Cathy Ludlum of Second Thoughts CT Responds to IOM Committee on Approaching Death

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[Editor’s Note:  Cathy Ludlum submitted this response to the IOM Committee’s online survey on Oct. 31, before the Nov. 1 deadline, so this is a belated sharing of her excellent input.  Let’s hope they pay attention as they prepare their final report that is due in 2014.]

Question: If you are an individual living with a serious progressive illness or condition, or a loved one of an individual please describe your experiences receiving care. . . .

I am an individual in my 50s living with a serious and progressive condition called spinal muscular atrophy (SMA).  Although at this moment I am not “likely approaching death,” my survival has been in doubt at times, and without the skilled support of the people around me (whom I have trained in how to meet my needs), I would not live for long.

People with disabilities like myself have a great deal of knowledge about adapting to change and quality of life… knowledge that the medical community and others with serious and/or terminal conditions might benefit from.  Thank you for inviting us to speak to you.

I had near-fatal pneumonias at ages 12 and 14.  The second one, especially, taught me several important lessons:

1.  Whenever doctors do not know what else to do, they start talking about a tracheotomy.  Sometimes this is appropriate, but in my case alternative approaches have been effective.  One was suggested by a medical resident, and another was brought forward by me.  I have never had a tracheotomy, and my breathing is good considering that I have SMA.  I think this goes to show that practitioners need to look beyond the obvious and to use less invasive techniques whenever possible.

2.  I avoided getting a tracheotomy at 14 (and most likely dying anyway) because a young resident realized that deep suctioning every two hours was irritating my lungs and making my pneumonia worse.  He ordered that suctioning be stopped and a direct pressure technique called assisted coughing be used instead.  I immediately started to improve.  I have used assisted coughing ever since.  I believe it is one reason why I have lived so long when many of my SMA peers died in their teens or twenties.

Since the age of 14, every time I have been in the hospital, I have had to make sure I am not deep suctioned and that I have access to assisted coughing.  When medical personnel listen to my understanding of my own body and we work together as a team, things go well.  When they act as if they know everything and I know nothing, things go badly.

Because of my disability, I am small in stature and have only the limited use of three fingers and everything above the neck (except that my swallow is poor).  For the last 16 years I have received all of my nutrition through a feeding tube, and for the last 13 years I have used a bipap to support my breathing when I am asleep.

Based my appearance, functional status, and use of life-sustaining technology, people tend to assume that my life is hopeless and unbearable; when I tell them I have my own home, a college degree, meaningful work, and typical social relationships, and that I hire and train all of my support staff, they don’t always believe me.  What’s worse, assisted coughing is not a universally accepted practice, and if I can’t get it when I need it, I will die

I know now that I must have an advocate with me at all times when I am hospitalized, both to verify who I really am (as opposed to what I look like), and to secretly do assisted coughing with me.

As far as talking with my loved ones about my health care decisions, I have made it clear that I will be fighting until the end.  I have said so through my advance directive, and in conversations with the people I appointed to be my health care representatives.  I have already survived many battles that looked unwinnable.  In the community of people with severe physical disabilities, death shows up frequently and living a long time is the exception to the rule.  A good attitude certainly helps.  Part of that is feeling that I still contribute something of value to the people around me and to the society.

While I do not like change, I have lived through many transitions as my physical abilities have diminished.  Strangely, the weaker my body becomes, the stronger I grow emotionally, and the more confident I feel about facing the next challenge.  I am not afraid of using more technology should it become necessary.  Most importantly, I will continue to nurture my relationships.  Whether you have a disability or not, interdependence is the key to a secure and fulfilling life.

As for my spiritual needs, I feel blessed to have been given a unique perspective on life and the ability to use my journey to benefit others.  One day the journey will end, but not because I gave up, and not because the medical profession gave up on me.  I have a wonderful life, and I expect to have a good death.

Question: What do you see as the biggest barriers to care (for individuals with serious progressive illness or condition) that is appropriate and easy to access?

1.  Lack of training about disability culture and lifestyle for medical students, student nurses, and others preparing to join the healthcare field, as well as experienced practitioners.  Stereotypes that people with severe and progressive disabilities are suffering and/or on the verge of death make it more likely that practitioners will suggest comfort care when aggressive treatment would be offered to a nondisabled patient in a similar situation.

