Thursday, April 26, 2018

Hans Asperger participated in the German euthanasia program.

Why did his involvement in killing remain unknown?

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition.

German Euthanasia Victims
It is important that we understand our past to protect future societies from making similar tragic errors. The German T4 euthanasia program is nearly hidden within history, an event that few people want to talk about and fewer want to acknowledge how we are repeating history.


Nonetheless, research uncovering the involvement of Hans Asperger, who became known for his research related to Autism Spectrum, identifies that he was also involved in killing approximately 5000 people with disabilities as an active participant in the German T4 euthanasia program.

Studies by Albert Bandura, a psychologist who developed the social cognitive theory known as Moral Disengagement, answers the question - How People Do Harm and Live with Themselves? Moral Disengagement theory helps to explain how people like Hans Asperger can be a respected scientist and yet responsible for killing people with disabilities as part of the German T4 euthanasia program. 

A recent article by Swedish researcher Fabian Stahle, examines Moral Disengagement and the Mechanisms Propelling the Euthanasia/Assisted Suicide movement.
Several years ago I published an article by historian Götz Aly titled: The Victims of Nazi Euthanasia Have Been Forgotten. Götz states in his article that people didn't talk about the family members who were euthanasia victims because they were people with disabilities. Thus the silence surrounding the euthanasia victims helped to keep information about the euthanasia program hidden.

The Atlantic Magazine published an article (April 25, 2018) by John Donvan examining - How Asperger's involvement in the German euthanasia program remained unknownThe Atlantic article suggests that Asperger's euthanasia past remained unknown because Asperger remained relatively unknown until after his death and because the language barrier kept his involvement in killing unknown. According to the Atlantic:
The new, novella-length study by the medical historian Herwig Czech answers many of the questions that have dogged Asperger for decades, except for one: why it took so long for the story to come out in full. 
Two things have protected Asperger’s reputation up till now. The first was a geographical and language barrier. Asperger, who lived between 1906 and 1980, never published in English, and spent almost no part of his professional life outside of Austria. This mundane fact proved critical. Starting at the conclusion of World War I—when scientists from Belgium, France, and the United Kingdom shut out their German and Austrian peers from Western European conferences, journals, and the like—the German language began to lose its position as a lingua franca of science and research. ...Moreover, following World War II, there was a taint to virtually all Nazi-era medical scholarship, owing to the disgusting and well-documented ethical breaches associated with some of the research conducted. This unquestionably dampened international discussion of Asperger’s ground-breaking 1944 paper, in which he wrote about four intellectually capable but socially struggling Austrian boys and for the first time described the syndrome that he called “autistic psychopathy.” 
For the next four decades, that paper went virtually unnoticed and was minimally cited in the main centers researching autism, which were located in Britain and the United States. It was only in 1981 that the influential British psychiatrist Lorna Wing drew attention to it. Wing was just then beginning to develop the now familiar concept of the autism spectrum, and saw Asperger’s account of autistic psychopathy as an important demonstration of autistic traits in a wider range of individuals than previously documented. Historically, the autism label had been used more narrowly, applied to individuals profoundly challenged in areas like learning, communication, or self-care. For the sake of discussion around the Austrian’s work, she also urged adoption of a less jarring name for it: Asperger’s syndrome.
Donvan indicates that several earlier researchers had concerns about Asperger, but without proof Asperger's murderous past remained hidden. 

Based on comments by his daughter, a "good" mystic developed about Asperger suggesting that he was a Nazi resister. Donvan credits historian Herwig Czech for uncovering the truth about Asperger. Donvan writes:
I got a call from Jeremiah Riemer, the freelance translator I’d asked to check the English translation I was using to quote Asperger’s writing in German. Riemer asked me if I’d ever heard of Herwig Czech—the historian whose work has just appeared in Molecular Autism. It seems my friend, frankly suspicious of the hero narrative (which he said had a great deal to do with being a Jew well acquainted with the history of postwar patterns of Austrian denial of responsibility), had googled around in German, and come across an interview Czech gave to an Austrian newspaper raising questions. I had never heard of Czech, but we were to become well acquainted over the next two years, as he gradually shared with my coauthor and me most of the details that he has now made public in full.
I don't claim to be a historian but unlike Donvan, I think that an investigation needs to be done into the research that Asperger published. Considering the inhumane treatment of people with Autism and other disabilities, it is likely that the four Austrian boys that were featured in his 1944 research article were not treated humanely. Also, did the four Austrian boys die by euthanasia? I don't know, but I ask the question based on the fact that much of the human research done at this time in history was condemned based on the way the research was done and how the research "subjects" were treated.

A good outcome from identifying Asperger's involvement in the German euthanasia program is that, once again, it gives the world the opportunity to examine the outcome of giving physicians the right in law to kill.

Lest we forget.

You Don’t Want to be a Burden, Do You?

This article was written and published by Nancy Valko on April 26, 2018.

Nancy Valko
By Nancy Valko

An April 13, 2018 USA Today op-ed titled “Make an End-of-life plan or Lose your Money and Choices in your Dying Days” by Hattie Bryant begins with the statement “End-of-life care can bankrupt your family and rob you of choices. End the denial about dying. Make a plan in case you end up seriously ill and frail.” (Emphasis added)

Ms. Bryant is very upfront about using the economic argument about aging and the enormous toll it can take financially and personally on the family as well as medical costs. She states that “in 2011, Medicare spent $554 billion and 28%, or about $170 billion, on patients’ last six months of life. After $170 billion is spent, those patients are still dead.”

