Wednesday, July 17, 2019

"Do or Refer" Doctors Are Not Allowed to Use Their Best Judgment for Individual Patients (No More Jeanette Halls)

This article was published by Choice is an Illusion on July 16, 2019

Margaret Dore
Margaret Dore Esq., MBA*

Yesterday, a doctor asked me about "do or refer" provisions in some of the newer bills seeking to legalize assisted suicide in the United States. For this reason, I now address the subject in the context of a 2018 Wisconsin bill, which did not pass.

The bill, AB 216, required the patient's attending physician to "fulfill the request for medication or refer," i.e. to write a lethal prescription for the purpose of killing the patient, or to make an effective referral to another physician, who would do it.

The bill also said that the attending physician's failure to comply would be "unprofessional conduct" such that the physician would be subject to discipline. The bill states:

[F]ailure of an attending physician to fulfill a request for medication [the lethal dose] constitutes unprofessional conduct if the attending physician refuses or fails to make a good faith attempt to transfer the requester's care and treatment to another physician who will act as attending physician under this chapter and fulfill the request for medication. (Emphasis added).[1]
The significance of do or refer is that it's anti-patient, by not allowing doctors to use their best judgment in individual cases.

Jeanette Hall with her son.
Consider Oregonian Jeanette Hall. In 2000, she made a settled decision to use Oregon's assisted suicide law in lieu of being treated for cancer. Her doctor, Kenneth Stevens, who opposed assisted suicide, thought that her chances with treatment were good. Over several weeks, he stalled her request for assisted suicide and finally convinced her to be treated for cancer.

Yes, Dr Stevens was against assisted suicide generally, but he also thought that Jeanette was a good candidate for treatment and indeed she was. She has been cancer free for 19 years. In a recent article, Jeanette states:

I wanted to do our law and I wanted Dr. Stevens to help me. Instead, he encouraged me to not give up and ultimately I decided to fight the cancer. I had both chemotherapy and radiation. I am so happy to be alive!
If "do or refer," as proposed in the Wisconsin bill, had been in effect in Oregon, Dr. Stevens would have been risking a finding of unprofessional conduct, and therefore his license, to help Jeanette understand what her true options were.

Is this what we want for our doctors, to have them be afraid of giving us their best judgment, for fear of sanction or having their licenses restricted or even revoked?

With proposed mandatory "do or refer," assisted suicide proponents show us their true nature. They don't want to enhance our choices, they want to limit our access to information to railroad us to death.

[1] AB 216 states:

156.21 Duties and immunities. (1) No health care facility or health care provider may be charged with a crime, held civilly liable, or charged with unprofessional conduct for any of the following: 
(a) Failing to fulfill a request for medication, except that failure of an attending physician to fulfill a request for medication constitutes unprofessional conduct if the attending physician refuses or fails to make a good faith attempt to transfer the requester's care and treatment to another physician who will act as attending physician under this chapter and fulfill the request for medication. (Emphasis added).
* Margaret Dore is an attorney in Washington State where assisted suicide is legal. She is also president of Choice is an Illusion, a nonprofit corporation opposed to assisted suicide and euthanasia worldwide.

Tuesday, July 16, 2019

774 Ontario euthanasia deaths in the first 6 months of 2019.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition.

The Ontario Office of the Chief Coroner released the updated data for MAiD (euthanasia and assisted suicide) deaths in Ontario indicating that since legalization (June 17, 2016) there have been (3303) 3302 euthanasia deaths and 1 assisted suicide death, as of June 30, 2019.

According to the Ontario data, there were 774 reported assisted deaths in the first six months of 2019, 1499 reported assisted deaths in 2018, 841 reported assisted deaths in 2017 and 189 reported assisted deaths in 2016.
The number euthanasia deaths are increasing. There were 406 reported assisted deaths between April 1 and June 30 and 368 reported assisted deaths in the first three months of the year.

In March I published an article explaining that the assisted deaths, in Canada, increased by more than 50% in 2018 from 2704 reported assisted deaths in 2017 to 4235 reported assisted deaths in 2018.

The Euthanasia Prevention Coalition urges its supporters to show the Fatal Flaws Film in their communities.

Last week I received a call from an Ontario nurse who was feeling pressured to participate in euthanasia. Today I received another call from an Ontario nurse, in another community, who was concerned about pressure being placed on nurses to participate in euthanasia.

In May, the Ontario Court of Appeal upheld a lower court decision that Ontario doctors did not have do euthanasia but they had to do an "effective referral" meaning referral for the purpose of the act.

Conscience rights for medical professionals in Ontario need to be protected.

The Euthanasia Prevention Coalition works with Compassionate Community Care (CCC) to offer advice and support for family members and friends who are concerned about an assisted death or end-of-life medical treatment decision. Contact CCC at: 1-855-675-8749.

Contact the Euthanasia Prevention Coalition if you have concerns with the circumstances related to a euthanasia death at: 1-877-439-3348.

Monday, July 15, 2019

Suicide promotion websites linked to euthanasia activist.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Euthanasia activist, Philip Nitschke, has been selling suicide information, devices and drugs, online, for years.

A recent article published by The Sun newspaper concerns school kids buying, online, lethal death row drugs to die by suicide. This is not only a phenomenon in the UK but it is a world-wide tragedy and it is not new. I have written about this problem on several occasions. Exit International may also have set-up a suicide promotion website in Canada.

