and review labeled Kevorkian as an advocate for the “terminally ill.”  Even back in 1997, when the Detroit Free Press published its series The Suicide Machine, it was clear that most of Kevorkian’s body count consisted of women with nonterminal chronic medical conditions or disabilities.  Here’s a synopsis of what the reporters at the Detroit Free Press found:

  • Counseling is often limited to phone calls and brief meetings that include family members and friends.
  • There was no psychiatric exam in at least 19 Kevorkian suicides, including several in which friends or family had responded that the patient was despondent over matters other than health.
  • In at least 17 assisted suicides in which people complained of chronic pain. Kevorkian did not refer the patient to a pain specialist.
  • Kevorkian’s access to such records varied widely; in some instances, he received only a brief summary of the attending physician’s prognosis.
  • Autopsies of at least three Kevorkian suicides revealed no anatomical evidence of disease.
  • At least 19 patients died less than 24 hours after meeting Kevorkian for the first time. 

By the estimation of the investigative reporters, at least 60% of the people who committed suicide with Kevorkian’s help weren’t terminally ill.

So why is everyone referring to him as an advocate for the “terminally ill?”

It’s because that’s what HBO is telling them on its website (and probably implies in the docudrama):

You Don’t Know Jack begins as 61-year-old former pathologist Dr. Jack Kevorkian (Al Pacino) launches his crusade to provide what he considers to be a humane and dignified option for the terminally ill – assisted suicide.

As the data from the Detroit Free Press (and corroborated by others) shows, HBO is misrepresenting Kevorkian’s “mission” in the promotional material.

There is evidence already of other misrepresentations as well.  One of the more detailed reviews appears in Obit, an online publication dealing with matters related to “life, death, transition.”  In the current edition, Julia M. Klein, in her review A Killing, or a Mercy?, shares a scene from the film that allegedly explains Kevorkian’s motivation for facilitating the suicides of so many people:

There are no flashbacks showing the doctor, who eventually claimed to have assisted 130 suicides, as a child or young man. But the screenplay gives us an early indication, later explained, that Kevorkian’s chief motivation for his law-and-custom-defying actions was regret at having stood by helplessly as his mother endured a prolonged, excruciating death.

Well, that’s a good story, but it may be just a story.  And it’s a far cry from the whole story.  What the film apparently avoids recounting is this: Kevorkian spent a couple of decades obsessed with the establishment of a medical specialty labeled “obitiatry” – a specialty involving causing the controlled deaths of individuals and exploiting the situation as a chance for live human experimentation on people who could be treated as though they were dead.

In 1991, he published a book titled Prescription Medicide: The Goodness of Planned Death.  Here is a very good summary of the contents from Kirkus Reviews – available at the Amazon link for the book:

Kevorkian, gadfly of the medical profession and inventor of the “suicide machine,” speaks his mind on the ethics of death. Its title notwithstanding, this is not primarily a discussion of euthanasia–or “medicide,” the author’s term for euthanasia performed by professional medical personnel–but, rather, largely a defense of his position that death-row inmates should be given the option of execution by general anaesthesia, thus permitting use of their bodies for experimentation and harvesting of their organs. Since his days as a medical resident, Kevorkian has attempted to convince legislators, prison officials, and physicians of the value of this approach. However, the art of persuasion is not Kevorkian’s forte; indeed, he seems unable to resist attacking and insulting those who disagree with him, referring to his medical colleagues as “hypocritical oafs” with a “slipshod, knee-jerk” approach to ethics. Those seeking a thoughtful discussion of euthanasia will not find it here, but Kevorkian does offer a revealing look at gruesome methods of execution. (Readers who have the stomach for it may be intrigued by his account of the many attempts to determine how long consciousness endures in severed heads.) Kevorkian concludes with a recounting of his development of the “Mercitron” (as he has named his suicide machine), his reasons for creating it, and his difficulties in promoting its use. A model bioethical code for medical exploitation of humans facing imminent and unavoidable death is included in the appendix. An angry doctor’s rambling and repetitious harangue, certain to arouse the ire of the medical establishment. (emphasis added)

As his own writing demonstrates, Kevorkian had wanted to be able to practice euthanasia and/or assisted suicide for a very long time – but that was just part of his overall agenda.  The touching scene recounted in the review is – at best – a very incomplete explanation of Kevorkian’s motivation.  At worst – it’s a total fabrication meant to delude viewers – and making Jack Kevorkian out to be someone he isn’t – and never was.

