Dr. Oz Show – A Disabled FEN Member Doesn’t Like How He Was Treated, Either

 I hope to have some first-hand accounts up by Monday next week from NDYers and other disability activists who went to the taping of the Dr. Oz show on assisted suicide.  While extensive edits have to be done on the show to shorten it to fit available air time, all reports so far say that it was a circus, and at least one of the disability activists we know felt like nothing more than windowdressing.  This didn’t come as a surprise considering the constantly changing stories from the producers, contradictory communications with people figuring out their travel to the show, etc.

I know some people might be thinking that the staff of the Oz show make lied and treated disabled people disrespectfully might just be our own anger showing – at a staff and show that came out with a very big pro-assisted suicide slant.

But it turns out that our friends and allies weren’t the only ones who formed a very low opinion of the staff at the Dr. Oz show.  Yesterday, Kurt Perry, who was invited to be on the show originally, left two long messages in the “comments” section of the previous blog post about the show.

Kurt Perry is a member of the Final Exit Network (FEN).  We wrote a little about Mr. Perry in this post in 2009.   This 2009 Chicago Tribune article goes into detail about him and his relationship with FEN.  He is on the opposite side of the assisted suicide debate.  So I think it’s significant that his interactions with the Dr. Oz staff left a bad taste in his mouth.  Below are the messages edited together into one post:

I agree with what you said, in regards to the Dr. Oz show. I was contacted by a few of their show producers last week on Wednesday, regarding their interest in having me there to participate in the “Assisted Suicide” episode. During the initial conversation, they asked me very personal questions about my health and my viewpoints regarding the right-to-die. The conversation made me feel like I was being investigated by them. They wanted to know very specific details about me, including when I plan to “exit”, my method for “exiting”, and my involvement in FEN. They also wanted to send a video camera to my home, asking me to film an elaborate video for their show, detailing my health condition by showing how it has physically affected me, etc. Initially, they made the episode seem like it was going to be a personal “intervention” episode, which I conveyed to them I wasn’t interested in participating in that kind of episode, that my focus in the media, is to discuss about right-to-die issues. They responded, explaining that the episode would involve discussion by a few “experts”, alongside me, my being an integral part of the episode. They continued to mention how “important” the video they wanted me to make of myself, was to the show, and repeatedly trying to get me to assure them that I’d be available for their field producer to guide me through making this video for them.

They also had their “travel team”, contact me that day, to set up travel arrangements, which they made it seem that the “travel team”, was in-house, rather than as a third-party company they outsource potential guests’ travel arrangements to. While the “travel team” did in fact contact me on Wednesday evening, to set up the travel arrangements, they never contacted me back with any sort of followup information, let alone finalized details of the travel plans. After not hearing from anyone connected with the show at all on Thursday, other than the field producer, I began to have concerns about this, as being a person who suffers from disability, I need to have travel arrangements made as soon as possible, in order to physically prepare to travel, and to have assurance prior to that, in that my travel needs are being met. On Friday, I still hadn’t heard back from the “travel team”, but I was told by the show producers I spoke with on Friday, that the “travel team” was indeed a third party company, and how it was impossible for them to accommodate my needs of knowing the travel arrangements right away, which after a long debate regarding other issues, the show producers acknowledged that they indeed could find out the travel arrangements right away. The long debate mostly pertained to how I’d be accommodated at the show, which led into a debate regarding the show itself.

By Friday, the show producers had strayed away from their previous insistence of me making the video, as I still was concerned that it could be used as a way of developing a personal story about me. The show producers were now telling me that the episode was going to center around Compassion & Choices, along with a panel of their experts, but not involve me for more than two or three minutes, and that quite possibly, the segment featuring the portion of it that I’d be in, could very well be edited out. Despite my being hurt and offended at the way the show producers had been misleading me, I still was interested in attending the show, in wanting to at least be able to speak with people backstage. However, the show producers suddenly decided to inform me, that I’d be required to give them permission to access my entire medical history through all of my medical records, etc. They claimed it was for legal reasons to prove that I indeed have neuropathy. I suggested to them, since I barely was going to get a chance to speak at all on the show, that I not even be mentioned as having a neuropathy, but simply that I’m “disabled” and that I’m a member of Final Exit Network, along with any allotted time I’d have in speaking. They denied my suggestion, hence, I didn’t end up going on the show. 

