Man who filled out federal government's MAID survey 68 times questions its validity

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Last week I reported that the Canadian (MAID) euthanasia consultation questionnaire was a sham and the data was unreliable.

Marian Klowak reported for CBC News that she interviewed one man who filled-out the questionnaire 68 times and questioned the validity of the survey. Klowak reported:

Ken wanted to know how far he could push the virtual envelope — so he filled out a federal government survey on medical assistance in dying 68 times. 

Ken, whose name the CBC isn't publishing because he fears threats or harassment, decided last month to see whether he could fill out the online MAID survey more than once. 

Ken took screen shots of 50 of the 68 surveys he filled out, with dates and times, as proof. 

He even filled the survey out on Jan. 28, a day after it was supposed to close, he said. 

"I wanted to see how far this could go without being shut down," he said.

Curtis Brown with Probe Research in Winnipeg told Klowak:

"A public consultation survey like this one is designed to get people's feedback and it is quite open and people have a lot of opportunities to weigh in," he said. 

"That means they may respond more than once if they really feel passionate about a particular issue." 

The other kind of survey is statistically valid, questioning a number of people and making sure that group reflects the larger population.

The Justice Department told Klowak that the questionnaire was more of a consultation and not a survey. Ken questioned whether or not 300,000 people actually participated in the questionnaire, as claimed by the Justice Department.

Klowak interviewed Jim Cowan, the chair of the euthanasia lobby group, Dying with Dignity who stated:

I am concerned people could respond more than once. I believe if you are going to do polling and having consultations, you want to make sure they are as active and reflective as they can be," Cowan said. 

"If a few people did vote more than once, that doesn't affect the validity of the overall result."

Alex Schadenberg

Klowak also interviewed Alex Schadenberg (myself) from the Euthanasia Prevention Coalition stated:

"The data in this survey was unreliable because it did not control the number of times a person could respond," he said. 

"On top of that, quite a few of our supporters refused to fill it out because when they opened up the questionnaire, they felt a lot of the questions were not written in a neutral manner."

Whether or not the Justice Ministry intentionally enabled people to vote 68 times on the "MAID" consultation the questions were written in a biased manner, people refused to participate in the consultation because of the wording of the questions and the Justice Minister claims that the consultation proves that Canadians want euthanasia expanded.

I conclude that the Canadian (MAID) euthanasia consultation questionnaire was a sham and the data was unreliable.

Maryland assisted suicide bill may permit euthanasia.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

In 2019, the Maryland assisted suicide bills passed in the House by a vote of 74 to 66 but failed in the Senate by a vote of 23 to 23.

In 2020, the Maryland assisted suicide House Bill HB 0643 and Senate Bill SB 701 may permit euthanasia. Most of the new assisted suicide bills have loose language to allow a wider interpretation.

The Maryland bill is designed as an application process for obtaining a lethal dose. Most assisted suicide bills state that the person self-administer the lethal dose, making it an assisted suicide.

The Maryland assisted suicide bill does not require the person to "self-administer" the lethal drugs but rather the bill says "may self-administer."

You may be told that "may self-administer" means that the person may change their mind. The term, may self-administer means that someone else can administer the lethal drug cocktail, allowing euthanasia or homicide.

When examining the bill further the potential for euthanasia becomes more clear. The assisted suicide bill § 3–103 states:

A licensed health care professional does not violate § 3–102 of this subtitle BY TAKING ANY ACTION in accordance with Title 5, Subtitle 6A of the health – general article.

The Maryland assisted suicide bill allows another person to administer the lethal drugs, which is euthanasia, and it provides full legal protection for the Health Care Professionals who do so.

Another addition to the recent assisted suicide bills is the acknowledgement that it may take at least 3 hours to die.

Current lethal drug cocktails may cause painful assisted suicide deaths that can take many hours to die.

For more than a year, the assisted suicide lobby has focused on eliminating "safeguards" in assisted suicide legislation.

Assisted suicide lobby researchers are working on their third generation of lethal drug cocktails. The results of the first two experimental lethal drug cocktails were:

The (first) turned out to be too harsh, burning patients’ mouths and throats, causing some to scream in pain. The second drug mix, used 67 times, has led to deaths that stretched out hours in some patients — and up to 31 hours in one case.

The first two lethal drug cocktail experiments failed to provide a painless, fast death. 

People who participate in these lethal drug experiments have consented to ingesting the lethal drugs, but are they consenting to participate in human experimentation?