Unfortunately, there’s even less hope than usual that there will be any real critical analysis of Kevorkian and the movie from journalists.  It has nothing to do with a “liberal media” or anything like that, though.  It has more to do with mega corporations, the conflation of journalism and product promotion, and how that contaminates an important story like this one.  More about that tomorrow.  — Stephen Drake

Connecticut: Affidavit of Nancy B. Alisberg in Motion to Intervene in Assisted Suicide Suit

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As promised in yesterday’s blog posting, today I’m sharing the affidavit submitted by Nancy B. Alisberg, Managing Attorney at the Connecticut Office of Protection and Advocacy for Persons with Disabilities (OPA) in the OPA’s motion to intervene in Blick v. Division of Criminal Justice.  Alisberg’s affidavit goes into detail about some of the actions she and her staff have taken to intervene in “end of life” (note: she doesn’t use that term, but it seems fair to characterise them that way.) decisions imposed on individuals by guardians, conservators and medical professionals.

A scanned pdf copy of the affidavit can be accessed here.

Below is a retyped copy of the affidavit.  I’ll share some of my own thoughts and reactions at the end.

NO: HHD CV 09 5033392 S

GARY BLICK, M.D., and
RONALD N. LEVINE, M.D.

V.

OFFICE OF THE DIVISION OF CRIMINAL JUSTICE, et al.

SUPERIOR COURT

JUDICIAL DISTRICT OF HARTFORD
AT HARTFORD

APRIL 8, 2010

AFFIDAVIT OF NANCY B. ALISBERG

1.    My name is Nancy B. Alisberg.  I am over 18 years of age and I understand the obligations of an oath.
2.    I am employed by the State of Connecticut Office of Protection and Advocacy for Persons with Disabilities (“OPA”) as the Managing Attorney.  I have been employed in this capacity since March 31, 2000.  I have been a member of the Bar of the State of Connecticut in good standing since November, 1983.
3.    As the Managing Attorney, my duties include, but are not limited to, supervising staff attorneys employed by OPA and maintaining my own caseload of cases.
4.    In 2007 I represented a woman with a profound intellectual disability who lived in a group home.  She had a history of aspiration pneumonias.  Her physician decided that she would not recover from her current aspiration pneumonia without the insertion of a feeding tube.  The physician was concerned that she might not accommodate the feeding tube easily.  The physician therefore recommended that my client be starved to death by the withholding of nutrition and hydration.  Her guardian, who was her brother and lived in another part of the country, consented to the order.  The brother also signed a Do Not Resuscitate (“DNR”) order.  These orders were approved by the Department of Developmental Services (then the Department of Mental Retardation).
5.    When OPA learned of this situation, I immediately brought a motion in probate court to begin nutrition and hydration, and to remove the “DNR” order.  The court granted my motion.  The woman is now happily living in a group home and has learned to live comfortably with her feeding tube.
6.    In 2008 I represented a 15 year old boy who had a profound intellectual disability and was in the care and custody of the Department of Children and Families.  He had developed a severe yet treatable form of leukemia.  The physicians who were treating him believed that he would not understand why he would “suffer” from the side effects of the chemotherapy, and that he might lose some additional cognitive functioning from the radiation treatment.  They therefore felt he should not be treated and should be allowed to die.
7.    The physician’s position was brought to the hospital ethics panel which supported the physicians.  It was only because of the intervention of the OPA and another interested advocacy organization that DCF ordered that treatment be commenced.  This young man is now in complete remission and living in an adoptive placement.
8.    In 2009 I represented a woman who has a brain injury that was the result of a complication of a heart transplant.  The woman lived at a long term rehabilitation facility.  The treatment providers at this facility informed my client’s parents, who were her conservators, that she had reached what they believed to be her maximum level of rehabilitation.  Her parents decided that she would not want to live with her level of disability, and thus ordered that she receive only “comfort care.”  That decision sentenced her to death as it ended all routine anti-rejection treatment for her transplant.  My client expressed an unequivocal desire to live.  Her providers at the rehabilitation facility were aware of her choice yet they implemented the parents’ orders.  We were therefore required to obtain an order of the probate court in order to restart the required anti-rejection care to save her life.  She is now thriving, acquiring new skills and in a loving relationship.
9.    As the managing attorney, I have also supervised staff attorneys who have represented clients with intellectual disabilities who have had Do Not Resuscitate Orders imposed by guardians or conservators or who have been denied dialysis treatment for reasons related only to the level of their disability.  It is only because of the intervention of OPA and the probate courts that the lives of these individuals have been saved.

