Calgary man can't get experimental treatment for cluster headaches but he can get euthanasia.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

This is not an easy issue, but a Calgary man has gone to court to obtain access to psilocybin, a compound in 'magic mushrooms' that he believes will reduce his cluster headaches. I do not know if psilocybin will help him, but the argument that is being made is that Jody Lance can be killed by euthanasia but he cannot access psilocybin which may reduce his cluster headaches.

Lance is currently self-medicating with psilocybin that he obtains illegally.

A National Post article by Sharon Kirkey that was published on May 29 states that:

Lance is in his early 50s, and has been suffering from cluster headaches for seven years. A former land surveyor, he’s unable to work and is on long-term disability. He’s lost his house, has been “unable to socialize outside his home,” Fothergill (Justice) wrote, and says he has contemplated suicide and medical assistance in dying, or MAID, “for which he is potentially eligible.”

Lance's lawyer, Nicholas Pope, told Kirkey that:

“He doesn’t want to die,”

“He’s found a treatment that works for him and makes life bearable. But it’s absurd: If he couldn’t get access to this treatment, then MAID really would be a legitimate possibility.”

Kirkey reports that Cluster headaches are sometimes referred to as “suicide headaches,” because of the unbearable pain they can cause. 

Lance's lawyer told Kirkey that:

“The government is making it a whole lot easier to access medical assistance in dying than psilocybin, which is non-addictive and impossible to overdose on.”

Kirkey reported that Health Canada has authorized 153 requests for psilocybin, a restricted drug, under the SAP since 2022, though none for cluster headaches.

I am concerned about the suffering that Jody Lance is living with but I do not know if psilocybin is effective for cluster headaches. I do know that this article confirms that it is much easier, in Canada, to be killed by euthanasia than to receive controversial treatments, and in many cases, everyday treatments.

19-year-old British woman with rare medical condition denied dialysis against her consent.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

A 19-year-old British woman with a rare genetic condition is being withdrawn from dialysis treatment against her will and the option to travel to Canada for experimental treatment.

The young woman, known as ST, has a rare genetic mitochondrial depletion syndrome requiring constant hospital attention – but she is conscious and able to communicate. The National Health Service (NHS) in the UK wants to withdraw her dialysis treatment and place her into palliative care.

This is not an issue of euthanasia but this is an issue of the right of a competent person to consent to treatment.

An article by Inderdeep Bains that was published in the Daily Mail on August 30, 2023 reported:

The teen, described as a 'fighter' by those who know her, had been studying for A-levels when her condition deteriorated after contracting Covid last August.

She has spent the past year in intensive care where she has regular dialysis treatment, is fed through a gastrostomy tube and is using a ventilator to breathe.

The trust wants to move her to palliative treatment – in which dialysis would be withdrawn and there would be no attempt to resuscitate her if she needed to be.

But the teen and her family are desperate to do everything they can to extend her life, including joining clinical trials for nucleoside therapy. They say her condition causes muscle weakness, loss of hearing and kidney damage –making her dependant on the dialysis and intensive care – but it does not affect her brain.

Hospital doctors argue that her refusal to accept imminent death is a sign of 'delusion'.

Mrs Justice Roberts acknowledged that ST, who watched proceedings from hospital, communicates reasonably well and displays an 'overwhelming desire to live'.

But she has now ruled that the decision over her treatment should be made by a court.

She said: 'ST is unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she does not believe the information she has been given by her doctors.

In other words, ST will lose her right to consent to treatment because she wants  everything possible done to restore her health. It is true that clinical trials are often a long-shot, but Justice Roberts has decided that she does not have the right to try.

Bains reported that family as stating:

'This has been a year of continuous torture for the family...

'We are shocked to be told by the judge that our daughter does not have the capacity to make decisions for herself after all the experts have said that she does.'

I am concerned with the lack of respect shown for the right to consent to treatment and for denying the wishes of this young adult woman. It may be that ST will not survive, however denying her dialysis and the right to have hope is wrong.

Proposed changes to the Uniform Determination of Death Act (UDDA) will lead to more litigation.

Date: March 14, 2023

To: Members of the ULC Drafting Committee re the Uniform Determination of Death Act

I have been observing your meetings on the Uniform Determination of Death Act (UDDA) on behalf of the Euthanasia Prevention Coalition USA. We are aging and disability advocates, lawyers, doctors, nurses and politicians who support positive measures to improve the quality of the lives and well being of people instead of offering them assisted suicide and euthanasia.

I am an attorney with a varied background. Relevant to your deliberations, I was a columnist on medical decision making for a state bar publication, a pro bono member of a disability rights litigation team, specializing in disability discrimination within health care, and a member of a governor’s task force on controlling health care costs.

As you consider revisions to the UDDA, I recommend you ask yourselves if they will increase or decrease trust between patients and physicians. Consider the example of Lisa Avila whose family rejected her brain death diagnosis and resulting plan to stop life supporting treatment after the same providers missed her fatal ectopic pregnancy. “For them to push the family to do that is just unspeakable,” said Lisa Avila's aunt, Jessica Jule. “Pretty much they're trying to kill her to reduce them from having to pay the bill that it would cost to keep her alive,” said Avila's cousin, Yvette Townsend.