Seems to me that if a disabled guy from FEN thinks the Dr. Oz crew are jerks when it comes to disability and the NDYers (and friends) think the same thing….  They probably are jerks, at least when it comes to disabled people.  Maybe they’re different when it comes to nondisabled people.  –Stephen Drake

Media Alert – Looks Like “Dr. Oz” Is Planning Slanted Show on Assisted Suicide

There’s a major problem with shows hosted by medical professionals.  On the one hand, viewers are encouraged to believe that due to the professional credentials of the host, any discussion of a complicated topic treated on that show is going to meet some kind of high professional standard.

The truth is, though, that such shows are meant for entertainment – and they better work as entertainment or they won’t get a sufficient audience to survive.  So the trick of these shows is to convey the message that they are serious and promoting in-depth discussion of important medical, cultural and social issues.

The latest such professional to carry that off successfully is Dr. Mehmet Cengiz Öz or, as he is more commonly known, “Dr. Oz..”  According to Wikipedia, he got his media start as a health expert on Oprah.  The Wikipedia entry is a portrait of a bright and accomplished individual, with some interesting contradictions.  On the one hand, he’s the director of the Cardiovascular Institute and Complementary Medicine Program at New York-Presbyterian Hospital and has received numerous awards for his medical work.  On the other hand, as the wikipedia entry states, he was “awarded” the “2011 James Randi Educational Foundation Media Pigasus Award, which the foundation states is for promoting “nonsense”. The foundation complained about Oz’s support of energy medicine, faith healing and psychic mediums, among other controversial practices. Oz is the first person to receive a Pigasus Award two years in a row.

Having viewed a couple of segments of his syndicated show, my impression is that while I don’t doubt he’s highly professional in the operating room, it’s the showman part of his personality that presides over his show.

All of that is a really long lead-in to the news that Dr. Oz is doing a show on assisted suicide.  They will be taping tomorrow (October 198).  A number of disability activists will be in a small select audience around a panel of “experts” during the show (this is not the show’s everyday format, but is a customary format for the more controversial segments).

I expect that readers of this blog might wonder how Dr. Oz will do handling this complex topic.

So far, the indications aren’t good that this show will be handled well at all.

NDY was contacted last week by one of the show’s producers.  We were asked to participate in the select audience and suggest other disability activists who might want to participate. Their plan, we were told, was to have members of NDY, Final Exit Network, Compassion & Choices, etc. to make up the select audience and to have the panel be composed of Dr. Oz and two others who were not from these pro or con assisted suicide groups..

After several days of making arrangements for people to contact producers, we got the news on Friday last week (October 14) that the panel of experts was set and contrary to previous statements, Barbara Coombs Lee (President of Compassion & Choices) would be on the “expert panel.”

The members of the panel, will, of course, get most of the air time.  So who else is on the panel of experts?

  •  Dr. Keith Ablow – appearing as an expert opposed to assisted suicide, Ablow is another media medical expert, most often seen these days on Fox News.  His essay following Kevorkian’s death showed no real knowledge of the nonterminal status of Kevorkian’s “clients” or awareness that Kevorkian had a very broad agenda in terms of who should be eligible for his “assistance.”  It’s doubtful that Ablow has any real indepth knowledge of the practices, politics and personalities in the assisted suicide debate.
  • Dr. Ira Byock – appearing as an expert opposed to assisted suicide, Dr. Byock is currently Chair, Palliative Medicine, Dartmouth Medical School; Director of Palliative Medicine, Dartmouth-Hitchcock Medical Center; and Professor, Dartmouth Medical School, Departments of Anesthesiology and Community and Family Medicine.  Dr. Byock has been a consistent and clear voice of opposition to assisted suicide and can speak eloquently as to how quality palliative care and hospice render any “need” for assisted suicide moot.  Because he spends his professional life helping real patients and families facing impending death, he’s also not likely to have much familiarity with the intricacies of the practices and rhetoric of the assisted suicide movement in cases where they’ve moved beyond “terminal” as the important criterion for eligibility. (disclosure: I know Ira Byock personally, and I think maybe the most important thing to know about him is what I wrote in a previous post – “everything I know about Ira Byock supports the belief that his entire career has been devoted to better patient care – most of it at people’s bedsides.  If I – or someone close to me – was seriously ill, I would love for him to be in charge of the care for me or a loved one.”)
  • Montel Williams – appearing as an expert in favor of assisted suicide. While Montel Williams has done great work with programs raising funds for research into treatment and/or a cure for multiple sclerosis (which he himself has) and to link low-income people up with a program that allows them to obtain medications they need but can’t afford, there’s little evidence he brings anything into this discussion except a personal viewpoint and his celebrity status.