First, it could be that I am just paying more attention to these things, but I am getting the feeling that these cases are on the upswing.  In just the past few years, the Protection and Advocacy offices in Illinois, Wisconsin and Pennsylvania have all had to intervene in these types of situations.  I know of at least one other state in which Protection and Advocacy has had multiple occasions to intervene in attempted treatment withdrawal or withholding based on disability discrimination.  There’s no reason to believe that the problem is limited to those states.

Second, the most disturbing part of Alisberg’s affidavit is the description of the plan to end the life of the woman who was a heart transplant patient.  According to Alisberg, in spite of the woman having “expressed an unequivocal desire to live,” the medical staff were fully prepared to end the woman’s life through denial of anti-rejection therapy.  It seems to me that a medical team that could learn to live with ending the life of someone who expressed a desire to live could learn to live with just about anything.  That’s not a pretty thought.

Third, should we come up with a new term to cover individuals like the ones described in this affidavit?  Their current survival highlights to absurdity of some of the situations covered by the term “end of life decisions,” as the decisions to remove needed medical treatment were surely framed by guardians, conservators, and medical professionals in these cases.  Maybe we should call them “life nearly ended by an end of life decision” cases.  That’s probably too cumbersome to catch on.  Maybe we could fall back on a variation on the the familiar “near-death-experience.”  We could call these cases “near-eol-experiences.”  (Personally, I favor throwing the whole term “end of life” out in the trash and starting from scratch, terminology-wise, but I don’t think that’s gonna happen.)

I’m not really satisfied with the alternatives I put up.  Any suggestions out there?  I have a feeling there are a growing number of people who could fall under this new label.  Be nice if we could be the ones to craft the terminology this time.  –Stephen Drake

Connecticut: Affidavit of James D. McGaughey in Motion to Intervene in Assisted Suicide Suit

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Last week, this blog shared the news that the Connecticut Office of Protection and Advocacy for Persons with Disabilities (OPA) has filed a motion to intervene in the Connecticut assisted suicide case, Blick v. Division of Criminal Justice.  The motion included several affidavits submitted with the motion to intervene.  Today and tomorrow, I’ll share the affidavits of James D. McGaughey, Executive Director of the Connecticut OPA and Nancy B. Alisberg, the Managing Attorney of the Connecticut OPA.

I’ll lead off today with the affidavit submitted by James D. McGaughey.  The text below is a retyped copy of the affidavit, but you can access a scanned pdf copy of the affidavit here.  Text of affidavit follows:

GARY BLICK, M.D., and
RONALD N. LEVINE, M.D.

V.

OFFICE OF THE DIVISION OF CRIMINAL JUSTICE, et al.

