Summary Report on End-Of-Life Care (euthanasia) In Québec.

The following report was published by the disability rights group, Toujours Vivant - Not Dead Yet on April 12, 2019 and republished with permission.

By Amy Hasbrouck and Taylor Hyatt

Québec’s Commission on end-of-life care issued a summary report of the status of end-of-life care in Québec. The report deals with palliative care, continuous palliative sedation (CPS), euthanasia (administered or not), and the activities of the Commission itself. But the document only includes data up through March of 2018.

The report presents some obvious findings:

• The number of euthanasia and CPS are increasing. 
• Some doctors, hospitals, and regions provide more palliative care, CPS, and euthanasia than others. 
• Most of the people who die by euthanasia and CPS are over 60 years old and have cancer.
  

The report identifies some problems, such as that the Commission doesn’t have the data necessary to say how many people who need palliative care aren’t getting it. But we are aware of, or can predict other problems that are not addressed by the report, such as:

• People forced to live in institutions are requesting and receiving euthanasia; 
• We don’t know how doctors decide if a person is subject to “external pressure” to request euthanasia, and whether psychosocial, economic and discrimination-related factors are taken into account, besides coercion and abuse. 

Palliative care
 
The Commission admits it doesn’t have data to prove that the gaps in palliative care services observed in a report published in 2000 still exist, but they’re pretty sure that’s the case. The only data available count people who are receiving palliative care services, or who apply for euthanasia.

Service gaps exist in all areas where palliative care is delivered; home-hospice services, hospital-based palliative care units and free-standing hospices.

The report focuses on palliative care as an option only for people at the end of life. This despite the fact that effective pain relief is essential to many people with disabilities, and the authors propose expanding euthanasia to people who are not at the end of life.

The section on palliative care doesn’t address services to prevent institutionalization and requests for euthanasia, which are central to the Truchon/Gladu and Lamb cases.

Continuous Palliative Sedation
 
Of the people who died by Continuous palliative sedation:

• The report provides more detail about symptoms that justified CPS than about the kind of suffering that lead to requests for euthanasia: 
• Psychological / existential distress = 58%; 
• Physical pain = 28%; 
• Difficulty breathing = 25%; 
• Delirium and agitation = 20%.
  

• Ninety-four percent filled out and signed the consent form. In the other cases: 
• The form was not signed, but was in the medical file; 
• The form was missing from the file; 
• “oral” consent was given by the person or their family; 
• The form was not signed because the substitute decision-maker was absent.
  

• According to medical records, 83% of people received palliative care before asking for CPS and 6% never had palliative care. Information was not available in the remaining 11% of cases.

• Eighty-one percent died within three days of when CPS was started.

Euthanasia (administered)

• The number of requests was ten times more than anticipated before the program started. 
• “According to data gathered by the Commission, 1,632 people received MAiD in Québec between December 10, 2015 and March, 31, 2018.”  
• Footnote 33 states “the Commission is aware that the total of MAiD (1,632) … does not exactly correspond to the total declared in the reports from institutions and the Collège des Médecins du Québec shown in the latest report of the Commission’s activities,” published in December of 2018. That figure was 1,664, a difference of 32 euthanasia. The Commission does not explain this discrepancy. 
• It’s unclear whether the 1,632 figure comes from the total reported by institutions and the CMQ, or from doctors’ forms. In fact, nowhere in the 124-page summary report does the Commission explain why the number of euthanasia reported by institutions and the CMQ has been higher in the three annual reports, than the number declared by doctors. 
• Of the doctors’ declaration forms submitted to the Commission, 84 came in more than six months after euthanasia was provided. 
• By the Commission’s count, more than 60 euthanasia had not been reported by doctors as of March 31, 2018; 11 doctors’ reports were still missing when the summary report went to press. 
• As well, footnote 57 mentions “around 20” euthanasia that were not reported by the doctors or facilities, but which came to light following audits by institutions that found the information in their pharmacy records.
  