So that leaves Barbara Coombs Lee as the only one on the panel with comprehensive knowledge about developments, politics, etc regarding assisted suicide – simply because it’s her job to keep track of those things.  It’s also her job to spin the facts (or more than spin) to put the best face possible on both assisted suicide and her organization.

That’s a textbook example of how to build the appearance of balance while stacking the deck.

Not that any of this matters to Dr. Oz or the show itself.  You can see for yourself how little effort and thought they’ve given to what they call a “survey” on their site which solicits people’s opinions on the “right to die.”  The trouble is, the whole thing was put together in a way that totally conflates refusal of treatment with assisted suicide.  We sent in a written request for the survey to be edited to use clear terminology, with a brief explanation, which the producer assured us was forwarded to the person in charge of the online surveys. I suspect that Dr. Oz, if confronted with the sloppiness, would throw some staffperson under the bus.  But it’s all under his name and I’m sure he’s made it clear just how much detail they need to bother with – which in this case is not much.

The link to the “survey” is here.  Please feel free to fill it out and leave comments.  Maybe they’ll even read them.

The final punchline in all of this is that the panel/audience taping is expected to be about 90 minutes long.  That means barely half (approx. 44 minutes) of the taping ends up airing.  There is no guarantee that anything from any NDYer or disability activist will get aired at all.  (I’m guessing they’ll be generous with air time to Ablow and Williams in hopes of a future media quid pro quo.)

If what you’ve read here concerns you in terms of how the (I’m struggling to avoid wizard of oz puns) show will handle this, please feel free to to contact the show via this online form.  –Stephen Drake

Can people on Medicaid sue states to stop budget cuts?

Monday, October 3, was opening day for the U.S. Supreme Court. The Court heard oral arguments in three consolidated cases: Douglas v. Independent Living Center of Southern California, Douglas v. California Pharmacists Assn. and Douglas v. Santa Rosa Memorial Hospital. In these cases, Medicaid recipients and providers are suing the state of California to stop 10 percent across-the-board cuts in payment rates that were instituted to address state budget deficits.

As the September 21 My Medicaid Matters Rally proved, with over 90 national co-sponsoring organizations, concern about threats to Medicaid is mounting. It’s good to see an independent living center helping to lead the charge in challenging Medicaid cuts of the magnitude seen in California. It’s also good to see people with readily apparent disabilities out marching against such cuts, as seen in a photo the Los Angeles Times carried about the case. As one of the providers’ attorneys argued, “My people have a life-or-death problem.” (I guess he must have been referring to provider concerns on behalf of Medicaid consumers.)

If Medicaid recipients and providers are not allowed to sue states to enforce Medicaid requirements, then enforcement might depend solely on the federal government. The New York Times described some of the key issues in the case:

The justices were not focused on the ultimate question of whether state officials were entitled to address the budget crisis there by lowering payments to medical providers. Rather, they considered the threshold question of whether the providers and Medicaid recipients were entitled to sue over the move.


There is no question that federal authorities can enforce the law and that states that fail to comply with their obligations [under federal Medicaid law] face the loss of federal money. Almost as soon as the argument was under way, though, Justice Ruth Bader Ginsburg said such enforcement standing alone was problematic.


That’s a very drastic remedy that’s going to hurt the people that Medicaid was meant to benefit,” she said of the potential loss of federal funds.


Justice Anthony M. Kennedy suggested that private lawsuits may serve a valuable role in supplementing federal enforcement, referring to a friend-of-the-court brief filed by former officials of the Department of Health and Human Services that said, “Fewer than 500 federal employees are today tasked with supervising 56 different Medicaid programs administering nearly $400 billion in federal funds every year.”