SUPERIOR COURT

JUDICIAL DISTRICT  OF HARTFORD
AT HARTFORD

APRIL 8, 2010

AFFIDAVIT OF JAMES D. MCGAUGHEY

1.    My name is James D. McGaughey.  I am over the age of 18 and I understand the obligations of an oath.
2.    I am employed as the Executive Director of the Office of Protection and Advocacy for Persons with Disabilities.  I have served in that position since November 1, 1994.  Prior to becoming Executive Director, I was employed at the Office of Protection and Advocacy for Persons with Disabilities for 12 years, serving in various other capacities including Acting Assistant Director, Advocacy Program Director, Staff Attorney, Human Services Advocate, and Law Student Intern.
3.    During my service at the Office of Protection and Advocacy for Persons with Disabilities, the agency has represented individuals with significant disabilities who faced the prospect of, or actually experienced discriminatory denial of beneficial, life-sustaining medical treatment.  In most such cases physicians or others involved in treatment decisions did not understand or appreciate the prospects of people with disabilities to live good quality lives, and their decisions and recommendations sometimes reflected confusion concerning the distinction between terminal illness and disability.  In a number of those cases, despite the fact that the individuals with disabilities were not dying, decisions had been made to institute Do Not Resuscitate orders, to withhold or withdraw nutrition and hydration, to withhold or withdraw medication or to not pursue various beneficial medical procedures.  In my experience, people with significant disabilities are at risk of having presumptions about the quality of their lives influence the way medical providers, including physicians, respond to them.
4.    Over the past twenty years I have participated with disability and elder advocates, state agency representatives, healthcare professionals, legislators, the Probate Court Administrator and staff from the Connecticut General Assembly’s Law Revision Commission on several committees that studied and drafted proposed amendments to state statutes governing the powers of substitute decision makers and end of life decisions making.  In addition, on January 22, 2010, in partnership with the Connecticut Council on Developmental Disabilities and the A.J. Pappanikou Center for Excellence in Developmental Disabilities, my agency co-sponsored an informational conference on “Disability and Medical Decision Making; Ethical Issues in Policy and Practice.”
5.    Through my involvement in our office’s casework, and in researching and preparing for my policy advocacy roles, it has become apparent to me that people with significant disabilities are uniquely at risk of having the quality and value of their lives underestimated, that they are often perceived as “suffering” and that circumstances under which they may have to live in order to receive care sometimes leave them feeling despondent and hopeless.  In fact, I have met a number of people with disabilities who have told me that at various points in their lives they had “just wanted to die” before coming to realize that they could lead satisfying and contributing lives.
6.    In my role as Executive Director of the Office of Protection and Advocacy for Persons with Disabilities I have become aware of widespread opposition amongst disability advocacy groups to legalizing assisted suicide.  More specifically, I am aware that a number of well respected disability rights advocacy organizations, including the National Council on Disability, the American Association of People with Disabilities (AAPD), the National Council on Independent Living (NCIL), the National Spinal Cord Injury Association, the World Institute on Disability, Justice For All, TASH (formerly called The Association of the Severely Handicapped), the Disability Rights Education and Defense Fund (DREDF), and grass roots groups such as ADAPT and Not Dead Yet, have all adopted positions opposing legalization of physician assisted suicide.
7.    Opposition to physician assisted suicide amongst these disability advocacy organizations is rooted in the realities of the disability experience.  It is not uncommon for newly disabled people to experience a period of depression, or even for people who have lived with significant disabilities to become despondent over loss of function, support and important relationships.  While adjustment reactions of this sort are certainly understandable, for people with significant disabilities they are often compounded and prolonged by a general scarcity of accessible, relevant supports that would enable them to live with autonomy and independence.  Faced with the prospect of indefinite confinement in an institution, and with no visible alternatives to offer hope, understandable adjustment reactions often transform into a sense of permanent hopelessness, and, sometimes, a desire to die.  This reality is reflected in a number of “right to die” cases that were brought in different states several decades ago where individuals with significant disabilities asked facilities to stop feeding them, or to have life support equipment disconnected.
8.    In my capacity as Executive Director of the Office of Protection and Advocacy for Persons with Disabilities I am very concerned that if physician assisted suicide is legalized, the practice of prescribing lethal doses will not be limited so as to exclude people with significant disabilities who are despondent or depressed.  Disability advocacy groups know, and my personal experience confirms that amongst health care providers, the distinction between disability and “terminal disease” is often more a matter of perception than objective diagnosis.  For example, the various manifestations of muscular dystrophy, multiple sclerosis, or any number of other chronic conditions may be considered by some to be progressive disabilities, while others see them as “terminal diseases.”  Some people are born with disabilities that that involve multiple, complex medical issues or genetic syndromes that can, but do not always, result in shortened life expectancies.  Other people with physical disabilities may experience repeated, life-threatening infections or various other serious health issues.  Some even depend on life-support technologies, such as respirators or dialysis, or receive nutrition and hydration through feeding tubes and central line catheters.  It is not clear at what point these people would be considered “terminally ill” or how much such decisions would be influenced by pervasive stereotypes about “quality of life” and frank ignorance about the possibilities of living a good life with a disability.
9.    My concerns in this regard are heightened by the literature I have reviewed regarding the unreliability of medical prognostications concerning timeframes in which death will occur for individuals who are considered to be terminally ill.
10.    Based on my experience advocating on behalf of individuals with significant disabilities, I have concluded that categorically exempting physicians from criminal liability if they prescribe lethal doses of drugs will increase the risk of doctor assisted suicide amongst people with disabilities who may have years of life ahead of them.  I further believe that de-criminalizing physician assisted suicide will foster perceptions that living with a significant disability involves suffering and inherently poor quality of life, and that removing the current legal proscription will serve to legitimize the view that life with a significant disability is not worth living.  This, in turn, will impact perceptions of the general public about disability, and will likely influence individuals with disabilities who are struggling with adjustment issues, who cannot readily access options for independent lifestyles, and who are concerned about burdening family members with cost and care.