Not only did their distrust affect decisions for Lisa, it will impact future decisions her family members and friends will make about their own health and that of others. It is well known that distrust leads to a failure to engage and then once receiving health care, insistence on aggressive treatments, especially in communities subjected to health care disparities.

The importance of the trust that underpins medical relationships cannot be overemphasized.

Medical professional relationships have strong elements of trust and are marked by unique vulnerabilities and power disparities. These relational features arguably are greater for medical care than in any other professional arena. In addition, medical liability is seen as an important influence on health care quality and cost, which are of substantial public policy significance.

American Law Institute (ALI) Tentative Draft No. 1 of the Restatement Third of the Law of Torts: Concluding Provisions (March 2022) Ch 11 Liability of Medical Professionals and Institutions, Introductory Comments at 91. For sale at (Link).

Brain death is a label applied to people thought not worth saving. Professor Thaddeus Pope says brain death “has been described as ‘at once well settled and persistently unresolved.’ This is no surprise once brain death is recognized as a value judgment instead of as a scientific truth.”1 Harvard ethicist Robert Truog M.D. says the central justification equating brain death with biological death is now known to be false.” It is well accepted that “brain death” was legally adopted to allow the supply of organs for transplantation. “Donation after circulatory death determination is not preferred, as this manner of death tends to render organs unusable…”

Thus, the Drafting Committee’s effort is fraught with controversy and challenges. Clever wordsmithing will not change that. In this letter, I will comment on your draft language as of the end of your February 10-11 meeting.

Reversible but Permanent Due to Clinician Inaction

The Drafting Committee has changed the criteria for both circulatory/respiratory death and brain death from “irreversible” to “permanent.” This means clinicians can refuse to act to reverse patient conditions. This language would allow a clinician who has caused a potentially fatal injury to refuse to treat the patient, instead waiting for the person to die. This completely undermines trust.

Functional Impairment instead of Anatomical Location of Brain Injury

The Drafting Committee has changed the criteria from whole brain death to a list of functional impairments. The change is from “irreversible cessation of all functions of the entire brain, including the brain stem” to “permanent coma, permanent cessation of spontaneous respiratory functions, and permanent loss of brainstem reflexes…” We know that coma can evolve to persistent vegetative state or partial consciousness and that about 50% of those in a persistent vegetative state following a traumatic injury, eventually recover consciousness. This process takes a few months to a year, but brain death is often quickly determined. A quick labeling of brain death does not allow this healing process to take place.

The Committee’s draft allows for family to gather for a short time after brain death has been determined before circulatory-respiratory support is stopped. Think about what this says to the family: we’ll let you say good-bye while your loved one looks/is alive; then we’ll pull the plug because your loved one really isn’t dead until we do that. This very seriously undermines trust.

The underlying problem is that, brain death represents a value judgment. An analysis in the AMA Journal of Ethics says brain death examination “evaluates function but cannot distinguish between a “stunned,” quiescent brain and an irreversibly damaged brain;… ‘super locked-in patients’ …could appear brain dead, despite preserved consciousness or afferent olfactory and visual pathways, analogous to vegetative patients who demonstrate subclinical awareness when carefully interrogated.”

The Committee’s new language allows more false positive, i.e. incorrect, determinations that people who are alive and possibly could recover will be labeled legally dead. This seriously undermines trust.

Disability Discrimination

Reliance on functional impairments instead of biological injuries as discussed above raises a question of whether the language facially discriminates on the basis of disability. The disability community is looking at this question.

Clever Elimination of Informed Consent

The draft purports to accommodate objections to the harmful apnea test for brain death and for being determined brain dead. However, the objection(s) must be lodged before brain death tests are started. Since no notice of the right to object is required, this is a hollow right. Further, committee discussions indicated this would replace any rights to receive required disclosures for giving informed consent. Informed consent, which is recognized by the common law throughout the country, underpins the trust patients place in physicians and health care systems. Taking this right to informed consent away by ambiguity undermines that trust.

Medical Malpractice Should Not be Rewarded

The Drafting Committee’s charge is in response to concerns from medical providers about increased litigation and challenges to brain death determinations.2 Cases specifically cited in raising these concerns frequently involve alleged medical malpractice leading to what families see as alleged brain death.

Lisa Avila, age 36, died from an undiagnosed ectopic pregnancy, but was labeled brain dead.

Jahi McMath, age 13, lost her airway after a tonsillectomy, allegedly because of malpractice. She was declared brain dead in California but not in New Jersey.

Aden Hailu, age 20, came out of an appendectomy and exploratory surgery with severely low blood pressure and severe, catastrophic brain damage due to lack of oxygen. Her father refused to consent to brain death testing.

Professor Truog says:

Although the issues described above have generated a substantial number of legal challenges, they have not been overwhelming in either their number or their impact, and practice under the current UDDA has been generally well-accepted by the public for more than 40 years. The risk of future lawsuits could also be mitigated by providing an opt-out for patients who object to the determination of death by neurologic criteria, a concession that has been available in New Jersey for more than 3 decades.3

Holding providers accountable for malpractice, including malpractice in determining whether someone is dead, is necessary to support trust in the medical system. Those who commit malpractice should not be given an easy way out by labeling the impaired patient brain dead.