2.  Changes in the healthcare system in recent years have made it increasingly difficult for medical practitioners to get to know their patients.  For people with severe and progressive conditions, this is truly dangerous.  Appearances are are often deceiving, and medical issues may be complex; a 10-minute visit often accomplishes little.

3.  The movements to promote physician assisted suicide and Physicians Orders for Life-Sustaining Treatment (POLST) carry specific dangers for people with severe and progressive disabilities.  Both movements feed off of the fears held by physicians and the public about losing independence and control over one’s life.  Making it easier for people to die distracts us from the very real problems of poverty, isolation, shame about our bodies, feelings of being a burden, and the lack of meaning many struggle with in our modern age.

4.  Expressions such as “artificial nutrition and hydration” cloud people’s decisionmaking process.  I have been using a feeding tube for many years, and I promise you there is nothing artificial about what I eat.  The calories and the nutrients are there, and because of this I am able to continue living my very real life.  It would be more accurate to say “tube-administered nutrition and hydration,” and I encourage you to start doing so.  We do not call diabetic medicine “artificial insulin,” and we do not call hearing aids “artificial hearing.”  Biases in our language cause unnecessary fear and can cost people their lives.

5.  Alternative treatments such as assisted coughing need to be explored, endorsed, and provided in institutional settings such as hospitals and nursing facilities.  Just as massage, Reiki, and chiropractic treatments are gaining acceptance in the world of Western medicine, so should other treatments that have lifesaving results, promote healing, or alleviate symptoms.

Question: What three changes in the U.S. health care system could improve care of individuals with serious progressive illness?

1.  Require mandatory training about life and culture of disability for all who are preparing to join the healthcare field, as well as those who are already practicing.  Understanding how we live will reduce the perception that we are just hanging around waiting to die.  Some efforts have been made to provide this type of training, but these have been small and limited.  Everyone in the healthcare system needs to hear this message.

2.  Return the human touch to the field of medicine.  Make it possible for practitioners to spend a reasonable amount of time getting to know their patients during office visits and dealing with their concerns through the years.  A doctor who has taken the time to listen to an individual, and become familiar with her his or her patterns will be more effective in treating problems than a hospitalist who comes on the scene during a crisis.

3.  Renounce physician assisted suicide as bad medicine, and take a second look at Physicians Orders for Life-Sustaining Treatment (POLST).  Regarding physician assisted suicide, people already have access to advance directives, the right to refuse treatment or have it withdrawn, and quality palliative care.  Some patients may still choose to end their lives by their own hand, but let’s not have doctors endorsing the practice or participating in it.  POLST attempts to solve the problem of overtreatment, but this is premature when so many in the disability community and other devalued groups are are typically undertreated.  Slow down the process and listen to the perspectives of people who already use life-sustaining medical technology.  Create a tool that ensures that people’s decisions about treatment are made using full and unbiased information, free from coercion, and stable over time.  Otherwise the “choice” is meaningless and people will lose their lives against their will. – Cathy Ludlum

Disability Rights Victory in Organ Procurement Protocols – Persistence Pays Off

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This week, November 11, the Board of Directors of the Organ Procurement and Transplantation Network (OPTN) adopted a policy that removed two major threats to people with disabilities posed by previous proposals.  This is the key paragraph:

2.8  Requirements for Controlled Donation after Circulatory Death (DCD) Protocols

Introduction:  Donation after Circulatory Death (DCD) describes the organ recovery process that may occur following death by irreversible cessation of circulatory and respiratory functions. Potential DCD donors are limited to patients who have died, or whose death is imminent, and whose medical treatment no longer offers a medical benefit to the patient as determined by the patient, the patient’s authorized surrogate, or the patient’s advance directive if applicable, in consultation with the healthcare team. Any planned withdrawal of life sustaining medical treatment/support will be carried out in accordance with hospital policy.  The timing of a potential DCD donor evaluation and donation discussion shall be coordinated with the OPO and the patient’s healthcare team, in accordance with hospital policy.  Prior to the OPO [Organ Procurement Organization] initiating any discussion with the legal next-of-kin about organ donation for a potential DCD donor, the OPO must confirm that the legal next-of-kin has elected to withdraw life sustaining medical treatment.  Death is declared by a healthcare team member in accordance with hospital policy and applicable state and local statues or regulation. A DCD donor may also be called a non-heartbeating, asystolic, or donation after cardiac death donor.  (Emphasis added. Note also, in a later section, “legal next-of-kin” is defined to include the patient, which is relevant if the individual is conscious and using a ventilator.)