Her solution is a new kind of economic advance directive she developed (and is selling as a book titled “I’ll Have It My Way: Taking Control of End-of-Life Decisions“ ) “that deals with how you want your funds spent when you are seriously ill or frail.” (All emphasis added)

Should We Have A “Duty To Die”?


Back in 1984, Governor Richard Lamm of Colorado found himself in the middle of a firestorm of outrage when, as the New York Times reported, “Governor Lamm Asserts Elderly, If Very Ill, Have a ‘Duty to Die”.

Here is an excerpt from the article:
“Elderly people who are terminally ill have a ''duty to die and get out of the way'' instead of trying to prolong their lives by artificial means, Gov. Richard D. Lamm of Colorado said Tuesday.

People who die without having life artificially extended are similar to ''leaves falling off a tree and forming humus for the other plants to grow up,'' the Governor told a meeting of the Colorado Health Lawyers Association at St. Joseph's Hospital.

''You've got a duty to die and get out of the way,'' said the 48-year-old Governor. ''Let the other society, our kids, build a reasonable life.''
This philosophy was echoed in 2014 by one of the architects of Obamacare, Dr. Ezekiel J. Emanuel, when he wrote “Why I Hope to Die at 75-An argument that society and families—and you—will be better off if nature takes its course swiftly and promptly” for The Atlantic Magazine.

At age 57 at the time, Dr. Emanuel states that while death is a loss, there “is a simple truth that many of us seem to resist: living too long is also a loss” that “renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.” (Emphasis added)

He states that he will stop trying to prolong his own life by age 75.

Conclusion

Helping to care for many terminally ill or seriously disabled relatives, friends and patients of all ages for many decades both professionally and personally, I have a different perspective.

We are all born dependent on others for care and many of us need at least some help from others at the end of our lives. This can be hard at times-as even parents of newborns will attest-but the rewards are great both for the helper and the person being helped.

I remember when my mother with Alzheimer’s and terminal thyroid cancer was dying in 1988. It wasn’t the most convenient time for us, to say the least. I was a suddenly single parent with three young children and financially struggling. My mother no longer recognized me but, as I told a friend, the most important issue was that I recognized her. As a family, we did what was medically reasonable for my mother to help her without either prolonging or hastening her dying.

Taking care of my mother was a wonderful, if occasionally difficult, experience and I am grateful that we were able to keep her at home almost to the very end.

The final result was that my mother was kept safe, comfortable and loved. Her funeral was truly a celebration of her life and my children learned an important lesson about the circle of life and taking care of each other. We still talk fondly about their time helping with grandma, even after 30 years.

When I made out my own advance directive, I made sure that it was as protective as possible against a hastened death. I don’t fear death. I do fear the bio-ethicists and others who use economics and fear to push especially older people into prematurely signing away their rights to even basic care and what this does to our society.

Wednesday, April 25, 2018

Oregon Health Authority. There is no effective oversight of the Oregon assisted suicide law.

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

Last January, Fabian Stahle, a researcher from Sweden, published an email communication with an Oregon Health Authority (OHA) analyst concerning the OHA interpretation of the Death With Dignity Act (assisted suicide).

Based on the email conversation with the OHA analyst, Stahle uncovered the fact that: the definition of terminal illness, in Oregon, includes people who are not terminally ill, but would become terminally ill if they refuse effective medical treatment or care and the language in the Oregon assisted suicide law may have deceived people into thinking that the Oregon law is limited to people who are terminally ill.
Recently the OHA clarified the Public Health role concerning the Death with Dignity act (assisted suicide). The OHA update added the following two paragraphs:
The Act outlines specific patient requirements to participate. A patient must be: 1) 18 years of age or older, 2) a resident of Oregon, 3) capable of making and communicating health care decisions for him/herself, and 4) diagnosed with a terminal illness that will lead to death within six (6) months. It is up to the attending and consulting physicians to determine whether these criteria have been met, and report that fact to OHA at the time a prescription is written. If any issues of non-compliance with the statutory requirements are identified, OHA reports that fact to the appropriate licensing board. 
The Death with Dignity Act is a permissive law that allows qualified patients to request a prescription and allows a physician to write the prescription. The Act as written requires that two physicians agree that the patient is suffering from a terminal disease, the patient is capable of making a decision to request life-ending medication, and the patient has made an informed decision. The Act does not specify whether or not all treatment options must be exhausted prior to a prescription being written, nor does it specify health insurance payment requirements for disease treatment. OHA does not interpret the statute, other than the portion related to the reporting requirements. (my highlights)
I highlighted information from the second paragraph that was likely added, in response to the article by Stahle. Clearly, there is no effective oversight of assisted suicide in Oregon and the law is interpreted to enable people who are not terminally ill to die by assisted suicide.

Tuesday, April 24, 2018

NY Association on Independent Living Opposes Assisted Suicide Bill A2383A

The following article was published by Not Dead Yet on April 23, 2018.

Testimony of Mel Tanzman on Behalf of NY Association on Independent Living Opposing Assisted Suicide Bill A2383A (April 20, 2018)

Testimony to the New York State Assembly Health Committee on the Death with Dignity Act

Hello and thank you for the opportunity to testify here today. The New York Association on Independent Living (NYAIL) is strongly opposed to A.2383A, known as the Medical Aid in Dying Act, which would legalize physician assisted suicide in New York State.

