Webcast archive 18/02/16

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

  • Capacity and Undue Influence – Part 3
  • Bill to curtail disability rights passes U.S. House of Representatives

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

CAPACITY AND UNDUE INFLUENCE – PART 3

  • Welcome back to the third, and last part of our series on capacity, decision-making and assisted suicide. This week, we are looking at a Dutch study released last year, that examines how doctors assessed the capacity of people with psychiatric conditions who asked for euthanasia.
  • As a review from the past couple weeks, we said that, to consent to medical treatment in Canada, a person must be capable and make a voluntary and informed decision.  Capacity to make medical decisions means the person can:
    • Understand the information they are given (“understanding”);
    • Apply the facts to their situation (“appreciating”);
    • Weigh the benefits and risks of each choice (“reasoning”);
    • Make a choice and express it (“expression”).
  • We also pointed out that the standard for making medical decisions may not fit when someone is making a decision to end their life, because the choices and outcome are different, and the stakes are higher.
  • Under Dutch law, the decision to receive euthanasia must be “voluntary and well-considered.” The person must have “intact capacity,” which means the person should be able to:
    • understand relevant information about their situation and prognosis (in other words, what is happening now, and what to expect in the future because of their condition);
    • consider any alternatives; and
    • assess the effects of the decision (For example, understand the difference between a treatment that eases pain and one that causes death).
  • Many of the tests that measure a person’s ability to perform these tasks were developed by psychologists; they’re intended to help mental health professionals determine whether a person has capacity.  But these tests have a lot of problems.
    • Problem 1 – They don’t measure everything that needs to be measured. Capacity tests only look at a person’s mental ability to think about their current situation. These tests do not look at:
      • A person’s risk for suicide;
      • how someone feels about themselves and their situation, including their personal values and beliefs;
      • the possible courses of action a person might take;
      • external factors relating to their situation that could have an effect on the decision-making process, like unmet accessibility needs, being stuck in an institution or being abused by someone in their family (which some physicians may not know to look for); or
      • the effects that some mental health conditions (for example, depression) would have on decision making.
    • The standards that determine whether someone has capacity, and the thresholds for meeting these standards, also differ between tests.
    • Problem 2 – Assisted suicide laws, like the ones in Canada and the Netherlands, don’t describe how assessments for capacity should be done.  They don’t require medical professionals to use an assessment tool or recommend the best one.
    • Problem 3 – As we’ll see in the study, the tests are applied in inconsistent ways, sometimes to the point of negligence.
  • The presence of a psychiatric condition does not automatically mean that someone lacks capacity. However, as the study said, some conditions tend to limit capacity – for example, depression, cognitive disabilities, or eating disorders. Now onto the study…
  • Though 85 people with cognitive or psychiatric disabilities were euthanized between 2011 and 2014, the government provided case summaries for only 66 people. Of these, all were deemed capable, including:
    • 41 (62%) who had some form of depression;
    • 9 (14%) who had a psychotic condition;
    • 4 (6%) had cognitive disabilities (including one person under guardianship); and
    • 4 (6%) had eating disorders.
  • In 36 cases (55%), the capacity evaluation consisted of a blanket statement, of capacity. For example, “consultant believed the request was voluntary and well-considered.”  These global statements suggest that the doctor’s opinion about the person’s reasons for asking for euthanasia (maybe based on their bias about disability and quality of life) played a big role in the finding of capacity.
    • All 66 people were found to have one of the four capacity criteria “an ability to communicate their choice”. This was the only criterion all the medical professionals used to evaluate capacity, even though all four criteria must be met for the capacity assessment to be valid.
    • 17 case summaries referred to two criteria, while ten mentioned three abilities.
    • Only 5 cases (8%) mentioned all four abilities of the capacity test.
    • Just 21 summaries (32%) included any evidence relating to the criteria.
  • In 43 of the 66 case summaries, the doctor talked about a specific mental illness or impairment, either to say that it was absent, or the person was capable despite the diagnosis.
    • In 8 cases, the doctor said the person was not depressed
    • In 17 cases, the doctor said the person was capable despite having depression.
    • In 3 cases, depression may have led to a request for euthanasia or assisted suicide, but the person was found capable anyway.
    • In 8 cases, the doctor said there was no psychosis.
    • In 7 cases, the doctor said the person was capable despite having psychosis.
  • There was a lot of disagreement between medical professionals as well:
    • 21 people had earlier applied for, and been refused, euthanasia.
    • In 8 cases, the doctors disagreed about whether the person had decision-making capacity, but all were finally ruled capable and were euthanized.
      • In four cases with disagreement, the reports described conflicting global statements; e.g. “patient is capable,” or “capacity is doubtful.”
      • Of the others, one case involved a person under guardianship, another person had chronic psychotic disorder, and a third had cognitive disabilities and psychotic symptoms.
  • The Dutch euthanasia commission, which is supposed to oversee euthanasia deaths in the country:
    • found one case that failed to meet the “due care” standard (In other words, the care that a reasonable medical professional would use in the situation.);
    • commented on 18 cases, of which 14 were approvals;
    • Mostly commented on the doctors’ use of procedure, rather than the content of the capacity assessment;
    • had to ask for more information in 4 cases.
  • The commission accepted one case where a person was judged competent, in spite of doubts that she was able to “use information in a rational way.” In another case, it was deemed “possible that one criterion has not been fully met, but…the patient (was) clearly suffering so unbearably” that it was acceptable for the medical practitioner to relieve that suffering through death.
  • The study’s authors point out what they think are the most important findings:
    • In over half of cases (36 of 66), the most detailed discussion is a simple global assertion of capacity, without reference to specific capacity criteria.
    • Even in cases that talk about an abilities-based capacity assessment, the capacity discussions were relatively limited.
    • The physicians often seemed to rely on the presence or absence of symptoms or diagnoses as evidence for or against capacity, usually without further explanation.
    • Maybe because they relied on clinical impressions, there were disagreements among physicians in at least 8 cases. This likely underestimates the diversity of doctors’ judgments on capacity, given that 21 patients had been earlier refused AS/E but later received it.
    • The euthanasia commission does not seem to expect doctors to look very deeply or use a high threshold for capacity.
  • Studies like this show that capacity “judgments” are often unreliable. Professionals’ decisions are often subjective, they can “shop” around to for a consultant who supports their view to ensure a request for death is approved, and the tests they use are imperfect and often incorrectly applied.

