Lethal Problems with Medical Futility and Disability Bias

This article was published by Nancy Valko on January 15, 2020.

Nancy Valko

By Nancy Valko

In 2018, Chris Dunn survived a freak diving accident that left him paralyzed, mostly blind and on a ventilator to breathe. He spent most of the next year in an ICU in rural Maine.

Unable to see, eat, breathe or move on his own, the 44 year old father and concrete work spent his days in bed listening to the History Channel and hoping for a chance to show he could do more.

Efforts to find a rehab center failed. Even worse, hospital administrators and others were encouraging Chris’s mother Carol to put him in hospice to die. As the article states:

“Drugged up and confined to bed, Chris waited while dealing with a hospital staff that didn’t know what to do with him. ‘There would be nurses that would come in and tell me, ‘You know you’re making your son suffer,’ says Carol. ‘I mean, what’s a mother to do with that?’” (Emphasis added)

However, Carol refused to give up trying to find help for Chris and after 7 months, finally contacted the United Spinal Association. Jane Wierbicky, a longtime nurse and a member of the Association’s Resource Center team worked to help find a rehab center in Atlanta.

Now Chris only uses the ventilator a few hours a night, got outdoors to catch a fish, and returned home to spend Thanksgiving with his mother and girlfriend.

With the help of his mother and a team of advocates, Chris hopes to eventually live in an accessible apartment.

Medical care for Chris was not futile.

Medical Futility

The National Council on Disability defines “medical futility” as

“an ethically, medically, and legally divisive concept concerning whether and when a healthcare provider has the authority to refuse to provide medical care that they deem ‘futile’ or ‘nonbeneficial’. A “medical futility decision” is a decision to withhold or withdraw medical care deemed “futile” or “nonbeneficial.” (Emphasis added)

Because of my professional and personal experiences with disability bias as well as my volunteer work with people with disabilities, I have seen firsthand the potentially lethal effects of medical futility decisions based on disability. I have been writing on this topic for years, most recently on Missouri’s Simon’s Law enacted after the parents of a baby with Trisomy 18 and a heart defect who died later found out that doctors had ordered a “Do Not Resuscitate” and withheld life-sustaining treatment without their knowledge due to a secret medical futility policy at the Catholic hospital treating their son.

Recently, I found out that the National Council on Disability just published a 82 page comprehensive report titled “Medical Futility and Disability “ as part of a five-report series on the intersection of disability and bioethics.

In a letter to President Trump, the Council chairman states that the series:

“focuses on how the historical and continued devaluation of the lives of people with disabilities by the medical community, legislators, researchers, and even health economists, perpetuates unequal access to medical care, including life-saving care.

and notes that:

“In recent years, there has been a push to regulate medical futility decisions on the state and institutional levels. State laws, which vary greatly in their content and approach, define the protections, or lack thereof, of a patient’s wishes to receive life-sustaining treatment. Hospitals have turned to process based approaches, utilizing internal ethics committees to arbitrate medical futility disputes. Despite the increased attention, however, disability bias still finds its way into futility decision making.” (All emphasis added)

The Council identifies four factors that are influencing the futility debate today: “Advanced life-saving medical technology, Changes in healthcare reimbursement, Evolving concepts of patient autonomy and the Rise of the right-to-die movement”.

The report also extensively explores the legal issues and several court decisions involving medical futility like the Terri Schiavo and Haleigh Poutre cases.

State Laws

The Council report also evaluated current state laws regarding medical futility decisions and found only 11 with strong patient protections, 19 without patient protections, 19 with weak patient protections, and 2 with time-limited patient protections.

Further complicating the state laws is the lack of transparency for patients or other family members regarding an institution’s medical futility policies. Hospitals are rarely transparent with their medical futility policies, as in the Simon’s Law case. The report is right when it states that “the disclosure of medical futility policies is essential to providing patients, their surrogates, and their families with the information they need to protect their rights and ensure accountability”.

The Council also notes that “Disability nondiscrimination laws, including the ADA and Section 504 of the Rehabilitation Act, provide a viable, yet largely unexplored vehicle for enforcing the rights of people with disabilities in the medical futility context.”

The report ends with recommendations for Congress, the executive branch, medical and health professional schools, professional accreditation bodies, healthcare insurers and state legislatures to combat the problem of disability bias in healthcare.

Conclusion

One of the reasons I chose to become a nurse decades ago was the strong ethical principles in medicine. We were educated to treat all patients to the best of our ability regardless of race, disability, socioeconomic status, etc. “Quality of life” was something to improve, not judge. The traditional hospice philosophy was to neither hasten nor prolong dying.

But over time, I saw ethics change. As the report itself notes, the advances in technology, changes in health care reimbursement, evolving concepts of patient autonomy and the rise of the right-to-die movement led to radical changes in both law and medical ethics.

The concept of medical futility was no longer limited to medically certain circumstances of treatment ineffectiveness but, all too often, also to the patient’s (and sometimes the family’s) perceived “quality of life”.

Such disability bias is often unrecognized, even by the medical professionals caring for the person, but it is a real bias that must be eliminated in our society.