As we noted in a press release issued June 30, 2013:

“A year ago, over 200 disability advocates sent messages to the Organ Procurement and Transplantation Network (OPTN), expressing concern over proposed organ procurement protocols. . . . These proposals would have allowed organ donation to be discussed with individuals who depend on life sustaining treatment and their families before a decision to withdraw life-sustaining treatment has been made. This could affect people with upper spinal cord injuries, neuromuscular disabilities and severe brain injuries.”

We know that OPTN noticed the over 200 advocacy message letters because they mentioned them in a Briefing Paper issued this year titled “Proposal to Update and Clarify Language in the DCD Model Elements.” (The June 30 press release links to the Briefing Paper that reviews the comments received.)

Not Dead Yet filed public comments regarding both the proposed protocols and related changes to OPTN bylaws six times in the last two years.  You can find them all under NDY Public Policy activities.  We pointed to longstanding ethical protections against potential pressures being placed on ill people to die and donate their organs.

NPR’s Rob Stein has also covered the issue.  And this summer, over 120 disability advocates responded to an NDY Action Alert and sent messages to U.S. Health and Human Services Secretary Sebelius objecting to OPTN’s plan to abdicate its responsibility to set national standards and instead defer to individual hospital autonomy in setting local policies.  The OPTN Board tabled the issue one more time, but did not correct the problems and the committee members apparently continued to haggle.

In our most recent comment letter filed on October 17, 2013, we also expressed concern about a more recently proposed provision:

Potential DCD donors are limited to patients whose medical treatment no longer offers a medical benefit as determined by the patient’s primary healthcare provider and in consideration of any available advanced directive executed by the patient. 

In response, NDY said:

This provision is objectionable and inconsistent with principles of patient autonomy because it allows the primary healthcare provider to determine whether medical treatment offers a benefit, not the patient or healthcare proxy, and only “in consideration” of an advance directive.  In the majority of states, which have “futile care” statutes allowing doctors to overrule patients who desire life-sustaining treatment, a futile care decision by a doctor would make the patient a potential DCD donor under the proposed policy.  We sincerely hope that this is not OPTN’s intent, but is an unintended consequence that requires further revisions to the language.

The National Catholic Partnership on Disability and National Catholic Bioethics Center also consistently filed public comments in response to every OPTN invitation pertaining to the DCD policies.  In the last round, they pushed for and secured the language, “Potential DCD donors are limited to patients who have died, or whose death is imminent” in the final requirements.

Frankly, I shook my head many times, doubting that we were having any impact except possibly scaring the decision-makers into perpetual inaction.  And, like many of you, I know people who need organ transplants, and sadly recently lost my younger brother for the lack of one, so I want to be able to trust the organ transplant system.

I don’t yet trust it, but I am genuinely heartened by the victory this week and the invitation to continue a dialogue.  I hope that many of you will participate.  You can sign up for public comment notifications by going here. – Diane Coleman

 

John Kelly’s Response to IOM Online Survey or “We Love Our Tubes!”

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[Editor’s Note:  In my full written comments on POLST submitted to the IOM Committee in July, I mentioned, “One advocate I know suggested that we need a disability educational campaign called ‘We Love Our Tubes’ or ‘Tube Pride.’”  That advocate was John Kelly.  Here, he tells more of his story to the Committee, responding to Question 1 of the online survey that closed last Friday. John’s response is also available on the Public Policy section of our website here. – Diane]

I am a 55-year-old white man who is a quadriplegic based on a spinal cord injury in 1984.  The level of my injury was at the fourth cervical level, resulting in near total paralysis below my shoulders.  My breathing ability survived the injury, and after diaphragmatic strengthening, I have breathed without assistance for the last 30 years.  I drive a powered wheelchair with a sip/puff tube, live in the community with assistants I hire and manage myself, and work part-time as a disability rights advocate.  I am a writer and community leader in the disability community.