Switzerland approves assisted suicide for prisoners.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

The Swiss Cantonal Departments of Justice and Police have approved assisted suicide for prisoners after a Swiss prisoner convicted of sexual assault and rape of girls and woman was considered for death by assisted suicide.

Capital Punishment is illegal in Switzerland.

The Swiss media organization, Local.ch, reported that

Switzerland's cantons, which implement prison sentences, have agreed "on the principle that assisted suicide should be possible inside prisons," the Conference of Cantonal Departments of Justice and Police said. 

Conference director Roger Schneeberger told AFP that there were still differences between cantons on how assisted suicides could be carried out in prisons and a group of experts would issue recommendations by November.

Peter Vogt

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

Vogt may have been the first Swiss prisoner to request death by assisted suicide but his request led 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.

Ipsos / Dying With Dignity online poll was skewed.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Ipsos and Dying With Dignity (DWD) conducted an online opinion poll showing strong support for expanding Canada's euthanasia law to include incompetent people who previously requested and dropping the terminal illness requirement for euthanasia and assisted suicide in Canada. 

Online polls are done by sending questions to a select group of online participants. Each question includes an explanation of the question with further information connected to the poll provided by the sponsor of the poll. Online polls enable special interest groups to have greater support for their position in the poll.

The Canadian Healthcare Network commented on the Ipsos / DWD poll by stating:

The online survey of 3,500 Canadians was conducted by Ipsos from Jan. 21 to 27, a period that overlapped with the government’s own consultations. 

Internet-based polls cannot be given a margin of error because they are not considered random samples. 

Dying with Dignity Canada is a national non-profit advocacy group that champions end-of-life rights.

March 21 - 24, 2016 Angus Reid did a scientific poll where they found that the majority of Canadians oppose many of the recommendations in the Special Joint Committee on Physician-Assisted Dying report (report).

The report of the Special Joint Committee recommended wide-open rules for euthanasia but the survey found that the majority oppose "assisted death" for most reasons. 

For instance, the survey found that 78% of Canadians opposed euthanasia for people with severe psychological suffering but no terminal illness.The Angus Reid survey also  found that support for assisted death was limited based on circumstance: 

• 36% support when a person with multiple conditions like arthritis and diabetes feels overwhelmed and wants to die,
• 31% support when a person has no hope for the future and finds no meaning in their life,
• 26% support when a person's care is perceived as a burden to their family,
• 21% support when the cost of a patient's care is very expensive to the health care. 

The Angus Reid survey found that the majority of Canadians support “assisted death,” but 50% of the respondents wanted significant restrictions on killing or wanted “assisted death” completely prohibited. 

So why are the results of the Ipsos/DWD poll so different?

People who state that they somewhat support euthanasia in an online internet survey, it also means that they also somewhat oppose euthanasia.

For instance the Ipsos/DWD online poll indicated that 86% supported the Supreme Court decision legalizing euthanasia. The data indicated that 50% strongly supported and 36% somewhat supported. That means that 50% want unrestricted access to euthanasia. The major difference being that this poll was intentionally skewed to show greater support for eliminating the "safeguards" in the law.

Dutch politicians push to debate last will pill again.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Assisted suicide is not the answer!

According to an NL Times article by Janene Pieters, a recent study concerning the "completed life" has led Dutch politicians once again to demand a debate on the "last-will-pill". Pieters reports:

The D66 has been advocating for euthanasia at the end of a full life for some time, but the two Christian parties in the coalition CDA and ChristenUnie are dead set against it. The VVD also has its doubts. The D66 already announced that it will submit a proposal for assisted suicide for people who are tired of life within a few weeks.

The "last-will-pill" or "completed life" debate concerns the legal right for physicians to assist the suicide of an otherwise healthy person who claims that their life is complete.

According to Pieters, a recent study indicates that thousands of elderly Dutch people would consider suicide, even when they are healthy, but the study also indicates that the last-will-pill should never become legal because the wish to die fluctuates. The article states:

The researchers found that the wish to die, as it emerged in the study, is not an established fact. This desire can diminish or even disappear if the person concerned's physical, financial, or living situation improves, or if they feel less lonely or dependent on others. The study also showed that this group of older people with a wish to die is "certainly not a healthy group". It mainly concerns people who have physical- as well as mental health problems, but are not seriously ill.

The committee, led by Els van Wijngaarden of the University for Humanistic Studies in Utrecht, interviewed over 21 thousand people over the age of 55 and 1,600 general practitioners. They also studied over 200 euthanasia requests, both rejected and executed. The committee's goal was not to make recommendations, but to determine the composition and size of the group of people who are not seriously ill, but who want their lives to end.