It followed, the former officials said, that exclusive enforcement by the federal agency was “logistically, practically, legally and politically unfeasible.”


For links to 11 major news outlets’ coverage of the Supreme Court arguments, the Kaiser Health News is a useful source. For legal nerds (like me) who want to look at the various briefs filed in the case, several are posted at http://www.scotusblog.com/case-files/cases/maxwell-jolly-v-independent-living-center-of-southern-california/ .

Democratic lawmakers are divided on the case. As reported in The Hill:

The Obama administration’s Justice Department argued in California’s favor, saying the lawsuits should be barred. But several Democratic leaders in Congress — including House Minority Leader Nancy Pelosi (Calif.) — filed a brief in the providers’ favor. Individuals should be able to sue as a way to guarantee that they get the full benefit of the Medicaid program, they said.


Over 30 states have filed a brief opposing the private right to sue states. To find out whether your state is one of them, you can check the states listed in their brief.

About a month ago, nearly 400 disability advocates emailed federal administration officials urging them to withdraw their friend-of-the-court brief opposing the right to sue. The letter expressed deep concerns about the potential impact of a bad decision in the case:

Those of us who have spent decades advocating for states to implement our civil right to receive Medicaid long term care services in “the most integrated setting” are painfully aware that the Department of Health and Human Services is far from effective in protecting our Medicaid rights. …


The arguments, while focusing on the particular section of law involved, could spill over and affect private enforcement of other Medicaid Act provisions. These arguments could affect the enforcement of Olmstead at the state level. …

State budget cuts to Medicaid threaten the health and sometimes the very lives of Medicaid beneficiaries. Access to the courts may be the best way, and often the only way, to protect our lives and defend our freedom. Medicaid consumers need access to federal courts if the voices of the people whose health and lives are most directly impacted by Medicaid are to be heard as loudly as the voices of the states that want the “flexibility” to ignore our rights.



In fact, as if to drive the point home, there’s news reported on the plaintiff ILC’s website of another round of threatened Medicaid cuts in California that heavily impact home and community based long term care services, including an 8.6% cut to personal care hours under the In-Home Support Services program (IHSS).

The Supreme Court decision is expected to take several months to be issued. Before then, it’s likely that many states will enact Medicaid budgets that make Douglas v. Independent Living Center of Southern California one of the most important disability impact cases in a number of years. – Diane Coleman

India – Newest Case of Person Demanding Treatment/Money or Euthanasia (“Your Money or My Life”)

Lately it seems like I’ve been drawing quite a bit on material from the Thaddeus Pope‘s Medical Futility Blog.

Mostly it’s because Pope is really good at digging out stories that fly under the radar of most of us. More than occasionally, he’ll write something that is too tempting to ignore.
That’s true with his latest blog entry, regarding the newest request by a citizen of India to be euthanized if they can’t get aid or treatment for the condition or disability they have.

Pope’s blog post can be found here:

Medical Futility Blog: Alka Tiwari: Give me a bone marrow transplant or give me death

From the blog:

On September 30th, Alka Tiwari filed a complaint in the courts of the Indian state Uttar Pradesh asking the government either (1) to provide funds for her treatment or (2) to allow physicians to administer a “poisonous injection” to get rid of the unbearable pain.

This is certainly not the profile of the typical patient utilizing the ODDA or WDDA. But this is exactly the sort of case that opponents of PAD legalization in other states suggest would be become increasingly common.

As Pope asserts, this is not the profile of a “typical” patient using the assisted suicide laws in Oregon and Washington states to end their lives.

This case is, however, very typical of the majority of euthanasia/”mercy killing” appeals that have made news in India over the past few years. I wrote about it back in 2008. Responding to the recommendations of a legal commission in India to legalize euthanasia on the grounds of “solace compassion, justice and humanism.” Here’s what I wrote at the time:

Sounds nice, doesn’t it?