Isobel Narayan
The Sun reported:

An inquest in 2013 heard how Isobel Narayan, 16, killed herself with the Death Row execution drug she had researched online on suicide forums and acquired by post. 
She was said to have suffered a "crisis of confidence" a month before her death and even typed up a list of reasons why she should kill herself. She later drank a lethal concoction of the drug - mixed with a mouthwash before going to bed. 
The A-level student, from Didsbury, Manchester, was found dead the next day by her devastated parents. 
Manchester Coroner Nigel Meadows said it was a "matter of public concern" she was able to obtain the drug.
It concerns me that the Sun article also promotes Nitschke. Nitschke is referring to websites that take money from people without sending the lethal drugs, the article misconstrues his comment as condemning websites, like his, who will sell suicide to anyone.

This is a difficult topic knowing that this article may lead to depressed people obtaining suicide drugs online. 

Nitschke makes money by selling suicide. He calls it freedom, when in fact he is ending the freedom to live for depressed people, including teens.

Saturday, July 13, 2019

Belgian man asks for euthanasia because he cannot afford medication

This article was published by Bioedge on July 13, 2019.

By Michael Cook

A Belgian man with a serious degenerative blood disease has told the media that he has applied for euthanasia because he cannot afford the expensive medication he needs to live a normal life.

Christophe (no surname was given) has four children, aged 4 to 10, but he separated from his partner two years ago. He is living alone and can no longer work. When his children visit on the weekends, his parents need to accompany them in case he falls or faints.

He suffers from a rare disorder, paroxysmal nocturnal hemoglobinuria, which destroys red blood cells. Patients have a life expectancy of 10 to 20 years from the time of diagnosis. Christophe is constantly fatigued, falls, and suffers from breathlessness and swollen glands.

PNH is rare, with an annual rate of 1 to 2 cases per million and there are only two known treatments: a bone marrow transplant and a drug called Eculizumab (or Soliris) which costs US$500,000 annually. None of Christophe’s relatives are a good match for a transplant and he cannot afford Eculizumab, even with help of Belgium’s healthcare system.

He began thinking about euthanasia three years ago. A year ago, he started doing the paperwork. "I sleep all the time, that's why I'm waiting for euthanasia, I'm waiting for the answer ... because if I can only live like this ... like a vegetable," he told the Belgian outlet RTL.

Michael Cook is editor of BioEdge

Friday, July 12, 2019

Of Vincent Lambert and Ethical Rubicons

This article was published by National Review online on July 12, 2019.

Wesley Smith
By Wesley J Smith

Vincent Lambert is dead.

The forty-two-year-old Frenchman, who breathed his last yesterday in Reims, didn’t die by accident. It wasn’t “his time.” He died slowly, over nine days, by forced dehydration—a demise that causes radical drying of tissues, cracking membranes, potential seizures, and slow organ failure.

This was not a case of euthanasia, per se—even though taking away a person's sustenance can only have one outcome. Rather, Lambert’s forced dehydration was deemed simply a matter of bioethics carried out in law, an emotionally difficult but routine matter of removing the “medical treatment” of “artificial nutrition and hydration”—because his wife wanted it and the courts judged it to be in his best interests.

How was this in his best interests? Lambert was profoundly disabled with a catastrophic brain injury that left him diagnosed as permanently unconscious (although his parents insisted that he was minimally aware). But he did not require mechanical breathing assistance or kidney dialysis. All the poor man needed to survive was what every human requires: food and water.

Lambert’s case made huge news in Europe because it was the subject of a bitter court fight between his wife and his parents (both his mother and father wanted Lambert to live). The story was less discussed in the United States, partly because of distance, but also because we crossed the dehydration Rubicon in 2005 with the death of Terri Schiavo, when courts ordered her tube-feeding halted.

Lambert's case closely paralleled Schiavo's. Both were profoundly disabled with a severe brain injury. Neither had left formal written instructions about their desires if they became seriously incapacitated. Both deaths were preceded by bitter intra-family legal disputes. Schiavo’s two siblings opposed her dehydration; Lambert’s full-siblings supported it, but his half-siblings sided with his parents. Both Schiavo and Lambert were Catholic patients, and in both cases pro-dehydrators accused family members opposed to dehydration of being motivated merely by religion, and not by true concern for the patients.

Some argue that these cases demonstrate a bias against the equal worth of cognitively disabled patients. That argument went nowhere in the Schiavo case. But in the Lambert case, the Committee on the Rights of Persons with Disabilities at the United Nations intervened, requesting that his dehydration be delayed while it investigated whether removing his food and water would be a discriminatory act. That request gave Lambert a temporary reprieve when a French Court of Appeals reversed a trial court’s approval of the dehydration. But the victory was short-lived, as the French Supreme Court later reversed the decision.

I hope the U.N. Committee continues its investigation. Lambert (and Schiavo) were not terminally ill. They only died because those with the power to decide deemed their lives not worth living. Is it not discrimination based on disability to decide that death is in a patient’s best interests because a patient is cognitively incapacitated? Is it discrimination based on disability to remove food and water from people because they are cognitively incapacitated, when we would not (yet) starve incompetent patients who willingly eat?