I admire people like Chris Dunn and his determined mother who show us the possibilities when people with even severe disabilities get a chance to have the best life possible.

Euthanasia deaths are increasing in Alberta.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition.

Similar to other Canadian Provinces, in Alberta the number of euthanasia deaths increased substantially in 2019.

An article by Jason Herring published in the Calgary Herald on January 12, reports on the data published by Alberta Health Services that there were 377 assisted deaths in 2019 up from 307 in 2018, and 206 in 2017 in Alberta. Ontario has had similar increasing numbers of euthanasia deaths.

The Alberta data indicates that there was a 23% increase in assisted deaths in 2019.

The Calgary Herald article is oriented to encouraging more euthanasia. The article quotes Dr. Jim Silvius, the Alberta Health Services lead for the program.

Some physicians who choose not to participate are conscientious objectors with moral opposition to death under medical supervision. But some doctors just don’t feel comfortable with the procedure due to a lack of training. 

“You’re ending a life, and that’s not what we were trained to do,” Silvius said, partially because many doctors weren’t exposed to physician-assisted death in medical school.

Media articles are not examining possible abuses of the law but rather they take the position that euthanasia is increasing.

The Euthanasia Prevention Coalition (EPC) is urging its supporters to participate in the Canadian Department of Justice Medical Assistance in Dying (MAiD) consultation. (Link).

Participate in the Canadian Government MAiD euthanasia consultation

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Guide to answering the MAID consultation questionnaire (Link).

The Euthanasia Prevention Coalition (EPC) is urging you to participate in the Canadian Department of Justice Medical Assistance in Dying (MAiD) consultation questionnaire. 
(Consultation webpage).

The language of the consultation questionnaire is not great, nonetheless, the questionnaire does allow you to leave further comments. (Link to the questionnaire).

Guide to answering the MAID consultation questionnaire  (Link).

Before responding to the questionnaire, it is important to read these important articles to help you respond to the consultation questionnaire:

• Historical: Canadian Senate passed euthanasia law in time for summer break (Link).
• Canada's euthanasia deaths increased by 50% in 2018 (Link).
• Ontario euthanasia deaths are rising quickly (Link).
• UN Disability rights envoy urges changes to Canada's euthanasia law (Link).
• Québec court expands euthanasia law by striking down the terminal illness requirement (Link).
• Physically healthy depressed man died by euthanasia in BC (Link).
• Ontario doctor experiences abuse of euthanasia law (Link).
• Québec Fourth Interim Euthanasia Report, 13 deaths did not comply with the law (Link).
• BC Health Minister orders Delta Hospice to do euthanasia by February 3 (Link).

California Governor wants to make California a ‘No Kill State’ — for Animals (but Not People)

This article was published by National Review online on January 13, 2020

Wesley Smith

By Wesley J Smith

Misplaced priorities are California’s specialty. Here’s an example: Governor Gavin Newsom wants to end euthanasia in animal shelters. From the Sacramento Bee story:

Gov. Gavin Newsom wants California to stop euthanizing animals, and he’s ready to put taxpayer money toward the cause. “We want to be a no-kill state,” Newsom said during a press conference where he presented his 2020-21 budget. 

Specifically, Newsom’s budget calls for a $50 million one-time general fund allocation to the UC Davis Koret Shelter Medicine Program to develop a grant program for animal shelters, with a goal of helping local communities “achieve the state’s policy goal that no adoptable or treatable dog or cat should be euthanized,” according to the budget summary.

Ironically, as the governor works to save animals from death, California not only legalized assisted suicide but allows encouraging suicide to the terminally ill, and moreover, promulgated a regulation granting access to doctor-prescribed death to dying patients who are involuntarily committed in psychiatric hospitals due to mental illness.

I am certainly not against “no kill” animal shelters. I just wish Newsom were as committed to promoting “no kill” health care.

Massachusetts court explains why assisted suicide should be prohibited.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

A Massachusetts Superior Court decision that was released on Friday, January 10 concluded that there is no right to assisted suicide in Massachusetts.

• Massachusetts court rules there is no right to assisted suicide (Link).

This is not the first decision of its type in the United States, in fact there have been several cases that were simply dismissed by the court, while others were heard and also found that there is no right to assisted suicide.

In its decision, the Massachusetts court explained why the Commonwealth prohibition on MAID meets the rational basis for both due process and equal protection. Starting on Page 20 of the decision, the court explains why assisted suicide should not be legalized. The decision states (edited):

First, the Legislature could rationally conclude that difficulty in determining and ensuring that a patient is "mentally competent" warrants the continued prohibition of MAID. There is expert testimony in the record that many patients faced with a diagnosis of terminal illness are depressed, that this depression and accompanying demoralization may interfere with their ability to make a rational choice between MAID and other available alternatives, and that most Massachusetts physicians are unaware of the best practices in responding to requests for MAID given this context... There is also evidence that the problem of competency is particularly acute at the time at which a patient self-administers the medication because patients may be alone or accompanied by those who support his or her end-of-life decision... In such a situation there is a great risk that temporary anger, depression, a misunderstanding of one's prognosis, ignorance of alternatives, financial considerations, strain on family members or significant others, or improper persuasion may impact the decision. The concern that the decision will be motivated by financial considerations are potentially heightened when MAID is being used by members of disadvantaged socio-economic groups.