First, I never heard the word “death” uttered around me in the immediate time period after my injury.  No one mentioned the possibility of donating my organs, no one said the words “it might be for the best,” no one queried me regarding my “choice” to live or die.  The nurses at the rehabilitation hospital were gung ho on getting us all up into our wheelchairs and maximizing our abilities.  We spinal cord injured people learned about “independent living” and how the main impediments to us doing what we wanted to do were architectural and prejudicial, not biological.  I’m afraid that if I were injured today, I would be carefully consulted as to whether I really wanted to stay alive or not.

Based on my high level of spinal cord injury, I am quite susceptible to autonomic dysreflexia, a life-threatening condition in which blood pressure skyrockets to dangerous levels because of a pain or irritation below the lesion site.  I also have a suprapubic tube inserted directly into my bladder.

I have had a wide range of experiences with medical professionals, but they always are a cause of high anxiety.  I can simply not trust that a healthcare professional will listen to me, when I tell them what my body needs.  The level of ignorance is so high, unfortunately, and the level of arrogance equally high, that I have been frequently endangered or simply ignored in a hospital setting.

When I had only had my suprapubic tube for a short time, the tube blocked so I went to the emergency room.  The two young Harvard-trained doctors must have asked me four times about what kind of surgically-altered bladder I had.  I was reduced to repeating, over and over, “I have a normal human bladder.”  They were so ignorant about how to insert a new catheter that it fell out in the shower the next morning.  Now one of my personal care assistance changes it without problem.

A few years ago I was outside on a hot summer day.  I got overheated and lost so much strength that I was simply begging people for cold water.  A security guard called 911, and while we waited, I used all my mental energy to form my story.  I laid it out as carefully as I could, and when the EMT arrived, I said “Sir, I have a spinal cord injury and am overheated.  I just need cold water.”  The EMTs were outraged that I was telling them what I needed, rebuked me, would not give me water, and would only transport me to the hospital.

At the hospital, I told everyone who came over that I was overheated and desperately needed cold water.  Over and over I was either ignored or rebuked.  I still could not get my ice water.  They insisted on putting a hospital gown on me as I felt like I was about to explode.  A nurse reprimanded me as she started giving me an IV of saline, with a diagnosis of dehydration.  The fluid only pushed up my blood pressure, caused by my being on my back.  (I take midodrine).

I talk with other severely disabled people, we all experience stark terror in a hospital.  So often, staff think that our lives are pathetic or pitiful.  Some nurses ignore our call requests.  We swap stories of the horrors, but we all agree that we must be as sweet and compliant as humanly possible in order to hope for decent treatment.

My medical provider is an innovator in home-based care for adults with severe disabilities. The practice has been in the business 30 years and is now expanding its services to include all disabled adults with eligibility for both Medicaid and Medicare.  This is a Onecare demonstration project under the ACA. The medical group has provided me excellent care.

Three months ago, my nurse brought me the Massachusetts MOLST form, with its preferences for certain treatments in extremis.  She had been told that they were to complete these forms with every disabled person she follows.  I found the form oppressive, and have never in my life seen a questionnaire in which “No” was on the left and “Yes” was on the right.  I thought these forms were for people near death.

I asked her what she had been instructed about the form, and whether there were any materials for me.  A few minutes earlier, she had given me the notification form for my annual flu shot.  But nothing to accompany the MOLST form.  She didn’t receive any training, either. And while I was confident filling out the form, others may not be.  I believe people should receive notice that they will be hit with this kind of form, and be able to have another person present when the discussion happens.

I know people in my community who have been badgered about having a DNR.  We hear stories in the media about disabled children having DNRs slapped on them.  We have friends who use ventilators, and don’t think that they are extreme interventions.  Two of my best friends – a writer and a playwright – used ventilators for years.

The characterization of a feeding tube as “artificial” is insulting.  I am very happy with my suprapubic tube, a simple rubber catheter that takes care of my urological needs very well.  My writer friend also got a feeding tube and she loved it for keeping her alive.  The food that went into it was cooked with just as much love as anything someone else would put in their mouth.