Sincerely,
Sara Buscher, Attorney & C.P.A.
Immediate Past Chair, EPC-USA

1 Thaddeus Mason Pope, "Brain Death Forsaken: Growing Conflict and New Legal Challenges," Journal of Legal Medicine 37, no. 3-4 (July-December 2017): 265-324.
2 Truog RD. “The Uncertain Future of the Determination of Brain Death” JAMA Published online February 07, 2023.
3 Supra n. 2.

A Provincial Remedy for the Ills of Medical Assistance in Dying

The following article was published by the Frontier Centre for Public Policy on February 21, 2023.

Gordon Friesen

By Gordon Friesen
President, Euthanasia Prevention Coalition

When “Medical Assistance in Dying” (MAID) was decriminalized in 2016, that result apparently confirmed a powerful social bias in favour of personal freedom. Presented as a free choice — affecting no one else — euthanasia seemed acceptable to most Canadians.

However, this tells only part of the story, for euthanasia is not only about death-by-choice, it is also defined as high-priority medical care. Unfortunately, like a new organism released in an established ecosystem, the arrival of euthanasia could not fail to affect every detail of the medical environment.

First of all, it is an ethical requirement for doctors to inform patients of all available treatment options. This means informing each patient of their “right” to access euthanasia (MAiD). The typical non-suicidal patient is thus immediately confronted with the possibility of assisted death, in the same way that one is confronted by an open elevator shaft, or by a missing guardrail. Suddenly a danger exists which must be consciously avoided.

Nor does the threat end there. Doctors are expected to proactively prescribe optimal treatment (to which the patient will normally consent), but there are doctors who are very partial to euthanasia. It is thus to be expected that many patients will succumb to the suggestion of these “professionals,” even though they would never have spontaneously thought, themselves, to request assisted death.

Indeed, it is not easy to fix a clear boundary between the legitimate professional duty to convince recalcitrant patients of what is truly best for them, and the abusive application of “undue influence” in proposing death as treatment. Certainly, this is a slippery slope!

Roger Foley, for example, eloquently describes being offered euthanasia on multiple occasions during a prolonged hospital stay caused by his inability to obtain sufficient care at home. Eventually, hospital staff informed Mr. Foley that he would either have to pay an exorbitant daily fee or be discharged without the care he needed to survive. Accounts of this situation were naturally greeted with outrage by the press. But there also remains a sort of perverse logic in defence of the hospital based on the medical definition of MAID. By refusing euthanasia, Mr. Foley had effectively refused the proposition of a perfectly legitimate medical treatment, a fact that would normally lessen the hospital’s responsibility towards him considerably.

Similarly, in the now-famous scandal of Canadian veterans being offered MAID for PTSD, we must remember that Bill C-7, has indeed authorized euthanasia for mental illness without any physical issues. Therefore, while many Canadians might agree that the offending caseworker behaved with misguided enthusiasm, no one in authority has actually affirmed that veterans will not be euthanized for PTSD. Quite the contrary, in today’s legal and medical setting, it is a virtual certainty that they will be offered MAiD.

More generally, also, to suggest that human life should be ended according to medical criteria, is a completely different proposition from saying that people might, of their own free will, be allowed to seek assistance in death. As euthanasia is increasingly institutionalized, and as a younger generation of professionals becomes fully adjusted to its “medical” use, we must expect that typical patients will face an increasingly hostile clinical environment if they do not accept the recommended treatment. For what we are witnessing is the transition of our entire healthcare system to a new utilitarian model that is totally at odds with traditional assumptions of life-affirming care.

Obviously, this is not what Canadians thought they were getting. And more importantly, there has been no serious debate about making such a radical change.

Happily, one glimmer of hope is to be found in the fact that health is a Provincial responsibility; that just as Quebec was able to define euthanasia as medical care, so other provinces can revisit their decision. And without being able to prohibit euthanasia entirely (which is an exclusively Federal power), each Province and Territory is free to permit or to forbid euthanasia in any institution under its authority. They are free to decide whether their funds will support euthanasia, and free to regulate the behaviour of health professionals.

These are obviously very serious concerns. Healthcare consumes nearly a full third of all government spending. Do we Canadians wish to pay for a system that will care for us when we need it? Or, do we want to pay for a system that is designed to bury us at the lowest possible cost?

Gordon Friesen has been following the assisted death question closely since the early nineteen-nineties and is currently President of the Euthanasia Prevention Coalition.

Canadian Children may be euthanized with or without parental consent.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Sign the EPC petition: Oppose Child euthanasia in Canada (petition link).

A report by the Special Joint Committee on Medical Assistance in Dying (AMAD) was tabled in the House of Commons on February 15 calling for a drastic expansion of euthanasia (MAiD) in Canada. Among other recommendations, the report recommends that euthanasia be expanded to include children "mature minors."

Recommendation 19 in the report states:

That the Government of Canada establish a requirement that, where appropriate, the parents or guardians of a mature minor be consulted in the course of the assessment process for MAID, but that the will of a minor who is found to have the requisite decision-making capacity ultimately take priority.