• The average time between signing the request and administration of euthanasia was 12 days. 
• The Commission describes the reasons for euthanasia request (suffering) in the broadest possible terms; Physical suffering, psychological suffering, or both. Not surprisingly, 89% reported both. The report did not specify how many people had what kind of discomfort (physical pain, breathing problems, nausea, existential suffering, feelings of loss of dignity, problems with self-esteem, grief, etc). 
• Of note, the Commission appears to have checked off “physical suffering” even where it wasn’t an issue. Footnote 43 states: “In light of the totality of information listed on the forms, physical suffering was determined to be present even if the form indicated that it was well managed or that there was only minor physical discomfort.” 
• The Commission says that 80% of people were receiving palliative care when they requested euthanasia, and 89% were getting it when MAiD was administered. However the Commission makes no assurances as to the quality or quantity of that service. This percentage of palliative care access is higher than that reported in a study from McGill University we reported on last December. 
• The authors note that the number of euthanasia performed at home in Quebec (20%) is half that of other parts of Canada (>40%) and Europe. Some people were admitted to hospital just to be euthanized. 
• The Commission estimates there could be up to 1,500 euthanasia performed in Québec during the fiscal year ending March 31, 2019. That’s almost as many as in the 28 previous months. 
• The data confirm the theory that there are a few “death doctors” who specialize in medical homicide, plus many other physicians who do one or two euthanasia per year.
  

Euthanasia not administered

• Of the 2,462 requests, 830, or just over 1/3, did not result in euthanasia. Such requests are not reported, so the commission had to look at the medical records of the people who made a request to determine the outcome, and to learn why euthanasia did not take place. The reasons fell into three broad categories: 
• the person was deemed ineligible, 
• the request was withdrawn; or 
• the person died before euthanasia can be carried out.
  

• The reasons euthanasia was not administered: 
• The person was not eligible when the request was made (191) because:  
• They were not at the end of life – 97; 
• They were incapable of giving consent when the request was made – 58; 
• They did not have “intolerable suffering” when request was made – 48; 
• They did not have a “grievous and irremediable medical condition” – 37; 
• Their medical condition was not in an advanced state of irreversible decline – 35; 
• (Some people were ineligible for multiple reasons.)
  

• The person became ineligible during the evaluation process (164) because: 
• They lost capacity to give consent – 156; 
• Their suffering was relieved such that it was no longer intolerable – 3; 
• Other – 5.
  

• The person died before the evaluation was completed – 168; 
• The person withdrew their request or changed their mind – 167; 
• The person died before euthanasia could be administered – 67 
• Other / information not available – 73.
  

• The authors note that the variability between different locations comes from diverse interpretations of eligibility criteria, especially “end of life” and “constant and unbearable” suffering. 
• The Commission suggests that the fact that 51% of people who asked for euthanasia were not at the “end of life” and 30% were incapable of giving informed consent corresponds with the public’s desire to expand eligibility to these populations. Our view is that the fact that some people are excluded means the eligibility criteria are working, at least somewhat.
  

The application process

• Oral requests are often not documented on the request form until the evaluation process is nearly completed. 
• The authors say people are being discouraged from making a written request for euthanasia, and are being told, informally, that they wouldn’t be eligible. 
• The Commission downplayed problems with delays in receiving form, and numbers of errors and incomplete forms.
  

The activities of the Commission

• The report says nothing about what the Commission intends to do about the deaths of people who were deemed ineligible, or where the safeguards were not complied with
•  In 11 cases, the person was not eligible for euthanasia; 
• In 10 cases, the doctor didn’t talk with the person to ensure they were giving free and informed consent, and the persistence of their suffering; 
• In 9 cases, the consulting doctor examined the person before the euthanasia request was even signed; 
• In 5 cases the form was countersigned by someone who was not a health-care professional; 
• In 2 cases the doctor did not ensure that the safeguards were complied with.
  

• The Commission’s backlog of evaluations is glossed over. They’ve evaluated 1,498 of the 1,632 euthanasia declared (92%), leaving a backlog of 134 cases even a year later. This is especially pressing given the commission’s estimate for the number of euthanasia for the fiscal year just ended. 
• There are references to improvements promised by the electronic reporting system. But the report skips over problems mentioned in the annual reports related to:  
• How many forms are incomplete or have errors; 
• How many letters and phone calls are necessary to correct or complete the forms, or to track down missing forms; 
• Euthanasia reports that are not transmitted at all.
  