If readers didn’t take notice of the statements in item 3, please reread the comments.  They touch on the battles that OPA has had to fight in preventing the wrongful deaths of people with nonterminal disabilities – fighting against guardians/conservators and medical professionals.  Tomorrow, I’ll share another affidavit, that goes into detail about some of those cases.  –Stephen Drake

Connecticut: Disability Rights Advocates Move to Intervene in Assisted Suicide Case

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This just in from the Connecticut Office of Protection & Advocacy:

 
Hartford – The Office of Protection and Advocacy for Persons with Disabilities (OPA) filed a motion in Superior Court today to intervene in a recently filed lawsuit about assisted suicide.  The underlying suit, Blick v. Division of Criminal Justice, was initiated by two physicians who are represented by local counsel and by lawyers from Compassion and Choices, a successor organization to the Hemlock Society.  The two doctors seek a ruling protecting them from prosecution for prescribing lethal doses of drugs to patients whom they judge to be terminally ill and who ask for the drugs in order to commit suicide.  OPA is joined in the motion by two well known Connecticut advocates, Catherine D. Ludlum of Manchester, and Claude Holcomb of Hartford.
 
The advocates are asking to intervene in order to ensure that the disability perspective is represented in the case.  In its brief, OPA describes widespread opposition to physician assisted suicide amongst national disability groups – opposition that is based in two realities deeply rooted in the disability experience: 1) the very human feelings of despondency and hopelessness that can sometimes overwhelm a person who is adjusting to loss or who grows discouraged by an inability to find the supports needed to live autonomously outside of an institutional environment; and, 2) presumptions and unconscious prejudice on the part of some health care professionals, including physicians, about quality of life and distinctions between disability and “incurable disease”. 
 
The brief cites a number of cases where OPA has had to take action to defend the lives of individuals with disabilities because physicians had agreed to withhold or withdraw medical supports, even though those individuals were not dying.  In supporting affidavits, Ludlum and Holcomb also refer to experiences they have had interacting with health care professionals where their identities and personal histories were fundamentally misunderstood, they were perceived to be “suffering”, and medical decisions were based on erroneous assumptions about the quality of their lives.  Both have been active in efforts to oppose legalization of assisted suicide.
 
“Legalizing physician-assisted suicide could easily prove to have deadly consequences for people with disabilities,” said James D. McGaughey, OPA’s Executive Director.  He added: “This case also has profound implications for public policy.  Experience in Europe and elsewhere demonstrates that if this practice is decriminalized, societal investment in options for genuinely compassionate end-of-life care slows down, and attempts to regulate its scope fail to prevent abuses.  We have to worry too, that with all the current emphasis on controlling health care costs, physician assisted suicide could become an expectation for anyone perceived as a ‘burden’.”
 
********

The Office of Protection and Advocacy for Persons with Disabilities is an independent state agency charged with defending the civil rights of people with disabilities.  Part of a nation-wide network of legally based disability advocacy organizations, OPA operates pursuant to both state and federal mandates. 

Fifth Anniversary of Terri Schiavo’s Death – A History Lesson

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I’ve probably revisited the struggle over the life of Terri Schiavo in a backwards fashion. I – like other disability rights advocates and activists – have a good memory and were deeply involved in the efforts to stop the removal of Terri Schiavo’s feeding tube.