Studies by Canadian psychiatrist and researcher, Harvey Chochinov, found that the will to live fluctuates. Chochinov developed a tool known as Dignity Therapy which is being successful used to help people find purpose or meaning in living and not dying by lethal drugs.

New Hampshire "assisted suicide" bill appears to permit euthanasia.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition.

New Hampshire Legislature.

The deceptive language in most assisted suicide bills allow f0r different interpretations, such as the Indiana assisted suicide bill that may permit euthanasia.

Assisted suicide is an act whereby one person, usually a physician, assists the suicide of another person, usually by writing a prescription for lethal drugs.

Euthanasia is an act whereby one person, usually a physician, intentionally causes the death of another person, to "end suffering."

New Hampshire Bill HB 1659 is designed as an application process for obtaining a lethal dose. Most assisted suicide bills state that the person must self-administer the lethal dose (assisted suicide) and some bills say that the person may self-administer the lethal dose (may can be interpreted to permit euthanasia).

In its Statement of Purpose, HB 1659 states:

...to provide such patient with a prescription for lethal medication which will allow the patient, if the patient chooses to do so, to self-administer and thus control the time, place, and manner of death.

The term "self-administer" does not appear anywhere else in bill HB 1659. 

The assisted suicide lobby will suggest that the phrase, if the patient chooses to do so means that the person may choose not to take the lethal drugs but this phrase can also mean that the patient is not required to self-administer but can administer the lethal drugs in another manner, such as euthanasia.

For more than a year, the assisted suicide lobby has focused on eliminating "safeguards" in assisted suicide legislation. 

The Washington State legislature is debating Bill 2419, a "study bill" to consider eliminating "safeguards" in assisted suicide laws.

Bill 2419 Section f - questions the requirement that lethal drugs be self-administered. If lethal drugs are not self-administered then someone else can administer. Can you say euthanasia / homicide.

New Hampshire House Bill HB 1659 uses different terminology than most assisted suicide bills and it appears to intentionally permit euthanasia.

The assisted suicide lobby plans to eliminate "safeguards." "Safeguards" are only an incremental assisted suicide implementation strategy.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

In January 2019 I commented on an article by the CEO of Compassion & Choices, (formerly known as the Hemlock society) who stated that assisted suicide laws need fewer regulations. Kim Callinan wrote:

If lawmakers want to improve medical aid in dying laws, then let’s address the real problem: There are too many regulatory roadblocks already! I am not suggesting changing the eligibility requirements, as our opposition will suggest. I am merely suggesting that we drop some of the regulations that put unnecessary roadblocks in place.

This legislative direction resulted in several state assisted suicide bills including language to: define assisted suicide as palliative care, deny conscience rights to healthcare professionals, define assisted suicide in language that permits euthanasia and to eliminate waiting periods before dying by assisted suicide.

Last year the Oregon legislature also expanded their assisted suicide law by waiving the 15 day waiting period.

The Washington State legislature is now debating a "study bill" to examine the elimination of "safeguards" in assisted suicide laws. Bill 2419 states:

(1) The University of Washington shall conduct a study of the ability of Washington residents to make use of the rights established under this chapter.
The study shall review the extent to which there are barriers to achieving full access to the Washington death with dignity act, including:
(a) A lack of awareness of the Washington death with dignity act and its provisions;
(b) Burdens for qualified patients to meet the fifteen-day waiting period;
(c) Concerns that inhibit the participation of health care providers in the provisions of this chapter;
(d) Hospital, medical, hospice, and long-term care providers' policies that restrict the participation in and the distribution of information about the provisions of this chapter;
(e) Limited geographic access to compounding pharmacies or other pharmacies that dispense medications under this chapter;
(f) Restrictions based on the requirement that the medications under this chapter be self-administered;
(g) Lack of insurance coverage for the services and medications necessary to participate in the provisions of this chapter;
(h) The need for improvements to the data collection system; and
(i) Any other barriers identified in the course of performing the study.

Section f questions the need to self-administer lethal drugs. If lethal drugs do not need to be self-administered then someone else can administer. Can you say euthanasia / homicide.

The assisted suicide lobby would not ask their friends at the University of Washington to do this study if they didn't want to expand access to assisted suicide.

There are several states debating the legalization of assisted suicide in 2020. These state legislatures need to ask if they support assisted suicide for people who are not terminally ill, who may be incompetent or mentally ill, because that is what Canada is debating. These state legislatures also need to ask if they support doctors lethally injecting their patients (euthanasia) because that is what the imprecise language in some of the assisted suicide bills permit and clearly that is what the assisted suicide lobby wants next.