A major concern for people with disabilities is that assisted suicide reinforces negative perceptions about being disabled and the idea our lives are not worth living. Fears of becoming disabled and facing functional loss, whether the cause is injury or illness, are often reported by doctors as reasons patients request assisted suicide in states where it is legal. Oregon released data from 2017 which showed that the top three end-of-life concerns cited by Oregon patients requesting suicide pills had nothing to do with physical pain and suffering. These concerns were: decreasing ability to participate in enjoyable activities; loss of autonomy; and loss of dignity (1). The disability community strongly opposes the belief that requiring the assistance of another individual for activities of daily living, such as dressing, bathing and toileting, is undignified or a legitimate reason for New York State to legalize physician assisted suicide.

Most people become disabled toward the end of their life. The disability community understands that becoming disabled and losing the ability to do things like walk, dress or go to the bathroom independently is very difficult and causes depression. Yet, this law does not have adequate safe guards to ensure people are not seeking this option due to depression or other concerns which can be addressed. Though frequently insist that as a key safeguard, depressed people are ineligible, psychological supporters of the proposed legislation screenings are not required, leaving it to a physician to determine whether someone requires a psychological evaluation.

In Oregon, Michael Freeland was a 64 year old man with a 43-year medical history of acute depression and suicide attempts (2). Yet, the doctor he consulted with when seeking assisted suicide medication said he didn’t think that a psychiatric consultation was “necessary.” In fact, Oregon’s statistics for the years 2011 – 2014 show that each year, only 3% of patients (or fewer) were referred for psychological evaluation or counseling before receiving their prescriptions for lethal drugs. The proposed Medical Aid in Dying Act only mandates an attending physician refer the patient for a mental health screening if they lack the capacity to make the decision.

If you are still wondering why the disability community is so opposed to legalizing physician assisted suicide, consider the reports that came out of Oregon in January. Oregon state officials have confirmed that people with chronic conditions like Diabetes are eligible for physician assisted suicide if they stop treatment (3). According to Craig New, a Research Analyst for the Oregon Health Authority, who studies the Death with Dignity Act “The law is best seen as a permissive law, and states only that patients must have a terminal illness with six months or less to live. It does not compel patients to have exhausted all treatment options first, or to continue current treatment. It is up to the patient and doctor to discuss disease and treatment options. But if the patient decides they don’t want treatment, that is their choice.” New goes onto say that if a patient can’t afford treatment, then they can be considered terminal under the law as well. Diabetes and many other chronic diseases can be treated and allow people to live long lives. This interpretation creates a serious danger for people with disabilities and chronic conditions. Oregon’s law allows people with disabilities who could otherwise seek treatment to kill themselves with the help of a doctor. There are no safeguards in the proposed legislation to ensure this is not permitted in New York.

NYAIL is also concerned about the deadly mix between our profit-driven health care system and legalizing assisted suicide, which will be the cheapest so-called treatment. Direct coercion is not even necessary. If insurers deny, or even merely delay, expensive live-saving treatment, the person will be steered toward assisted suicide. Take Barbara Wagner and Randy Stroup: two Oregon residents who had cancer. Both Wagner and Stroup were prescribed treatments, but their health plans denied the prescribed treatment, offering physician assisted suicide as an alternative (4). What happened to these patients underscores the danger of legalizing assisted suicide in the context of our broken U.S. health care system.

Proponents of physician assisted suicide often argue that this option is necessary to prevent suffering at the end of life. This is not the case as there are alternative options to prevent suffering. It is already legal in New York for individuals to refuse life-sustaining treatment at any time, and to create an advance directive to cease treatment under any circumstance they choose if they are no longer able to make and communicate decisions. Palliative care is available and can provide pain relief to ensure a person is not in pain, even in those rare cases in which total palliative sedation is required. Unfortunately, medical schools do not mandate their students learn about end of life options and so may not be educating their patients on all their options. New York should invest in educating the community about these options and focus on promoting and expanding palliative care so that it is an available option to anyone facing a painful illness. What happened to these patients underscores the danger of legalizing assisted suicide in the context of our broken U.S. health care system.

People vastly prefer to live and die in their homes, as opposed to a hospital. Unfortunately, hospice is not always an available option for people facing terminal illness, and is severely underutilized in New York State, which is 48 among the states in using hospice services. There are barriers for people who live in assisted living facilities from getting hospice services. There are also barriers to people receiving home care once on hospice. The State should focus on addressing these barriers rather than on legalizing physician assisted suicide.

Finally, the disability community is deeply concerned about coercion and abuse. The proposed legislation is based on the laws in Washington and Oregon, which have proven to have ineffectual safeguards against abuse. One upsetting example from Oregon is Kate Chaney, an 85-year-old woman with dementia who died by assisted suicide (5). She first approached her physician, who would not prescribe her the lethal prescription. She then went to a second doctor, who ordered a psychiatric evaluation, which found that Cheney lacked “the very high level of capacity required to weigh options about assisted suicide.” Cheney’s request was denied, and it has been reported that her daughter “became angry.” A second evaluation was then done with another psychologist, who insisted on doing the evaluation with Chaney alone. Disturbingly, the psychologist deemed Cheney competent while still noting that her “choices may be influenced by her family’s wishes and her daughter, Erika, may be somewhat coercive.” Cheney soon took the drugs and died, but only after spending a week in a nursing home. This is a very disturbing example of doctor shopping and the lack of safe guards in place in Oregon.