What that means is that our memory of the struggle is far different than the majority of the public, who mostly believe that the Congressional bill passed hastily by Congress was something the Republicans “pushed down people’s throats.” For varying reasons, political interest groups at both end of the spectrum prefer that the public misremembers events that way.

Below is a C-Span broadcast from March 19, 2005. It features Senators Tom Harkin, Rick Santorum, and Mel Martinez – all of whom played key roles in writing the bill that granted review in federal court of Terri Schiavo’s case. Harkin, a long-time ally of the disability rights community, explained his role in the passage of the bill and how that in rare cases a federal review might be necessary. All of the Senators express hope that a broader bill can be worked out in the future to apply to a broader group of individuals. All express gratitude for bipartisan cooperation on the Congressional bill.

I am lousy at doing transcribing – so I apologize for the lack of a transcript. Please note especially Harkin’s defense of the efforts.

For most people, this will probably be the first time they’ve heard the remarks – since virtually every major news organization – radio, cable, network and print – ignored this press conference and the bipartisan nature of the agreement that allowed passage of “Terri’s bill.” Video below:

That bipartisan moment didn’t last long. It actually started to unravel several days before this press conference. Senator Martinez inadvertently passed a memo to Senator Harkin that listed a list of “Republican talking points” that involved ways the Schiavo case could be used to attack Democrats.  The memo was written by an aide to Senator Martinez, who professed ignorance over its contents at the time.

After Terri Schiavo died, several leaders of Conservative interest groups started using the unsuccessful court challenge as a political rallying cry:

As the vigil in Florida ended for Ms. Schiavo, who was severely brain-damaged, conservatives said the refusal of the federal courts to step in underscored the need for Senate Republicans to end the ability of the Democratic minority to filibuster President Bush’s judicial nominees.

Dr. James C. Dobson, the founder of the evangelical group Focus on the Family, said the judges who would not stop the removal of Ms. Schiavo’s feeding tube were ”guilty not only of judicial malfeasance — but of the cold-blooded, cold-hearted extermination of an innocent human life.”

Tony Perkins, the president of the Family Research Council, said: ”It is a tragic, unfortunate but avoidable event that should awaken Americans to the problem of the courts. It is no longer theoretical. It is life or death.”

Right-Wing interest groups and leaders weren’t the only ones looking to further polarize the public – and revise history – in the name of political gamesmanship.

In mid-April 2005, DNC Chair Howard Dean announced that Democrats would make the Schiavo case an election issue:

Dean, who has called congressional intervention in the Schiavo case “political grandstanding,” singled out House Majority Leader Tom DeLay (R-Texas) for his leading role in the matter.

“This is going to be an issue in 2006, and it’s going to be an issue in 2008,” Dean told about 200 people at a gay rights group’s breakfast in West Hollywood, “because we’re going to have an ad with a picture of Tom DeLay saying, ‘Do you want this guy to decide whether you die or not? Or is that going to be up to your loved ones?’ “

Dean, a practicing physician until he became governor of Vermont in 1991, added: “The issue is: Are we going to live in a theocracy where the highest powers tell us what to do? Or are we going to be allowed to consult our own high powers when we make very difficult decisions?”

Before Schiavo’s death, the Republican-controlled Congress passed legislation giving her parents the right to take action in federal court to have her feeding tube reinserted, but no judge intervened. Schiavo’s husband had fought for years to withdraw the tube, arguing that she would not have wanted her life extended.

Although Democrats voted for the measure, Dean said it provided an opportunity to showcase what he called Republican intrusiveness in the lives of Americans.

This is far from a complete list of those who promoted a revisionist history of the Schiavo strruggle for their own political ends, but it’s pretty representative.

On the right and the left, both bet on the same revision of history – that the battle over Terri Schiavo was a chapter in the “culture wars.”  In the end, it would seem that Howard Dean won the “bet” over who would be best served by that revision. 

The real losers, of course, are people under guardianship or a conservatorship.  The atmosephere at present is poisonous in terms of revisiting what kind of protections people whose decisionmaking is in the hands of others might need.