Introduction

Webcast archive: Expert Report in the Lamb case, Part I – Decision-making capacity and suicidality

This week, we discuss an important document in the Lamb case, & summarize the National Council on Disability's latest report on assisted suicide.

Webcast archive: Expert Report in the Lamb case, Part I – Decision-making capacity and suicidality

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

  • Topics from the Expert Report in the Lamb case, Part I: Decision-making capacity and suicidality
  • NCD reaffirms opposition to assisted suicide

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

EXCERPTS FROM THE EXPERT REPORT, PART I: DECISION-MAKING CAPACITY AND SUICIDALITY

  • The Expert Report that led to the suspension of the Lamb case contained a lot of useful information that seemed worth sharing. This week, we’re looking at the part of the report submitted by Dr. Madeline Li that focuses on decision-making capacity in the context of assisted suicide and euthanasia (AS/E).  Dr. Li is a cancer psychiatrist at the Princess Margaret Cancer Centre in Toronto, as well as the developer and Program Lead for MAID at the University Health Network (UHN) in Toronto.
  • Dr. Li cares for people who request euthanasia, trains and supervises other MAiD practitioners, develops assessment tools, and conducts research on the motivations and reactions of people who receive AS/E, and the effects of MAID on medical professionals.
  • The first topic of Dr. Li’s report is decision-making capacity and consent to euthanasia. She says the Appelbaum guidelines for assessing capacity to make medical decisions, which “[focus] on only the cognitive aspects of capacity” – understanding, appreciation, reasoning and ability to express a choice – leave out “emotions such as hope, anger, sadness, anxiety, and … the ability to experience pleasure [which] also strongly influence treatment decisions.”
  • Dr. Li cites a study of euthanasia of people with psychiatric disabilities in the Netherlands that we reviewed in February 2018, calling the capacity assessments reported there “superficial.” She believes that capacity evaluations for MAID should include other factors, particularly when the person has a psychiatric condition:
    • Comparing the person’s values against the views of society;
    • Undue internal influence on voluntariness of the decision (such as from mental disorders or substance abuse), and;
    • The emotions and values motivating the request to die.
  • Dr. Li notes that some psychiatric conditions “by their nature, can exert undue internal influence on the voluntariness of a patient’s decision making.” The desire to die can be a symptom of depression; anxiety or lack of pleasure in everyday activities can also affect decision-making.  She adds that even doctors who specialize in mental illness often cannot tell the difference between suicidality and a so-called “rational” desire to end one’s life.
  • She says “there are currently no available capacity assessment tools” that evaluate these factors and adequately protect vulnerable populations.
  • The story of a woman with blood cancer and chronic depression illustrates this point.
    • Though her depression was partially controlled with medication, as the cancer progressed, she refused both anti-depressants and blood transfusions in favour of euthanasia. The woman’s psychiatrist and oncologist supported this decision, given the “intolerable” side effects of the cancer treatment she was receiving. She was assessed, approved, and went through the 10-day waiting period before deciding to go to the hospital for further treatment.
    • Once there, however, the woman opted to receive MAID at home. The day before the procedure was scheduled, she changed her mind again: this time she wanted palliative care. After a “medical crisis” requiring a return to the hospital, she requested MAID yet again. Then, two days before her death would have taken place, she agreed to restart blood transfusions and try new cancer treatments.
    • Her doctors “did not consider her request to be withdrawn or have concerns about her ambivalence or capacity” but instead chalked it up to “her process in deciding on a date.”
  • The lack of training and adequate assessment tools can lead to inconsistent results.  Dr. Li cites the same Dutch study, which found disagreements about 12% of capacity evaluations, although the review committee accepted the approved euthanasia requests. An earlier study, which we talked about in February 2016, showed physicians disagreeing about capacity assessments in 24% of euthanasia cases, but the people were euthanized anyway. In 11% of cases, no psychiatric evaluations were done.
  • She notes that people deemed ineligible for euthanasia “are free to continue seeking an indefinite number of eligibility assessments until they eventually find assessors who will find them eligible.” (Also known as “doctor shopping.”) Dr. Li cites a 2017 study which found that “physicians from euthanasia advocacy organizations … account for over 50% of cases [in which due care requirements are not met], as compared to their involvement in only 5% of all euthanasia cases in the Netherlands.”
  • Dr. Li says that while psychiatrists “can provide an opinion on whether a psychiatric disorder is impairing a patient’s judgment,” giving over the responsibility for making the capacity assessment to a psychiatrist “is neither a technically correct nor a rigorous quality practice.” Dr. Li concludes that, “there are no experts” because the field of AS/E is relatively new.
  • Dr. Li believes the wish to die to end intolerable suffering and that caused by a mental disorder are both  “forms of suicidal ideation,” and it is not always possible to tell them apart.
  • Another factor that is largely unknown to practitioners looking at capacity to choose MAiD is “demoralization;” feelings of “hopelessness, helplessness, a sense of failure and the inability to cope,” which are “strongly associated with the [passive] Wish to Hasten Death,” and requests for MAID. The psychological suffering of demoralization is being overlooked in MAID evaluations. Demoralized people cannot be forced to accept intervention for their condition, and may still meet capacity requirements for MAID.
  • Dr. Li cites the cases of two women with demoralization who requested MAID who saw their condition improve when given ketamine as an antidepressant in a clinical trial. The doctors assessing their applications were not sure whether they would be eligible due to depression. The first woman’s desire to die increased as she accepted the inevitability of her death, while the second felt her quality of life improve; she withdrew her MAID request. (Ketamine is still an experimental treatment. Even if the positive outcome is reproduced on a larger scale, not everyone will accept or respond well to the treatment.)
  • Next week, we will look more closely at Dr. Li’s findings about AS/E for people with psychiatric conditions, as well as what she has to say about Julia Lamb herself.