• Nor is there any discussion as to how these problems will be dealt with in the future. 
• The media coverage of the release of this summary report was a frenzy of pro-euthanasia propaganda, criticism of the number of people who are being denied their “right” to euthanasia, and calls to expand eligibility and speed up the evaluation process. We hope that our observations, our sober second thoughts, will not be completely lost in the hubbub.

Third Report From Québec’s Euthanasia Commission - 142 unaccounted deaths.

Published by Toujours Vivant - Not Dead Yet.

This report was researched and written by Amy Hasbrouck and Taylor Hyatt.

Three years ago, on December 10, 2015, Québec’s euthanasia program went into effect. Unlike the federal law, Québec provides euthanasia upon request to eligible persons, as well as “Continuous Palliative Sedation” without the eligibility requirements and safeguards connected to a euthanasia request.

The Commission on end of life care released its third report on the province’s euthanasia program on December 7, covering the period from July 1, 2017 to March 31, 2018, with cumulative data from December of 2015. The Commission adjusted the reporting period to coincide with Québec’s fiscal year, which runs from April 1 to March 31.

• Previous report: Québec Euthanasia data from the Commission on end-of-life care.

As in previous reports from Québec, the most striking fact in this third report is the difference between the number of euthanasia reports submitted by doctors, and the number of euthanasia reported by institutions and the Collège des médecins du Québec. During the reporting period, the Commission received 708 forms (including five for deaths administered in previous years) while this second stream of information from the College de medecin du Québec showed 845 cases of euthanasia (a difference of 142 deaths during the reporting period) representing almost 17 % of the deaths. The report does not acknowledge, or attempt to explain this difference.

We did a summary of the report’s statistics, which we will put up on our website in the documents/reports section.

The Commission reported that 45% of the forms filed by doctors needed follow-up for additional information. Letters and telephone calls were required for 334 forms, and 90 doctors received a second letter when they failed to provide the information the Commission asked for.

The Commission examined a total of 782 forms during the reporting period,

• 741 were looked at for the first time. 
• 41 were given a second look, in light of additional information received.  
• 658 were forms that came in during the current period. 
• 83 cases were held over from year.
  

727 cases were decided during the reporting period. Of those, the Commission found:

• 90% (658) complied with the Québec eligibility criteria and safeguards; 
• In 7% of cases (50) no determination of compliance was possible, because:
  
  • Additional information was not provided (23 cases) 
  • In 27 cases, the information provided was still not enough to decide whether the doctor complied with the law.

• 3% (19 cases) did not comply with the eligibility criteria and safeguards. This included: 
• three people who were not eligible because they did not have a “serious and incurable illness;” and
• two instances where the doctor who approved and performed euthanasia only met with the person on the day euthanasia was provided.

Similar figures are shown in the cumulative statistics of Québec’s program for the period from December 10, 2015 to March 31, 2017. While the Commission states that 1,493 euthanasia reporting forms were received from doctors during the period, Institutions and the CMQ report 1,664 euthanasia deaths. Thus, 171 deaths are unaccounted for, probably unexamined and may or may not comply with eligibility requirements and safeguards.

In the past three years, the number of euthanasia has increased steadily in every six month period.

• 161 – 1st period (12/15-6/16) 
• 280 – 2nd period (7/16-12/16) 
• 344 – 3rd period (1/17-6/17) 
• 437 – 4th period (7/17-12/17) 
• 542 – 5th period (1/18-6/18) (estimate based on 271 from 1/18-3/18)

Of the 1,374 total cases decided up until March 31, 2008,

• 90% (1,245 cases) complied with the eligibility requirements and safeguards; 
• In 4.8% (67 cases) no determination of compliance was possible: 
• 4.5% (62 cases) did not comply:  
• 9 cases – Doctor didn’t speak to the person on different occasions to ensure persistence of suffering and wish to die, and capacity;* 
• 7 cases – Person was not eligible:  
• 5 cases – Person did not have a “serious and incurable illness”; 
• 2 cases – The person was not at the end of life;

• 6 cases – Second doctor signed off before euthanasia request was signed;* 
• 5 cases – The person who countersigned the request was not a health care professional;* 
• 4 cases – The person did not have health insurance; 
• 2 cases – Doctor did not ensure compliance with safeguards.* 
• In the 29 remaining cases, the second doctor was not independent of the first. However this legal requirement was removed by the minister of health in February of 2017.

