For people with dementia, a fight for the right to die | MacLean's

Minister of Health Ginette Petitpas Taylor speaks outside the House of Commons, in Ottawa on Thursday, Nov. 30, 2017., about medical assistance in dying (Adrian Wyld/CP)

Minister of Health Ginette Petitpas Taylor speaks outside the House of Commons, in Ottawa on Thursday, Nov. 30, 2017., about medical assistance in dying (Adrian Wyld/CP)

Ron Posno was diagnosed with mild cognitive impairment—a precursor to dementia—in 2016, and soon after, the London, Ont., resident re-wrote his will. He already had a Do Not Resuscitate order in place, and to this he added instructions for the niece who was his substitute decision maker that at a specific point in the progress of his illness, she was to seek medical assistance in dying on his behalf.

The eight conditions that Posno identified as signalling the proper time for his death are like a photographic negative that also reveals what he considers a life worth living. When I am unable to recognize and respond to family and friends; when I frequently experience hallucinations, paranoia or acute depression; when I become routinely incontinent; when I am unable to eat, clean or dress myself without assistance: that is when I want it to be over.

But then Posno’s niece, a lawyer in Toronto, informed him that an advance request like this for medical assistance in dying (MAID) was against the law and she would have no ability to act on it once he could no longer consent.

Posno had assumed that this request was basically an extension of his DNR: a statement of his desires for medical treatment in a given set of circumstances. He found it incomprehensible that he could legally state that he did not want CPR and the instruction would be followed if he were unconscious with a DNR in place, but in the face of an illness that would eventually render him unable to provide informed consent, he couldn’t request MAID on behalf of a carefully delineated future version of himself.

https://www.macleans.ca/society/for-people-with-dementia-a-fight-for-the-right-to-die/

Wanting to die at 'five to midnight' - before dementia takes over | Andrew Bomford

It's not unusual for Dutch patients with dementia to request euthanasia, but in the later stages of the disease they may be incapable of reconfirming their consent - one doctor is currently facing prosecution in such a case. But fear of being refused is pushing some to ask to die earlier than they would have liked.

Annie Zwijnenberg was never in any doubt.

"The neurologist said: 'I'm sorry, but there's no way we can mistake this - its Alzheimer's," says Anneke Soute-Zwijnenberg, describing the moment her mother was first diagnosed.

"And she said: 'OK, then I know what I want.'"

Anneke's brother Frank chips in: "Maybe she hesitated for five seconds, and said: 'Now I know what to do.'"

They both knew she was referring to euthanasia.

You could say Annie's story is a textbook case of how euthanasia is supposed to happen in the Netherlands - with very consistent and clear consent. But there are other cases where the patient's consent is less consistent, and at the final moment, less clear.

https://www.bbc.com/news/stories-47047579

Certainty is not a defensible standard for policy making in the context of assisted dying | Udo Schuklenk

[…] The chairperson of the group drafting the report on mental illness and assisted dying, Kwame McKenzie, made a statement to Canadian news media in support of current government policy that excludes competent people who suffer from refractory mental illness from access to assisted dying. He reportedly cautioned that ‘no one can be completely certain that a mentally ill patient is never going to get better’.[3] Which takes me to the actual topic of this blogpost: certainty as a standard for health policy making. Complete certainty, if that were ever possible in the context of health and disease, where most decision making is based on probability as opposed to certainty, might be a defensible threshold if nobody were harmed by the implementation of such a high standard. If the setting of a high standard were cost neutral, there would be no good reason not to have such a standard.

https://ethxblog.blogspot.com/2019/01/certainty-is-not-defensible-standard.html

Europe's top rights court to hear Belgian euthanasia case | AP

LONDON (AP) — Europe’s top human rights court has agreed to hear a case being brought against Belgium by a man whose mother was euthanized in 2012 for depression, the second case that implicates one of Belgium’s leading euthanasia doctors.

In a statement Tuesday, lawyers for Tom Mortier said they brought their case to the European Court of Human Rights in Strasbourg after Belgian authorities declined to pursue it.

Robert Clarke, one of Mortier’s lawyers, said there were some “deeply worrying” details about the case.

“This was a woman who was under the care of a psychiatrist and according to medical definition was a vulnerable person,” Clarke said. “The state had a duty of care to protect her and it failed.

https://apnews.com/8217108af4f841b3a2d551ca73eecb9c

Medical Assistance in Dying | The Expert Panel on Medical Assistance in Dying

In December 2016, the CCA was asked by then Minister of Health Jane Philpott and Minister of Justice and Attorney General of Canada Jody Wilson-Raybould to undertake independent reviews related to medical assistance in dying (MAID). Specifically, the CCA was tasked with examining three particularly complex types of requests for MAID that were identified for further review and study in the legislation passed by Parliament in 2016: requests by mature minors, advance requests, and requests where a mental disorder is the sole underlying medical condition.