This means that parents or guardians may or may not be consulted, in the euthanasia death of a child that is deemed capable of decision-making.

To understand Recommendation 19 better we to go back to the policy developed by the Hospital for Sick Children in Toronto on euthanasia for "mature minors" that was published as a report in the Journal of Medical Ethics in September 2018.

• Article: Sick Kids Hospital Toronto will euthanize children with or without parental consent (Link).

According to an article by Sharon Kirkey published by Sun Media, on October 9, 2018; the ethicists at the Children's Hospital believe that there is no difference between killing someone and letting them die. Kirkey reported:

The working group said it wasn’t convinced that there is a meaningful difference for the patient “between being consensually assisted in dying (in the case of MAID) and being consensually allowed to die (in the case of refusing life-sustaining interventions).” 

Sick Children's hospital draft policy applies the same "ethics" for mature minors making medical decisions as making death decisions. Most Canadian provinces allow mature minors to make decisions about their own care, including withdrawing or withholding life support. In Ontario a minor can provide consent for treatment or withdrawal of treatment if they understand the “reasonably foreseeable consequences” of their decision. The Sick Kids' hospital stated that they encourage minors to involve their families in medical decisions.

Kirkey explained that the Hospitals for Sick Children draft policy would permit children to decide to be killed by euthanasia without the consent of the parents:

The draft policy argues the same rules should apply to MAID since there is no meaningful ethical or practical distinction from the patient’s perspective between assisted dying and other procedures that result in the end of a life, such as palliative sedation (where people sleep until they die) or withdrawing or withholding life-sustaining treatments. 

The draft policy by Toronto's Hospital for Sick Children set out what can be expected if Canada permits euthanasia for children (mature minors).

Children who are deemed, by their physician, as competent to make medical decisions will be also deemed competent to decide, with or without the consent of their parents, to die by lethal injection.

Now that the Canadian government is considering child euthanasia and euthanasia of incompetent persons who requested death in an advanced directive, the requirement to consent to die has become only an option.

Every time a door is opened to new reasons for killing it always leads to another door. Opening the door to child euthanasia also opens the door to euthanasia without consent.

Oxygen Deprivation Can Lead to Brain Death

By Sara Buscher, a lawyer and Past Chair, EPC - USA

On January 2, Buffalo Bills football player Damar Hamlin crumpled to the ground after a routine tackle. His knees buckled and then the rest of his body followed. Those who watched the game were immediately concerned. His heart had stopped but was restarted while he was on the field. Medical staff from both teams began CPR which lasted for 20 minutes. His pulse was sporadic and stopped once but restarted on the field. He was taken by ambulance to a nearby hospital. Both teams prayed on the field. The game was cancelled. Damar Hamlin received medical treatment aimed at his recovery. He was on a ventilator but is now off. Fortunately, we now know Damar Hamlin is getting better every day and able to communicate to others.

Before he showed signs of recovery, social media posts speculated that he was brain dead. For example, “If Damar Hamlin didn't have oxygen to his brain for 5-10 minutes, you know what the results are. The same thing happened to my brother where he didn't have oxygen for that length of time & doctors ran test to show he was brain dead.”

We all know that a person deprived of oxygen can have severe brain damage, whether it’s caused by a stroke, heart attack, near drowning or head trauma. That’s why people train to do CPR and why we are told to immediately call 911 if someone stops breathing. According to WebMD,

Your cells use oxygen to make energy. If they don't get it, they die. It's your blood's job to deliver oxygen throughout your body….

Your brain's a real oxygen hog. It's a small part of your body weight, but it uses 20% of your oxygen. It can't store the oxygen, so it needs a steady flow of blood to work well. Brain cells start to die if they go without oxygen for just 3-4 minutes….

With each minute that passes, you lose about 2 million brain cells. The longer you go without oxygen, the greater your chance for brain damage that can't be undone. After about 10 minutes, the damage can be severe.

If a person can’t breathe on his own, a test for brain death called the apnea test takes the person off a ventilator for 8-10 minutes to see if the person will try to breathe. If the person can’t breathe, that’s 8-10 minutes without oxygen. That’s why the test itself can cause serious complications, cardiac arrest, brain damage and death. According to the article just referenced: “Apnea testing never provides any direct medical benefits to a patient; the only benefit of the test would be the cessation of continued treatment to someone diagnosed as dead.”

Families are distrusting of the apnea test, especially when a healthy child comes out of surgery labeled brain dead. Obviously, if a medical malpractice victim dies, the damages are lower. So, people are suspicious. Some families have sued for the right to say “No” to the apnea test, with mixed results. For example, a Montana court[i] sided with parents, a Virginia court did not.[ii] More cases have been collected on a web site; most of them ruling against families opposed to having loved ones tested.

Whether doctors must get informed consent before a loved one is subjected to the apnea test is now being considered by the Uniform Law Commission committee that is rewriting the Uniform Death Determination Act. If a statute prohibiting informed consent were enacted by each state as part of its Uniform Death Determination Act, no one would be asked to authorize apnea testing before their loved ones are tested. To justify this, some argue informed consent is not needed for diagnostic procedures. Legally, that argument is incorrect; informed consent is required for diagnostic procedures.[iii] Those who want to run the test without needing consent also argue the test is only used on people doctors already know are brain dead. Obviously, if they know the person is dead there is no need to run a test to find out if they are dead. Again, this raises suspicions.