One of my friends works for a man with a head injury.  When the nurse approached him with the MOLST form, he became extremely agitated, as this kind of harassment has gone on for years.  He says over and over that he wants to stay alive, and gets angry when questioned on that decision.

Right now I am working with a group to negotiate improvements at Boston Medical Center, the city hospital of Boston.  Here, like all across the country, disabled people can’t access diagnostic equipment, can’t get onto exam tables, can’t get weighed, can’t even be equipped with a device to call the nurse.  We are terrified of hospitals, and it should be the highest priority of the Institute of Medicine to change that fact.

John B. Kelly

Meet our New Regional Director, John Kelly

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John Kelly
John Kelly

[Editor’s Note:  John Kelly officially began working for NDY as a Regional Director on September 23.  We issued a press announcement on that occasion, but here’s a chance to get to know John better.]

Hello everyone, I want to introduce myself to the far-flung faithful readers of this blog and all the supporters of Not Dead Yet and our mission to halt the deadly discrimination of legalized assisted suicide and euthanasia. My role as Regional Director will be to assist Diane and represent Not Dead Yet throughout the region, such as recently in New Jersey where we are strategizing against an assisted suicide bill.

Getting to work for Not Dead Yet and Diane Coleman is a dream come true. I had the pleasure of working closely with Diane during the campaign in Massachusetts last year against Question 2, the “Death with Dignity” referendum. It was Diane and Stephen Drake’s years of work that laid the foundation for the efforts of our Massachusetts group, Second Thoughts. They boosted us early in our campaign with a Wall Street Journal op-ed with “Second Thoughts” in the title. Not Dead Yet supported us with finances and advice, as we tailored a winning message for the progressive voters of Massachusetts. Our victory in November 2012 was unexpected and especially sweet, given that legalization proponents were already counting their legalization chickens in other states.

I’ve been a disabled person since the age of 25, when I became a quadriplegic from a spinal cord injury. I am a “high quad,” or as some would say, “paralyzed from the neck down,” the dramatic way of saying the accurate “paralyzed below the shoulders.” I have the same amount of physical function as the suicidal characters in the movies “Act of Love,” “Whose Life Is It Anyway?” and the Spanish movie “The Sea Inside.” (The only time I get to see someone like me on the screen is when they want to die, or raise money for the cure.)

I got exposed to Not Dead Yet issues through the writings of the great disability scholar Paul Longmore, who wrote about Elizabeth Bouvia and Larry McAfee, so-called “right to die” cases in the 1980s to early 1990s. I saw myself in those stories, how the courts and the media took for granted that anyone with severe disabilities would want to die, deeming rational the desperate responses to impossibly oppressive circumstances (Bouvia had a miscarriage and marriage break-up, and was thrown out of school and denied services, while McAfee was warehoused in out-of-state nursing homes). Then Not Dead Yet articulated my rage at this prevailing willingness to have us die, at the same time we have to fight for the tiniest service, the most basic accommodation. And like many disabled people, I feel personally vulnerable to the common belief of “better dead than disabled.” (My father thought it would’ve been better if I had simply died in my accident.)

My first Not Dead Yet action was in Cambridge, Massachusetts, to protest an institute affiliated with Harvard giving Jack Kevorkian a “humanitarian” award. I was hooked, because Not Dead Yet understands the first rule of protesting, which is to have fun. Elaine Kolb came up from Connecticut and we sang songs and tried to infiltrate the award banquet. Then I joined the national action in my hometown of Boston in 2000, when the World Federation of Right to Die Societies held a convention. We protested all day in the rain (our classic chant: “We’re here, We’re wet, We’re Not Dead Yet!”). The Boston Globe published my piece on our clash with the death promoters. http://www.ragged-edge-mag.com/extra/ndykellyoped.htm

In the 1990s, I went to graduate school at Brandeis in order to study with one of the founders of Disability Studies, Irving Zola. I loved studying and learning, but realized that I preferred a life of activism to academia. My research led to a couple of articles in the Ragged Edge, on how fear of incontinence helps fuel the assisted suicide movement,  and an exploration of “inspiration.”