Trouble is, it ignores the reality of the rash of highly-publicized pleas for “mercy killings” put forth by families and individuals in India over the past few years. This is a fairly representative example:

KOLKATA: An ailing 40-year-old woman and her husband have written to the District Magistrate of North 24-Parganas seeking permission to undergo euthanasia, official sources said.
Swapna Das, suffering from a kidney disorder, and her husband Biswanath, a soccer coach at a local club, got married five years ago. The couple stated that they have decided to end their lives because they can not meet the cost of treating Das’ illness.

“We need Rs 6,000 for a dialysis and another Rs 3.5 lakh for a replacement,” Das said. Biswanath said they were currently dependent on neighbours’ help for her survival.

This couple is typical of the “mercy killing” pleas that have emerged in India. Central to virtually every story is the despair over the inability to get treatment, support or in some cases even adequate food and shelter.

But the Kerala Law Reforms Commission neatly ignored the economic and social factors that have been central to the plight of those who have sued for permission to kill themselves, a relative or be killed by a third party.

In almost every publicized case, the plea for euthanasia was lost, but the publicity forced the government to free up some resources for the suffering family or individual.

So, as Pope notes, that isn’t what we see in the US in terms of requests for assisted suicide right now.  But considering that there is a powerful political movement to shift in the US to make availability of health care dependent on one’s financial resources – to shift that availability even more to an income-based system than it is now.

If that happens, expect future groundbreaking requests for euthanasia to look a lot more like the ones that dominate the debate in India.  –Stephen Drake

Addendum – There’s really no name for these type of cases.  The individuals making these demands of the govt in India are generally desperate – desperate for medical and financial help most often.  They come across as a cross between robbery and hostage situations.  Although, instead of saying “Your money or your life,”  the person is handing the gun to the govt and saying “Your money or my life.”  And “your money or my life” seems as good a term as any to label these cases.

RESEARCH – Study finds that antisocial personality traits linked to embracing utilitarian ethics – (like those promoted by Peter Singer)

I suspect most readers of this blog are familiar with Peter Singer – mostly through his views on infanticide and euthanasia.  Many others are already familiar with his book Animal Liberation – a book that served as the first inspiration for many who are now in the animal rights movement.

Singer’s worldview – and the policies he promotes to form a better one – fall within the framework of utilitarianism, which is defined briefly here:

Utilitarianism is an ethical theory holding that the proper course of action is the one that maximizes the overall “good” of the greatest number of individuals. It is thus a form of consequentialism, meaning that the moral worth of an action is determined by its resulting outcome. The most influential contributors to this theory are considered to be Jeremy Bentham and John Stuart Mill.

Utilitarianism was described by Bentham as “the greatest happiness or greatest felicity principle”.

Singer is probably the best popularly-known advocate of the utilitarian ethics.  His advocacy of infanticide and euthanasia – both voluntary and nonvoluntary – are a result of his promotion of utilitarianism as the most rational approach to ethical choices.  In the case of nonvoluntary euthanasia, persons with severe cognitive disabilities can be killed humanely and increase the greater good – especially if the organs of those people could be harvested and transplanted into people with more ability to appreciate the extra amount of life.

And, you know, when Singer and others lay it out, it really sounds logical – bloodlessly and brutally without any kind of empathy – but logical.  It’s a point of view in which every person who makes a choice about killing someone else for the greater good is operating from the purest of motives.  That’s always sounded quite a bit removed from the world I inhabit, in which people make choices – including life-changing ones – for reasons that range from heroic to selfish to downright criminal.

It turns out that a couple of researchers are interested in how utilitarianism works out in the real world as well.  Or rather, they’re interested in finding out just who is willing to make utilitarian decisions.  From a press release that was issued about the study last week:

Antisocial personality traits predict utilitarian responses to moral dilemmas

Study questions the widely-used methods by which lay moral judgments are evaluated; results found individuals who are least prone to moral errors also possess a set of prototypically immoral psychological characteristics

NEW YORK – September 30, 2011 – A study conducted by Daniel Bartels, Columbia Business School, Marketing, and David Pizarro, Cornell University, Psychology found that people who endorse actions consistent with an ethic of utilitarianism—the view that what is the morally right thing to do is whatever produces the best overall consequences—tend to possess psychopathic and Machiavellian personality traits. (Emphasis added.)