Second, the Legislature could rationally conclude that predicting when a patient has six months to live is too difficult and risky for purposes of MAID, given that it involves the irreversible use of a lethal prescription. The Commonwealth put forward expert testimony that while doctors may be able to predict death within two or three weeks of its occurrence, predictions of death beyond that time frame are likely to be inaccurate. 

Third, the Legislature could rationally conclude that a general medical standard of care is not sufficient for those seeking MAID. The Commonwealth put forward expert testimony that MAID "is neither a medical treatment nor a medical procedure and thus there can be no applicable medical standard of care" and that "the legalization of MAID is an attempt to carve out a special case outside of the norms of medical practice"... The Commonwealth also put forward evidence that regulating MAID is difficult even where statutory standards, such as those in Oregon, are in place. Its expert opined that: "Data collected in Oregon paints a picture of patients receiving MAID for whom alternative approaches have not been exhausted. Psychological referrals are scant. The cited basis for requests largely consists of problems that are manageable via palliative care and hospice. What Oregon officials do not do is monitor the actual process for terminating patients yet the data that is available is troubling.

Finally the Commonwealth produced expert testimony that the permissible end-of-life alternatives potentially involve far less risk than MAID because they occur in hospitals or other institutions devoted to medical treatment and involve numerous physicians and staff personnel, which together provide an environment that lends itself to oversight and responsibility... MAID, on the other hand, potentially takes place in an uncontrolled environment, without assurance that the patient will administer the medication when close to death and without physician oversight.

The Massachusetts court decision recognized the difficulty in accurate patient assessment to approve MAID, which is an irreversible decision. The court decision challenged the concept that MAID is a form of medical treatment and pointed out that, even in Oregon the oversight of the law is questionable at best.

Finally, the Massachusetts court found that oversight and control of assisted suicide laws are lacking. The risk related to assisted suicide is great.

The assessment by the Massachusetts court should be taken seriously by legislators who are considering assisted suicide bills. Assisted suicide is neither safe nor effectively controlled.

Massachusetts court rules there is no right to assisted suicide.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

A Massachusetts Superior Court decision that was released on Friday, January 10 concluded that there is no right to assisted suicide in Massachusetts.

• Massachusetts court explains why assisted suicide should be prohibited (Link).

This is not the first decision of its type in the United States, in fact there have been several cases that were simply dismissed by the court, while others were heard and also found that there is no right to assisted suicide.

WBUR news in Massachusetts published a report by Martha Bebinger and Carey Goldberg explaining the ruling in the civil case brought by Dr. Roger Kligler, a retired Cape Cod physician who has advanced prostate cancer, and Dr. Alan Steinbach, who treats terminally ill patients.

Bebinger and Goldberg explained:

The new ruling affirms that assisted suicide can be considered manslaughter, even if the patient self-administers the lethal medication without help from the doctor. 

It also rejects the claims that the manslaughter law is too vague as applied to aid in dying, and that it is unfair to treat patients who take drugs to die differently from patients who stop eating and drinking to die. 

The ruling concludes by noting that there's a strong consensus that the issue of medical aid in dying is best decided by lawmakers, not judges, and that there are strong arguments both for and against it. 

"The legislature, not the court, is ideally positioned to weigh these arguments and determine whether and if so, under what restrictions, [medical aid in dying] should be legally authorized," Superior Court Justice Mary Ames wrote.

Therefore the court concluded that there is no right to assisted suicide in Massachusetts and acts of assisted suicide will be prosecuted as manslaughter.

Isle of Man to debate assisted suicide motion this month.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

The Isle of Man, which is a self-governing territory in the Irish Sea between England and Ireland, will be debating an assisted suicide motion this month. Politics home published a media release by Dignity in Dying on January 10 which stated:

The Parliament of the Isle of Man, Tynwald, has announced that it will debate assisted dying at its January sitting, which begins on the 21st of January 2020. 

Dr Alex Allinson, Member of the House of Keys (MHK) for Ramsey, brought the following motion, which will be debated at the January sitting of Tynwald: “That Tynwald is of the opinion that legislation to allow for voluntary assisted dying should be introduced”. The debate does not involve specific proposals for legislation at this stage.

Dignity in Dying has failed on many occassions to legalize assisted suicide in the UK and is now attempting to give doctors in the Isle of Man the right to assist the suicide of their patients, as a beachhead into the UK. The Isle of Man needs to recognize how they are being used as pawns in the assisted suicide debate.

Hawaii: 27 people died by assisted suicide in 2019.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

An article by Brittany Lyle that was published in the Honolulu Civil Beat on January 9, 2020 stated that in 2019 Hawaii had 27 assisted suicide deaths.

The article focuses on the assisted suicide lobby wanting to remove restrictions in the assisted suicide law. For instance the article suggests that Hawaii needs to amend the assisted suicide law to allow doctors to waive the waiting period. In 2019, Oregon expanded its assisted suicide law by allowing the waiting period to be waived.