A.2383/S.3151A does not prevent a coercive family member or caregiver from doctor shopping with the individual to find a physician who will provide the fatal drug, such as in the case of Kate Chaney. There is nothing in the proposed legislation that would prevent an abusive caregiver or family member from steering the individual toward physician assisted suicide, witnessing the request form, picking up the lethal dose, and even administering the drug. Because no independent witness is required at the death, there is no assurance of self- administration or even consent.

For all of the reasons above, we strongly urge the Assembly’s Health Committee not to pass this dangerous legislation.

Respectfully submitted,

Mel Tanzman
Executive Director of Westchester Disabled on the Move NYAIL Board Member and Health Committee Chair

1 Oregon Death With Dignity Act: 2015 Data Summary

2 Gregory Hamilton, M.D. and Catherine Hamilton, M.A., Competing Paradigms of Responding to Assisted-Suicide Requests in Oregon: Case Report, presented at the American Psychiatric Association Annual Meeting, New York, New York, May 6, 2004.

3 Bradford Richardson, Diabetics eligible for physician-assisted suicide in Oregon, state officials say, The Washington Times, January 11, 2018.

4 Kenneth R. Stevens, Jr., M.D., Oregon Rationing Cancer Treatment But Offering Assisted Suicide to Cancer Patients—Paying to Die But Not to Live, Physicians for Compassionate Care Educational Foundation, June 6, 2008, (accessed July 9, 2009).

5 DHS news release, “No authority to investigate Death with Dignity case, DHS says,” March 4, 2005.

Monday, April 23, 2018

Vincent Lambert given temporary clemency from death by dehydration.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Vincent Lambert with his mother.
According to Figero news Viviane Lambert, the mother of Vincent Lambert was informed on April 9, that her son would die a slow and agonizing death by dehydration, also known as euthanasia by dehydration.


Today Francetvinfo reported that Vincent Lambert will not die by dehydration, at this time, as the court approved a complete assessment of his condition by three qualified doctors. According to Francetvinfo (google translated):

A new expertise is ordered by the Administrative Court of Châlons-en-Champagne in order to be able to pronounce "definitively" on the stop of the treatments decided by the University Hospital Center of Reims. 
.. A college of three qualified doctors "in neurology, physical medicine and rehabilitation" will be appointed soon by the court. He will then have one month to draw up the real state of health.
Vincent Lambert was cognitively disabled in a motorcycle accident injury in 2008. In 2015, his wife petitioned the court to have all treatment and care ceased including food and water. His parents urged that their son be transferred to a rehabilitation center.

To intentionally kill a person by withdrawing fluids, when the person is not otherwise dying is euthanasia by dehydration since the person is directly and intentionally killed by dehydration.

Nancy Elliott: Reject New York assisted suicide bill A2383A

Proponents say that this is about autonomy and choice. Nothing could be further from the truth.
Nancy Elliott
Dear Assemblymember,

Please reject legislation to legalize Assisted Suicide, Bill #A2383A.

Proponents say that this is about autonomy and choice. Nothing could be further from the truth. There are no safeguards that ensure that the choice is yours and not someone else's. As a matter of fact all the “so called” safeguards can be gone around. Proponents claim there is no “slippery slope” yet we see as soon as something is passed they go in to expand their death policies. Oregon, where assisted suicide is legal, just passed legislation that will allow for the starvation and dehydration of incompetent people. Belgium’s law has expanded to euthanize children, those who are incompetent and people who are not dying at all. And Canada who recently passed it is has already expanded it to prisoners.

I would like to point out a few of the people who will be hurt. Three groups that are the target for Assisted Suicide are the sick, the elderly and the disabled. While there are many other problems with this kind of law, I want to focus in on them.

It is said this is only for the sick and dying. One of the biggest problems is people who qualify for assisted suicide are not necessarily dying. Think of a 21-year-old otherwise healthy insulin dependent diabetic. He qualifies if he rejects his insulin. This would be the same for many other people with serious conditions, who take prescription medications. What about all the curable cancers? They qualify. What about the 5% of incorrect medical diagnosis? With assisted suicide on the table these mistakes can be deadly.

I was at an oral submission on assisted suicide in Massachusetts a few years back when a gentleman named John Norton gave evidence, that as a young man he was diagnosed with ALS. He stated that had assisted suicide been legal at that time he would have used it. A few years in, the disease’s progression just stopped. Now in his late 70’s he stated he has had a great life with children and a grandchild. With assisted suicide on the table he would have lost all of that.

Steering is a big deal with all three of the groups that I mentioned. At that same Massachusetts proceeding, a doctor stated that assisted suicide laws were something he was in favor of. He continued with his points and ended by saying that He felt it was the responsibility for a good doctor “to guide people to make the right choice”. I do not think he intended to say that, but is there any doubt that this pro suicide doctor would try to persuade his patients to follow his wishes concerning their assisted suicide.

