Intervention on Bill 52

Toujours Vivant-Not Dead Yet
Talking points
Bill 52
Health and Social Services Commission
October 9, 2013
Introduction

• Thank you for the invitation to speak.
• My name is Christian Debray, Assistant Director of Toujours Vivant-Not Dead Yet.
• I’m here with Amy Hasbrouck, Director of TVNDY.
  • Ms. Hasbrouck has been a disability rights activist for 30 years.
  • She has been involved in the movement of people with disabilities opposed to euthanasia, assisted suicide and other similar practices for 17 years.
  • She holds a bachelors in Journalism and a Juris Doctor.
  • She participated in the advocacy to pass the Americans with Disabilities Act.
  • She’s made many presentations at conferences, before legislative bodies and in the media.  She is the author of many newspaper articles published in North America and the Middle East.
  • She authored a brief in the Guardianship of Robert Wendland in the Supreme Court of California in 2001.
  • She is also the author of a 1997 paper entitled “Misplaced Mercy: Prosecution and Sentencing of Parents who Kill their Disabled Children.”
• TVNDY
  • Was launched in January, 2013.
  • Is a Project of the Council of Canadians with Disabilities to inform, unify and give voice to the disability opposition to euthanasia, assisted suicide and other discriminatory end-of-life practices.

TVNDY’s views on Bill 52

• We applaud efforts to expand palliative care.
• We agree that intermittent palliative sedation should be available.
• We do not agree with the idea of “terminal palliative sedation.”
• We totally reject “medical aid in dying.”

Euthanasia concerns the rights of people with disabilities –

Every person subject to euthanasia has a disability.

• People with disabilities are not at the end of life.  However we are on the front lines of the health care system an we face life-threatening illnesses and terminal prognoses on a regular basis.
• Almost every person who asks for euthanasia has a disability, including people with terminal illnesses.
• This bill is not limited to people with terminal illnesses, regardless of what the Minister says.
• To be eligible the person must have “a serious and incurable illness” which could include many chronic conditions that cause functional limitations, such as multiple sclerosis, diabetes, neuromuscular diseases, lupus, etc.
• The person must be in “an advanced and irreversible state of decline of his capacities” which could describe any severe disability, and many secondary conditions such as pneumonia or a severe skin breakdown.  Also, prognoses are often wrong.
• As for suffering – having a disability does not equal suffering.  Suffering comes from internalized oppression and self-hatred.
• Among those who request assisted suicide in Oregon, the large majority do so because of problems related to a disability, not because of pain.
• This was the case with Dr. Donald Low, whose complaints related to disability.
• The people who demand assisted suicide or euthanasia via the media are all capable of killing themselves, but they choose not to.
• There would be no proposals for euthanasia but for the devaluation and discrimination against people with disabilities.

Discrimination –

TVNDY wants suicide prevention for all.

• When a non-disabled person (such as a victim of gay bashing or a person grieving the loss of a spouse) is suicidal, that person receives suicide prevention services even to the point of being held in a psychiatric hospital.  When a person with a disability says he wants to die, society offers euthanasia almost automatically.
• The assumption that it’s rational for a person with a disability to want to die is based on prejudice, bias and misinformation.
• It’s discrimination and devaluation that diminish the quality of our lives and put us in danger:
  • For a completely objective survey, start a google search on the phrase “disabled people should”.  Google will offer several options to complete the phrase based on the total of all searches.
  • In August 2013, a woman in Newcastle, ON received a nasty letter from a neighbour suggesting that she euthanize her autistic grandson.  The general public condemned the hateful gesture, unlike the case of Annette Corriveau, who in 2012 gained wide public support for her public campaign to kill her two adult disabled children.
• When society allows euthanasia, it’s saying that some lives are less valuable than others
• More than 90% of suicide attempts fail; they are cries for help.  What about the right of people with disabilities to cry for help?
• Discrimination can lead to death by a four-step process:
  • Dealing with a disability requires energy, patience, and flexibility to adapt to circumstances.
  • Add to that the discrimination and external barriers – The daily injuries, insults and injustices inflicted by society can defeat even the strongest spirit at times.
  • When we yield to despair, there’s no safety net, we’re steered away from the suicide prevention services which should be there to catch others who are desperate.
  • This leads to a one-way trip toward euthanasia – which is seen as a gentle end to a tragic life.

Safeguards are insufficient and ineffective.