The article also suggests that Hawaii needs to remove the mandatory mental health competency exam in the law.

It is significant that no doctors in Maui are willing to prescribe the assisted suicide drug cocktail. Most doctors oppose assisted suicide.

This media article was overwhelmingly pro-assisted suicide. The assisted suicide lobby is pushing to expand the Hawaii assisted suicide law, even though the law only came into effect one year ago.

Last January the leader of one of the assisted suicide lobby groups stated that it was there goal to eliminate the regulations in the assisted suicide laws in America.

Indiana assisted suicide bill may permit euthanasia (homicide).

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Indiana House Bill 1020 is sponsored by State Rep Matt Pierce (D) and was introduced on January 7.

House Bill 1020 claims to legalize assisted suicide, but the bill could be interpreted wide enough to permit euthanasia (homicide).

For instance, Section 3. (a) (5) of the bill states that:

has voluntarily expressed to the attending physician a wish to receive medical aid in dying; may make a written request in accordance with this chapter for medication that the patient may self-administer to end the patient's life.

The assisted suicide request form, in the bill, that is designed to be signed and witnessed states:

I request that my attending physician prescribe medication that I may self-administer to end my life in a humane and dignified manner and that the attending physician contact a pharmacist to fill the prescription.

You will be told that may self-administer means that the person may change their mind. Using the term, may self-administer, can be interpreted to mean that the legislation allows someone else to administer the lethal drug cocktail.

It is important to note that one of the witnesses can be an heir. 

The bill requires the physician state on the death certificate that the cause of death is the person's medical condition and not assisted suicide.

The bill also uses a self-reporting system that enables assisted suicide doctors to cover-up questionable deaths.

The bill requires, the attending physician to approve and prescribe the lethal drug cocktail and then report the death after the person dies by assisted suicide. Once a person is dead, who will ever know if something illegal occurred?

The legislation provides a reporting system that allows abuse of the law. No third party is required to approve or report the death, and no one is required to witness the death, to ensure compliance with the law.

Just to ensure that the assisted suicide physician is protected under the law, the legislation only requires that the physician was in "good faith". It is absurd that only a "good faith" compliance is required for a physician to prescribe a lethal drug cocktail.

House Bill 1020 does recognize that these deaths may take a long time. It states that the patient must expect that the death will take 3 hours, but it might take longer.

Recent experimental lethal drug cocktails have resulted in painful drawn out deaths. People have reported that the drug cocktails have burned the persons mouth and throat causing them to scream in pain. The length of the death is usually a few hours, but some of the deaths have taken 30 hours.

Death with dignity? I think not.

Tom Koch: Euthanasia is legal in Canada but that doesn't make it ethical.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

The Delta Hospice Society in BC was recently told by Adrian dix, the BC Minister of Health, that they must start doing euthanasia by February 3 or loss provincial funding. In response to this dilemma Dr Tom Koch, a consulting medical ethicist and gerontologist and author of the book Ethics in Everyday Places, wrote an opinion article that was published in the Globe and Mail on January 6.

• Sign the petition: Hospice Organizations Must NOT be Forced to do Euthanasia (Link).

Koch begins:

Because something is legal doesn’t mean it is ethically acceptable or, in medicine, clinically appropriate. The debate swirling over the Delta Hospice Society’s refusal of medical termination, “medical aid in dying” (MAID), in its beds is an example.

Diagnosed with terminal cancer, Clint Gossard, 59, hoped for a bed at the society’s 10-bed Irene Thomas Hospice in Delta, B.C. But he also wanted what they refuse to permit: medical aid in dying. For that, he had to go to Delta Hospital where his life was ended last January.

His widow and MAID advocates found that unacceptable. As a result, B.C. Minister of Health Adrian Dix has threatened the society’s funding if they don’t permit medical termination on their premises. Hospices I know elsewhere are similarly under pressure.

Koch explains that assisted dying is not part of hospice or palliative care. He writes: 

Speaking for the Delta Hospice Society, its founder and former director, Nancy Macey, argued not only that MAID violates the hospice’s constitution but the goals of palliative and hospice care. The society’s position is shared by many including those, like me, who are at best agnostic. Instead, it follows the guidelines in this area.

In November, 2019, for example, the Canadian Hospice Palliative Care Association (CHPCA) and the Canadian Association of Palliative Care Physicians (CAPCP) issued a joint statement stating categorically that “National and international hospice palliative care organizations are unified in the position that MAID is not part of the practice of hospice palliative care."
Medical aid in dying, they argued, is not an “extension of palliative care” but a violation of hospice and palliative medical goals of care.

Koch goes on to explain that good palliative care is not a simple process:

In its focus on the best of life to the end of life, hospice practice requires an understanding not only of clinical but also psychological needs. I have several times been engaged in discussions with those who wanted to die because of problems, clinical, personal or social, that were then addressed by palliative caregivers. In these cases, “I want to die” was really “I need help with this.”