I believe clinicians should explain to family members or a health care agent why they want to run the test, what it entails, what the risks and benefits are and then ask them to consent to the test. Doing so builds trust.

Endnotes.

[i] In re Allen Callaway, Montana, No. DG-16-08 (9th Jud. Dist. Ct., Pondera Cty., Mont. Sept. 26, 2016).

[ii] Lawson v. VCU Med. Ctr., No. CL16-2358, Order, Cir. Ct. Richmond, Va. (June 14, 2016), on appeal, No. 161321 (Va. 2016).

[iii] Berg JW, et al., Informed Consent Legal Theory and Clinical Practice 2d ed Oxford University Press 2001 at 54-5. See also COUNTERPOINT: Should Informed Consent Be Required for Apnea Testing in Patients With Suspected Brain Death? Yes at https://journal.chestnet.org/article/S0012-3692(17)31052-8/fulltext which explains the law of informed consent well.

Ontario Family Reeling from Loss of Love One.

FOR IMMEDIATE RELEASE

Ontario Family Reeling from Loss of Loved One: 

When the Medical Community Abandons Power of Attorneys (POA) and Substitute Decision Makers (SDM), the Fallout Affects Us All

[Toronto, Ontario. December 24th, 2022] 

On June 4th 2022, Nicola Angelo Marchione, a Guelph resident, died shortly after his feeding tube was removed, without his or his decision maker/POA’s consent at a hospital in Kitchener, Ontario. Mr Marchione dialysis was removed earlier the same day, also without his or his family or decision maker’s (POA’s) consent. Multiple requests for Mr Marchione’s medical records, and information concerning why informed consent was not obtained from either him nor his POA, were never responded to, nor any information or answers provided since.

Following multiple visits to a hospital in Fergus, Ontario, from January to May 2022, due to shortness of breath, followed by medical issues related primarily to the change of his medications and side effects from these, Mr Marchione was admitted to hospital in March for feelings of increasing heart rate after a medication was stopped cold turkey. He was given a new medication called Amiodarone, a drug which has substantial and significant side effects, none of which were disclosed to Mr Marchione upon admission, nor to the family. After concerns over the effects of the medication, numerous attempts to speak to the specialist who prescribed it were made, however all contact and efforts were ignored. In May, Mr Marchione returned to the hospital with symptoms of his leg feeling weak, this was his final readmission there, only this time he would leave that hospital with septic shock and renal failure. 

Abandonment of a patient, neglect, lack of informed consent, ageism, elder abuse, etc., these are the matters under investigation in Mr Marchione’s death. Why were this man’s concerns or his family concerns never addressed? Why should citizens have advance Power of Attorney established only to be overruled by the doctor on call or medical specialist in charge? This case has too many unanswered questions. It has become apparent that the nurses and medical team resonsible are not responding to valid concerns or requests for information. This matter has been escalated to the Directors of both hospitals, Patient Ombusdman, Chief Coroner’s Office, and local Police athorities for active investigation.  

This is the lasting memory that Nicola Marchione’s family has of him: Unattended, abandoned to his medications, pulling at a Kleenex box in a state of shock and unrest while at the hospital prior to transfer. His final words to his family were, “I’m having trouble breathing, I think I’m going to die.” He was clearly experiencing distress. Mr Marchione’s family deserve closure: His spouse and children deserve answers, and the larger public community and concerned citizens deserve answers and those responsible need to be held accountable.

To speak to the Marchione family for comment in relation to this case and its details, please contact Angela Marchione-Faragher at 519-831-4377 or email: angiefilms@yahoo.ca for interviews and comments. Additionally, media inquiries can be made to Kathy Matusiak Costa at 519-439-6445 or email info@beingwith.org

Dr Saba releases his book - Made To Live - in Romania.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Dr Paul Saba, the author of the book Made To Live, recently released his book in Romania.

Dr Saba launched his book Made To Live on Sept 15, 2020 in Canada and earlier this month Made To Live was released in Romania.

Purchase Made To Live from the Euthanasia Prevention Coalition for $26.25 (includes tax & shipping) (Link).

An article in the Romanian Post titled: Canadian doctor, assisted by a lawyer from Oradea, fights with the government to dispel the myth of assisted suicide stated:

Dr. Paul Saba has made it his mission to oppose euthanasia and assisted suicide, he has lectured before the legislatures of New Hampshire, Connecticut and New York, before international forums in Rome, Reykjavik, Santiago, Tbilisi. Together with his lawyer, born in Oradea, Natalia Manole, the doctor also came to Oradea to make the world aware of “myths, manipulation and marketing of assisted death and that this law does not belong to our culture. It certainly has no place in our medical system.” 