• The Council of Canadians with Disabilities and the National Council on Disability in the U.S. each studied what would be necessary to assure the safety and rights of people with disabilities if assisted suicide or euthanasia were legalized.  The two groups determined that the necessary steps would be cumbersome and impracticable, thus a complete prohibition remained the best solution.
• Elders and people with disabilities are more than twice as susceptible to financial, emotional and physical abuse as non-disabled people.  Allowing euthanasia would lead to deadly abuse.
  • Learned compliance is a danger for people of all ages with any kind of disability.
  • Under Bill 52, an heir could fill out the form to request terminal palliative sedation or medical aid in dying.
• The safeguards are ineffective.  For example:
  • Even the ultimate safeguard, prohibition, has not prevented illegal euthanasia.  The justice system does not prosecute these cases vigorously.
  • Financial and social pressure can lead people to ask for euthanasia.
  • Competence evaluations are not designed to detect and screen out grief or treatable problems that can lead to suicidal feelings, such as mental health problems or medication side effects.
  • Where assisted suicide and euthanasia are legal, problems and abuse are sometimes not detected for simple administrative reasons:
    • Someone incorrectly places a “do not resuscitate” order on a person’s medical chart.
    • Studies only count the cases of euthanasia that are reported, and don’t detect those that are not reported.
    • Doctors may not don’t file the required reports
    • Deaths that violate the regulations are sometimes not reported
    • Sometimes deaths that occur within program guidelines are not counted as euthanasia
    • Information gathered is minimal and insufficient to indicate the circumstances surrounding the person’s death.
    • The data are destroyed when the annual statistical reports are produced, preventing long-range analysis of the reports.
• Allowing some privileged people to control when and how they will die isn’t worth putting many more elders and people with disabilities in danger.
• Québec and Canada have rejected the death penalty for fear that even one person might be wrongly killed.

Self-determination

• Suicide is not illegal, but it is also not a right.  Most people who ask for medical aid to die could commit suicide.
• The current law gives everyone the right to die by refusing medical treatment, even if that leads to death.
• Medical aid to die gives the control to the doctor: to diagnose, to offer and administer treatment, to determine competence to request help to die, and to kill.  Is that really self-determination?
• The “choice” to die is an illusion.
  • Discrimination lack of access to palliative and home care, and civil rights reduce the quality of life of elders and people with disabilities.
  • If someone dies in pain, it’s not a medical problem, it’s a social problem.
  • No one can make a “free and informed” choice to die as long as there is no choice of where and how to live.
• This law is reminiscent of the quote by Henry Ford: “You can have a car painted any colour, as long as it’s black.”
• For people with disabilities, dignity relates to control and self determination in our lives, not how we pee.

Important Legal Principles

• Dying is not a right, it’s a fact.
• Equal treatment does not always result in justice; sometimes equitable measures are required to redress injustice.
• When doctors are paid by the state to kill patients, that becomes state action, for which the state is responsible.
• When terms are not defined in a law, they will be defined in long, drawn-out and costly court cases, where the outcome is not assured.

The Lived Experience of people with disabilities in Québec –

We are 30 years behind the United States in living standards for people with disabilities.

• Discrimination and devaluation – People with disabilities confront signs of devaluation on a regular basis.
  • When boarding a bus, when other passengers have to wait while the equipment doesn’t work correctly, it’s the person in a wheelchair who gets the nasty looks
  • My colleague in a wheelchair had to endure two classic insults in the same week:
    • Despite wearing a business suit, he was patted on the head by a passing professional, like a child or a dog.
    • While waiting for a friend outside a café, a passer-by put money in his coffee.  And it wasn’t even enough to replace his ruined coffee!
  • Better dead than disabled: All people with disabilities have been told we’d be better off dead, even by our friends and relatives.
• Living options:
  • Nursing home – Residents have no control over their lives.  The daily routines of eating, sleeping, dressing, washing and using the toilet are dictated by the institution’s schedule, not your physical needs.
  • With relatives – Inadequate government support and respite care mean those who help us are often overburdened and exhausted physically and psychologically, a situation that can lead to abuse.
  • Home health agencies – Aides are trained in certain techniques that are supposed to work for everyone, but which suit only a few.  The agency may send a different person every day, and the aide is not responsible to the person with a disability, but to the agency.
  • “Allocation direct/Cheque emploie service” (Direct allocation fee-for-service) – This offers the most individual control , but it’s not widely available.
• Services:
  • Fragmentation by services and benefits by diagnosis or cause of disability leaves many to fall through the cracks.  Services should be available based on functional need.
  • Boards of directors and management of organizations that represent or provide services to people with disabilities are not made up of people with disabilities.  Therefore decisions are made around us, about us but without us.  With a majority of people with disabilities in management positions, services will better reflect our needs.
  • Too much bureaucracy diverts resources from services to management salaries and administrative functions – What percentage of funds allocated to services is spent on administration?
• Access:
  • Health Care – When facilities and equipment are not accessible, that means diagnosis and treatment are delayed or denied.
  • Housing – There is a dearth of accessible housing, and long waiting lists for accessible apartments and home modifications.
  • Public accommodations – The vast majority of stores and services open to the public are not accessible to people with disabilities.
  • Public Transit – Even where vehicles and stations are accessible, equipment is often broken, unplugged or poorly maintained, or operators don’t stop or don’t know how to use the equipment.
  • Employment and income – The unemployment rate among people with disabilities hovers around 60%, and the monthly disability benefit is less than the poverty level.
  • Civic participation – many polling places and public meetings are inaccessible.
• Without standards, requirements and enforcement, the promise of equality in the charter are empty.