In the U.S., popular support for Schiavo’s dehydration was a Rubicon. Before the national imbroglio about her dehydration, many Americans were unaware that the cognitively disabled could die in this way. Post-Schiavo, polls showed that most Americans supported the approach, and that settled the “food and fluid” issue. Today, unconscious and minimally conscious patients are dehydrated in all fifty states as a matter of medical routine, usually with the family's acquiescence. If there is a family dispute, the law will usually give the benefit of doubt to death instead of life, unless the patient made it abundantly clear before injury or illness that they wanted care to continue. I suspect that Lambert will be such a Rubicon throughout much of Europe.

But that will not be the end of it. Bioethics is never static. The mainstream movement’s utilitarian reasoning is based on a “quality of life” ethic, instead of a “sanctity/equality of life” approach. That philosophy, embraced by the medical establishment, will lead the country to view induced death as the proper response to serious illness and injury. Prepare for the following trends:

  • Advocacy to withhold spoon feeding from people with advanced dementia: The euthanasia movement wants the law to allow advance medical directives to instruct caregivers to starve the signer—even if they willingly eat and drink—once their dementia reaches a predetermined level of decline. If adopted, it would force nursing homes and family members to starve and dehydrate these patients to death—perhaps even if they ask for food. 
  • Increase in “futile care” laws: Texas, Virginia, and other states permit doctors and/or hospital bioethics committees to refuse wanted life-sustaining treatment based on their views about the quality of the patient’s life and/or costs of care. In the future, such laws could permit doctors to order tube-feeding withheld over the objections of family.  
  • Healthcare rationing: With the increased crisis in medical costs, we could one day see laws placing time limits on coverage for the cost of care of profoundly disabled patients like Lambert and Schiavo.  
  • Lethal injection instead of dehydration: If euthanasia/assisted suicide spreads, at some point people will conclude that lethally injecting these patients is more humane than dehydration—which it undoubtedly would be. One of the advocacy points behind these dehydration cases has been to acclimate us to eliminating suffering by eliminating the sufferer. Once that premise is accepted, lethal injection becomes the logical choice.  
  • Harvesting the organs of profoundly disabled patients: Dehydrating patients to death renders their organs unusable for transplantation. But if we ever allow their euthanasia killings, that paradigm would change. Belgium, Netherlands, and Canada already conjoin euthanasia with organ harvesting and some bioethicists have opined in professional journals that the cognitively disabled (and others) should be organ harvested as the means of euthanasia.
As Fr. Richard John Neuhaus once wrote, bioethicists “professionally guide the unthinkable on its passage through the debatable on its way to becoming the justifiable until it is established as unexceptional.” With the Schiavo and Lambert dehydrations, removing sustenance from the cognitively disabled has been “established as unexceptional.” Futile care is at the “justifiable” stage. Organ harvesting conjoined with euthanasia, as the means of killing patients, has become “debatable.”

Unless society collectively rejects the logic and moral premises of the “quality of life” ethic, I see few impediments—other than the weak reed of emotional revulsion—to keep us from following a dark bioethical path.

Wesley J. Smith is a senior fellow at the Discovery Institute. His latest book is Culture of Death: The Age of “Do Harm” Medicine.

Thursday, July 11, 2019

We mourn the death of Vincent Lambert, while thankful that an agreement will protect the life of Hannah Cement.

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

Vincent Lambert with his mother.
We mourn the death of Vincent Lambert, a cognitively disabled man who died by dehydration after France's highest court ordered that he be denied food and fluid, that they defined as medical treatment.

Our online petition pleading that President Macron save his life received more than 139,000 signatures.

While the death of Vincent Lambert is a tragic case of disability discrimination, Hannah Cement, a woman in Ottawa, will live until her natural death.

In early May, 2019, the United Nations Committee on the Rights of People with Disabilities intervened in the Lambert case stating that causing Lambert's death by dehydration contravened his rights as a person with disabilities. 

Section 25f of the United Nations Convention on the Rights of Persons with Disabilities requires nations to:
25(f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
The decision of the highest court of appeal in France, to withhold food and fluid from Lambert, was a death sentence and a denial his human rights.

Lambert was a cognitively disabled man who was not otherwise dying or nearing death. To directly and intentionally cause his death by withholding fluids is euthanasia by dehydration. Lambert's fluids were withheld for the purpose of causing his death, rather than allowing a natural from his medical condition.

Today EPC was informed that Hugh Scher, the lawyer for the Cement family, achieved a negotiated agreement whereby Hannah will continue to be fed and hydrated and receive basic medical care until she dies a natural death.

Hannah Cement is a 62 year-old woman with Down Syndrome and dementia, who is a life-long member of an Orthodox Jewish family and community. The substitute decision makers for Hannah, her family, refused to consent to a course of treatment that constituted the withdrawal of all treatment and care, including food and fluids and providing only comfort care.

The Euthanasia Prevention Coalition (EPC) was granted limited intervention standing, in the court, based on our concerns related to the definition of food and fluid as medical treatment.

In late March, 2019, the Consent and Capacity Board (medical decision making tribunal) made a terrible decision in the Cement case, essentially ordering the withdrawal of all medical treatment from Hannah. This would have led to Hannah dying a similar death as Vincent Lambert.

The family appealed the decision to the Ontario Court of Appeal and the Euthanasia Prevention Coalition, once again, sought intervention standing in the case.

The news that the doctor, the hospital and the Cement family reached an agreement to assure that Hannah will continue to receive basic medical care until she dies a natural death is an incredible victory.

While we mourn the death of Vincent Lambert, we are very thankful for the legal agreement to enable Hannah Cement to continue living until she dies a natural death.