NCD AFFIRMS OPPOSITION TO ASSISTED SUICIDE

  • The National Council on Disability – a US government agency that shapes and recommends disability policy at the national level – has released a third report on assisted suicide. The organization continues to oppose the practice; their stance has not changed since the first report came out in 1997. (NCD reaffirmed its position in in 2005.)
  • Here are a few of the most important conclusions the Council reached:
    • “Insurers have denied expensive, life-sustaining medical treatment but offered to subsidize lethal drugs, potentially [prompting people to hasten] their own deaths.”
    • “Demoralization … is one of the most powerful, yet difficult risk factors regarding assisted suicide.”
      • Disabled people often become demoralized due to internalized oppression, “such as being conditioned to regard help as undignified and burdensome, or to regard disability as an inherent impediment to quality of life.”
      • Discrimination and a lack of community-based supports can also cause demoralization;
      • Medical and mental health professionals who lack knowledge and experience of disability don’t recognize demoralization as a problem, but see it as an understandable reaction to having a disability.
    • Disabled people are more likely to face difficult financial, emotional, and social circumstances that make ending one’s life seem attractive.
    • Inaccurate diagnosis or prognosis of terminal conditions can lead people to end their lives out of fear.
    • “Where assisted suicide is legal, states have no means of investigating mistakes and abuse.”
    • Standards are “loosening … in various aspects of assisted suicide laws”: the scope of eligibility is increasing, more professionals can prescribe lethal substances, and waiting periods between acceptance of an assisted suicide application and carrying out the act have decreased.
    • As a result of the societal panic over opioids, “[it] may become easier to obtain a prescription to die than one to relieve pain.”
  • “Many national disability rights organizations oppose the legalization of assisted suicide. All national groups that have taken a position are opposed.”
  • NCD made many recommendations:
    • “Congress should amend the Social Security Act to remove Medicaid’s statutory bias for institutional long-term care, rather than long term services and supports provided for people living in the community.”
    • Medical professionals and health-care facilities, including labs and therapy centres, “must offer a full range of [accommodations] in compliance with the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act.”
    • “All state agencies that deal with suicide prevention should address the specific challenges of people with disabilities and people with chronic conditions, including people with a terminal prognosis. State agencies that deal with suicide prevention should appropriate funding for research … on disability-related risk factors in suicide prevention, as well as research on gathering data directly from people who request assisted suicide and euthanasia.”
    • Disabled people should always be informed of “the full array of clinical treatment options available,” as well as palliative care, personal assistance services, counseling, skilled nursing, and other supports.
    • Training programs for healthcare professionals “should require courses on skills and competencies needed to provide quality health care to patients with disabilities and should develop a core set of disability competencies.”
  • It’s vitally important that, with the growing clamour to broaden eligibility for AS/E, the voices of disability rights activists be heard on this issue.  While everyone has the right to their individual opinion and behaviour, government policy and action must be led by a thorough and complete understanding of this issue, which the disability rights movement has cultivated over the past 35 years.  The NCD report is well-timed to reinforce the disability-rights arguments against expansion of hasten death. It’s frustrating that, 22 years after the first NCD report, the voice of the disability rights movement remains a lonely cry in the wilderness.