Dr Paul Saba in Romania

In explaining the assisted suicide myths, Dr Saba stated:

one of the arguments used in favor of assisted suicide compares this act to the consent given to an operation. “Informed consent accepts death as a potential outcome, which is weighed against the patient’s willingness to take that risk. The error is that in the case of assisted suicide or euthanasia, death is not a risk, but a certainty,”

Another myth is that Canada is a progressive country that provides for the social and health needs of its citizens. Saba stated:

“The reality is that in Canada medical services are inadequate for many of its citizens. Many people do not have their basic needs met, including affordable housing and food. They want to live in dignity rather than die by euthanasia,”

A third myth that Saba outlined is that euthanasia is an extension of palliative care. Saba stated:

“The reality is that intentionally ending life is the exact opposite of palliative care, and is even used as a de facto alternative to palliative care.

Saba also dispelled the myth that if euthanasia is legalized that it will be restricted to only a few people. Saba referred to the data in Canada and Belgium.

Saba concluded his presentation by stating:

“Euthanasia and assisted suicide are not a solution to end-of-life care. People must be cared for, not killed”

Purchase copies of Made To Live from the Euthanasia Prevention Coalition for $25 + GST ($26.25)(includes shipping) (Link).

Quebec anaesthetist fighting "euthanasia" allegation

The following article was written by Michael Cook and published by Bioedge on December 12, 2021. The article refers to the act as euthanasia, but it doesn't appear to be euthanasia. Stories from Québec often refer to euthanasia in the wrong manner. 

Withdrawing a ventilator can be inappropriate, but it is not euthanasia. The patient does seem to have been medically abandoned. Since the patient was not given a lethal dose or suffocated with a pillow or some other device, therefore it is not euthanasia. Euthanasia is a form of homicide.

Providing or withdrawing treatment is a treatment decision that requires consent. The anaestetist disconnected the ventilator without the consent of the patient or the substitute decision maker. Therefore the act appears to be unethical, but it does not appear to be euthanasia. The article by Michael Cook follows:

Michael Cook

By Michael Cook

Police blotter. Here is a case from Quebec which suggests two things. First, that Canada’s medical aid in dying legislation does not mean that doctors are allowed to kill patients willy-nilly. Second, that some doctors take a very utilitarian view of their patients.

This week a court lifted a ban on revealing the name of a retired anaesthetist who is being investigated by the police over a death at Hôpital de la Cité-de-la-Santé de Laval. Dr Isabelle Desormeau had requested confidentiality because publicity could prejudice her case.

The incident in question occurred on October 31, 2019. An 84-year-old man went to the hospital complaining of a stomach ache, which was actually an intestinal obstruction. Emergency surgery was required. Dr Desormeau and the surgeon spoke with the man about the risks. He asked them to “prolong life through limited care”.

The operation began at about 2 am. The surgeon discovered that large parts of the small intestine were necrosed. The man’s niece was consulted and told that if they proceeded with the operation, the man would have to wear a colostomy bag and would be in hospital for a long time. It was decided to “conclude the operation and offer palliative treatment”.

Back in the operating room, the surgeon “closed the patient’s abdominal wall”. But then the anaesthetist and the nurses quarrelled. Dr Desormeau allegedly questioned “the usefulness of finding a room for the patient when he could be taken directly to the morgue”. She said that the man had no one to accompany him in palliative care. One of the nurses retorted that the patient had a daughter.

In the end the anaesthetist disconnected him from the ventilator at around 4:45 am. The nurse claims that she protested several times that “this is not the way to do things and that the patient should be returned to the floor to die with dignity”.

The man died at about 5.04 am. The anaesthetist walked out without signing a death certificate, leaving that job to the surgeon.

The investigation continues.

Euthanasia is an intentional action or omission to cause death. Withdrawing the ventilator was not the cause of death, the medical condition of the patient is the cause of death. Withdrawing a ventilator without consent is medically unethical, but it is not euthanasia.

Woman awakens from coma on the same day that life-support was to be withdrawn.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

I have listened, over the years, to many people who have contacted to discuss whether they should discontinue life-sustaining treatment for a person when they are the Power of Attorney for Personal Care.

Bettina Lerman

These are never easy discussions. In these circumstances I will listen to the concerns of the decision maker and ask questions to help them assess what the person would have wanted if they were capable of making the decision or discuss what is the best decision. I only discuss the issues, people have to make decisions for themselves.

Michelle Butterfield, reported for Global News on a 69-year-old Florida woman who came out of coma, related to COVID-19, on the same day as the family had agreed to remove her from life-support. Butterfield reported:

Bettina Lerman’s family had already made funeral arrangements and had picked out a casket and headstone for the 69-year-old woman. They were preparing to say goodbye after doctors said it didn’t look like she would ever wake up.

“We had a family meeting with the hospital because my mother wasn’t waking up. No matter what they (did), they couldn’t get her to wake up,” Andrew Lerman, Bettina’s son, told CNN. “They said that her lungs are completely destroyed. There’s irreversible damage — that it’s just not going to happen.”

The family was picking up her headstone on Oct. 29 when they received a call from the hospital.

“There’s nothing wrong. Your mother woke up,” the doctor told Andrew, more than four weeks after she was first placed on the ventilator.