A simple "it's your choice" removes our opportunity to find and provide the necessities of an acceptable life to the end of a patient's days. It replaces complexity with a simple, “Well, they wanted it” even where the reasons for wanting could be palliated.

Koch concludes by stating that he believes that Mr. Dix’s threat seems to violate the spirit if not the letter of enabling federal legislation that assured the rights of practitioner conscience would be protected.

Swiss prisoner convicted of child rape is being considered for assisted suicide.

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

Peter Vogt

A Swiss prisoner convicted of sexual assault and rape of girls and woman ranging in age from 10 to 56 is being considered for death by assisted suicide.

An AFP news article by Agnès Pedrero reported that Peter Vogt (69) who has been diagnosed with several psychological disorders and reportedly lives with health issues related to his kidney and heart, contacted the assisted suicide group Exit, and is being considered for assisted suicide. Vogt has been declared a dangerous offender and is unlikely to be released from prison.

Pedrero reported that Vogt responded to his questions by writing:

"It is natural that one would rather commit suicide than be buried alive for years to come" 

"It would be better to be dead than to be left to vegetate behind these walls"

Switzerland outlawed capital punishment in 1942.

• What’s Cruel for the Incarcerated is Cruel for the Terminally Ill: The Connection between Lethal Injection and Assisted Suicide.

Pedrero reported that the Swiss Centre of Expertise in Prison and Probation Foundation studied the issue and responded by supporting assisted suicide for prisoners.

According to Pedrero, Barbara Rohner, lead author of the foundation's report, stated:

assisted suicide rights should apply to prisoners under certain conditions, noting that in cases of mental illness two independent specialists should be consulted. 

Any detainee possessing discernment should, in principle, have assisted suicide rights if they have "a physical or mental illness resulting in unbearable suffering,"

The foundation also recommended that authorities responsible for the prisoner's welfare must ensure the suicide request is not the result of a short-term emotional crisis.

Vogt told Pedrero that his "quality of life" is unbearable:

Vogt insisted that he wanted to die because of the "unbearable" deterioration in his quality of life, along with the fact that he can no longer see his gravely ill mother, who lives in Austria.

Vogt may be the first Swiss prisoner to request death by assisted suicide but his request is leading to more prisoners requests.

Once a society accepts that killing is an acceptable response to human difficulties, then killing will become acceptable for other forms of human difficulty.

Euthanasia pushed as boon to Organ Donation.

This article was published by National Review online on January 6, 2020.

Wesley J Smith

By Wesley J Smith

My very first anti-euthanasia column, published in Newsweek, warned that societal acceptance of assisted suicide/euthanasia would eventually include organ harvesting “as a plum to society.” I was called an alarmist and a fear-monger, but alas, I was right. In Belgium and the Netherlands, mentally ill and disabled people are killed in hospitals at their request, and then, their bodies are harvested — with the success of the procedures written up with all due respect in organ-transplant medical journals.

Our closest cultural cousins in Canada are enthusiastically following the same utilitarian path, not only allowing organ harvesting to be conjoined with euthanasia, but “medically assisted death” is being boosted increasingly as “a boon.” Note the celebratory lede in this Ottawa Citizen story:

Ontarians who opt for medically assisted deaths (MAiD) are increasingly saving or improving other people’s lives by also including organ and tissue donation as part of their final wishes. 

In the first 11 months of 2019, MAiD patients in the province accounted for 18 organ and 95 tissue donors, a 14 per cent increase over 2018 and a 109 per cent increase over 2017. (Figures for December 2019 are not yet available.) 

According to Trillium Gift of Life Network, which oversees organ and tissue donation in Ontario, the 113 MAiD-related donations in 2019 accounted for five per cent of overall donations in Ontario, a share that has also been increasing. In 2018, MAiD-related donations made up 3.6 per cent of the province’s total donations, and in 2017 just 2.1 percent.

Many of these killed organ donors will not have been imminently dying. They will also generally not have been provided suicide-prevention services as the suicidal ill and disabled who ask for euthanasia are increasingly abandoned to the “death with dignity” mindset in Canada.

It doesn’t even have to be the patient’s idea. Trillium Gift of Life Network, Ontario’s donation organization, actively solicits the organs of those soon to be killed by doctors!

Canada decriminalized medically assisted death in 2016, and Ontario, through Trillium, immediately moved to the forefront of organ and tissue donation through MAiD, becoming the first jurisdiction in the world to proactively reach out to those who had been approved for assisted death to discuss donation.  When a death is imminent, whether through a hospital or MAiD, Trillium must by law be notified. 

“And, as part of high-quality end-of life care, we make sure that all patients and families are provided with the information they need and the opportunity to make a decision on whether they wish to make a donation,” [Trillium CEO Ronnie] Gavsie says. “That just follows the logical protocol under the law and the humane approach for those who are undergoing medical assistance in dying. And it’s the right thing to do for those on the wait list.”

The clear message being sent to suicidal ill and disabled Canadians — with the active support of the organ transplant community — is that their deaths can have greater value to Canada than their lives. In other words, organ donation as an offshoot of euthanasia has indeed been defined “as a plum to society.”

