Followup on Betancourt v. Trinitas - Reports, Coverage and More

I wanted to give readers a followup on yesterday's oral argument in Betancourt v. Trinitas.

First of all, I talked to Nadina LaSpina and Danny Robert today about yesterday's court proceeding. (this link goes to a 1998 interview with Nadina and Danny, who are activists and life partners.)

Nadina and Danny told me that there were six disability activists in all who went to the hearing.  Also attending were fellow NYC disability activists Marla DeFex, Melina Cowan, Hope DeRogatis, and Alvaro Prieto. There were two attendants with the group as well.

According to Nadina, the travel to and from the courthouse went smoothly, largely due to the efforts of Anne Studholme, who charted the course, checking carefully for accessibility and sent detailed instructions.  Travel entailed a train trip from NYC to New Brunswick - and then a relatively short trip to the courthouse.

The courtroom itself was relatively small and the only place for wheelchair users to sit was up near the front, in back of the lawyers and not that far from the judges themselves.  I'm told that Thaddeus Pope came up and introduced himself.

The hearing was emotionally draining on the activists.  Every mention of "dignity" and what constituted the lack thereof felt personal.  Danny, for example is a full-time vent user.  I imagine that the sound of the machine that helps him to breathe was pretty audible in a small courtroom.  In any case, I'm told that at least one of the judges would look at Danny every time a ventilator was mentioned in anyone's arguments before the bench.  No telling what that means, if anything.  I'm guessing - that at the least - it's a reminder that ventilators and people who use them are more than just abstractions - and more than examples of "indignity."

Jackie Betancourt, the daughter and surrogate decisionmaker for Ruben Betancourt, who was the patient that was at the center of this court case, left a comment in response to yesterday's blog.  I'm reproducing it here:

I am the daughter of Ruben Betancourt, i went to court today & stood at the door with my mother, listening, i just want to say "thank you" from the bottom of my heart!!! My father was a fighter...& he would be very proud!!!!! We the family unfortunately were unable to file a case against the hospital decision to appeal Judge Malone's decision, our lawyers at the time said to us that it would be very costly to take to a supreme court... So we decided to close all ties with the lawyers... Because to us it wasn't about the money, it was about a life, a human being "my father"... 

Anne Studholme also left a comment - partly in reply to Jackie Betancourt - but I think that should be shared here as well:

Thank you so much, Jackie for writing. I didn't know if you would be there, and I'm grateful that you and your mother were able to hear the arguments and that your father would have approved as well.

I just wanted to let everyone reading the blog know that, as predicted, I didn't get to read much (possibly not any) of what I had prepared. That always happens! I think we did manage to make the point that this is not about "demanding" care. It's about a very, very difficult and emotionally wrenching decision which under long-established NJ law is for the patient to make. If the patient is unable to communicate, then the family has the burden and anguish of having to figure out what the person they love would want to happen-- to continue life-sustaining measures or to end them-- and then doing their best to ensure that is what is done. It becomes so much harder when you have to fight to make it happen.

By a twist of fate that maybe was a message to the lawyers as to how personal this is, BOTH I and the lead amicus counsel for the hospital had our mothers die the very day before the oral argument. I do not know the circumstances of Mr. Jackson's mother's passing. He has advocated with courtesy, valor, and professionalism for his clients, and I wish him and his family all the very best. This case may potentially continue, and he is a worthy participant.

My mom had stage 4 lung cancer and suffered a heart attack. I learned today that my sister in N.C. had to fight with an ER doctor who wanted to revive my mother, AGAINST my mother's wishes that extreme measures not be taken, particularly if she were fortunate enough to be dying painlessly, given what she was facing.

So the situation can cut both ways, but the patient's legal right to direct whether to stay on life support or discontinue it was achieved at large emotional costs to the patients and families who walked the path before us. It would be so unfortunate to have that right weakened.

Jackie, it's never easy to get picked, essentially by fate, to have your father's and, for your mom, her husband's struggle become a leading legal case. I hope that having to relive it isn't too painful, and thank you and your mother and brothers for what you went through in advocating for your father.