In the study, Bartels and Pizarro gave participants a set of moral dilemmas widely used by behavioral scientists who study morality, like the following: “A runaway trolley is about to run over and kill five people, and you are standing on a footbridge next to a large stranger; your body is too light to stop the train, but if you push the stranger onto the tracks, killing him, you will save the five people. Would you push the man?” Participants also completed a set of three personality scales: one for assessing psychopathic traits in a non-clinical sample, one that assessed Machiavellian traits, and one that assessed whether participants believed that life was meaningful. Bartels and Pizarro found a strong link between utilitarian responses to these dilemmas (e.g., approving the killing of an innocent person to save the others) and personality styles that were psychopathic, Machiavellian or tended to view life as meaningless.

These results (which recently appeared in the journal Cognition) raise questions for psychological theories of moral judgment that equate utilitarian responses with optimal morality, and treat non-utilitarian responses as moral “mistakes”. The issue, for these theories, is that these results would lead to the counterintuitive conclusion that those who are “optimal” moral decision makers (i.e., who are likely to favor utilitarian solutions) are also those who possess a set of traits that many would consider prototypically immoral (e.g., the emotional callousness and manipulative nature of psychopathy and Machiavellianism).

While some might be tempted to conclude that these findings undermine utilitarianism as an ethical theory, Prof. Bartels explained that he and his co-author have a different interpretation: “Although the study does not resolve the ethical debate, it points to a flaw in the widely-adopted use of sacrificial dilemmas to identify optimal moral judgment. These methods fail to distinguish between people who endorse utilitarian moral choices because of underlying emotional deficits (like those captured by our measures of psychopathy and Machiavellianism) and those who endorse them out of genuine concern for the welfare of others.” In short, if scientists’ methods cannot identify a difference between the morality of a utilitarian philosopher who sacrifices her own interest for the sake of others, and a manipulative con artist who cares little about the feelings and welfare of anyone but himself, then perhaps better methods are needed. (Emphasis added.)

The article itself, which can be read here in pdf format,  is only 8 pages long and worth the read.  This is a paragraph describing some individuals within the 10% of the population who are likely to embrace utilitarianism:

What do those10% of people who are comfortable with the utilitarian solution to the footbridge dilemma look like? Might these utilitarians have other psychological characteristics in common? Recently, consistent with the view that rational individuals are more likely to endorse utilitarianism (e.g.,Greene et al., 2001), a variety of researchers have shown that individuals with higher working memory capacity and those who are more deliberative thinkers are, indeed,more likely to approve of utilitarian solutions (Bartels,2008; Feltz & Cokely, 2008; Moore, Clark, & Kane, 2008).  In fact, one well-defined group of utilitarians likely shares these characteristics as well—the subset of philosophers and behavioral scientists who have concluded that utilitarianism is the proper normative ethical theory.

Unstated here seems to be an assumption that there isn’t any overlap between that “subset of philosophers and behavioral scientists” and individuals who score high in terms of psychopathy and Machiavellianism.  I think that’s an untested assumption and therefore not one that should be made.  Seriously.

Maybe the best summary comes from Joshua Rothman at the Boston Globe in his column “The Practical Psychopath“:

Psychologists, they argue, should stop assuming that the utilitarian moral choice is the right one. Each moral judgment is part of a general outlook. It might be important to have a utilitarian on board your lifeboat–he “may be able to act for the greater good in ways that prove difficult” for most people. But it’s important, too, that most people have moral outlooks attuned to everyday life. It’s lucky that most people aren’t utilitarians.

And yes – to people out there with strong feelings on this – I’m the first one to admit that psychology isn’t a hard science.  But bioethics isn’t a science at all – and the haphazard approach it takes to empirical matters (which might be due to the field’s roots in philosophy) often defies the old adage “the plural of anecdote is not data.”

But this study is in some ways good news for Peter Singer.  If he ever wants to go off to some island somewhere and establish a community based on utilitarian ethics, the authors of this study have identified just the types of people who are already willing to use utilitarian ethics.  They might even let him use their test that screens for psychopathic and Machiavellian personality traits.  That would be what I’d call a very brave new world.  –Stephen Drake

h/t to John B Kelly for pointing this study out to me.