On December 12, 2018 the CCA released the three final reports of the Expert Panel, one on each type of request: The State of Knowledge on Medical Assistance in Dying for Mature MinorsThe State of Knowledge on Advance Requests for Medical Assistance in Dying; and The State of Knowledge on Medical Assistance in Dying Where a Mental Disorder is the Sole Underlying Medical Condition.

https://www.scienceadvice.ca/reports/medical-assistance-in-dying/

An Ethical-Legal Analysis of Medical Assistance in Dying for Those with Mental Illness | Tanner | Alberta Law Review

One of mine!

This article considers sources of opposition to allowing access to medical assistance in dying for individuals with mental illness. It originated with an observation by members of the University of Toronto Joint Centre for Bioethics that in mainstream Canadian culture — as well as in political, academic, and professional circles — such opposition remains widespread (and often reflexive). This opposition exists even in light of broad support for access to assisted dying for individuals with illness manifesting in physical suffering. Most Canadians treat the prospect of assisted dying for those with mental illness with suspicion, and it is worth exploring why this opposition persists, what arguments can be leveled to support it, and whether those arguments can be sustained. To that end, I identify five objections to assisted dying for the mentally ill that seem to characterize the public debate, and argue that none are sustainable. They either rely on false premises or otherwise fail to secure the conclusion that assisted dying should be off limits to people suffering from mental illness, even when such mental illness is their sole underlying condition.

https://www.albertalawreview.com/index.php/ALR/article/view/2500

Hasty change to assisted dying bill a serious error

When complex and controversial draft legislation is processed rapidly, significant potential implications of the bill – and any amendments made to it – can be missed. Unfortunately, this is precisely what happened with the federal government’s Bill C-14 to establish the federal rules regarding medical assistance in dying (MAID) in Canada. The legislation was introduced on April 14, 2016 and came into force on June 17, 2016.

Many, many amendments were considered and, unsurprisingly, most of the attention was focused on the most obviously controversial amendments — particularly on the unsuccessful attempts to allow access to MAID beyond only those individuals whose “natural death has become reasonably foreseeable.”

By contrast, another amendment received very little attention before being passed — a mere 10 minutes out of many hours of debate. Yet this amendment created the potential for extended intolerable suffering.

http://policyoptions.irpp.org/magazines/january-2018/hasty-change-to-assisted-dying-bill-a-serious-error/

That’s not Dad, that’s the Alzheimer’s that speaks, by Evelien van Veen (de Volkskrant 18 May 2018) – TrudoLemmens

It is March 9, 2018, and Luc Beemsterboer (52) enters the nursing home where his father has been living for three days. He walks through the long hallway and types in the access code for the glass sliding doors, behind which dad just happens to arrive. A little man, a little crooked by old age, neat jacket suit. When he sees his son, he momentarily pretends to run past him, a teasing twinkle in his eyes.

“How are you doing, Dad?”, asks Luc, when the tall and the short man stand head to head.

“Shitty”, is the answer – with a tone of: what did you expect?

Jacques Beemsterboer (80) is not in a nursing home because he really wanted it badly. He would by far have preferred to stay with his Toos, with whom he has been married for 55 years, in their new flat in the center of Papendrecht. But it did not work anymore. Jacques has Alzheimer’s, is confused, at home he ran around at night as a ghost, keeping Toos busy with him at the most impossible times. Sometimes, he realizes that he has dementia. “It enters your life insidiously,” he says when you ask him about it. “I can still participate quite well in conversations about nearly anything, but will I still know about it in fourteen days, that’s another question.

https://trudolemmens.wordpress.com/2018/07/14/thats-not-dad-thats-the-alzheimers-that-sounds-by-evelien-van-veen/

Voluntarily Stopping Eating and Drinking Is Legal and Ethical - The ASCO Post

Terminally ill patients with cancer will sometimes ask their clinicians for help with assisted or hastened death.1 Although palliative care and hospice care can usually address the concerns of most patients, some have physical or existential suffering that is refractory to comfort and supportive care. Consequently, these patients sometimes persist in their requests for help with a hastened death. Because many clinicians are unsure how to respond to such requests, here we clarify the status of medical aid in dying laws and one important, yet still obscure, option for terminally ill patients looking to end their lives: voluntarily stopping eating and drinking

http://www.ascopost.com/issues/june-25-2018/voluntarily-stopping-eating-and-drinking-is-legal-and-ethical/

 

Act of love: The life and death of Donna Mae Hill - The Globe and Mail

The morning of May 17, 2018, my mother ate her last meal in the breakfast room of the Passage, a hotel in downtown Basel, Switzerland. Mom had black coffee, a croissant and a piece of cheese. She lingered over a small chocolate truffle that I had picked out for her at 7 a.m. that day in a store in the old quarter of the city. My mother had always had a weakness for chocolate and I had a weakness for indulging her.