These laws are abusive in their very nature. To suggest to someone that they should kill themselves is abuse. My husband was terminally ill and I went to a lot of doctor appointments with him. If medical personnel were to suggest assisted suicide to him, he would have been devastated. While he never would have done that, it would be like saying to him, “You are worthless and should die. That is abuse! The proponents say that would never happen, but that did happen to an Oregon woman named Kathryn Judson. She had gone to a doctor’s appointment with her seriously ill husband and exhaustedly sunk into a chair where she overheard the doctor pitching assisted suicide to her husband with the clincher, “Think of your wife.” They left and never came back. The husband went on to live another five years

Next seniors are at risk and very easily fall victim to coercion as the process is very open to that. In most states, heirs can be there for the request and even speak. Anyone can pick up the lethal dose. Once in the house all oversight is gone, there is no witness required at the death. Even if they struggled who would know. If that is not enough, the death certificate is falsified to reflect a natural death. All the information is sealed and unavailable to the public. Even if someone suspected foul play, the death certificate says no crime here. Taking advantage of seniors is epidemic in the States. Look at the case of Thomas Middleton. He made Tami Sawyer his trustee and moved into her home. Within a month he was dead by Oregon’s assisted suicide law. Two day after his death Ms. Sawyer listed his house and sold it and deposited the money into three companies she owned with her husband. We will never know if or how much coercion or foul play took place in this case.

Finally those with a disability are at risk. Most people that “qualify” for assisted suicide at that point in their life have a disability. Many with long term disabilities have been labeled terminal all their lives. Without meds, treatments, and assistance they would not survive. This is about disability. If you have a disability you are encouraged to give up, commit suicide. If, on the other hand, you are young and healthy, you are given suicide counseling. This is discrimination against people with disabilities. Why should they trust that they will not be coerced into assisted suicide, when they are already discouraged to seek treatments and are not treated fairly? When you think about it this is a law that is written just for them. It is a “special” carve out, for the sick, elderly and disabled.

In closing, I just want to add that assisted suicide has been rejected in over 100 legislative, ballot initiative and judicial attempts in the USA, including my state New Hampshire. The more it is studied the more uncomfortable people become with it.

Nancy Elliott
Former three term NH State Representative
Chair - Euthanasia Prevention Coalition - USA

Thursday, April 19, 2018

20% of End-of-life medical decisions made without cancer patients consent in Belgium.

10% of Flemish (Belgium) cancer patients die by euthanasia.

The following article was published by Bioedge on April 8, 2018.

Michael Cook
By Michael Cook

A survey of end-of-life decisions for cancer patients involving Flemish physicians has found that in 10.4% of the cases, there was euthanasia or physician-assisted suicide and life shortening without explicit patient request in 1.8%.

The results were published in the British Journal of Cancer and were based on a survey of physicians in Flanders, Belgium, in 2013. The percentages are based, not on cancer deaths, but on the number of end-of-life decisions for the patients. The classification system may seem a bit odd to non-specialists. If the drugs were given with the explicit intention of hastening death, the decision was termed “euthanasia” if “someone other than the patient at the patient ’s explicit request had administered the drugs”; physician-assisted suicide if “drugs had been prescribed or supplied and self-administered”; and “life abbreviation without explicit patient request” if there had been no explicit request from the patient.

The reasons for an end-of-life decision included (along with other motives) the “wish of the family” (28%) and an “unbearable situation for relatives” (12.4%).

Since cancer is the disease most often mentioned as a trigger for a euthanasia request, it is not surprising that requests for euthanasia are higher amongst cancer patients. The authors believe that “in Belgium assisted dying has clearly become a part of medical practice in the care of cancer patients and that the various disciplines of oncology need to be trained in dealing with euthanasia requests”.

The 1.8% of deaths which occurred without explicit request should not alarm anyone about “slippery slopes”, the authors believe. The proportion of such deaths has remained constant ever since euthanasia was legalised in 2002.

However, somewhat confusingly, the authors note that “decision-making took place without the patient’s input in almost 20% of the cases”. These decisions were not necessarily euthanasia; they could have been withholding treatment or aggressive pain relief. But as the authors note, it is still unethical.

Study examines euthanasia of people with intellectual disabilities in the Netherlands

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Not Dead Yet spokesperson
An important study was published in the Journal BMC Medical Ethics (March 5) examining nine euthanasia deaths of people with intellectual disabilities in the Netherlands.

The purpose of the study was to examine:
How do physicians and the Dutch regional euthanasia review committees operationalise the EAS due care criteria for patients who have an intellectual disability and/or autism spectrum disorder? What, if any, are the particular difficulties when the EAS due care criteria are applied to these patient groups?
For more information about euthanasia from a disability perspective go to the disability rights group - Not Dead Yet.

According to the 2017 Annual euthanasia report, there were 6585 reported euthanasia deaths in the Netherlands in 2017. and of those, 252 of them were people who died by euthanasia for psychiatric reasons or for dementia.

The study acknowledges the growth in euthanasia for psychiatric reasons in the Netherlands:
There were 2 reported cases in 2010, 42 in 2013, and 60 in 2016. EAS for mental suffering has been fiercely debated. Arguments have focused on the difficulty of assessing the patient’s subjective perception and complaints and on the challenges in assessing the patient’s capacity of judgement, which may be impaired by psychiatric conditions such as severe depression.

The study examined 416 Netherlands euthanasia case summaries uncovering 9 cases of a person with an intellectual disability or autism spectrum. These cases are examined in the study. 

The nine euthanasia deaths included 6 woman and 3 men of varying ages. Of the 9 deaths by euthanasia, 6 of the people had intellectual disabilities, 2 were identified as Asperger’s syndrome and one was identified as autism spectrum disorder.

Three cases referred to family involvement, the other cases didn't include family information. One case stated that the person lived in a psychogeriatric unit while another case indicated that the person lived alone, while the other cases didn't refer to living conditions. Six cases referred to a previous admission to a psychiatric in-patient setting and there were several references to loneliness and social isolation.