EPC International Euthanasia Symposium - Sept 20 in Rome

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Instituto Maria Bambina
top of the hill beside columns
On Friday September 20, 2019 there is a one-day Euthanasia Symposium in Rome sponsored by the Euthanasia Prevention Coalition. The Symposium features recognized leaders and amazing speakers in an incredible location. The Symposium will be followed by a leaders meeting on September 21.

The euthanasia Symposium is organized with the Matercare 15th International Conference. The conference is at the Instituto Maria SS Bambina across from St. Peter's Basilica in Rome. 

For more information contact:

The speakers include:

Alex Schadenberg
Alex Schadenberg, Executive Director and International Chair, Euthanasia Prevention Coalition will speak about the world-wide situation. Alex is an author, leader, and world expert.
Dr Paul Saba, Coalition of Physicians for Social Justice in Québec will speak about child euthanasia and the expansion of euthanasia, in Canada, once legalized. Dr Saba is an author with experience as a physician in Québec. 
Dr Anne Hanson
Dr Annette Hanson is a forensic psychiatrist and assisted professor of psychiatry at Tufts University School of Medicine will speak about euthanasia for psychiatric reasons. Dr Hanson has published research articles including the 12 myths about assisted suicide and medical aid in dying.
Catherine Glenn Foster, (lawyer) Americans United for Life, will speak about the culture shift after assisted suicide is legalized. She was the founding Executive Director of EPC-USA.  
Dr William Toffler
Dr William Toffler, Physicians for Compassionate Care Oregon, will talk about the effect of 20 years of assisted suicide in Oregon. Dr Toffler is a leading voice against assisted suicide in America. 
Amy Hasbrouck, (lawyer) Not Dead Yet leader and Euthanasia Prevention Coalition President will speak on eugenics and the concerns of people with disabilities. Amy has extensive experience as an American who now lives in Canada. 
Gordon Macdonald
Dr Gordon Macdonald, Care Not Killing Alliance UK, will speak about the politics of assisted suicide in the medical community. Dr Macdonald has extensive experience in the BMA debate on assisted suicide.
Fabian Stahle, a researcher from Sweden will speak about Moral Disengagement and the legalization of assisted death. 
Register for the full conference or for one day at (Registration link). You can stay at the Maria Bambina. 

EPC has also organized a leaders meeting for September 21 at the same location.

Free Online Conference celebrating 20 years of protecting people from euthanasia and assisted suicide.

Alex Schadenberg
Join EPC on Saturday July 20 to celebrate the 20th anniversary for 
Alex Schadenberg as the Executive Director of the Euthanasia Prevention Coalition.

EPC is celebrating the occasion with a free live online conference from (1 pm to 3:00 pm eastern time) featuring key presenters.

You need to go to the EPC youtube page and press subscribe (Link).

The conference will include: 
  • Amy Hasbrouck, (EPC - President), 
  • Taylor Hyatt (Toujours Vivant – Not Dead Yet researcher),
  • Maxime Huot Couture - Vivre dans la Dignite Quebec)
  • Catherine Glenn Foster (AUL - President), 
  • and Alex Schadenberg.
EPC is focusing on the International campaign to prevent euthanasia and assisted suicide and Canada's five year review of its euthanasia legislation that is scheduled for June 2020. 

Wednesday, July 10, 2019

Palliative care experts are opposed to euthanasia.

This article was published by HOPE Australia on July 9, 2019

One of Western Australia's (WA) most senior palliative care nurses and a New Zealand based palliative medicine specialist have both come out in opposition to the looming euthanasia laws in their respective jurisdictions.

After more than 30 years working in the public and private palliative care sector, nurse Lou Angus has sent a letter to the Western Australian government signed by 39 of her colleagues.

Accusing the government of catering for a small minority, Angus asks, “What are our politicians doing for the 96 to 99 percent of dying people who want better care whilst they are dying?”.

A sage of the system, Angus points out that if palliative care for terminal patients were to begin 12 months out from death, it would prevent people “yo-yoing” in and out of hospital, saving the health system millions of dollars. She writes:
Assisted suicide is not dignified. Dignity begins with a belief that the dying person deserves the best care we can offer. It requires a belief that dying people are not a burden, no matter how complex they are.
Angus attacks the WA government’s push for death on demand, stating emphatically, “Better health care is the answer,” and emphasising the need for more end-of-life health care.

All the way across the ditch, palliative medicine specialist Dr Amanda Landers echoes Angus’ sentiments, writing:
The answer to bad deaths is not euthanasia. The answer is a better understanding of basic medical ethics, of palliative medicine, of what happens to the body when it is dying, and how to care for someone at the end of life.
A specialist of over a decade, Landers is exasperated by the many misconceptions in the community regarding the matter:
I get the feeling the general public think death is a black-and-white issue. I cannot think of a subject that has more grey… 
Palliative care is multi-disciplinary to match the many dimensions of a person and their family/whanau. I have been dismayed at the attacks on our area of medicine in the media and on the health professionals who dedicate their lives to looking after these vulnerable New Zealanders. 
…I have realised there are many misconceptions that have taken root in our community which need weeding out.
Dr Landers directly addresses the most common arguments for death on demand, explaining how each of them can be effectively addressed by proper palliative care.