Then we waited for Ruedi Habegger to pick us up at the hotel and drive us to the designated apartment in nearby Liestal, Switzerland, where people go to die.

Mr. Habegger – an affable, middle-aged man who co-founded the Eternal Spirit Foundation, an organization which facilitates assisted deaths – offered my mother the use of a walker to get up a flight of stairs when we arrived.

“I still walk perfectly well,” she told him, although she held the railing carefully as she mounted the stairs. Five foot zero, hazel eyes, a white shock of hair and in practical black shoes, my mother climbed slowly but steadily.

Mom died that day. Her name was Donna Mae Hill, and she was 90 years old. She died by her own hand. I was present for her death, along with her 29-year-old granddaughter, my niece Malaika; we had travelled with her to Switzerland to comfort her in the act.

https://www.theglobeandmail.com/opinion/article-act-of-love-the-life-and-death-of-donna-mae-hill/

Can we die? The seriously ill need clarity

More than 2,000 people have died with the help of a doctor since Canada’s new medical assistance in dying law, Bill C-14, received royal assent on June 17, 2016.

This legislation has, however, come under sustained criticism for its ambiguity. When it was first introduced, concerns were immediately expressed about the eligibility criterion that “natural death has become reasonably foreseeable.”

This phrase “reasonably foreseeable” was deemed by many to be unfamiliar and unclear for physicians and their regulators. It has led to confusion and a variety of interpretations among providers and assessors of medical assistance in dying (MAiD).

Now the Nova Scotia College of Physicians and Surgeons has developed a statement that clarifies this criterion. This will remove a barrier to access to MAiD for some seriously ill patients in the province — such as, for example, a dialysis-dependent patient who decides to stop dialysis.

https://theconversation.com/can-we-die-the-seriously-ill-need-clarity-94475

Fight to the death: Why Canada’s physician-assisted dying debate has only just begun - The Globe and Mail

[...] How to balance often competing values has bedevilled the country ever since the Carter decision, amidst a conservative medical culture that espouses, but is reluctant to deliver, patient-centred care at end of life; a federal government that enacted a restrictive Medical Assistance in Dying (MAID) law; and provincial exemptions that allow publicly funded faith-based institutions and long-term care homes (outside Quebec) to refuse to provide MAID on their premises.

While constitutional challenges slowly grind their way through the hierarchical provincial court systems, so many doctors have erred on the side of caution that some desperate patients have voluntarily refused to eat and drink, in order to hasten their deaths. Others have died in secret by self-inflicted and often violent means. Still others who can afford it have booked flights to Switzerland, the only country that allows foreigners to receive an assisted death. A good number of patients who have been approved for MAID have died before it could be provided. Many who are acutely ill have forgone pain drugs and other medications to remain lucid enough to affirm consent before the procedure. And patients suffering from intractable mental illness and other non-terminal diseases, who would have qualified under the Supreme Court decision in Carter, have not even been able to have their requests assessed under the current law.

https://www.theglobeandmail.com/opinion/sandra-martin-physician-assisted-death-debate/article37742446/

Faith-based health facilities shouldn’t prolong patient suffering

Christopher De Bono’s Policy Options article on medical assistance in dying (MAID) attempts to persuade us that there is no problem with health care providers refusing to allow MAID in faith-based institutions. I am a MAID provider in the Comox Valley in British Columbia. Until two months ago our local acute care hospital, the only hospital in our community, was Catholic. It prohibited MAID. Fortunately, that hospital, St. Joseph’s, has now been replaced by a new secular facility, the Comox Valley Hospital. Our hospice is still in Catholic hands.

I believe that no individual health care worker should be required to take part in MAID, be they a physician, a nurse, a pharmacist or any other practitioner, and De Bono would agree.

Where he and I part company is over faith-based institutions. An individual health care professional — the actual hands-on provider of health care — has a conscience, and for some this means they cannot take part in MAID. Bricks and mortar cannot have a conscience, however. Neither can the institutions housed within those bricks and mortar. Institutions and facilities can possess an ethos — not a conscience — but this must not be allowed to interfere with the rights of individual patients seeking legal treatments and with the staff willing to provide them. This is especially true when almost all the funding of the work of the institutions is provided by the general public, as is the case for most hospitals and hospices across Canada.

http://policyoptions.irpp.org/magazines/december-2017/faith-based-health-facilities-shouldnt-prolong-patient-suffering/

From Oregon to Belgium to Victoria – the different ways suffering patients are allowed to die

[...] Under the Victorian model, there is scope for a doctor to administer the drugs if the patient is physically incapable of doing so themselves. To access the scheme, the patient must meet strict criteria. They must have an illness likely to end their life within six months (12 months for neurodegenerative conditions such as motor neuron disease) and be experiencing suffering that can’t be managed in a way tolerable to the patient. They must be over the age of 18 and a resident of Victoria.