Withdrawing life-sustaining treatment is different than euthanasia or assisted suicide. When asked, I will usually advise the person to ask for more time. Medical professionals are not always right and sometimes a person needs a little more time to awaken.

For instance, a few years ago, a close family member had a profound heart attack. Doctors urged her husband to withdraw life-sustaining treatment, telling him that she would not likely come out of coma, and if she did she would never be the same. 

Her husband insisted on continuing treatment. She not only came out of coma but she fully recovered and remains healthy today.

I am not suggesting that recovery is always possible, but patience and time can save lives.

Bill C-7 will sacrifice the medical profession's Standard of Care.

This article was published by Policy Options on February 11, 2021

By Trudo Lemmens, Mary Shariff and Leonie Herx

Trudo Lemmens

As Parliament discusses Bill C-7’s expansion of the Medical Assistance in Dying (MAiD) Act, one issue has been conspicuously absent from public debate, even though it has major implications for medicine and for patients: the impact of the bill on the role of the medical profession in determining the standard of care, as it applies to MAiD.

The government introduced Bill C-7 in response to the decision of Quebec Superior Court Justice Christine Beaudouin (in the Truchon case), who ruled unconstitutional the current law’s limiting of MAiD to those whose natural death is “reasonably foreseeable”.

Bill C-7 addresses Justice Beaudouin’s finding — which in our opinion should have been appealed instead — by introducing a second track of access to MAiD for people with chronic illness or disability whose death is not reasonably foreseeable.

For the second track, Bill C-7 imposes a 90-day assessment period, which can be shortened when deemed appropriate; a second eligibility assessment by a medical practitioner with expertise in the condition that is causing the person’s suffering; and two strengthened “informed consent” provisions, including an obligation for physicians to ensure that their patients have given “serious consideration” to other options.

The ableist assumptions behind C7

Dr Leonie Herx

The most often-voiced serious criticism, which we endorse, is that the bill’s second-track access system violates the right to life of people with disabilities and chronic illness, and discriminates against them. If implemented as written, Bill C-7 will expose only people who have a chronic illness or disability to a higher risk of premature death as a result of medical system-organized MAiD, even when they are not approaching death.

The current “reasonably foreseeable” death criterion functions as a safeguard to protect the right to life. Under C-7, this is now removed for people with chronic illness and disability, while others will not have access to a medically-hastened death and instead will normally receive suicide-prevention interventions if they express a desire to die.

As two UN rapporteurs and one independent expert on human rights warned in a recent official communication to Canada, Bill C-7 thereby appears to violate several provisions of UN conventions on human rights related to the right to equality and the right to life. While reflecting understandable empathy for often-severe suffering, the bill thereby conforms, in our opinion and that of the UN special rapporteurs, to an ableist presumption that a life with disability or chronic illness has less quality or is less worth living. Only for them, MAiD is transformed from a procedure to facilitate dying into a terminal therapy for life’s suffering.

Mary Shariff

It is understandable, therefore, that this has been the main focus of the debate. But there is another key issue that so far has received scant attention: how the bill undermines the crucial role of the standard of care, and what this will mean for medicine and for patients.

Displacing the Standard of Care rule

If implemented as written, Bill C-7 will allow physicians to end the life of people with disabilities or chronic illnesses at their request and will require the system to ensure it happens even when physicians are convinced, based on their expert knowledge, that medicine offers options and even when the patient may have years or decades to live with a good quality of life if other options are explored and tried first. In short, Bill C-7 displaces the long-standing professional rule of the “standard of care” — which obligates physicians to apply their skills and intricate knowledge to a patient’s particular clinical circumstances — and replaces it with patient choice.

The profession’s silence about Bill C-7’s impact on the standard of care is surprising. It is, in fact, an issue that already raises concerns in the context of Canada’s current MAiD law, since some people are already receiving MAiD as a result of a flexible interpretation of the “reasonably foreseeable” death criterion, while they may have had years to live if adequate treatment had been provided. We would have expected that also health professional organisations or scholars who endorse in principle the bill’s expansion, would have raised questions about this component of Bill C-7, since the concern will be so much more magnified.

Granted, there are other qualifying conditions in Bill C-7 than informed consent for access to MAiD. Patients must be capable of decision-making; must have a grievous and irremediable medical condition, which is defined as a serious illness or disability, which causes “enduring and intolerable suffering” resulting in an “advanced state of irreversible decline in capability.”

But there is no definition of what counts as “serious” illness, or of what is an “advanced state of irreversible decline”. Many, if not most, disabilities would fall under it. Severe hearing loss, significant loss of vision or of mobility, for example, are disabilities that can be associated with an irreversible decline of specific capabilities and would qualify. Such conditions, and even chronic tinnitus, have been the basis for MAiD in the few jurisdictions that allow MAiD outside the end-of-life context. The criteria of “suffering” is already interpreted entirely subjectively — completely determined by the patient in current MAiD practice.

 Standard of Care and consent

That physicians need to obtain “informed” consent from the patient before engaging in MAiD is obviously key. But they must also generally act according to the “standard of care” which is based on evidence-informed standards, shared among professionals and in line with their acquired clinical expertise.