Palliative care professionals are passionate about the difference that their profession can make in the lives of terminally ill patients. They are also overwhelmingly opposed to the legalisation of euthanasia and assisted suicide. When Victoria and New South Wales were each considering legalising these practices, 101 Australian palliative care specialists signed an open letter, asking for the rejection of the legislation and petitioning for adequate resources to help them to care for those at the end-of life:
“It would be unethical for any state jurisdiction in Australia to move to legalise for assisted suicide or euthanasia whilst many ill, aged and disabled Australians cannot yet access the support they need. Such a move would not enhance choice, but instead reduce choice around the care and support for those in real need.”
In the words of Professor Roderick MacLeod, “It is telling that those in the medical profession who are most opposed to assisted dying are those who deal with people who are dying on a daily basis, the palliative medicine physicians.”

Intellectually disabled persons deserve equal respect

This article was published by Mercatornet on July 9, 2019.

By Audrey Cole

In a tribute to the late Jean Vanier, Margaret Somerville refers to his memoir in letters. She writes:
“Jean Vanier’s letters gently show that among the many gifts disabled people can offer us are lessons in hope, optimism, kindness, empathy, compassion, generosity and hospitality, a sense of humour (balance), trust and courage. But, as Jean Vanier recognizes, to do that they must be treated justly; given every person’s right to the freedom to be themselves; and respected as members of our community. That requires us to accept the suffering, weakness and fragility we see in them, which means, as Jean Vanier emphasizes, we must first accept those realities in relation to ourselves. Most of us find that an enormous challenge and flee.”
I could think of no better way to open my formal contribution to this Colloquium than those words. Neither my late husband, Fred, nor I, could have lived with ourselves had we flown from that challenge when our son, Ian, our only child, was born 55 years ago with some now corrected physical disabilities and what has turned out to be a very severe intellectual disability.

We soon became conscious of those gifts to which Jean Vanier refers. Ian offers such lessons to the world at large on a daily basis. I suspect that Ian, himself, has no understanding or recognition of his pedagogical skills or of their effect on others but, even without the capacity to speak, read, write or understand unfamiliar words or situations, he is a skilled and persistent teacher.

However, to learn from Ian, one has to be willing to believe that he has something to say. And therein lies the problem. Justice, freedom to be who we are and respect as equals are “givens” for most of us. They are not something we must constantly seek out, fight for or defend day by day. Those “givens” are not there for people such as my son!

Recorded history suggests it was ever so. Suffice to go back a mere hundred years for an example: that keeps us within the lifetime of Ian’s Dad who, were he still with us, would be fast approaching 101.

In 1919, Mr Justice Frank Hodgins presented his commissioned Report to the Ontario Provincial Parliament on The Care and Control of the Mentally Deficient and feeble-minded in Ontario.

Justice Hodgins called for the immediate segregation from the community of any offspring of those identified as “feeble-minded,” noting the “terrible menace to the public" they represented. He shared the commonly held belief that not only was so-called “feeblemindedness” hereditary, it inevitably implied a proclivity for criminal behaviour and promiscuity. He opined that women so labelled should be "permanently deprived of their liberty" for, "with animal passions fully developed, and the sense of propriety and responsibility dwarfed, with deficient will power, these unfortunate women would remain beyond the power of redemption if left at large.”

What if they wished to get married? This supposed menace led Justice Hodgins to recommend new legislation prohibiting marriage of any “mentally defective or feeble minded” person and ensuring imprisonment of anyone knowingly and wilfully marrying or having “carnal connection” with such a person. Obviously, the fundamental right to develop natural, loving relationships was to be denied to such people.

The prejudices and lack of respect reflected in Judge Hodgins’ report were not restricted to his era. They continue today. My son’s life experience provides numerous examples of shockingly disrespectful statements and events, some in a medical context, others in broader social contexts.

Ian was three weeks old before I recognised the insults to which both he and I had, already, been subjected. Ian had set his own timetable for arrival and did so three weeks earlier than expected, late in the evening before my obstetrician was to take an early morning vacation flight. I appreciated that he came in to deliver Ian but he left immediately.

Three weeks later I saw him again. He greeted me by saying that he had been “so surprised” when I had given birth to “a Mongolian idiot!” I was shocked! With only a three-week experience in the disability world, I knew that such terms were no longer acceptable. (However, I must say that, with the exception of that one ignorant obstetrician, Ian, Fred and I have had the benefit of the care and concern of some wonderful doctors.)

That experience made me think! Why had Ian been whisked away before I had chance to see him face to face? He had been placed for a few moments in the curve of my arm as we were quickly wheeled into the recovery room and immediately separated. I had seen something from that angle, but what? My family doctor arrived and told me there were problems, the tied tongue which had been addressed, the club foot which would require medical intervention and “other things that we’ll talk about later”. I spent a sleepless night wondering what I had seen that had not been explained, what were those “other” problems?

The moment I saw my baby the following morning, I knew. He had Down syndrome. The nurses were forbidden to talk to me except to say I was not allowed to breast feed as intended and there was no point in arguing as I had already been given medication to stop production of milk. No consultation, whatsoever! I felt helpless!

As soon as my husband arrived to visit I sent him to our family doctor not only to confirm my belief about our son but also to ask what was going on!