I personally also would thank the medical caregivers who do very hard work, and who also bear heavy emotional strain. And thank you to the NDY members who made the long trip to Court. Your presence helped to keep us mindful as to what is at stake.

There is an article about the hearing in the New Jersey Star-Ledger worth checking out.

Thaddeus Mason Pope has posted his oral argument, and will write more about his impressions of the proceeding in the future.  He opens the post with this:

This morning in New Brunswick, New Jersey, a totally packed appellate courtroom was treated to a lively 90 minutes of oral argument on the law and ethics of medical futility. The hearing in Room 103 of the Middlesex County Courthouse Room was attended by local hospital physicians and ethicists, by representatives of several Jewish groups, by interested attorneys, by the press, and, most visibly, by members of Not Dead Yet and other disability groups. Their specialized wheelchairs and mechanical ventilators sent a very strong message to the judges (and everyone else) about the dangers of judging the value of someone else’s diminished physical condition.

It could be months before the court issues a decision.

For my part, I want to extend my gratitude to:

• Anne Studholme for her work and commitment to this case;
• Jackie Betancourt and the rest of her family who have continued with this fight when many would have put it behind them;
• ADAPT, the Center for Self-Determination, the National Council on Independent Living, the National Spinal Cord Injury Association, the American Association of People with Disabilities, and Disability Rights New Jersey for joining NDY in the amicus brief.
• Nadina LaSpina, Danny Robert, Marla DeFex, Melina Cowan, Hope DeRogatis, and Alvaro Prieto for taking the time and energy to make sure there was a live disability presence in the courtroom.

It's a privilege to be associated with a group of people and organizations like this.  Thank you all.  --Stephen Drake

New Jersey/Futility: Oral Arguments in Betancourt v. Trinitas (Appellate Court)

Oral arguments are scheduled today (April 27, 2010) in front of the New Jersey Appellate Division.  The case is Betancourt v. Trinitas.  You can read more about the case here and here.  It's an important judicial hearing on one hospital's claim regarding the extent of their "right" to summarily refuse life-sustaining medical treatment over the wishes of family and/or guardians.

Anne L. Studholme, Esq. is representing Not Dead Yet, five other national disability rights organizations and statewide disability organization (listed below).

As Anne tells me, she will almost certainly not get to say very much of this argument as written - it is more likely that she will start getting questioned from the bench - this is most often the case with oral arguments.

Of additional interest, Professor Thaddeus Mason Pope will follow Anne Studholme.  Pope maintains the Medical Futility Blog - and it's unusual to see him play this role in a futility case.

NDY Activist, Organizer and Scholar Nadina LaSpina will be attending the hearing with other activists from NYC.  I hope to get an account from her later this week.

Below is the oral argument written by Anne Studholme:

May it please the court.  Mr. Drayton has shown how our Supreme Court's precedent decision in Jobes controls this case, as found by Judge Malone based on the factual record before him.    

Professor Pope will follow me and will describe the problems with the "standard of care"-based theory appellants proffer.  I'll be handling the precedent authority, and will do my best to help show why it is so important not to stray from the key concept of patient autonomy in choosing whether to live on, with life support, or die. 

And I have to be clear, we are not talking about brain-dead people, and cases dealing with brain-dead people do not help us here, unless what we are talking about is moving the goalposts of the definition of death.

I'm here representing seven organizations appearing as friends of the Court: Not Dead Yet, ADAPT, the Center for Self-Determination, the National Council on Independent Living, the National Spinal Cord Injury Association, the American Association of People with Disabilities, and Disability Rights New Jersey.

My clients advocate for the rights of disabled people to be treated as fully human beings.  Many of the directors and staff of my clients are themselves disabled, some in ways that non-disabled people might call severe, even "undignified," even "unpleasant."  I use those words because they are words that were used about Ruben Betancourt by his Trinitas physicians in the record below and in appellants' briefs and those of their amici.  Perhaps the most palpable expression of the horror with which able-bodied people sometimes view disabled and incurably ill people is the statement that "we're letting him deteriorate virtually right under our eyes."  We have to watch him decompose.  We shouldn't have to watch that.   