The initial request was usually made to the GP. In six cases the GP refused, in three of the refusals, the GP did not support euthanasia and the other three cases the physician thought that the case was too complex or that the person did not qualify for euthanasia. In all of the six refusals, the person went to the "End of life Clinic" (euthanasia clinic) for approval.

Capacity assessments were referred to in eight cases, where five of the cases it stated that the person had decision making capacity. In three cases the physicians disagreed or wanted a second opinion concerning capacity.

The study concludes that safeguards and capacity assessment in cases of people with intellectual disabilities or autism do not effectively protect this group of people:
...Following the examination of the Dutch case reports, we conclude that the safeguards, in the form of legal due care criteria, are not easily applied to people with intellectual disabilities or autism spectrum disorder, and that the usual standards could in fact have the unintended effect of leaving vulnerable patients at risk. 
...From the literature and our examination of nine case reports published on the RTE website, we conclude that assessment of capacity can be extremely difficult people with intellectual disabilities, however mild. It requires a high level of expertise and an intimate knowledge of the patient. There are specialist intellectual disability physicians in the Netherlands, but there was evidence of involvement of such a specialist in only one of the cases (2016–03). 
...The Dutch cases raise the possibility that the bar for assessment of intractable suffering is set lower for people with an intellectual disability or autism spectrum disorder than for the general population, by considering their long term disability as a medical rather than a social condition. 
The study then suggests that the problems with euthanasia that were uncovered by examining deaths of people with intellectual disabilities may also apply to the general population:
Widening the implications even further, we speculate that many of the challenges highlighted in this paper could also be relevant to patients in the general population, and that they are simply more pronounced or extreme for vulnerable patient groups. It is quite possible that people with intellectual disabilities are like the canary in the coal mine, among the first to come up against issues that turn out to be issues for everyone. ...It may well be that the ability to use rationality and logic when weighing up the EAS option, and thus decision-making capacity in accordance with standard capacity tests, is impaired in most people affected by the emotional turmoil of terminal illness or suffering caused by chronic conditions.
The final comments from this study clearly uncover a reality, that being that all people who are considering death by lethal injection, at that moment, are part of a vulnerable patient group. The concept that euthanasia concerns free choice and autonomy represent a false and dangerous concept because the reality is that people only consider death by lethal injection when they are at the lowest point in their life. In other words, euthanasia is not about freedom, choice and autonomy but rather an abandonment of people at their time of need.

For more information 

Wednesday, April 18, 2018

Assisted suicide lobby group delays launch of suicide drug.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Reuters reported that the assisted suicide lobby group, Cooperative Last Will has delayed the launch of the lethal suicide drug known as Substance X after a 19-year-old died by lethal drugs:
Cooperative Last Will scrapped its plan for Substance X after prosecutors launched an investigation into the group following the suicide of a 19-year-old woman. Her parents blamed Last Will on the grounds that its announcement made her aware of the existence of the chemicals she used to kill herself. 

The assisted suicide group made headlines when a 19-year-old woman died by assisted suicide with the alleged involvement of this group. According to Reuters:
Prosecutors had been looking at the Final Wish cooperative since September... 

Final Wish made headlines ...when the father of 19-year-old Ximena Knol said on television the group should be shut down after his daughter’s suicide using a powder believed to be the same “Substance X” the association promotes.
The 2017 Netherlands euthanasia report indicated that there were 6585 reported assisted deaths, up 8% from 2016 with 252 of the assisted deaths done for dementia or psychiatric reasons, up by 25% since 2016.

In January 2017, a Netherlands euthanasia review committee decided that the death of a woman with dementia, who died by euthanasia against her will, was done in "good faith." The woman was held down while the doctor lethally injected her. On January 1, 2018, Berna van Baarsen, a euthanasia assessor for 10 years, resigned over the acceptance of euthanasia for dementia in the Netherlands. On January 26, 2018 a 29-year-old woman died by euthanasia for psychiatric reasons.

Reuters reported that the recent furor over the death of 19-year-old Ximena Knol has led to new calls to review the Netherlands euthanasia law.

Monday, April 16, 2018

Fatal Flaws film - Premiere Screening May 8 in Ottawa

"Fatal Flaws" Premiere Screening & Round-table Discussion will be at the:
Ottawa Little Theatre - 400 King Edward Ave, Ottawa, ON K1N 7M7 
7:00 PM Documentary Screening – "Fatal Flaws: Legalizing Assisted Death"
(Arrive early, seating is on a first-come, first serve basis.)
Purchase your $10 screening ticket online here. Eventbrite.
 Click here to view the event poster.
“Are laws allowing euthanasia and assisted suicide leading society down a dangerous path?”
Kevin Dunn
Over the past two years, filmmaker Kevin Dunn has traveled throughout Europe and America asking some of the most fundamental philosophical questions of our time:
"Should we be giving doctors, or anyone, the legal right to end the life of another human?" and, "How do these laws affect society over time?"
Purchase your $10 screening ticket online here. Eventbrite.

Contact the Euthanasia Prevention Coalition to book a speaker for your screening of the Fatal Flaws film at: info@epcc.ca or call: 1-877-439-3348

The film features powerful testimonies from patients, doctors, lawmakers and advocates from both sides of the debate.
8:45 PM Round-table Discussion – LIVE RECORDING
Following the screening, join us for the live recording of a round-table discussion on the dangers of legalizing euthanasia and assisted suicide, also known as "medical aid in dying". The session will be recorded for broadcast and educational purposes and moderated by Mr. Dunn.