Although I knew he would be ineligible under laws of the time, when Ian reached school age I phoned the school board and asked about the process were there to be a child of school age not attending school. The answer was “when we hear about it, as we usually do, we approach the family.” “Well”, I said, “I have never been approached and my son doesn’t attend school.” “Madam, your son must attend school!” was the instant response. I replied that my son had Down syndrome and was immediately cut off by the comment: “Oh, well, if he has a disability we don’t take any action! He doesn’t have to go to school!” Despite already knowing, the arbitrary and disrespectful dismissal was yet another shock!

In the mid 70s, Ontario’s Minister of Education and other Cabinet members were holding public meetings around the Province. I attended with other parents of children excluded from school. By chance, two of us met the Minister in a doorway. I seized the opportunity to tell him that we were protesting the exclusion from school of our children with severe disabilities. His response was instant, “Surely you don’t expect us to be in the business of building hospitals for the vegetables -- or whatever you call them!” This time, I was ready. “Well, Minister,” I said, “we certainly don’t call our children ‘vegetables’! We call them our school-aged children and we expect them to be in school!” He turned and walked away without further comment.

The most hurtful example was at the funeral of my husband’s oldest and closest friend from high school days. At the graveside, Ian and I were introduced by Fred to a doctor educated in Canada but practising in the US. He was the son of another of their high school contemporaries. Ignoring Ian, when introduced, the doctor asked, “How old is he?” Somewhat taken aback, we answered automatically. “Ahh!” he responded, “Just before amniocentesis!”

There seemed to us to be no limit to the disrespect. The physical and sexual assaults Ian has experienced in his day programmes and the lack of responsibility of those people paid to provide for his care at those times is hardly believable. Equality, in addition to respect, implies equal justice. Where is the justice for those who cannot speak for themselves? There was no justice in Ian’s experiences of assault, physical and sexual, and only partly because some perpetrators also had intellectual disabilities. That was not always so.

In his early teens but still in diapers, Ian arrived home from his day programme with a lacerated penis, still bleeding. No staff would admit to awareness of the situation yet Ian was in a toilet training programme and unable to diaper himself. He had no speech and insufficient manual dexterity to manage knives, scissors or other sharp instruments or even a zipper. Enough said!

The matter of legal capacity and people with intellectual disabilities has been a concern of the Community Living Association for over half a century. We see laws that rely on cognitive/functional tests for legal capacity as discriminatory. Such tests put people with intellectual (cognitive) disabilities in immediate jeopardy of being placed under guardianship from the age of majority, thus losing their status as equal citizens solely on the basis of disability.

The most blunt and graphic description of guardianship I ever heard was in the early ‘90s at a hearing of an Ontario Legislature Standing Committee. Explaining to an Opposition Member the difference between advocacy and guardianship, Trudy Spinks, a senior Government lawyer, said that “guardianship replaces the person!” (Ms Spinks retires in July from her current position as Ontario’s Deputy Public Guardian and Trustee).

Who on this earth wants to be replaced? Although heading to age 92, I have no wish to be replaced should my capacity diminish. Nor did Ian’s dad, nine years my senior, have such a wish. Nor, I suspect, do any of us in this room and elsewhere, wish to undergo a transformation of social status to legal non-personhood and its almost inevitable lowering of equal respect. Such social diminishment is particularly detrimental for people already struggling to be accepted as equals.

So why would we assume that people such as my son or people whose cognitive skills are diminishing, would wish to be demoted to that status? I can only assume that it truly is, as Jean Vanier suggests, because we, society at large, consciously or otherwise, do not always consider such people as deserving of equal justice or even of equal respect.

It was that lack of respect that galvanised my efforts to bring together people who might seek a solution. In the mid 80s, provincial governments were reviewing their guardianship laws in light of Canada’s new Charter of Rights and Freedoms. My provincial Association’s lawyer served on the Ontario Government’s Advisory Committee. Despite significant modernization, nothing in the proposed new Substitute Decisions legislation would change the assumption that the Ians of the province needed guardianship.

I wrote a strong letter of protest to the President of the Association. The response was a request that I chair a task force. My fundamental question for the task force was one of respect versus non-respect, why people like me, with presumed capacity, were free to use whatever help we could muster in making decisions yet people like Ian, whose capacity was questioned, had to prove they could make decisions independently without such help. We worked hard.

We didn’t manage to stop adoption of the Substitute Decisions Act. We did get prohibitions into the Act under which the Court cannot appoint a guardian if it is satisfied that the need for decisions to be made can be met by alternative means that don’t require a finding of incapacity and are less restrictive than the appointment of a guardian.

We can’t change the nature of guardianship or its history which dates from Roman Empire times but the nature of society can be changed. Guardianship belongs back in that earlier world when Justice Hodgins could talk with authority about the need for the “care and control” of people who, like Ian, had intellectual disabilities. We no longer live in such a society.

If we really think about it, we can see that there is no place for guardianship in a society that says it believes in equality, justice and respect. It just doesn’t fit! In today’s society, we cannot simply look for ways to “replace” people if we think they don’t measure up to our expectations.

Rather, equality, justice and respect call for cooperation and support and for helping each other to share the benefits (and the pains) of society. And that is what supported decision-making does. It is what I want should my cognitive capacity be diminishing. I suspect that it is what most of us who can imagine a future would want. We now have to provide it.

Audrey Cole has deep roots in Canada’s Community Living movement. The birth of a son with Down’s syndrome energized her advocacy in human rights, values and ethics and the social well-being of disadvantaged people. She shares the concern of the disability rights movement that the incessant call for assisted suicide sends a cruel but implicit message that life with disabling conditions is a life not worth living.