Victoria’s model is pretty conservative compared to other jurisdictions. Some broaden eligibility to minors, non-residents and people suffering non-terminal conditions and disabilities. Others include access to both voluntary euthanasia and physician-assisted dying.

Here is a roundup of the laws around the world that permit assisted dying or euthanasia and ways in which they differ.

http://theconversation.com/from-oregon-to-belgium-to-victoria-the-different-ways-suffering-patients-are-allowed-to-die-88324

What could help me to die? Doctors clash over euthanasia

GHENT, Belgium (AP) — After struggling with mental illness for years, Cornelia Geerts was so desperate to die that she asked her psychiatrist to kill her.

Her sister worried that her judgment was compromised. The 59-year-old was taking more than 20 pills every day, including antidepressants, an opioid, a tranquilizer, and two medicines often used to treat bipolar disorder and schizophrenia.

About a year later, on October 7, 2014, her doctor administered a lethal dose of drugs. It was all legal procedure in Belgium, which has among the world’s most permissive euthanasia laws.

“I know it was Cornelia’s wish, but I said to the psychiatrist that it was a shame that someone in treatment for years could just be brought to the other side with a simple injection,” said her sister, Adriana Geerts.

https://www.apnews.com/4b6877fab2e849269c659a5854867a7b/%22What-could-help-me-to-die?%22-Doctors-clash-over-euthanasia

One family’s experience with medical assistance in dying

The end came with a smile.

The 78-year-old patient, diagnosed two years earlier with advanced lung cancer and told two months prior that it had metastasized to his brain, was in palliative care at Princess Margaret Cancer Centre, surrounded by his loving family, when medical assistance in dying (MAID) was administered.

He was asked by his physician to tell a joke. Midway toward the punchline, he passed away.

http://www.uhn.ca/corporate/News/Pages/one_family_experience_with_medical_assistance_in_dying.aspx

Adam Maier-Clayton's controversial right-to-die campaign - BBC News

The boundaries permitting assisted suicide under Bill C-14 are deliberately narrow in scope - and exclude people suffering solely from a mental illness who aren't also grievously and terminally ill.

Adam Maier-Clayton believed the law was ambiguous, unconstitutional and discriminatory.

Convinced his condition was untreatable, he began a vocal campaign of media activism, arguing that Canada should follow the example of Belgium and the Netherlands.

In those countries, people who believe their lives have become intolerable because of severe mental illness can seek permission to receive lethal drugs with a doctor or nurse's help.

"Every Canadian deserves this right, the right to have the ability to terminate pain that is chronic, incurable," he told the Canadian Press in September last year.

http://www.bbc.com/news/world-us-canada-40546632

Barbara Kay: Doctors who conscientiously object to providing euthanasia referrals should not be forced to do so | National Post

Barbara Kay writes:

From June 12 to 15, the Ontario Superior Court of Justice heard legal arguments relating to conscience rights for doctors in Ontario. Five doctors and three physicians’ organizations want the court to declare portions of policies created by the College of Physicians and Surgeons of Ontario (CPSO) a violation of doctors’ rights enshrined in the Charter. A decision is expected later this year.

CPSO, the respondent in the case, has stated they may suspend or sanction a doctor that refuses to participate in an assisted suicide, which they — duplicitously in my opinion — call “medical aid in dying” (MAID). Euthanasiasts prefer the euphemism because “aid in dying” sounds softer and gentler than “kill.” But the true definition of MAID is palliative care, whose future as a medical discipline has been thrown into uncertainty by the CPSO’s bullish stance on assisted suicide.

The CPSO’s conscience-hostile position is both unnecessary and unjust.

http://nationalpost.com/g00/opinion/barbara-kay-doctors-who-conscientiously-object-to-providing-euthanasia-referrals-should-not-be-forced-to-do-so/wcm/edef9249-e544-41e8-9c8d-8372c49514c0

Advocates hail judge’s decision in woman’s assisted death appeal | Toronto Star

A 77-year-old woman seeking medical assistance in dying has a “reasonably foreseeable” natural death, a judge declared Monday in an attempt to clear up uncertainty that left her doctor unwilling to perform the end-of-life procedure for fear of a murder charge.

The decision has been hailed by advocates for clarifying a confusing part of the assisted-dying legislation.

https://www.thestar.com/news/gta/2017/06/19/advocates-hail-judges-decision-in-womans-assisted-death-appeal.html

Link to the .pdf of the decision.