The op-ed’s we submitted during the 2012 Massachusetts campaign were group-written, even though they sometimes bore my name. Here is our op-ed that appeared in the Providence Journal just before the election.: http://blogs.providencejournal.com/ri-talks/this-new-england/2012/10/john-b-kelly-why-to-vote-no-on-mass-question-2.html

I am active in Boston on disability issues, especially streetscape accessibility and the horrors of brick sidewalks. I’ve always known, however, that the most important battle going on is the one being fought by Not Dead Yet. I would find myself thinking, as I was measuring whether a change of level was greater than ¼”, that inches and degrees are nothing compared to the right to be secure in our own continued existence.

I look forward to working with and learning from Diane and Stephen and all the other activists and thinkers among us. My experience is mostly fighting the legalization of assisted suicide, so I have some catching up to do on other issues facing our community, like organ donation and POLST. I think our continued success lies in working together across disability with all our present and potential allies, such as the Autistic Self Advocacy Network (ASAN), the mental health recovery community, and the developmental disability community.

And I have a cat, Boris. 🙂

Arizona Daily Star: Derek Humphry and Columnist Push “New Frontier” on Assisted Suicide

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I have to preface this article with an admission.  I had a lot to do with how this article turned out.  Columnist Tim Steller called Diane Coleman Friday (Nov 1) afternoon wanting to interview her about an upcoming visit to the area by Derek Humphry, who would apparently be talking about assisted suicide for people with “mental illness.”  Humphry is, of course, one of the founders of the Hemlock Society.  He also runs his organization ERGO – which sells materials related to assisted suicide and euthanasia.  Most importantly, as far as this story is concerned, Humphry is the Chair of the Final Exit Network Advisory Board.  The Final Exit Network is a group of underground assisted suicide vigilantes who “help” people commit suicide with plastic bags and helium and then clean up the scene to make it look like the deceased individual died a natural death.

All of the above is relevant and important to any story about Derek Humphry discussing assisted suicide for people with mental health issues in Arizona.  See, what was probably the most notorious case involving the Final Exit Network was in Arizona – and it involved a woman named Jana Van Voorhis.  Van Voorhis had no serious physical health issues, but had a long history of emotional troubles.

When I talked with Steller, he was vaguely aware of the Van Voorhis case, but remembered none of the particulars.  He wasn’t familiar with the Final Exit Network and was unaware of Humphry’s role in the group.

It went like this: We discussed an email that Humphry sent to the area promoting two talks he’d be giving in which he spends a lot of space talking about assisted suicide for people with mental health issues.  I said that Arizona was a curious choice to push that particular envelope.  Steller didn’t have any idea it would be significant.  That’s when I explained the history of the Jana Van Voorhis case, the Final Exit Network, and even some less-than-compassionate comments by Humphry on the subject that appeared in a documentary.  Accordingly, I sent him links to articles and videos about the Final Exit Network, Humphry, Vanvoorhis, and some other material – much of which is used in the article.  I also had my own reactions, which don’t appear in the article, but which I’ll add after discussing the article linked and excerpted below, along with some other thoughts.  Steller’s column was published in the November 3rd edition of the Arizona Daily Star.

From the column “Right-to-die advocate pushes new frontier”:

Announcing his visit to Tucson for two Nov. 23 presentations, Derek Humphry, a pioneer in the movement for legal assisted suicide, broached this shocking notion: assisted suicide for those suffering from mental illness and unable to get better.

The idea, he said, came from his long experience in the movement. As right-to-die advocates have become more visible in their fight to establish physician-assisted-suicide laws, people with mental illness have been increasingly approaching Humphry and others seeking what he called “positive help” — in other words, assistance in killing themselves.

“From their point of view, the suffering is as great as a person dying of a physical illness,” he wrote in the announcement of his Tucson presentations. “And it probably is! They argue a terminal patient knows soon death will bring about the end of pain, whilst they are condemned to a lifetime of suffering. They report they have endured long hours of therapy and used mountains of prescribed medications. Still they would prefer death, they say.”

Tucson is an important place for Humphry, who rose to prominence with his 1975 book, “Jean’s Way,” about his first wife’s death by suicide in the face of terminal breast cancer. He founded the Hemlock Society in 1980, and Tucson was the first place in America with a local chapter.

When I spoke to Humphry Friday, he wasn’t willing to advocate directly for the idea and said it won’t be the thrust of his presentations here, but instead explored how and if it would work.