Canada legalized euthanasia in June 2016. The government just completed a misleading euthanasia consultation and it now plans to introduce a new expansive euthanasia law within days.

Canada's Justice Minister says that euthanasia may be expanded to include people with mental illness.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Hon David Lametti

Justice Minister David Lametti told CBC Radio One's The House that based on the recent online euthanasia consultation questionnaire that Canadians want more access to (MAID) euthanasia.

Lametti told CBC radio One:

"There does seem to be a clear tendency that Canadians are largely in agreement that we ought to expand the possibility for medical assistance in dying beyond the end-of-life scenario," Lametti said. 

"Obviously there are some voices that don't agree. People living with disabilities can see this as a threat, even an existential threat, and we're trying to achieve the right balance there to not stigmatize people in that context."

The CBC Radio One report explained that the law may be expanded to include people with mental illness:

...Lametti said one possible result of making these changes to the law will be to extend MAID to people whose sole underlying medical condition is a mental disorder. 

That is certainly a possibility that's raised by this expansion," he said.

Last week I reported that Canada's online euthanasia consultation questionnaire was a sham and that its data was unreliable. It was a sham because some of the questions assumed that the participant supported euthanasia. The data was unreliable because the online questionnaire did not limit people to participating once. One person told me that they filled out the questionnaire more than 50 times from the same computer.

Article: Canadian (MAID) euthanasia online consultation was a sham and the data is unreliable (Link).

CBC Radio One then interviewed Jocelyn Downie, a long-time pro-euthanasia activist academic who explained that when the Québec court struck down the "terminal illness" requirement in the law, that this enabled access to euthanasia for mental conditions. CBC radio reported:

"When you remove 'reasonable foreseeability' from the Criminal Code, as the judge in Quebec did for Quebec, one of the things that happens is that more people with mental disorders as their sole underlying medical condition will now be eligible for MAID," said Downie, a Dalhousie University law professor who served on the Council of Canadian Academies expert panel that studied MAID.

Sadly, I agree with Downie, that when the Québec court struck down the terminal illness requirement in the law that this mean't that euthanasia would also permitted for psychological reasons or mental illness. 

Article: Québec court expands Canada's euthanasia law by striking down the "terminal illness" requirement (Link).

The law originally stated that euthanasia could be done based on physical or psychological suffering, but that a person's natural death must be reasonably foreseeable. By removing the reasonably foreseeable requirement from the law, then euthanasia decisions are then based on physical or psychological suffering alone.

Article: Is euthanasia psychiatric treatment?

North Bay Ontario Hospice is being pressured to do euthanasia

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

For the past several months the Euthanasia Prevention Coalition has been writing about the plight of the Delta Hospice Society. The British Columbia Minister of Health, Adrian Dix, ordered the Delta Hospice to do euthanasia or lose government funding.

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

A similar situation exists in North Bay Ontario where the Nipissing Serenity Hospice is being pressured by four local euthanasia doctors to allow lethal injections on the premises. The Hospice, which only opened its doors on January 11 does not permit euthanasia on its premises. According to the North Bay Nugget:

The four medical providers of MAiD say they “absolutely disagree” with the hospice’s position that MAiD “is not one of the tools in the palliative care basket.”

Doctors Renee Gauthier, Mike Leckie, Paul Preston and John Seguin say in the letter MAiD “is, in fact, a tool, a very special, humane tool that thousands of Canadians have accessed and the Canadian government, under law, has permitted.”

The latest data indicates that there have been 4318 assisted deaths in Ontario (June 17, 2016 - December 31, 2019) with 95 assisted deaths reported in the Nipissing region.

Vivian Papaiz

Vivian Papaiz, chair of the Nipissing Serenity Hospice, does not provide euthanasia. Papaiz told the North Bay Nuggett that the Hospice has discussed the issue but supports the position of the Canadian Hospice Palliative Care Association and the Canadian Society of Palliative Care Physicians. 

The North Bay Nuggett reported:

In a joint statement, the CHPC and the CSPCP say MAiD and palliative care “substantially differ in multiple areas, including in philosophy, intention and approach.

Hospice palliative care focuses on improving quality of life and symptom management through holistic person-centred care for those living with life-threatening conditions. It sees dying as a normal part of life and helps people to live and die well.

Hospice palliative care does not seek to hasten death or intentionally end life.