Bill 52

• The bill written in a vague and imprecise way – the devil is in the details
  • Many terms are undefined or poorly defined
    • Terminal Palliative Sedation;
    • Medical Aid in Dying;
    • Person at the end of life;
    • State that requires end-of-life care;
    • End of life care;
    • Palliative care;
  • How will people be killed.  This is not addressed in the bill or in the hearings.
  • To what legal standards will the doctors be held in approving medical aid in dying and administering the deadly dosage?  A “good faith” standard?  A non-negligence standard?
• The law is designed to kill the person rather than the pain – Palliative care is a one-way trip.
• Limitations on palliative care,
  • Palliative care will be provided “…to the extent human, material and financial resources available.”
  • The law does not require that people receive a complete range of palliative services before being killed.
  • The law does not require that people receive other health, psychological and social services that might improve their circumstances and eliminate the desire for euthanasia.
• The law is not reconciled with existing laws, such as those governing substitute decision makers or competency determinations.
• There are many differences between what is written in the bill and how it is explained:
  • Who is eligible for Medical Aid in Dying.
  • Definition of terms used in the law (see above).
• The bill’s supporters confuse the urgent need to relieve pain for an urgent need to kill –
• Safeguards are insufficient or missing:
  • The law contains fewer safeguards than many other laws.
  • There are few safeguards before the person dies.
  • There is no psychological evaluation required.
  • The determination of competence is done by a physician, not by a court.
  • The waiting period in the law is not defined.
  • Nothing prevents an heir from filling out the form to request either “terminal palliative sedation” or “medical aid in dying.”
  • The right to file complaints is useless after the person dies.
  • There is no automatic follow-up to ensure that procedures were followed, or verify that the doctor wrote in the report.
  • There is no way to track euthanasia that is not reported.
  • There is no mechanism to enforce patients’ rights in the bill.
• The Commission:
  • The composition of the commission is biased in favour of professionals.
  • The commission lacks teeth – It has neither legal authority nor power to punish.
  • The inquiry happens after the person is dead.
  • A five-year delay before a report on the progress of the program is too long to respond to problems that arise.
• Terminal palliative sedation:
  • No eligibility criteria – yet the service will probably only be available to persons with disabilities
  • The term expresses the intent to kill the person, and does not envision the option of intermittent sedation.
  • Without a formal approval process, this option is open to abuse.
• Medical aid in dying:
  • Call a cat a cat, it’s euthanasia.
  • It could include people with disabilities with secondary conditions.
  • “Physical or psychological suffering” leaves eligibility wide open to people with treatable mental health problems.
  • “Suffering that can’t be relieved in a way the person finds tolerable” accedes to the black-and-white nature of suicidal thinking.
• Policies, practices and procedures – This law will create a hodge-podge of procedures and a costly bureaucracy designed to kill people that will drain money away from palliative care.

The Tyranny of the Majority –

The process and the hearings

• Like all such laws, the impetus for Bill 52 arises from widely-held fear of illness and disability.  People believe they would rather be dead than disabled without knowing the reality of living with a disability.
• The commission on the question of dying with dignity began its mandate with the outcome already written into its name.
  • The Commission ignored disability rights organizations who have studied the issue for 30 years and who oppose assisted suicide and euthanasia in favour of local groups.
  • The Commission ignored the majority of testimony it received, which was against medical aid in dying.
  • In travelling to Europe, the Commission did not consult with people who oppose euthanasia and assisted suicide.
• Of 54 hand-picked witnesses (plus Toujours Vivant-Not Dead Yet, who extorted an invitation) who testified before the Health and Social Services Commission regarding Bill 52:
  • 31 supported the bill
  • 14 opposed the bill
  • 8 took a neutral position
  • 2 offered testimony that was incoherent or irrelevant.
• The bill’s supporters create a fairy-tale world, where each patient receives prompt and efficient medical care from competent and compassionate medical staff in clean, modern facilities.  No bell goes unanswered, families are always loving and no one ever makes mistakes.
• People think bad things will never happen “here”; we’re too good, to upright.  But the scandal at Charles Borromé happened here, and abuse and poor conditions still exist in nursing homes in Québec.
• They don’t tell the truth – we will kill people – and the bill’s supporters become angry when someone uses the words “kill” or “euthanasia.”
• The rights of people with disabilities are not respected now, it will get worse.
• The approval of the public doesn’t mean the law is a good idea.

Final thoughts

• We must weigh the preference of a small number of people to control the time and manner of their death against the danger to the lives of many people.
• Nearly everyone who really want to die can kill themselves.
• Palliative care relieves pain and distress for 95% of people.
• For the rest, the small number of people who are so sick that they can’t kill themselves, palliative sedation can provide relief from pain.
• We don’t have to go beyond providing palliative care for everyone.