“If ever people wanted to pass laws for the mentally ill,” he said, “it would be done most carefully. There would have to be long record of treatment of illness for the individual” before suicide assistance would be permitted.

Humphry’s disclaimer seems disingenuous at best.  The email that went out promoting his talks consisted mostly of a copy of a 2009 blog entry by Humphry (I tracked the source using google) titled “Realistically, assisted suicide for the troubled is not available“.  There’s just a relatively few sentences at the end talking about Humphry’s former ties to the area and where he’ll be appearing.  Since the column’s publication, Humphry has gone farther in denying he’s pushing the envelope in regard to “mentally troubled people” in messages to his “right to die email list“.  For example, in a message containing Steller’s column, a note is included from Humphry: “D H writes: I have never pushed, or even suggested, for assisted suicide for mentally troubled people, as this headline and article imply. Terminal or hopeless illness is my field. It is sufferers and journalists who constantly put the ‘mental’ question to me.”   Personally, I think he’s protesting way too much – anyone receiving  the promotional email I was shown would expect Humphry to be talking and promoting the topic of expanding assisted suicide “eligibility.”

In his column, Steller reported reactions from 3 people regarding expanding the idea of assisted suicide as an “option” for people with mental health issues: a man identified as having bipolar disorder and who runs supports groups; a psychiatrist; and the sister of Jana Van Voorhis, the woman who died with the “help” of the Final Exit Network.  All of them think it’s a very bad idea. He also writes:

The issue is not just hypothetical. An American advocate of assisted suicide, George Exoo, claimed in a British documentary to have assisted more than 100 people in killing themselves, including a severely depressed Irish woman and others with mental illness. Irish authorities issued an arrest warrant, and he was arrested by FBI agents, but his extradition was denied.

The link is to the first of nine parts of a 2008 documentary by Jon Ronson that aired on the BBC.  It has never been aired in the United States.

At about 4:30 into this video segment Derek Humphry – one of many people interviewed by Ronson – talks about getting calls from people without serious physical issues.  The transcript of his remarks are below. They don’t exactly reek of compassion, but seem to express annoyance with having to deal with these callers – and a lack of concern regarding whether or not they live or die:

Once or twice a week I get very strange people on the telephone and they’re anxious to commit suicide because of their depression or their sad life or something.  When you get one of these people gets on to your number they want to talk talk and call again call you adjectives and pursue you … and they call all the other right to die groups.and they would say ‘oh we can’t help you it’s not really in our parameters, but George Exoo will probably help you’. You see, and that gets them off the phone and on to George.

If you’re able to watch and hear the video, Humphry’s dismissive and callous demeanor comes across even more clearly through tone and body language.  I recommend seeing the entire documentary, in fact.  Exoo – the main subject of the documentary – is still out and about.  And the parts featuring other “right to die” leaders aren’t exactly flattering to them.

Back to Steller, now on the Final Exit Network and Jana Van Voorhis:

In April 2007, members of the Final Exit Network — inspired by Humphry’s 1991 suicide self-help book, “Final Exit” — assisted Phoenix resident Jana Van Voorhis in killing herself. Van Voorhis, 59, had long suffered from mental illness, her sister, Viki Thomas, told me Friday. They helped her kill herself anyway.

In 2009, then-Maricopa County Attorney Andrew Thomas brought charges of conspiracy to commit murder against the group. One man, Final Exit’s then-medical director, was acquitted at trial, but the other three pleaded guilty to lesser charges.

Humphry, who chairs the Final Exit Network’s advisory board, told me Friday the group acknowledged “that was a blunder on their part.”

“She said she was terminally ill and described her terminal illnesses,” Humphry said. “The Final Exit Network accepted that. If they had investigated, they would have found she was mentally ill, not terminally ill.”

As I reported at the beginning of this post, Steller had no idea that the VanVoorhis suicide had anything to do with what he was writing before he talked to me.  He might not have caught up enough on all the details to properly fact-check Humphry. The statements from Humphry regarding the Final Exit Network and Van Voorhis go beyond misleading – they’re pretty close to outright lies.  There was no “blunder.”  And, in fact, the “exit guides” had been told that her claims had been investigated by their so-called “medical director,” Lawrence Egbert.  Here is some info on that from the transcript of  “The Suicide Plan,” a documentary aired on PBS on the series Frontline:

WYE HALE-ROWE: She certainly had disordered communication and it took some work to help her complete the sentences, but she certainly had thinking behind it. Sometimes an illness itself has some cognitive components, and people have difficulty communicating.

