Introduction

Webcast archive: Federal assisted suicide bill

This week, we discuss the new federal euthanasia bill and disability biases related to organ donation.

Webcast archive: Federal assisted suicide bill

In this episode of Euthanasia & Disability, Amy Hasbrouck and Christian Debray discuss:

  • Federal assisted suicide bill is filed
  • Organ donation: give and take

Please note that this text is only a script and that our webcast contains additional commentary.

FEDERAL ASSISTED SUICIDE BILL IS FILED

  • On April 14, the Trudeau government filed its assisted suicide bill.
  • Next week we will present a complete analysis of the bill. But it looks like it does not include procedural protections called for in the Vulnerable Persons Standard.
  • It does exclude persons under 18, and forbids assisted suicide by advance directive.

ORGAN DONATION: GIVE AND TAKE

  • Before 1968, a person was considered dead when she stopped breathing and her heart stopped. This is known as cardiocirculatory death.
  • in 1968 shortly after the first heart transplant, Dr. Henry Beecher and a Harvard Ad Hoc Committee proposed that a person was dead when there was irreversible cessation of the function of the entire brain. This is called Whole Brain Death.
  • The definition of death is not absolute, because there are many brain injuries that let the body continue to function, and from which people can recover. In the Uniform Determination of Death Act of 1981, death is either:
    • Irreversible cardiocirculatory and respiratory cessation – no heartbeat or breathing; or
    • Whole brain death;
  • Waiting for brain death caused the loss of many organs, so hospitals began what’s called Donation after Cardiocirculatory Death, or DCD. This procedure is used:
    • When death is anticipated but has not yet occurred (controlled DCD)
    • Following a non-recoverable injury or illness (uncontrolled (DCD)
    • It’s also used on people who are dependent on life-sustaining therapy whose surrogates agree to withdraw treatment, or who have expressed a desire to have treatment withdrawn. There must be an:
      • Intention to withdraw life-sustaining therapy; and
      • Anticipation of imminent death after withdrawal of life- 
sustaining therapy.
    • What about people with disorders of consciousness?
      • In a coma the person has eyes closed, is unresponsive and unarousable. The most serious comas progress to whole brain death.  But some people recover from comas.
      • In a vegetative state the person is unresponsive, but goes through sleep and wake cycles, where the eyes open. There are some automatic movements and reflexes, such as blinking and eye movement.
      • In a minimally-conscious state, the person shows signs of awareness, may say words and gesture. At times they show evidence of attention, intention and memory.  Some people recover from a minimally conscious state to full awareness.
      • With locked-in syndrome the person may appear to be in a coma or vegetative state, yet is in fact partly or fully conscious and aware, but unable to communicate her awareness.
      • Whether the person recovers from a coma, vegetative state, minimally conscious state or locked-in syndrome depends on the cause of the injury, how much damage was done to the brain, where, and what kind of damage, how much time has passed, and what kind of treatment he receives.  Unfortunately even a full battery of brain scans can’t answer the question, “will she recover?”
      • Only probabilities can guide a surrogate in knowing whether a person will wake from a coma or vegetative state, and there are always people who beat the odds. The surrogate will have to make her best guess.
    • The real safeguards in organ donation policy are requirements that are currently in effect:
      • a valid decision to withdraw life support in patients who are near death,
      • valid consent of the patient or the patient’s proxy/surrogate, and
      • no conflicts of interest in the consent process
      • An additional safeguard that is not always used, but should be: No discussion of organ donation until after the decision has been made to refuse or withdraw treatment.
    • With euthanasia, a new wrinkle has been added. When a person who asks for euthanasia is otherwise healthy there is no question of withdrawing life support or waiting for imminent death, how does the person die?  Is the person euthanized, then the organs are taken?  Would the euthanasia drugs damage the organs?  Are the organs taken before the person dies?  Is harvesting the organs the cause of death?
    • We turn to a 2009 Belgian study of 4 patients who donated organs after clinical diagnosis of cardiac death from euthanasia. The study authors stated that “a clear separation between the euthanasia request, the euthanasia procedure, and the organ procurement procedure is necessary.”  However given the frequent lack of compliance with regulations in Belgium, will doctors stick to this guidance?
    • The other side of organ donation is who receives organ transplants. Not surprisingly, people with disabilities often face discrimination in receiving organs.
      • In 1995, Sandra Jansen, a woman with Down syndrome, was refused a heart-lung transplant by two hospitals. The first hospital refused her simply because she was disabled.  The second hospital said she would be unable to comply with the follow-up instructions after the surgery.
      • Thanks to advocacy by her treating physician, Sandra eventually got the transplant, thus becoming the first person with Down syndrome to receive such a transplant.
    • Some doctors believe it is ethical to deny organs to people with an intellectual disability. In 2001, the British Medical Journal published an article by Dr. Julian Savulescu, Director of Ethics at Murdoch Children’s Research Institute at Royal Children’s Hospital in Melbourne, Australia.  In the article he argues that quality of life considerations (implying that an intellectual disability means a lower quality of life) should be used to determine who has access to scarce medical resources, such as organ transplants.
    • The Autism Self-Advocacy Network produced a report in 2013 documenting discrimination in access to organ transplants for people with intellectual and developmental disabilities. ASAN found:
      • A 1992 study of 411 transplant centres where a heart transplant was relatively or absolutely contraindicated for people with an IQ of 50-70 by 84% of the programs.
      • 85% of pediatric transplant centres surveyed by Stanford University in 2008 consider neurodevelopmental status as a factor in their determinations of transplant eligibility at least some of the time.
      • The International Society for Heart and Lung Transplantation’s heart transplantation criteria specifically states, “Mental retardation or dementia may be regarded as a relative contraindication to transplantation.”
      • Since most programs have informal selection processes, it’s difficult or impossible to identify discriminatory selection criteria.
      • The 2004 National Work Group on Disability and Transplantation survey reports that only 52% of people with Intellectual or Developmental disabilities requesting referral to a specialist for evaluation receive such a referral. Approximately a third of those for whom referral is provided are never evaluated.
    • ASAN found no evidence that people with intellectual or developmental disabilities are unable to comply with a post-operative medication and treatment schedule.
  • What the give-and-take comes down to is that people with brain injuries and intellectual disabilities are at risk in organ donation, both for having organs taken before they have a chance to recover from a brain injury, and from not receiving life-saving transplants.