The fact that a patient ultimately consents to a treatment proposed by a physician does not dislodge this a priori standard. It is part of medical practice that physicians can present only those medical treatment options that are reasonably and objectively indicated based on the “standard of care”.

While shared-decision making and patient-centred care are rightly emphasised as vital to decision-making, these important concepts do not mean that patients can insist on procedures that violate the standard of care, including how the standard of care stages different procedures as first, second or subsequent lines of treatment.

The application of the standard of care to a particular patient’s situation is determined by a complex process involving medical research, evidence-informed experience, and standards and rules set by regulatory agencies and professional organisations. Less-invasive options are usually required to be tried first, with higher-risk procedures as last resort. The integrity of the “standard of care” is what keeps physicians accountable and holds them to the highest level of medical practice. It is key to keeping patients safe in the hands of their physicians. It is from within the standard of care exercised by physicians that patients exercise their consent to treatment proposed. Not the other way around.

For example, hip or knee replacements for arthritis require that non-surgical interventions be tried first, such as lifestyle modifications (diet, exercise) and pain medications. Surgery is the last resort, and clearly not only because of cost considerations. Similarly, a neurologist who would offer deep brain stimulation to a person with epileptic seizures without trying less invasive treatments first would violate the standard of care — even if the patient insists and “consents” to it.

In our view, since physicians cannot offer treatments that run counter to the standard of care, then surely they cannot, pursuant to the standard of care, offer and provide to the patient the ending of their life — an ultimate and irreversible harm — if they are convinced that other medical procedures or support measures will provide relief. The importance of this is, for example, particularly clear in the mental health context, if mental health is accepted as a basis for requesting MAiD. Imagine what it will mean for the standard of care in mental-health care practice and suicide prevention if a severely depressed person, who is assessed as capable of decision-making, refuses all available treatment and support measures and insists on obtaining MAiD instead.

Misapplication of the doctrine of ‘informed consent’

To understand how we got to the point where “informed consent” is replacing the standard of care in the MAiD context, we must look at the Supreme Court’s 2015 Carter decision. The court ruled that patients suffering unbearably from a medical condition should be able to have some form of access to MAiD and invited Parliament to create an exemption to the remaining criminal law prohibition to allow this. It also reiterated, in passing, a patient’s right to refuse treatment, even in the context of a request for MAiD.

But it is important to keep in mind that the court’s decision was in the context of the case of Gloria Taylor, a person with ALS, who was approaching her natural death. In Carter, the court emphasised (and it bears repeating): “The scope of this declaration is intended to respond to the factual circumstances in this case. We make no pronouncement on other situations where physician-assisted dying may be sought.”

The court thus reaffirmed the “right to refuse treatment” within the factual context of an approaching death. Recognition and protection of the right to refuse an intervention in a general context is entirely different from the connections and analogies that can be made in the end-of-life context between treatment refusals and obtaining active assistance in dying. Even if the death of a patient with diabetes, for example, can become “reasonably foreseeable” in the event the patient refuses treatment, the “ethical distinction” is exceptionally clear when viewed from the standard of care perspective, since the physician is obligated to comprehensively explore with the patient the treatment options that will indeed save their life. In the non-end-of-life context, combining treatment refusal with a request to active ending of life raises the stakes.

Yet, the Supreme Court’s reiteration of the right to refuse treatment appears to be translated in the context of Bill C-7 as a confirmation that MAiD should always be the standard of care when MAiD is what a patient wants.

We believe this is a misapplication of the doctrine of “informed consent.” To accept this constitutes a wholesale abandonment of the idea that the medical profession has a responsibility to make considered medical determinations based on evidence, unique knowledge and expertise.

This is a stunning reversal of the central role of the medical and legal concept of the standard of care. It lifts “informed consent” up to the status of the sole arbiter of what constitutes proper medical practice. This development is also internationally unprecedented. Even the three most permissive MAiD regimes in the world — Belgium, the Netherlands, Luxembourg, the only ones that currently permit physician-provided ending of life outside the end-of-life context — treat MAiD rightly as the last resort, available when no other options are seen to remain.

It is thus astonishing that the Canadian Medical Association and some other medical organisations expressed support for C-7. If regulatory colleges follow the CMA’s lead, the medical profession is undermining the very reason why our society has provided it with self-regulatory powers. Physician self-regulation is based on the premise that physicians possess special knowledge and expertise, and that determining what constitutes proper health care is therefore best left to them, even if external scrutiny and oversight are appropriate.

By supporting Bill C-7, medical organisations are handing over to patients the determination of professional standards. They are thereby also abandoning their commitment to patients to provide the best evidence-informed care, based on the concept of “informed consent” that we also know is rarely if ever fully realised in practice.

We cannot believe that this is what our Supreme Court intended. While we believe that the very foundation of Bill C-7 is already discriminatory, the failure to properly respect and uphold the interaction between informed consent and the standard of care makes the potential impact of an expansion outside the end-of-life context so much more problematic.

The least we would expect is that the new bill explicitly confirms that MAiD is an irreversible last-resort option when all other reasonable options available according to the standard of care have failed.

There is no other country in the world that has elevated MAiD as a first-line medical treatment on demand, as an unmodified Bill C-7 would do.