Someday, Canada will probably dispense with the euthanasia part altogether and go straight to killing by organ harvesting — already being proposed bioethics and medical journals. That would make for more viable organs, don’t you know. Once one gets past what bioethicists denigrate as “the yuck factor,” there is indisputable logic to that idea, which we could call fruit from a legally poisonous tree.

Those with eyes to see, let them see.

Conference (January 14): Fighting assisted suicide in New York.

This article was published by OneNewsNow on January 6, 2020.

Opponents of assisted suicide are organizing to fight the legalization of the practice in New York.

The New York Legislature will soon debate on whether the state will make it legal for doctors to prescribe lethal drugs to assist a person in taking his or her own life.

"Sadly, the push in New York is but one of the strongest in the nation," Alex Schadenberg of the Euthanasia Prevention Coalition tells OneNewsNow. "The governor has stated that he wants assisted suicide legalized. There's a bill that's ready to go. They also have a situation where recently New Jersey has legalized assisted suicide."

The neighboring state's law went into effect last summer. But while proponents have momentum, so do the opponents. Schadenberg will be hosting an event later this month at the state capitol to organize and focus the latter group.

"The January 14th event is featuring quite a few people from different perspectives, but the fact of it is there's physicians, there's people with disabilities, there's legislators, there's people who are going to be opposing assisted suicide," the Coalition leader asserts.

Schadenberg has 20 years of experience of clearly indicating the fallacies of assisted suicide, including in Oregon, where the laws dealing with the practice are not enforced. Still, it is legal in a total of seven states and Washington, D.C.

Simon Stevens: Hospitals, eugenics and assisted suicide.

This article was written and published by Simon Stevens, disability consultant and activist, on January 2, 2020.

As an internationally recognised disability consultant, trainer and most importantly, activist, I have always strongly opposed all forms of eugenics.

In 1995, aged 21, I was endlessly watching about parents wanting to kill their young son with cerebral palsy and in frustration I rang the news service, ITN, demanding they interview me, and they did! So that evening the UK saw a young drooling spastic putting his foot down on an issue he remains passionate about.

I oppose infant euthanasia or ‘mercy killings’ as everyone has a place and purpose that has to be valued as it may be unpredictable in what is achieved.

I find the idea of someone with an impairment label who remains healthy requesting that state assists them on a date they chose to commit suicide as a selfish and immoral act. Dignitas in Switzerland is no better than a Nazi gas chamber.

Where my views become grey is in terms of true end of life care. I was always for ‘do not resuscitate’ until I understood the damage it can cause when I sat on a research committee.

End of life means to me people who are facing death where there is no hope of recovery. I believe in his situation, as activists, we should be respectful.

Background

I am 45 and have significant cerebral palsy that affects all my life, specifically my speech and mobility. I also have mild bipolar, nerve pain, asthma and likely stuff I forgotten.

My curse is being hyper intelligent in a spastic body. Imagine thinking like Sherlock Holmes and looking like you have severe learning difficulties. My master weapon is my words in emails and articles which I call my art.

I have been a disability consultant, trainer and activist most of my life, something that has been natural to me. I remain amazed at what I have achieved and the opportunities I had, like this article. But my best achievements have been helping others in small ways no one sees.

My highs have been matched with my lows. Abusive parents, bullying at normal school, periods of depression and very ill health.

At 45, in a body doctors do not understand, my health, which has included 2 times in critical care in 2019 with two comas, has led me to reflect.

Meeting Death

In this section, I am going to discuss death as a metaphoric man.

I first met death during my birth due to brain damage from a lack of oxygen. In another era I could easily be still born. The doctors told my mother I would only last 3 days or be a ‘cabbage’, yet here I am at 45 as someone who considered inspiring.

The second time I met death was when I was 33 when I had the symptoms of Gullian Barre Syndrome. Due to my cerebral palsy, which can a varied in severity for each person, it took a few weeks to understand, when I was now paralysed from the navel it was taken seriously, as I demanded the paramedics take me to hospital despite their protests.

When the appropriate doctor saw me, her jaw dropped as she understood the severity. That night I was constantly monitored by a nurse as I was administered life-saving medicine while death watched in the corner. It took 2 more weeks in hospital and six months intensive physio-terrorism until I was restored to myself as a drooling spastic.

I always understood as someone with now complex health issues that my lifespan would be shorter.

I do not fear death as I lived so well. I value the opportunities I had and the norms I have broke.

At 45, and during the past year, my health has involved talking to death I am unsure what is ahead.

I feel death has now confirmed when and how I will die and that’s fine because I really lived. I know he will never disclose the details to me, and I find my survival this year interesting.

I feel it is wrong to try to shorten or prolong your life from what death has in mind. As someone that has been close to death too many times and did not know until 2 weeks later when my personal assistant told me that I was in a 11 day coma followed by a 2 day coma, I remain confused to how I survived.

Hospitals

So now, we discuss the heart of the matter.

I will discuss my experiences of UK hospitals although I have been unwell in Nigeria (my first overnight admission due to gastroenteritis aged 20 and yes, wtf) and Prague (just food poisoning).