This is the text of a talk that she gave last month in Quebec at the 9th International Colloquium of the International Association of Catholic Bioethics on “Caring for Persons with Compromised Agency: Navigating Complexity”.

Tuesday, July 9, 2019

10 reasons why Vincent Lambert should live

Vincent Lambert is being dehydrated to death.
Christophe Foltzenlogel has been a legal expert with the European Center for Law and Justice.

The determination of Vincent Lambert’s parents to save their son’s life, despite his heavily disabled condition, arouses admiration but also a lot of misunderstanding and contempt.
Vincent Lambert ordered to die by French high court. 
Sign the petition: Protect Vincent Lambert's life. 
At a time when Vincent is literally dying of hunger and thirst, these questions and objections, which are either general or particular to Vincent Lambert's case, deserve answer.

1. “His mother should just take her son home and care for him herself!”

Vincent Lambert with his mother.
As a matter of fact, his parents wish to do so and several medical authorities have recognized that Vincent could be perfectly cared for in his parents’ home. They have made several requests to the French courts and this has been expressly and systematically refused. This is the first fundamental problem that is specific to this case: Vincent Lambert is not in a care unit adapted to his situation. He should not be in a palliative care service but in a house or clinic that is adapted and specialized for his disability. Some hospitals and private clinics specialized in this type of disability have offered to welcome Vincent Lambert into their facilities. This was also systematically refused.

In a collective opinion page on April 18, 70 “doctors and professionals specialized in the care of persons with cerebral palsy in a vegetative or pauci-relational state” said about Vincent Lambert that “it is obvious that he is not at the end of life”. The average length of stay in a palliative care unit in France is 16 days. Vincent has been living in a palliative care unit for 10 years. This does shows that he is not at the end of his life.

2. “Nobody would want to live like this, it's not a life!”

Indeed, nobody would want to live in such a situation. It is however a sophism to conclude that one should therefore euthanize a person living in such a situation.

Indeed, it is not because one suffers from one or several illnesses that one would necessarily want to die. Nobody wants to lose an arm in a work accident and become unemployed. However, if such a thing happens, a person does not necessarily lose the will to live. The response of an empathic society should not be to keep a person in his pain by inviting him to put an end to his life so as not to suffer anymore, but to treat him, and to help him understand that life is worth living.

In addition, judging the value of a person’s life is dangerous. What criteria allow to say that a life is worth living? Are they universal and accepted by everyone?

3. “He said that he did not want to be kept in such a state, respect his will!”

This is a point heavily discussed in this case. In fact, he did not write advance directives, although he was a nurse and well-informed of such a possibility.

Moreover, his wife alone claims to report what he would have said, as well as a brother who claims to report his “last wishes”. All his other brothers, sisters, and even his half-nephew stated that Vincent had never said anything to them about it. They all, however, deduced this alleged desire not to be kept alive by virtue of his personality. Is this deduction reliable?

The reality is that most of us have already told our loved ones that we would not want to live in a disabled or declined state. This does not mean, however, that we would want to be euthanized in this case. Even when expressing such a desire clearly while one is in good health, the unanimous experience of caregivers is that once the accident has occurred, the will evolves because the will to live is often the strongest.

Vincent Lambert had his car accident in 2008. But it was only in 2013, after a long conversation with Dr Kariger, favourable to “a path of end of life”, that Rachel Lambert claimed such was the will expressed by her husband. She had not previously made any public comments about that.

On this basis, Dr Kariger initiated the first euthanasia attempt that year on Vincent Lambert. As the doctor continued to hydrate him a minima (250-300mL / day), Vincent Lambert survived hunger and thirst for 31 days. This resilience, which has been maintained until now, is a serious indication of a personal will to live. This is what all the specialist caregivers of these patients say, and according to their experience, patients like Vincent Lambert who no longer want to live or who “drop out psychologically” die in a few days, or even a few hours, without warning signs.

4. “He is no longer conscious of himself; he is a vegetable!”

The question is debated but the various diagnoses established throughout the judicial process indicate that Vincent Lambert is in a chronic state of altered consciousness that includes states ranging from “vegetative” to “minimally conscious state”. He breathes alone, sleeps and wakes up. He is fed by a gastrostomy (feeding tube). His movements and facial expressions are difficult to interpret medically, but there is no doubt that there is a possible interaction with people, however small it may be. For example, he turns his eyes and head towards his mother when she calls him. Several videos taken by his mother attest to his reactions to solicitations and at least a clear awakening of Vincent Lambert, demonstrating that he is not a “vegetable”.

If we consider Vincent Lambert to be in a vegetative state such that he cannot express anything nor even possess awareness of his surroundings – which is contested by his parents, although to this day they cannot claim to know his true will or claim with certainty that would prefer to die. This makes the euthanasia of Vincent Lambert even more shocking. The traditional wisdom is that “when in doubt, the best thing is not do anything”. Here, despite being in doubt, they have already begun to kill him. And if Vincent Lambert were really nothing but a vegetable who does not feel anything and is no longer aware of his environment, why sedate him so that he does not “suffer anymore”?

5. “No to Endless Medical Treatment!”

