During the COVID-19 pandemic, we will not present our webcast, due to technical problems caused by heavy internet usage. However we are providing the text as a bulletin to offer up-to-date information about assisted suicide, euthanasia and ending-of-life practices for the disability community.
CMA FRAMEWORK FOR ETHICAL DECISION MAKING
- Before we get to policies for allocating life-saving medical resources, here are a couple of things to keep in mind.
- A person living in a nursing home probably already has a medical condition that may make them more likely to get sick with the Coronavirus, and might make it harder to recover from it. Medical staff often act as gatekeepers by not transferring elderly and disabled people to the hospital where intensive care would give them a better chance of recovering. In this way, they are never considered under the terms of allocation protocols, and the beliefs about their ability to recover become a self-fulfilling prophecy.
- In an article published by the Hastings Center (a bioethics think-tank), disability rights activist Ari Ne’eman says that discrimination in health care goes beyond “stereotypes, quality of life assessments, or judgments about a patient’s relative worth based on disability or age,” and “categorical exclusions” for certain diagnoses. He says ending such discrimination takes more than “simply eliminating irrational prejudice,” because for many disabled people, their impairments and need for scarce medical resources (like ventilators) are linked to their ability to recover from COVID-19. He suggests that the duty to make “reasonable accommodations” (changing a policy to make it possible for a disabled person to benefit from the service being provided) in disability rights laws might require a hospital to use “more resources to afford them equal status” such as by allowing a disabled person who needs breathing support extra time on a ventilator.
- The Canadian Medical Association has issued guidelines for how hospitals should decide who gets scarce health care resources during the COVID-19 pandemic. The CMA’s recommendations are taken directly from an article in the New England Journal of Medicine at the end of March.
- The NEJM article begins by talking about four “fundamental values” that shape proposals for resource allocation:
- maximizing the benefits produced by scarce resources;
- treating people equally;
- promoting and rewarding activities that benefit others; and
- giving priority to the worst off.
- It’s when these values are put into practice that disabled people can end up at a disadvantage.
- Sometimes making the most of scarce resources is done through policies designed to save the most lives. But such policies can conflict with saving disabled people who might need more time on a ventilator than a non-disabled person.
- When maximizing resources is done by saving the most “life years” possible, that penalizes disabled people, whether they die sooner, or doctors just assume they’ll die sooner because they have a disability.
- Promoting and rewarding activities that benefit others is usually done by giving higher priority to people who work in helping professions or civil service, like health care workers, police, and firefighters. If a disabled person is unable to work, they are likely to be given a lower rank.
- The CMA offers six recommendations. We tried to simplify the language to make it understandable; hopefully we have captured the subtle meanings.
- Recommendation 1 has several parts:
- “The value of maximizing benefits is most important.” This means “saving the most lives” and helping each person live as long as possible. This view is shared by most experts.
- Comment: This is where a reasonable accommodation (such as allowing a disabled person more time on a ventilator) would be needed to prevent discrimination.
- Medical professionals should not compute “quality of life,” and “quality-adjusted life-years,” because it takes too much time.
- Comment: This agrees with item 2 of the Evaluation Framework for crisis care plans that we referred to last week.
- All patients, especially those facing the possibility of intensive care, are encouraged to say in an advance care directive what quality of life they would regard as acceptable and when they would refuse ventilators or other life-sustaining treatments.
- Comment: Like the Ontario triage protocol we looked at last week, the CMA recommendation puts pressure on people to give up their right to life-saving medical care.
- People who are sick but could recover if treated are given priority over those who are unlikely to recover even if treated.
- Comment: The Evaluation Framework and other policies to prevent disability discrimination call for an “assessment of [each] patient’s ability to benefit from treatment.”
- Removing a patient from a ventilator or an ICU bed to provide it to others in need can also be justified.
- Many guidelines agree that the decision to withdraw a scarce resource to save others is not an act of killing and does not require the patient’s consent.
- “The value of maximizing benefits is most important.” This means “saving the most lives” and helping each person live as long as possible. This view is shared by most experts.
- Recommendation 2: Scarce resources should go first to front-line health care workers, first-responders and people who keep important utilities and systems running. Wealthy, famous or powerful people should not get special priority.
- Recommendation 3: Equality should be achieved through random allocation by lottery, rather than on a first-come, first-served (FCFS) basis.
- FCFS favours people who live in cities or near health centres.
- FCFS encourages crowding when people rush to get vaccines or scarce supplies, which can lead to violence.
- It also penalizes people who avoided getting sick because they stayed away from other people.
- Recommendation 4: Guidelines for who gets what resource will be different depending on the resource, and should be based on scientific evidence. Since older people are more likely to get sick and have worse outcomes, they should get higher priority for help geared toward prevention and testing, like vaccines. On the other hand, younger people, who are more likely to benefit from treatments aimed at curing the disease, should get higher priority for ICU beds and ventilators.
- Comment: This recommendation seems to use categories to limit access to scarce resources, instead of looking at each person’s ability to recover.
- Recommendation 5: People who participate in research to prove the safety and effectiveness of vaccines and treatments should get priority over similar people who did not take part in clinical trials.
- Recommendation 6: There should be no difference in allocating scarce resources between people with Covid-19 and those with other medical conditions.
NDY BLOG ON COMPLAINT OVER NEW YORK VENTILATOR ALLOCATION PROTOCOL
- This week, Not Dead Yet CEO Diane Coleman wrote on the NDY blog of a federal complaint filed against the state of New York’s Department of Health over its 2015 Ventilator Allocation Guidelines. The complaint says the New York guidelines “disqualify many people with disabilities from ventilator access simply because they have underlying conditions that may intensify symptoms and slow recovery, which violates both the ADA and section 504 [of the Rehabilitation Act].”
- The New York guidelines use the SOFA, or “Sequential Organ Failure Assessment” score, where “people with pre-existing conditions are by default going to receive higher (worse) SOFA scores.” Disabled people “may live day-to-day without any complications, but with a condition that presents abnormalities in one or more of the six key organs and systems measured using SOFA. These individuals would be disadvantaged in a triage situation prior to considering any symptoms that result directly from COVID-19.”