In recent years my visits have been more frequent and more worrying. My chest is constantly impaired although it is hit and miss as to how hospital treats it. One time it could result in a coma and intensive therapy, another time I am told at 4 am clinging on the trolley trying not to wet myself, knowing asking someone for help as ‘in a minute’ pointless, to go home.

Hospitals are the worst place to be unwell, which is ironic. The first problem is the paramedics refuse to take my manual wheelchair, let alone my electric chair, forcing me to bed bound and by default double incontinent which is unpleasant when staff have not earned your trust have to change you.

I find hospital a harsh environment where politeness is the only form of control I have to manage my situation as someone assumed to lack intelligence, any hostile behaviour will mean labels are placed on me. I need to just lie here and take mental pictures for the email complaint I will write when I am safely in my own home. I often stare at people quietly thinking to myself they have no idea what mistakes they have made and who they are addressing.

If you think as one friend recently put ‘you are the toughest person I know’, hospital must be hard work for different people with different situations. For myself, nappies/diapers/pads are a normality and employing personal assistants for 27 years allows me to accept a lack of privacy. For others, it will be the first time they have to experience such difficulties.

Therefore, their experiences or fears of hospitals may attract them to assisted dying to avoid the humiliation to themselves and their families. I have been in situations where a stiff upper lip was needed as four nurses were needed to change my dirty pad.

Summary

As activists, we should not berate those individuals asking for assisted suicide as they are often being used by specific charities to promote the cause. On the other hand. I am against senior disabled activists who claim to support our existence but reject a government committed who believe disabled people can make a contribution in society, openly preferring we were left on the scrapheap while the left wing organisations demanding to represent us drink champagne funded by the government.

It is interesting that during the last time the parliament had a vote on assisted suicide Cameron’s Conservative government’s cabinet, who many activists saw as the bad guys, were instructed to oppose the bill on a free vote. I was pleased my Labour local MP came and talked to me in a lobby (supposedly part of the good guys) at Parliament House until he refused to look at me in the face and tell me I had a right to exist. It still hurts as it was a simple request.

I leave this complex and personal article with two requests.

Firstly, lets accept everyone has a right to live and be fully contributing citizens regardless of their background or abilities. We need to focus on inclusion and accessibility in all aspects of society instead of rights and entitlements that are label based. Everyone deserves to have their personal needs and outcomes supported appropriately as their life changes to help avoid the frustrations that lead to suicidal desires.

Secondly, we need to all work together to make hospitals friendly and safer places that no one fears. This is a part of understanding their always forthcoming death and own it, without trying to bow out from the date set by a higher power planned.

I have felt suicidal a few times due to my environment at those times. While it may be strange to some, I don’t want to be ‘cured’ as it would be a distressing event where my identity would be lost, that may take months or years to recover from.

I hope my rumblings offers a very personal experience of eugenics to contribute to the discussions needed.

• Other articles by Simon Stevens. (Link).

Belgium euthanasia death linked to loneliness.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Brecht Paumen, who was paralyzed for 12 years after a swimming pool accident, died by euthanasia in Belgium last Friday.

The Belgian media emphasize his disability and his pain, but a closer read of the story links his death to loneliness and isolation.

An article by Marco Mariotti that was published by HLN quotes Paumen's mother as saying (google translated):

“For four years he lived alone in As. He hoped that friends would come to visit him that way. But unfortunately that did not happen. The home nurse, all adapted devices, you name it. Only the loneliness can hardly cope when the environment drops out. We suggested coming home again, but he refused. And he felt a burden to his parents. Often humiliating circumstances. Then he cried so often. "

In the past year he was trying to regain his ability to walk with assistance, but the article states that he had a set-back in November and December.

Studies show that people who are depressed, lonely or experiencing feelings of hopelessness are far more likely to ask for euthanasia.

A Netherlands study by Marije L van der Lee, et al, found that people who were depressed or had “feelings of hopelessness” were 4.1 times more likely to request euthanasia. This study was significant since van der Lee supported euthanasia and her hypothesis stated: “their clinical impression was that requests for euthanasia were based on well-considered decisions and not depression in the Netherlands.”

In other words, van der Lee was trying to prove that depression was not connected to requests for euthanasia but instead proved that the opposite is true.

In 2011, the Dutch Medical Association (KNMG) stated that euthanasia for loneliness, depression, disability and dementia were possible. 

A few years ago the Netherlands euthanasia clinic was reprimanded for lethally injecting a woman because she didn't want to live in a nursing home.

This sad story brings up two key points.

1. It was normal for Paumen to feel lonely and a loss of purpose. Even if you support euthanasia, loneliness should not be a reason for death by lethal injection.

2. The attitude towards euthanasia of people with disabilities is paternalistic. The article refers to his death as "redeeming" and his mother is quoted as saying that she is "relieved" for her son. I am not suggesting that his mother didn't love him, but Paumen needed support not pity.

Paumen's death is tragic, but once killing becomes an acceptable solution to human difficulties then the clear line has been crossed.

Paumen needed human friendship and support not death, but death is what he received.