We entirely agree. However, in the case of Vincent Lambert, he does not need nor is receiving medical treatment. He does not take any medications, undergo regular surgeries, or rely on a respirator to breathe. He is not at the natural end of his life. On 21 November 2018, the medical experts appointed by the Courts affirmed that the “fundamental and primary needs [of Vincent Lambert] do not reveal endless medical treatments or any unreasonable obstinacy toward that end”, and that Vincent Lambert’s medical situation “call[ed] for no emergency measures.”

Admittedly, his feeding and nutrition is accomplished by a tube. This method of administration constitutes a form of care. But what is administered is not medication, nor treatment, nor artificial: it is food, no different than that needed by all other human beings. In addition, in Vincent Lambert’s specific case, it is necessary to note that he is able to swallow small quantities of food. However, his doctors have never sought to stimulate this ability in order to encourage the recovery of his faculties.

Thus, to deprive Vincent Lambert of his nutrition is not to “let him go” or to “let him die”, but to purposefully cause his death. It is erroneous and alarming to see in the assisted nutrition of a disabled person the existence of “unreasonable obstinacy.” There are thousands of people in France today who cannot feed themselves, some of whom are merely ill or extremely aged. Would it be right to let them die as well simply by refusing to feed them?

6. “I am against euthanasia, but I’m not sure that’s actually happening here…”

Yes, it is certainly euthanasia that is occurring here: a decision has been made by a third party, Dr Sanchez, to deliberately deprive a person of food and water in order to bring about his death. Refusing to feed and hydrate a disabled person in order to provoke his death because of the serious nature of his disability constitutes, for a doctor, a denial of the Hippocratic Oath.

If we do not stand firm on general moral principles, we put ourselves directly onto a slippery downhill slope. Admittedly, the medical situation of Vincent Lambert is terrible and difficult, but if he can be euthanized by the will of his guardian and his doctor, why shouldn’t people who have been in a coma for 20 years also be permitted a “worthy” end? And why even wait 20 years? If receiving nutrition by a device is a treatment, why not stop the treatment of other people who cannot feed themselves?

The direction of this slope is that of Belgium, where euthanasia is legally accessible to individuals suffering from depression and other mental disorders, including minors.

7. “His mother is a traditionalist Catholic who makes her son suffer as a consequence of her beliefs—this is revolting!”

When people say it is better to euthanize because “no one would want to live in such a condition,” these people are essentially imposing their convictions on Vincent. As soon as Vincent Lambert could no longer express his own will, any actions taken toward him necessarily became imposed, whether in favour of life or of death. Why would an atheist who does not believe in life after death have any greater right to impose his beliefs on Vincent? It is completely absurd that some people mock the beliefs of Vincent Lambert’s parents in assessing that, once dead, he will not have to suffer anymore. What do they really know about his suffering, anyway?

8. “What enormous costs to the Social Security System!”

Yes, but to base a judgment of life or death on financial considerations is dangerous—for everyone. What about all the people who are stuck in a coma? Or those suffering from serious forms of cancer, whether in the advanced or beginning stages? Should we set an age past which the right to live becomes too expensive for society to support, thereby justifying the euthanasia of all individuals who live past that age? This goes directly against the fundamental principle of our (French) Social Security System: to make contributions according to our level of ability and later receive care in accordance with our needs.

In the specific case of Vincent Lambert, given that he had his car accident while driving from his home to his place of employment, his care is primarily financed by his employer’s insurance company, and not actually “by our taxes”. In addition, the daily fees charged by a specialized facility to which he would be better adapted are two to three times less than that of hospice care. The transfer requested by his parents for the last several years would reduce these costs just as much.

9. “The United Nations has nothing to do with this case. The requirements of its Committees carry no weight in France!”

The United Nations is an international organisation that the Member States have themselves created and accepted by ratifying a constitutional treaty. Indeed, according to our Constitution and the jurisprudence of the Constitutional Council, international treaties ratified by France are integrated into our legal system and have binding force superior to domestic laws.

In this case, the moment France signed the Convention on the Rights of Persons with Disabilities and its Optional Protocol, the government committed itself, according to our own national laws, to recognising that “handicapped persons have the right to enjoy the best possible conditions of health without discrimination based on their disability” and to “prevent all discriminatory refusals to provide medical care or services or nutrition and hydration based on a person’s disability”.

When Vincent Lambert’s parents failed to obtain recognition of their disabled son’s right to life and to care from the French government, it was legitimate for them to bring their case before the Committee on the Rights of Persons with Disabilities, which is charged with ensuring the proper application of said Convention by France.

France has an obligation to respect the request of this Committee to not provoke the death of Vincent Lambert because it has recognised the power of this Committee to prescribe “necessary interim measures to avoid irreversible harm to victims of a presumed violation.” In addition, respect for these measures is a condition of the effectiveness of the right to recourse and appeal in this instance.

10. “All these years of procedures constitute a massive waste of judicial and medical resources!”

No one goes through years of judicial proceedings because they want to or find it pleasing, and this was not what Vincent Lambert’s parents imagined nor wanted either.

At the root of their will to protect the life of their son is obviously parental love, but there is also the conviction to fight injustice and to work for the protection of certain principles and the lives of other people who are in situations similar to that of Vincent Lambert.

It is the injustice and scandal of this case – that of seeing their disabled son suffer from thirst and starvation to the point of death by the decision of a doctor and the judicial system – that morally justify pursuing all possible forms of recourse available under French and International law.

The obstinacy in this case is neither therapeutic nor judicial, it is that of ensuring Vincent Lambert’s death.