There is an aspect to the way in which able-bodied people, including doctors, view and interact with disabled people, an aspect which is often clouded by the euphemism "dignity," but which in reality comes down to aesthetics.  What does it look, sound, and smell like to live with a particular disability -- not being able to walk, not being able to feed oneself without help, not being able to clean oneself without help-- whatever the cause of the disability?  And what will others think of this?  Able-bodied people project their fear and their discomfort, and their guilt, and their rejection, when imagining how it would feel to be disabled. 

When able-bodied people advocate for ending the life of a disabled person on humane grounds, these judgments arise, cloaked in verbiage about 'dignity.'  For a person with PVS, who cannot experience sensations of pain, these aesthetic grounds predominate.

That may sound harsh.  And it certainly can be the case that genuine compassion for apparent suffering can lead people who are close to and physically care for and tend to and feel responsible for someone in Mr. Betancourt's situation to sincerely desire to end what they perceive to be his misery.

To the extent the trial court's finding of fact is that the weight of the evidence supports a PVS diagnosis and a PVS prognosis, though, suffering is not an issue.

If a patient has a well-supported diagnosis of PVS, and if anyone involved in the care of the patient thinks that perhaps the life sustaining medical technology and treatment which is maintaining the person's life should be discontinued, should be discontinued, it's a value call, then Jobes and Quinlan control. They control no matter who gets the ball rolling.

Because when we are talking about removing treatment which is successfully sustaining life, and if removed would end life, and we are doing it in the name of humaneness and of helping and serving the greater good of the person, then, in New Jersey, our sole guiding lodestar is what would the patient want?  Because otherwise, we're killing him, without a legal justification.

If Karen Ann Quinlan could regain consciousness for an hour, and could tell us what to do, what would she say?  What would Mrs. Jobes want us to do?  Would that change if the doctors were saying, "Ah, the heck with it.  We have done everything we possibly can, and he's not getting better, he's slowly getting worse.  We're done.  Pull it."

Naturally, we don't know for utterly certain what the person would say.  Sometimes we have good advance guidance, sometimes we have to guess as best we can.  But we are guessing what THEY would want.  That's why Jobes defers to the family.  Not because the family are necessarily the people who would most clearly see what's best for the patient, but because they are, in the view of our Supreme Court, the people who are most likely to correctly appreciate and understand what the person himself would have wanted to happen-- continue or discontinue, live on or die.

Now, my clients do have a problem with this. It asks less-disabled people, or non-disabled people (I personally have come to favor the term "temporarily able-bodied" people) to guess at what the less- or non-disabled person they knew, before, would think about living "that way" now-- as a person with disability in our society which so deprecates disability or illness or bodily weakness or frailty of any kind.

Still, in New Jersey patient autonomy as interpreted by the surrogate decisionmakler is the law.  

With a PVS diagnosis, it is permissible-- permissible, not mandatory-- under Jobes and Quinlan for a family member intimately familiar with the patient's personality to elect termination of life sustaining medical treatment if in their opinion that is what the patient would have wanted. 

The courts are to ensure that certain procedures are followed.  The procedures ensure that the diagnosis and prognosis are as accurate as we can make them and that the person's wishes are divined and carried out to the best of our ability.

The prognosis committee exists to ensure the prognosis is correct, because, once it is, then the power to direct whether or not to terminate life sustaining medical treatment passes from the patient to his decisionmaking surrogate. It does not pass to the doctor or to the treating institution, or to any board or committee of the treating institution.

And if the PVS diagnosis has sufficient support in the record to be sustained on appeal, then questions of pain, discomfort, physical or mental suffering, or humaneness are irrelevant. (I'm also going to address Conroy, which covers the situation where the patient may feel pain.)

The doctors here claim that they should be allowed to say that if a patient is destined to die without getting better, then life-sustaining treatment is futile.  They say, if it's futile, then it's outside the standard of care, and we are ethically obliged to end it.  They want the right to assert a standard of care that would require termination due to concerns that life sustaining medical technology is prolonging a life which they do not value-- perhaps because there is pain, perhaps due to the age of the patient, perhaps due to the patient's poor prognosis of regaining brain capabilities, perhaps due to a perceived lack of "dignity."  In their briefs, appellants cite all of those as a reason. 