* In these cases, the failure of administrative safeguards could put the person’s life at risk.

• So to recap, we have: 
• A “medical treatment” that was supposed to be an exceptional option in exceptional cases, that is now in regular use, regardless of whether palliative care is in place; 
• Substantial increases in the number of people being euthanized every six months, for a total of 1,664 (as of last March); not counting 1,831 continuous palliative sedations performed since 2015; 
• 171 deaths unaccounted for; 
• 67 deaths where compliance could not be determined; 
• 22 deaths where important procedural safeguards were not followed; 
• 7 deaths of people we know were not eligible for euthanasia; and 
• Hundreds of instances where doctors don’t file reports, refuse or were unable to provide information necessary to determine whether they complied with safeguards or the person was eligible for euthanasia.

Isn’t that enough evidence to show that something's amiss?

Toujours Vivant-Not Dead Yet is a non-religious organization by and for disabled people. Its goal is to inform, unify and give voice to the disability rights opposition to assisted suicide, euthanasia, and other ending-of-life practices that discriminate against people with disabilities.

They present a weekly online discussion in English every Friday at 3 p.m. to offer up-to-date information about assisted suicide, euthanasia and ending-of-life practices for the disability community.

Please click on the link: https://www.youtube.com/watch?v=OpWjpN5ZLmE to join the webcast.

Québec euthanasia report: 14% non compliance rate with the law.

Amy Hasbrouck

President, Euthanasia Prevention Coalition.

Director, Toujours Vivant-Not Dead Yet.

December marks the first anniversary of Québec’s euthanasia program, and serious questions about compliance with the law are already emerging.

Thus far, the Commission on end-of-life care has provided two reports, one at the six-month mark, and one at nine month mark. 

The Québec euthanasia commission report that was filed on August 31 stated that 262 euthanasia were reported by doctors in Québec, and 263 continuous palliative sedations were reported by institutions as of June 30. 

The number of completed euthanasia's were more than three times higher than the original estimate given by Québec’s health minister, Gaetan Barrette, who believed there would be about 100 euthanasia deaths in the first year.

The reports from the Commission consist of information from institutions (for the first six months), as well as the forms filled out by doctors each time they perform euthanasia (over nine months). At the six month mark, the institutional data showed 167 euthanasia as of June 9. However as of June 30 only 161 doctors’ forms had been filed. This discrepancy leads us to question whether doctors are reporting every instance of euthanasia.

As of August 31, the Commission was already behind in reviewing and ruling on doctors’ reports of euthanasia. According to the nine-month totals, only 198 of the 262 euthanasia records had been examined. Of those, only 148 had been evaluated for compliance with the law.

Of the 21 cases in which the commission found a failure to comply with the law, 18 failed because the second doctor was not independent of the first physician. Health Minister Barrette stated in media interviews that he is considering making some adjustments to simplify the paperwork and ease the obligation of seeking a second opinion from an objective and independent doctor.

Of the remaining three cases, the Commission found that two of the people were not at the “end of life” as defined by the law. In the other instance, the Commission ruled the person did not have a “serious and incurable illness.”

The 21 cases that did not conform to the law represent 14.2% of 148, while the three found with eligibility violations represent a 2% error rate.

The report includes no information about the underlying cause of the request, the nature of the “intolerable suffering” or any demographic information about the people making the request, or the doctors granting them.

This report raises many questions. First, is the commission equipped to examine and rule on the number of euthanasia cases it will face if it already had a backlog before the end of the first year?

Second, how do we know that doctors are actually reporting all euthanasia deaths? This is a chronic and serious problem in Belgium; who’s to say it won’t become a problem in Canada?

Third, if the government’s response to the 14% error rate is to remove the requirement that the second doctor be independent, how will it respond to the 2% of cases where errors of eligibility occurred? What penalties will those doctors face who do not comply with the eligibility requirements? Who will enforce the law?