The Premiere screening is sponsored by the Euthanasia Prevention Coalition www.epcc.ca.

Link to the Facebook - Fatal Flaws event page.


Visit the film's website for advance previews and more: www.fatalflawsfilm.com.

Oregon Health Plan – Medicaid, Rationing of Care for Patients with Cancer Changes in Eligibility Criteria over the years from 1994 to 2018

This article explains how the Oregon Health Plan rations care for patients with cancer.


Dr Kenneth Stevens
By Kenneth R. Stevens, Jr., MD 

April 15, 2018

The Oregon Health Plan (Medicaid) uses a Prioritized List of Health Services (Link) established by the state Health Services Commission in determining what diagnoses, conditions and treatments will be covered. The Oregon Health Plan (OHP) was established in 1994.

It is currently under the Oregon Health Authority (OHA).

The OHP Guidelines for patients with serious illness have changed over the years.

During its early years (1994 to about 2008-2009), one of its guidelines was: 

“It is the intent of the Commission to not cover diagnostic or curative care for the primary illness or care focused on active treatment of the primary illness which are intended to prolong life or alter disease progression for patients with a 5% chance of a 5 year survival.”
This was the criteria used to deny Barbara Wagner of Springfield, Oregon from receiving chemotherapy for her recurrent lung cancer.

Barbara Wagner’s story: 
Barbara Wagner of Springfield, Oregon, a 64-year old great-grandmother was diagnosed with lung cancer in about 2006. Her cancer was initially treated with chemotherapy and radiation, and she went into remission. In early May 2008, a CT scan revealed her cancer was back and her cancer physician prescribed Tarceva (brand name erlotinib) a pill taken once a day for the purpose of slowing the cancer growth and extending her life. Studies show the drug provides a 30% increased median survival for patients with advanced lung cancer. One-year-survival rate for patients who took Tarceva increased by more than 45% compared to patients who took a placebo. She was on the Oregon Health Plan (Medicaid) and was notified in May 2008 that the OHP would not cover the beneficial chemotherapy treatment, “but that it would cover palliative, or comfort care, including, if she chose, doctor-assisted suicide.”

She said she was devastated when she found that the Oregon Health Plan wouldn’t cover the cancer medication prescribed by her oncologist. “I think it’s messed up,” Wagner told the reporter, bursting into tears. (“A Gift of Treatment – When the Oregon Health Plan fails to cover a cancer drug, the drugmaker steps in” by Tim Christie, June 3, 2008, The Register-Guard Newspaper, Eugene, Oregon.)
 
She was particularly upset because the letter of denial said that doctor-assisted suicide would be covered! “To say to someone, we’ll pay for you to die, but not pay for you to live, it’s cruel,” she said. “I get angry. Who do they think they are?
Barbara Wagner
Having been given no help or hope from the State of Oregon, her oncologist appealed to Genentech, the company that markets Tarceva in the United States, to cover Wagner’s medication. On Monday, June 2, she got the call from Genentech that they would cover the drug for a year, at which time she could re-apply. She was expecting delivery of the drug on June 3. “It’s fantastic”, she said, “I can’t wait to start the medication.” Ultimately, the drug company demonstrated more concern about Barbara’ continued survival than did the state of Oregon.
Mrs. Wagner died a few months later.

The Oregon Health Plan later changed the guidelines for patients like Barbara Wagner.

The guidelines for the January 1, 2010 OHP Prioritized List (revised 7-21-10) states:

Guideline Note 12. Treatment Of Cancer With Little Or No Benefit Near The End Of Life.

All patients receiving end of life care, either with the intent to prolong survival or with the intent to palliate symptoms, should have/be engaged with palliative care providers (for example, have a palliative care consult or be enrolled in a palliative care program).

Treatment with intent to prolong survival is not a covered service for patients with any of the following:

  • Median survival of less than 6 months with or without treatment, as supported by the best available published evidence. 
  • Median survival with treatment of 6-12 months when the treatment is expected to improve median survival by less than 50%, as supported by the best available published evidence.
  • Median survival with treatment of more than 12 months when the treatment is expected to improve median survival by less than 30%, as supported by the best available published evidence.
  • Eastern Co-operative Oncology Group (ECOG) performance score of 3 or higher 
The Health Services Commission is reluctant to place a strict $/QALY (quality adjusted life-year) or $/LYS (life-year saved) requirement on end-of-life treatments, as such measurements are only approximations and cannot take into account all of the merits of an individual case. However, cost must be taken into consideration when considering treatment options near the end of life. For example, in no instance can it justified to spend $100,000 in public resources to increase an individual’s expected survival by three months when hundreds of thousands of Oregonians are without any form of health insurance.

Treatment with the goal to palliate is addressed in Statement of Intent 1, Palliative Care.

The most recent guideline 3-22-2018 states:

Guideline Note 12, Treatment Of Cancer With Little Or No Benefit 

Cancer is a complex group of diseases with treatments that vary depending on the specific subtype of cancer and the patient’s unique medical and social situation. Goals of appropriate cancer therapy can vary from intent to cure, disease burden reduction, disease stabilization and control of symptoms. Cancer care must always take place in the context of the patient’s support systems, overall heath, and core values. Patients should have access to appropriate peer-reviewed clinical trials of cancer therapies. A comprehensive multidisciplinary approach to treatment should be offered including palliative care services (see Statement Of Intent 1, Palliative Care).