One thing I do want to make sure to say, is that if this case were solely about removing dialysis from a patient SOLELY because that patient is perceived to be mentally disabled, with poor cerebral function, then we would have a clear-cut case of discrimination.  I just do want to note that defendants raised those arguments, and I'm not abandoning my right to refute them.

But defendants also combine old age, illness, poor prognosis, and possible suffering as rationales for discontinuing treatment here.  And I want to be sure to say that while I'm a bit confused as to whether defendants would need all of those elements to be there before they would pull the plug, or just some combination of some of them, I don't believe any of us have fully briefed that pure discrimination case, and I want to stick with an argument which, to me, in the short time I have, cuts most directly to the heart of what's before this court.

And that's the fact that this court is bound by five extensive and thoughtful precedent cases of our Supreme Court.  

It's true that the cases -- Quinlan, Conroy, Farrell, Peter, and Jobes -- all dealt with patients or family members who were seeking to stop medical intervention which was prolonging life.  The doctors were either acquiescent or desirous to continue treating.  None of those cases had the patient or the patient's surrogate decisionmaker wanting to go on and the doctors saying, "stop."

But the Court, over and over, said that when the question is whether to continue to hang on, or to surrender to illness and age, whether to keep on living perhaps in pain, or to end treatment and thereby end life in order to end the pain, then it is up to the patient what to do.

The Supreme Court did not see this general situation of who gets to say when enough is enough as a patient ordering a doctor to provide treatment without limit and without regard to what was effective.  

The treatment here, in this case, was indisputably effective at maintaining life.  It was effective at treating the physical failures it was designed to treat -- dialysis to clean the blood, the ventilator to circulate air into the lungs, tubes to deliver fluid and nutrition.  None of these technologies is perfect.  Ventilation and dialysis both can injure tissue over long periods.  Tube feeding sometimes cannot fully deliver all the nutrients a body needs.  But it is also without dispute that withdrawing any one of these treatments will result directly in death -- sometimes in a period of minutes, or hours, or days, depending on what is withdrawn -- but always, and soon.

The doctors said it was outside the standard of care to keep Mr. Betancourt alive, for various reasons having to do with how they viewed his life.  Professor Pope will show how that fails to articulate an actual standard of care, within accepted understanding of the term.

I do want to cover Conroy, because one of the things that can haunt us in these PVS cases, is, what if we're wrong?  What if the patient is suffering?  Or, what if the patient is able to perceive we're removing the tubes, and what if they're able to experience the terror that they're going to die?  What if we're wrong to say they are insensate?

If we're scared we might be wrong, though, we turn to Conroy.  And I'm not suggesting that this court would be at all justified in overturning Judge Malone's findings.  I think they're very well supported.  But it's of interest to see that if Mr. Betancourt were in exactly the situation he appeared to be: old; very, very sick; moaning a bit; possibly calming when stroked; a man who had been a fighter, a man who had been strong, now "reduced" to being in bed, not going to improve much, kind of on the downhill slide, not alert and fully conscious, but IF NOT PVS, then he's very close to Claire Conroy's situation, albeit somewhat younger.  And Conroy confirms the result below in this case was correct.

The Conroy Court was very, very aware that old and sick people, or disabled people, in institutions could be hastened toward death due to financial concerns or institutional prerogatives, and they wanted to make very sure that by opening the door to what they saw as fulfilling the person's desire not to live on, they were not opening the door for OTHERS to make that decision on the person's behalf.

The Court said:  If we know the person would want to stop treatment in this situation, then the appropriate surrogate decisoinmaker can order it stopped.  And if we have something to go on that says, though maybe not clearly, that the person would want it stopped if they were suffering, and we have some evidence of suffering, then the decisionmaker can order it stopped, and if we have no idea what the person would have wanted AND the suffering is so clear and so severe that anyone would prefer to die rather than have it go on, then the decisionmaker can order it stopped.  And if we have a directive to continue, we continue.