Making it up as they go: Falsifying Vermont death certificates

This article was published by the Australian Care Alliance on January 2, 2020.

• Vermont: 28 people reportedly died by assisted suicide in the past two years.

As reported in a previous blog on the latest report on deaths by assisted suicide in Vermont, the report states:

100% of the death certificates listed the appropriate cause (the underlying disease) and manner of death (natural), per Act 39 requirements.

This is a curious statement as Act 39 as passed by the Vermont legislature and in force does not include any such requirement.

This matter was raised with the Vermont Department of Health. The reply seems to confirm that when it comes to reporting on assisted suicide officials simply make it up as they go along.

In reply to this query:

Page 2 of your report states:

"All 34 events have a death certificate on file with the Vital Records’ Office. One hundred percent of the death certificates listed the appropriate cause (the underlying disease) and manner of death (natural), per Act 39 (2013) requirements."

The reference to "Act 39 (2013) requirements" seems to be misleading as while there was a provision to this effect in S77 as introduced into the Senate this provision was deleted and does not form part of Act 39 of 2013 (Chapter 113, Title 18 of the Vermont Statutes).

On the face of it in the absence of such a provision deaths certificates in these circumstances should be handled in accordance with the provisions in 18 V.S.A. § 5205 or elsewhere in Chapter 107, Title 18.

Could you please advise if there is some other legal authorisation for the completion of a Vermont

death certificate in the event of a death following ingestion of a lethal poison, albeit in apparent accordance with the provisions of Chapter 113, Title 18 of the Vermont Statutes, recording the manner of death as natural and the underlying condition as the sole cause of death with no reference to the effect of the lethal poison in causing that death?

The official reply from the Vermont Department of Health reads:

18 V.S.A. § 5293(a) states, "Except as otherwise required by law, information regarding compliance shall be confidential and shall be exempt from public inspection and copying under the Public Records Act." In addition, decisions made between patient and doctor are protected health information under both state and federal privacy laws. If a death certificate were to make reference to a prescribed dose under Act 39, it would be visible to the public and therefore violate both general and specific provisions of state law. A physician listing the underlying disease and manner of death [as natural] is both appropriate and preserves the confidentiality due the patient.

This reply is extraordinary.

Firstly, 18 V.S.A. § 5293 deals with the information collected and reported on pursuant to the Rule which makes no reference whatsoever to death certificates. It does however refer to the cause of death in requiring the prescribing physician to specify in a follow up form.

Whether the patient died as a result of the ingestion of the prescribed dose; as a result of the underlying disease; or whether the cause is unknown to the physician.

The legislative history of Act 39 indicates that the legislature considered but rejected an explicit provision mandating the falsification of death certificates for deaths following ingestion of a lethal poison prescribed under its provisions:

See the struck out paragraph on p.10 of the Bill as passed by the Senate and House which read:

Notwithstanding any other provision of law to the contrary, the attending physician may sign the patient’s death certificate, which shall list the underlying terminal disease as the cause and manner of death.

An alternative provision was proposed but later withdrawn:

The patient’s death certificate shall list the underlying terminal disease as the cause of the death and shall list the manner of death as natural.

It is alarming that the unelected officials of the Vermont Department of Health are choosing on their own authority to not just act as if this latter proposal was the law in Vermont but to brazenly claim that it is in an official report to the legislature and to praise physicians for their 100% compliance falsifying Vermont death certificates in accordance with unfounded statement of the law.

The general instructions to physicians regarding the accurate completion of death certificates place great emphasis on the importance of a comprehensive recording of ALL the causes contributing to a death.

Certify the cause of death as accurately as possible.

The manner of death describes the circumstances surrounding the death. In Vermont and in most of this country there are only 5 choices:

• Natural
• Accident
• Suicide
• Homicide
• Pending Investigation (only available to medical examiners)
• Could Not Be Determined
• All cases that are not due exclusively (100%) to natural disease MUST, by law, be reported to the Medical Examiner's Office (1-888-552-2952). If an injury in any way contributes to the person’s death, no matter how long ago that injury was sustained, the death is not considered natural.

Stated very simply, a cause of death is the disease or injury responsible for starting the lethal sequence of events which ultimately lead to death. A competent cause of death must be as etiologically specific as possible. Etiologically specific causes of death are the disease entities studied in basic pathology courses

The mechanism of death is the altered biochemistry or physiology whereby the cause exerts its lethal effects. Mechanisms are not specific and can NEVER replace or substitute for a cause of death. Mechanisms can never stand alone on a death certificate and always need an underlying cause of death. Always ask yourself what the mechanism is due to in order to find the underlying cause of death.

Medical judgment and common sense are required for certifying the cause of death.

Truthfulness, completeness, and reasonable accuracy should be the goal. Convenience and expedience should not play a role when certifying causes of death.

Unless of course it is under an assisted suicide law when:

medical judgement, commonsense, truthfulness, completeness and reasonable accuracy must all GIVE WAY to the convenience and expedience of falsifying public records to pretend that deaths by the ingestion of a lethal poison are entirely natural.