Fourth, the information furnished in the report is not comprehensive enough to enable the reader to know if those who received euthanasia were eligible, and if all safeguards were followed. Without detailed information, researchers will not be able to study the demographics and reasons people request euthanasia, to understand the public policy impact of this law. 

Read also: Québec euthanasia - deaths higher than expected.

Palliative care leaders oppose Québec Liberal government's possible plan to introduce euthanasia bill.

By: Dr Balfour Mount, the father of palliative care in Canada.

and Dr Serge Daneault, the chief of palliative care at University Hospital in Montreal.

Dr Balfour Mount

This letter was in the Montreal Gazette on April 23, 2014.

We congratulate Philippe Couillard on his victory in the April 7 election. Nonetheless we feel compelled to express our deep disappointment, and that of many medical colleagues and other Quebec citizens, at his announcement the day after the election that he intends to reintroduce Bill 52, including medical aid in dying.

Dr Serge Daneault

Knowing that in October 2013 he expressed serious reservations about the “medical aid in dying” component of Bill 52, we are mystified by his about-face on this very grave question. It is impossible to legalize euthanasia without putting vulnerable patients at risk, as the experience in Belgium and other countries shows clearly. Bill 52, with or without the amendments, goes even farther than the Belgian law; it defines medical homicide as health care and requires that it be available to all patients who meet the exceedingly broad criteria set out in the bill. As a physician, he is conscious of the power imbalance between physicians and their patients, and how patients can be manipulated to consent even by well-meaning health professionals.

The majority of the citizens and health professionals who made submissions to the Select Committee on Dying with Dignity in 2010-11 opposed legalization of euthanasia, but the report recommended it. The fact that the vast majority of palliative care physicians oppose euthanasia was systematically ignored by the commission and the preceding government. The public, which seems to be clamouring for so-called death with dignity, is largely unaware that what is being proposed to them is a homicidal act and that skilled palliative care and wise management of end-of-life decisions are sufficient to address the fears leading to their request.

From the legal and political point of view, it is clear that the Quebec government lacks jurisdiction to legalize euthanasia, which is contrary to the Criminal Code of Canada, and that this component of the bill will be challenged in court, cause a confrontation with the federal government and ultimately be found illegal. We urge Couillard to examine the legal opinions of the ministry of Justice on this aspect and to publish them as he has promised to do with those regarding the validity of the Secularism Charter (Bill 60).

Balfour Mount MD
Emeritus Eric M. Flanders Professor of Medicine, McGill University

Serge Daneault MD
Chief, Palliative Care Service, Centre hospitalier de l’Université de Montréal (CHUM)

Quebec's Bill 52 and the Belgium euthanasia law are not safe.

By Alex Schadenberg, 
Executive Director / International Chair
Euthanasia Prevention Coalition.

The Québec government recently passed Bill 52, at second reading, a bill that would decriminalize euthanasia. The Québec government is currently debating amendments to Bill 52 and it is expected that Bill 52 will go to a final vote early in 2014. For more information on Bill 52 read: Québec's Bill 52 is not safe.
Sign the petition: Québec's euthanasia Bill 52 is not safe.


The Québec government based Bill 52 on the Belgian euthanasia law. The Quebec government Dying with Dignity Committee stated that there is no evidence, in Belgium, of abuse or a "slippery slope" concerning euthanasia in Belgium.

Yet, on November 13, 2013, I debated, in Brussels, Dr Bernheim, a long-time euthanasia promoter in Belgium. After presenting the facts that are contained within this article, he stated: "There are problems with the Belgian euthanasia law."

Every Québec citizen and every Canadian needs to know the truth about the Belgian euthanasia law, especially since Bill 52 is based on the Belgian law.

Assisted deaths without request.

A study that was published in the (CMAJ June, 2010) found that 32% of all assisted deaths in the Flemish region of Belgium are done without explicit request. A similar study that was published in the (CMAJ June, 2010) found that 45% of euthanasia deaths involving nurses in Belgium were done without explicit request.

The study found that the demographic group that was most likely to die by an assisted death without request was someone who was over the age of 80, who was incapable of consenting, had an unpredictable end-of-life trajectory and died in the hospital. The first study concluded that the findings: 

"fits the description of a vulnerable patient group at risk of life-ending without request."