Treatment with intent to prolong survival is not a covered service for patients who have progressive metastatic cancer with:
A) Severe co-morbidities unrelated to the cancer that result in significant impairment in two or more major organ systems which would affect efficacy and/or toxicity of therapy; OR
B) A continued decline in spite of best available therapy with a non reversible Karnofsky Performance Status or Palliative Performance score of 3 or higher which are not due to a pre-existing disability.
Treatment with intent to relieve symptoms or improve quality of life are covered as defined in Statement Of Intent 1, Palliative Care:

Examples include: 

A) Single-dose radiation therapy for painful bone metastases with the intent to relieve pain and improve quality of life.

B) Surgical decompression for malignant bowel obstruction.

C) Medication therapy such as chemotherapy with low toxicity/low side effect agents with the goal to decrease pain from bulky disease or other identified complications. Cost of chemotherapy and alternative medication(s) should be considered.
To quality for treatment coverage, the cancer patient must have a documented discussion about treatment goals, treatment prognosis and the side effects, and knowledge of the realistic expectations of treatment efficacy. This discussion may take place with the patient’s oncologist, primary care provider, or other health care provider, but preferably in a collaborative interdisciplinary care coordination discussion. Treatment must be provided via evidence-driven pathways (such as NCCN, ASCO, ASH, SBMT, or NIH Guidelines) when available.

Saturday, April 14, 2018

Nebraska man convicted of assisted suicide in the death of girlfriend.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Matthew Stubbendieck
After two days of hearings and three hours of deliberation, a jury in Nebraska found Matthew Stubbendieck guilty of assisting the suicide of his girlfriend Alicia Wilemon-Sullivan in August 2017.

According to Paul Hammel reporting for the Omaha World Herald:

Wilemon-Sullivan, a divorced mother of four, had texted her boyfriend photos of supposed cancer surgery scars and claimed she had tried radiation treatments that were unsuccessful. 
Stubbendieck, admitted that Wilemon-Sullivan was coming to Nebraska to take her life, and he helped her find a secluded spot.
Even though the article suggested that jurors felt sorry for Stubbendieck, when he admitted that he layed with Wilemon-Sullivan for seven hours while she was dying of self-inflicted wounds, a female juror stated that, 'that was enough for her.'

Shirley Wilemon the mother of the deceased also thought that Stubbendieck should be found guilty. According to the article by Hammel, her mother stated:
“If you love someone, you don’t just sit there and let them die,” 
“He could have saved my daughter, and he chose to leave her out there.”
Stubbendieck also admitted to attempting to suffocate her while she was slowly dying.
Wilemon-Sullivan may have been dying of cancer, but that does not justify abandoning someone to their suicidal ideation.

No DC assisted suicide deaths in the first year after legalization. Doctors don't support assisted suicide.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

In the first year of legal assisted suicide in Washington DC, there were no assisted suicide deaths and only two of 11,000 licensed physicians and only one hospital agreed to participate in assisted suicide.

The assisted suicide lobby accused DC officials of preventing assisted suicide. A Washington Post article reported that the DC Health Director rejected this accusation:
At a hearing before the D.C. Council on Monday, D.C. Health Director LaQuandra Nesbitt said she resented advocates who suggest she was trying to impede the law. She said the department notified all 11,000 licensed physicians that the law was in place, and suggested aid-in-dying advocates should have done more outreach to the medical community. 
“I’m not a gatekeeper to the patients. The program is launched,” Nesbitt said. “I don’t interfere in a patient-physician relationship.”
According to the Washington Post article doctors are not signing up to prescribe lethal drugs and they are not seeking more information:
There doesn’t seem to be much interest from doctors. 
No local practicing physician testified in favor of the measure, and several opposed it, during debate before the D.C. Council. 
“The physician community was not out there advocating for it, so I don’t think there should have been an assumption that there would have been a lot of physicians signing up,” said Pia Duryea, a spokeswoman for the Medical Society of the District of Columbia, which stayed neutral on the bill. “We haven’t had any doctors call us up and say, ‘I really want to sign up, and I think the process is too cumbersome.’ ”
I am concerned that the assisted suicide lobby will hire a death salesperson to push doctors to "sign-up" and to promote people dying by assisted suicide in DC.

France: Vincent Lambert to die by dehydration (euthanasia).

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition.

Vincent & Viviane Lambert
On April 12, Figero news reported that Viviane Lambert announced that she was told on April 9, that her son Vincent Lambert, would have his fluids and food withdrawn and die a slow and agonizing death by dehydration, also known as euthanasia by dehydration.

Vincent Lambert was cognitively disabled in a motorcycle accident injury in 2008. His wife unsuccessfully petitioned the court to have all treatment and care ceased including food and water in 2015. His parents urged that their son be transferred to a rehabilitation center.

In the Figero news report Viviane Lambert stated (google translated):

My son was sentenced to death. His name is Vincent Lambert, he is the father of a little girl, he lives, and has committed no crime. And yet, this Monday, April 9, 2018, in France, a doctor told me that in ten days my son would begin the slow and long agony of dying of hunger and thirst. 
...Mr. President: my son did not deserve to be hungry and dehydrated. Who would dare, in this respect, to speak of "dying with dignity"? Why impose this sentence?
To intentionally kill a person by withdrawing fluids, when the person is not otherwise dying is euthanasia by dehydration since the person is directly and intentionally killed by dehydration.

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