Hospice organizations should not be coerced into providing euthanasia. Hospice and palliative care are different than MAiD and coercing hospice organizations to do euthanasia, changes hospice.

Canada must learn lessons from Belgium on assisted dying

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Trudo Lemmens

I had the opportunity to attend a presentation, yesterday, by Trudo Lemmens a Professor and Scholl Chair in Health Law and Policy at the University of Toronto, who spoke about the lessons Canadians need to learn from Belgium's euthanasia law.

On January 29, the Montreal Gazette published a special article by Lemmens summarizing his presentation to Canada's consultation on MAID (euthanasia).

Lemmens explains how expanding Canada's euthanasia law in haste is fraught with risks. He writes:

The same week our federal government launched public consultations on proposed revisions to our Medical Assistance in Dying (MAID) law, criminal proceedings started in Belgium against three physicians for their role in the death of Tine Nys. Diagnosed in 2010 at age 37 with Asperger’s, Nys received MAID under Belgium’s liberal euthanasia regime. 

Regardless of the trial’s outcome, the case highlights the challenges of allowing MAID for persons with chronic physical, developmental and mental disabilities not being close to their natural death. Belgium and the Netherlands are the only jurisdictions that allow this. Now we might be heading on the same path in response to the recent Truchon decision by the Superior Court of Quebec, which declared the “reasonable foreseeable death” criterion of MAID unconstitutional.

Lemmens tells the story of Alan Nichols to show how Canada already has a problem with the use of its euthanasia law.

Alan Nichols (Center)

One can think here of 61-year Alan Nichols, who died with MAID in June 2019. The RCMP brought him to hospital because he was confused and suicidal. Deemed capable to consent to MAID shortly after admission, the B.C. man received it one month later. 

His family learned only four days before that his life would be ended. He had a cognitive disability and profound hearing loss, which hindered communication. Nichols’s family begged to halt the procedure to get time to set up better social and health care supports. To no avail. 

If we already see questionable applications with our albeit-vague concept of “reasonable foreseeable death,” what happens when MAID becomes by law a matter of whether we live at all rather than a matter of controlling our manner of dying?

Article: Physically healthy man died by euthanasia in BC.

Lemmens explains the problem with expanding euthanasia to people who are not otherwise dying. He writes:

Legalizing MAID outside the end-of-life context explicitly confirms the ableist presumption that people with chronic disabilities may be better off dead. It opens up MAID for a host of developmental and mental health conditions, characterized by often vague diagnostic criteria and challenging predictions of treatment success. 

Autism, profound grief, schizophrenia, depression, bi-polar disorder, PTSD and anxiety have all been accepted as a basis for MAID in Belgium and the Netherlands. True, these conditions often create immense suffering; but evidence shows that with support and quality care, most learn how to cope and obtain a good quality of life. We cannot predict who does not. 

In the absence of a more objective end-of-life criterion, “unbearable suffering” will become the litmus test for determining whether someone gets MAID. But suffering is shaped by the legal, social, familial and health care context around us, and by health care providers’ perceptions of the quality of a life with disabilities. 

Moving outside of the end-of-life context creates additional concerns about capacity to consent to MAID. With many forms of mental illness, the desire to die is a component of the illness we need to address, not a carefully weighed autonomous choice.

Lemmens concludes by urging the government to examine the experience with euthanasia in the Netherlands and Belgium and then to enhance protections. He states:

Rather than radically expand our current MAID law in haste, and surrender to the court’s short timeline, the government should discuss with Parliament the complex evidence from the two jurisdictions that have taken this path. And Quebec should do the same at the National Assembly with its version of the law. 

We should also assess problems with our current MAID regime and strengthen safeguards for all, including persons with disabilities. This should include a more precise, objective end-of-life-style criterion. If it has doubts about the constitutionality of safeguards, government should submit a stronger law for reference to the Supreme Court. 

When drafting policies involving life and death, we should err on the side of life, not on the side of its termination.

Article: Belgium 2018 euthanasia report.

Article: Netherlands 2018 euthanasia report.

Belgium clears doctors in euthanasia death of a woman diagnosed as autistic.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Three Belgian doctors were prosecuted in the euthanasia death of Tine Nys (38). The family are convinced that Tine was diagnosed as autistic in order to approve her for euthanasia.

Tine Nys (center) with her sisters.

A jury in Belgium has cleared all three doctors in the euthanasia death of Tine Nys (38) who was diagnosed as autistic to qualify for euthanasia. Sadly, this is not surprising.