Here, we have some degree of evidence that Mr. Betancourt would prefer to fight on.  And we have some degree of evidence of suffering.  There's no evidence at all that he would want to give up, and there's some evidence he can't experience pain due to his level of consciousness.  Under Conroy, it could even potentially be argued that there weren't enough facts to authorize substituted decisionmaking to terminate-- that's channeling the patient's own will-- and there clearly wasn't enough suffering proved to permit anyone else to end life without knowing what the patient might want.  So Conroy does not give a different result from what the Court enabled Jacqueline to direct.

The appellants are asking this court to disregard settled precedent.  They're also overlooking that the Supreme Court first considered Quinlan, and then considered Conroy, and then got a raft of these cases and took three -- Farrell, Peter, and Jobes -- which seemed to present three distinct situations, and ruled on them in tandem to illustrate a consistent approach applied across varying facts.  The Court also said, we want to get out of this business of having these cases come up through the courts.  For one, it's too slow.  Even acting as fast as we can, Mrs. Farrell died "shackled to the respirator."  

My clients feel that was possibly a too-hasty conclusion on the part of the court: that no one could be expected to tolerate the respirator, because in fact some people do tolerate it and live for a long time with it.  But the point is, the court said, so clearly, when it comes to these cases where the question is: do we let the person live on, supported by the technology, or do we take it away and let them die, then ALL we look to is what would the person want?  What would THEY want?  

We can't make the decision for them.  We can't do what we think is best for them.  That's what the doctors want the right to do.  But under our law, we have to do as close as we can to what the patient would tell us to do.  And that's what Judge Malone said.  That it's not the court's business to make that decision, and it's not the doctors' business to make the decision based on what they think is in the patient's best interest and ask the court to bless it or implement it.  

And the Court understood that people wouldn't want either to have their lives prolonged against their will, nor to be too hastily shuffled off. And the Court understood and found that this decision is made within the highly regulated web of obligations attendant upon receiving the government's permission to practice medicine.  For example, in New Jersey, we have a very stringent anti-abandonment obligation, which Professor Pope will discuss.  And the Court understood there could be disagreement, and it said the role of the doctor is to provide information -- how long might this last, how much will it hurt, what level of functioning may or may not be regained-- information for the PERSON to make the decision.

And so, the appellants want to twist this around and say, well, in the olden times, the doctors all were very aggressive, but nowadays we would not always treat to the bitter end no matter what, and in fact, you know, with this guy who has cost us $1.6 million dollars, well, we think he's had enough.  

The Supreme Court was very afraid of exactly that, though they thought it would be a nursing home administrator, or a relative who was paying the bill.  The point is, turning the question into one where it's the patient who is supposedly asking the doctor to do something outside the standard of care by continuing to preserve the patient's life, well, who gets to say what the standard of care to preserve a life is?  Because unless we're very careful about that, we've just turned our backs on the HUGE work of our Supreme Court in telling us exactly how these cases should be handled.  The technology hasn't changed all that much, and the law hasn't changed, but what's changed is the finances of the thing.

More info as it comes in.  --Stephen Drake

Texas: Murder of Disabled Spouse Yields Probation for Wife

Texas has a reputation for doling out pretty harsh treatment when it comes to murder.  Apparently - in Austin, anyway - exceptions will be made if the victim is devalued enough. 

Last Friday, Katherine "Kim" Yarbrough received ten years of probation in a plea bargain.  Yarbrough had admitted to killing her husband, Lloyd Yarbrough.  Nevertheless, she was allowed to plead to "injury to a disabled individual." 

From the article in the Austin-American Statesman:

Police say Yarbrough admitted killing her husband, Lloyd, 62, by injecting his feeding tube with an assortment of crushed prescription pills. She then swallowed some drugs of her own, police have said. A police officer found the couple in bed May 27 at their home on Meadowview Lane, near Lamar and Research boulevards in North Austin.