And so my concern about her cognition was, does she understand the consequences of what she is requesting? Does she understand finality? Does she know what’s going to happen? And she explicitly knew.

But it was deeply disappointing to find out, for me, that none of those physical diagnosis, medical diagnoses, were real, and that this had not been validated by the medical committee of Final Exit Network.

TOM THOMAS, Jana Van Voorhis’ Brother-in-Law: The man that was supposed to be the medical director of this Final Exit Network organization received actually nothing from any medical personnel, nothing from a hospital, nothing from a doctor. He received a little handwritten thing about her exposure to rat poisoning, bugs eating her, and some of the illnesses she did have over the previous 20, 25, 30 years.

How this so-called medical director didn’t say, “Something is really wrong here. Let’s— let’s step back, let’s take a look at this lady and see what’s really wrong with her”— How that happened is— I don’t know. I don’t know.

LAWRENCE EGBERT, Medical Director, Final Exit Network 2004-2009: We accept, at least theoretically, any individual patient with a disease that’s causing unacceptable suffering, by their definition, not by our definition, and that, of course, would include mental diseases.

Jana Van Voorhis, it was so clear what her problems were. It was also very clear, even on paper, that she’d done a lot of suffering for a lot of years. I was told she wanted to die, and then evaluated the case, thought it was acceptable, and wrote “accepted,” told the coordinator that she was accepted medically, and that’s all I did.

Wye Hale-Rowe, one of the defendants who agreed to a plea bargain, obviously felt misled by Egbert, who in turn seemed to be doing very little “medical evaluation” at all.

As to reactions from the sister of Jana Van Voorhis, they’re mentioned, in part, here:

While Thomas objected to Final Exit’s helping her sister kill herself, she said something surprising Friday that made me stop and wonder: “She’s in a better place, I know that.”

That comment, similar to many people trying to come to terms with a tragedy,  leads to an “epiphany” of sorts for Steller, that runs counter to all of the lousy history, negative reactions and hasty retractions associated with this type of expansion of the – to put it euphemistically – the “right to die.”:

That, in a nutshell, is what makes Humphry’s flawed suggestion worth talking about at all — the suffering of people with serious mental illness is real and torturous enough that sometimes death seems better than life, even to loved ones. It might be a discussion worth having if we were doing the more basic work of ensuring that seriously mental ill people get the treatment they need.

Not only does this conclusion go contrary to most of the rest of the article, but the two sentences contradict each other.

Which brings me back to other parts of my discussion with Mr. Steller.  I described assisted suicide rhetoric as being an unholy mix of both libertarian and paternalistic arguments – on the one hand, “people should end their lives how and when they want” but OTOH “they need help to make sure they don’t have to deal with an undesired outcome.”  These two stances are normally diametrically opposed.

For NDY’s part, we’re against any public policy that sanctions the encouragement and facilitation of some suicides, while treating the suicides of other individuals as “preventable tragedies.”  I added that disability activists were far more concerned with the excesses exercised in terms of suicide prevention – with people’s lives and bodies being violated by forced treatment and institutionalization.  And that there are many people in the movement who have experienced such harm at the hands of the mental health system that they’d rather die than be within its control again.

And how about those suicide prevention groups? I’ve already written about the political, ethical and moral cowardice they’ve exhibited through their collective silence in terms of the promotion of suicide for old, ill and disabled people.  Will they maintain their silence on this topic?  It seems less likely, if only for the most cynical reasons – Too many careers and financial interests involved in diagnosing, labeling and treating (even if its unwanted) people with “mental health” issues.

Obviously, whether or not Derek Humphry wants it to be a major topic when he hits Tucson later this month (now that there’s been fallout), it’s almost assured it will be at the top of the list of things people want to talk about.  Stay tuned.

Click here for  exhaustive NDY coverage of the Final Exit Network.

Click here for NDY coverage of George Exoo.