BILL TO CURTAIL DISABILITY RIGHTS PASSES U.S. HOUSE OF REPRESENTATIVES

  • On February 15, the U.S. House of Representatives approved bill HR 620, titled the ADA Education and Reform Act by a vote of 225 to 192.
  • The law would require people to give business owners six months to make accessibility changes before filing lawsuits under the Americans with Disabilities Act.  This despite the fact that these same business owners have been on notice for nearly 28 years of their obligations under the Act.
  • HR 620 would also allow businesses to claim that they have made “substantial progress” in removing barriers as a defense to non-compliance.  In this way, actual barrier removal could be delayed forever.
  • The bill’s sponsors claim it is necessary to prevent disabled people from profiting from “frivolous,” lawsuits.  In fact, disabled people who win an ADA lawsuit cannot get monetary damages; only removal of the barrier and attorneys’ fees.  There are already rules and procedures that, if properly enforced, would prevent lawyers from filing frivolous lawsuits.
  • What usually happens when a disabled person confronts a barrier at a business that’s open to the public is the person contacts the business to let them know about the barrier, and the business owner ignores them, or comes up with excuses why they can’t remove the barrier.  That’s when the lawsuit is filed.
  • 17 disabled activists protested and were arrested this week at the Capitol, chanting “HANDS OFF ADA.”
  • The bill passed mostly on party lines, though 12 Democrats voted for it, while 19 Republicans voted against it.  It will now go to the Senate for hearings and a vote.  If it is adopted by the Senate, it will go to the White House for signature by the Cheeto-in-Chief.