Here is what the authorities have to say about the plea deal:

Outside court Friday, prosecutor Amy Meredith said that considering the facts of the case and Yarbrough's clean criminal history, District Attorney Rosemary Lehmberg did not think that a prison term was warranted.

Meredith noted that for years when selecting jurors in murder cases, prosecutors had used an example similar to Yarbrough's — when one spouse kills another to end that spouse's suffering — as a type of murder case that might warrant a probation sentence. (emphasis added.)

The problem with that rationale - and its reported in the article, but not as a problem, is that Kim Yarbrough never claimed to have killed her husband to end his suffering:

She blogged about her frustrations with outside caregivers and a lack of a support system.

"I wonder if I will ever change Lloyd's diaper without feeling the pain of what has been lost," she blogged four days before his death.

Two days before his death, she wrote, "Why should I keep living through all this?"

While in the hospital, Yarbrough was interviewed by police. According to an arrest affidavit, she told an officer that she killed her husband "because she was tired of taking care of him." When an officer asked her if Lloyd Yarbrough wanted to die, she said "no," the affidavit said. (emphasis added.)

There is no way to reconcile Kim Yarbrough's statements to the police with the statements of the prosecutor attempting to explain this plea bargain.  I guess they figure in Austin that if you're a "caregiver" you also get to end that role, in whatever way you see fit.  I guess they figure that killing someone as disabled as Lloyd Yarbrough isn't the same as a "real" murder.

If you think I'm being too harsh, several of the comments to this story have people praising this woman - evidently they don't know how to read or they don't think what Lloyd Yarbrough wanted mattered.  --Stephen Drake

Anderson Cooper, CNN and Kevorkian - Advertising Masquerading as Journalism

I don't usually watch Anderson Cooper.  His show airs past my bedtime.  But I had assumed he was some kind of journalist.  Maybe he is.  But when I got around to watching the taped segments of his interviews with Kevorkian, they looked more like the kind of softball/cheering squad that Larry King does so well.  If you check out the link above, you'll find that CNN describes - inaccurately - Kevorkian in exactly the same way that the HBO site promoting the docudrama does - highlighted in yesterday's blog entry.  Here's a line from the description of Cooper's interview with Kevorkian:

The film stars Al Pacino, who plays Kevorkian, the controversial physician who assisted terminally ill patients die. Kevorkian became a controversial figure in the debate surrounding physician-assisted suicide. In the clip above, he tells Anderson about the first time he helped a patient die. (emphasis added.)

This is, of course, how HBO describes Kevorkian's body count in its promotional material on the site.

And Cooper's "interview" steered carefully around any suggestion that any of the people who died at Kevorkian's hands were anything less than "dying."  Cooper was also cooperative in helping Kevorkian frame the controversy around assisted suicide as a religious one.  No clue that there might be NONreligious people - like disability rights activists who stuck it out through Kevorkian's trial - who would object to any of this. 

I realized that I wasn't watching an interview at all.  I was watching an infomercial.

Maybe Cooper does journalism most of the time, but once I did a little digging, I figured that wasn't his job here.  His job was to boost the film - the characterization of Kevorkian constructed in the film and to boost Kevorkian himself.

The reason is simple: Time-Warner Inc. owns both HBO and CNN.  Therefore, any line of questioning that would undermine the portrayal of Kevorkian as constructed in the movie - or of the man himself - would go against the financial interests of the parent company.  I have no doubt they are counting on this product to boost advertising sales and bring in some DVD revenue, not to mention some prestigious Emmys.

Fair enough, I guess.  Long live capitalism.  But maybe there should have been a statement of full disclosure about  the relationship between CNN and the movie.  CNN stage-managed the "interviews" that have served as the basis for most of the news coverage - and CNN's coverage was more like advertising. 

From where I sit, it means that CNN's financial interests have affected the coverage of Kevorkian and assisted suicide. 

And it will continue.

Because in June, HBO will be airing a documentary on Kevorkian - also no doubt sympathetic with a new round of advertising masquerading as journalism on CNN.  --Stephen Drake

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

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

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

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

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

Disability Rights Advocates Move to Intervene in Assisted Suicide Case

 

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.