The Independent News reported:

Three Belgian doctors accused of murder for wrongly helping a woman end her life have been cleared by a court in a landmark case concerning euthanasia.

Relatives of Tine Nys, 38, who was given a lethal injection in April 2010, argued her death was unlawful as she wanted to die due to a failed relationship rather than an “incurable disorder” as required by Belgian law.

BBC News reported that one of the physicians was acquitted because the jury had "reasonable doubt":

The court ruled that in the case of Joris Van Hove, "there was reasonable doubt… and if there is reasonable doubt it is to the benefit of the accused"

A International Business Times article in November 2018, reported that the family believed that Tine was falsely diagnosed as Autistic so that she would qualify for euthanasia and that the law was broken because Tine never received treatment. The IBTimes reported:

Her sisters, however, told investigators that her suffering was caused by a broken heart after a failed relationship and not by autism. They also accused the doctors of making a rushed decision. They said the law was broken because Nys was never treated for autism and hence it had not been proven that she was suffering “unbearably and incurably.”

This was the first attempted prosecution for a Belgian euthanasia death. The attempted prosecution likely resulted in a slowed growth in Belgian euthanasia deaths. In January 2019, Europe's top human rights court agreed to hear the case of a depressed Belgian woman who died by euthanasia and in November 2018 three Belgian doctors were charged in the euthanasia death for psychiatric reasons. of Tine Nys.

In 2018 there were 57 (2.4%) of the euthanasia deaths were for mental or behavioral conditions, 83 (3.5%) for psychiatric reasons alone and 1% of the reported euthanasia deaths were incompetent people who had made a previous request. No children were reported to die by euthanasia in 2018.

No Free Choice To Die for Archie Rolland

Toujours Vivant - Not Dead Yet (TVNDY) is a non-religious organization by and for disabled people. (Link).

By Amy Hasbrouck and Taylor Hyatt
Toujours Vivant - Not Dead Yet.

Since last summer, TVNDY has been gathering stories of people who have been caught in the gears of the medical aid in dying (MAiD) machinery. Most were people who asked to die, but really needed help to live. Many were euthanized, or had life-sustaining care withdrawn or withheld, or simply pled their case via the media in the court of public opinion.

Over the next few months, we’re going to tell these stories of how and why the system has failed people who needed help to live, not to die, in preparation for the five-year review of the MAiD law that is supposed to begin this summer.

Archie Rolland was a landscape architect who lived with Amyotrophic Lateral Sclerosis for 15 years. From 2007 to 2015 he was treated at the McGill University Health Centre’s Chest Institute. In 2013 he wrote an opinion piece in the Montréal Gazette about his experience of “incarceration” in long-term care, and his fears about upcoming changes in his living situation.

In January of 2015 Mr. Rolland was among 17 people, most of whom used respirators, who were transferred to Lachine Hospital’s Camille-Lefebvre long-term care wing, in advance of Montreal Chest’s move to the newly-built “super hospital.” According to a report in the Montreal Gazette, “only 70 per cent of the nursing staff made the transfer, and fewer than half the hospital attendants.” As well, attendants were put on a rotating schedule, which disrupted continuity of care.

According to the Gazette, problems arose as soon as residents moved to the Lachine facility, and Mr. Rolland documented them in emails to the head nurse, the ombudsman, hospital officials and a patient’s committee representative. He reported long delays after pressing the call button, not being provided water, poor positioning causing bed sores, and more dangerous problems. In one incident, staff failed to remove mucus from his throat, then ignored the respirator alarm until his mother ran to get help. On another occasion, attendants leaned on his bed rail, jamming the call button against his head and “laughed at me in my distress.”

Other families also contacted the media about problems caused by staff shortages and rotating schedules, and multiple reports appeared in the Gazette detailing the problems at the Lachine facility. In the summer of 2016, three doctors resigned because their “pleas for additional support led nowhere.”

By July of 2016, Mr. Rolland had had enough. In emails to the Gazette reporter he emphasized that it wasn’t his illness that was killing him; he was tired and discouraged from having to fight for necessary and compassionate care. On July 4 he left the Lachine facility and made the 10-hour trip to the family’s country home in Métis-sur-Mer. Three days later he ordered that his respirator be turned off.

Though transfer to another facility was mentioned as a potential solution, in none of the reports was the possibility raised that Mr. Rolland could have lived at home with attendant services. The residents of the long-term care facility (referred to as “patients” rather than “people”) and were described as “hooked up to” respirators and feeding tubes, rather than “using” such equipment. 

Where is the choice in that?