Belgian nurses euthanize patients.

The Belgian euthanasia law specifically limits the act of euthanasia to physicians. A study that was published in the (CMAJ June, 2010) found that when nurses were involved with the euthanasia death the lethal dose was injected by the nurse 12% of the time. The study indicated that in 12 cases the doctor was not present at the time of injection and twice, the nurse did not consult the physician. All of these acts are technically illegal in Belgium.

There has never been an attempted prosecution for abuses of the Belgian euthanasia law.

The under-reporting of euthanasia.

A study that was published in the (BMJ Oct 2010) concluded that euthanasia deaths are significantly under-reported in the Flemish region of Belgium. The study found that only 52.8% of assisted deaths in the Flemish region of Belgium were reported. That means that 47.2% of all assisted deaths were not reported.

Many people claim that the Belgian euthanasia law is controlled and yet the data indicates that many euthanasia deaths are never reported.

The growth of euthanasia in Belgium.

Belgian government statistics indicate that the number of reported assisted deaths increased from 1133 in 2011 to 1432 in 2012, representing a 25% increase over the previous year and 2% of all deaths in Belgium. The number of reported assisted deaths in 2010 was 954. It is important to note that these statistics do not include the unreported assisted deaths.

Data indicates that many assisted deaths are being done without request and are not reported. This proves that the actual practice of euthanasia is not accurately represented in the Belgium government report.

Euthanasia requests are rarely refused.

A study that was published in November 2011 found that only 5% of euthanasia deaths are refused in Belgium, compared to a 12% refusal rate in the Netherlands. The study stated that: "Unfortunately we have no information on the reasons why the attending physicians from our study refused to grant requests."

Belgium euthanasia control and evaluation commission is biased.

Dr Wim Distelman, who is the co-chair of the Belgian euthanasia commission, is also operates a euthanasia clinic that has become known for doing controversial euthanasia deaths.

This year, in January; it was reported that Belgian identical twins, Marc and Eddy Verbessem, were euthanized, with the approval of Distelmans, because they feared becoming blind.

In February it was reported that a woman with Anorexia Nervosa died by euthanasia.

In February, Tom Mortier wrote an article about the euthanasia death of his depressed mother by Distelmans in April 2012. Mortier stated:

The death of my mother has triggered a lot of questions. How is it possible that people can be euthanised in Belgium without close family or friends being contacted? Why does my country give medical doctors the exclusive power to decide over life and death? ... What are the criteria to decide what “unbearable suffering” is? Can we rely on such a judgment for a mentally ill person?

In September, a person, who was not physically ill, died by euthanasia after a botched sex-change operation.

Expansion of criteria for euthanasia.

The Belgium government is currently debating the expansion of euthanasia to include teenagers, infants, children with disabilities and people with Alzheimer’s and Dementia. The main reason for expanding the criteria for euthanasia in Belgium is that doctors want to change the law because they are breaking the law already. 

The statement that euthanasia in Belgium has not experienced an expansion, or a slippery slope, is obviously false. The Belgium euthanasia law has undergone a series of incremental extensions from turning a blind eye to acts that were originally considered unacceptable, to expanding the definition for psychological suffering to expanding euthanasia to include children with questionable consent to allowing euthanasia for people with dementia who cannot consent.

Quebec euthanasia bill (Bill 52) is not safe.


The Belgian people should be very concerned that those who are incompetent and/or depressed are dying by euthanasia and very few requests for euthanasia are rejected.

The Quebec government will be debating Bill 52, a bill that will legalize euthanasia as a form of medical treatment. Bill 52 is based on the Belgian euthanasia law.

Bill 52, the Quebec government bill to legalize euthanasia that is based on the Belgian euthanasia law. Bill 52 is dangerous, it is bad medicine for people with disabilities, and Bill 52 is not safe.

Sign the petition: Québec's euthanasia Bill 52 is not safe.

Learn more about the practice of euthanasia and assisted suicide in Belgium and the Netherlands by buying the book: Exposing Vulnerable People to Euthanasia and Assisted Suicide. Exposing Vulnerable People examines the data from recent studies and publishes the facts that the media is not willing to publish and that the euthanasia lobby ignore.