Accessibility for Ontarians with Disabilities Act Alliance Update United for a Barrier-Free Society for All People with Disabilities
Web: http://www.aodaalliance.org Email: aodafeedback@gmail.com Twitter: @aodaalliance Facebook: http://www.facebook.com/aodaalliance/
April 14, 2020
Introduction
From the experience in other countries with the COVID-19 crisis, we know that our health care system may get more people needing urgent medical treatment than there are facilities to provide that medical treatment. The Ontario Government has in circulation a health care “triage” (or rationing) protocol for health care facilities to use when making medical treatment decisions in case they must ration or triage critical medical care due to hospitals being overloaded by the COVID-19 crisis.
On April 8, 2020, the ARCH Disability Law Centre made public an open letter, signed by over 200 community organizations (including the AODA Alliance ) and by thousands of individuals. That open letter raises serious concerns with the Ontario medical care triage or rationing protocol then in circulation. It calls on the Ontario Government to ensure that any medical care rationing or triage never discriminates against patients because they have a disability.
The Ontario Government has not undertaken an open consultation with the grassroots disability community or the broader public on what a medical care triage or rationing protocol should include. People with disabilities have the most at stake. This discussion must include them, and not just health care providers or professionals.
To help with this, the AODA Alliance offers this Discussion Paper. We provide a grassroots start to the public discussion of this issue that the Ontario Government should lead. A series of hypothetical situations are set out. They illustrate the kind of things that should not be allowed to take place during any medical rationing or triage, whether as sound public policy or proper professional ethics.
This Discussion Paper is meant as a first word, but not the last word on this topic. It was prepared very quickly, in light of events that are unfolding very fast.
The following examples are not meant to exhaustively list all possible situations where concerns, outlined here, may arise. The fact that we have not included any additional hypotheticals does not mean that there are no other areas of possible concern. We are not giving or offering legal advice.
In raising the following for public discussion, we know that our health care providers and professionals are working extremely hard under very difficult and stressful conditions, too often at personal risk to themselves. We very much appreciate their hard work, dedication and commitment. We also know that the situations confronting them can be extremely difficult, if not wrenching.
A fuller discussion of this issue is available in the April 8, 2020, open letter and during part of the April 7, 2020, online virtual public forum on disability issues and the COVID-19 crisis, organized by the Ontario Autism Coalition and the AODA Alliance.
We invite feedback. Send feedback to aodafeedback@gmail.com Please widely circulate this Discussion Paper to get as many people involved in the discussion.
Nine Hypotheticals
These nine hypothetical situations deal with decisions over whether a patient with a disability gets urgently-needed health care services during the COVID-19 crisis. They are situations where the Government’s medical services triage or rationing protocol could come directly into play, or where its perceived impact could directly or indirectly trickle down to nurses, emergency medical technicians or others in the broader health care system.
Any protocol on rationing or triage of medical care during the COVID-19 crisis should make it clear to hospitals, physicians, nurses, emergency medical technicians, and all others in the health care system and the public that situations like those described here should never be permitted to occur.
1. In a hospital ward, a number of patients with COVID-19 are in very serious condition and need ventilators to help them breathe. There are not enough ventilators for all of them. One of the patients who needs a ventilator has a significant disability that limits their ability to independently undertake some activities of daily living. A physician considers that the quality of life of the patient with that disability is poorer than the quality of life that can be expected of the other patients who need the ventilator, if they survive.
A hospital or physician should never take into account or hold against a patient with a disability the hospital’s or physician’s beliefs or assessment of a patient’s future quality of life living with a disability, when deciding if that patient will get to use a ventilator that is needed to help save their life. A patient’s disability must not be used as a factor weighing against that patient receiving needed medical services.
2. In a hospital ward, more than one patient with COVID-19 needs a ventilator. There are not enough ventilators for all of them. One of the patients who needs a ventilator has a disability which requires them to have some publicly funded supports , such as 90 minutes of in-home attendant care per day. This is needed to help with activities of daily living (like getting out of bed, dressing, and using the washroom). A physician considers that this patient with a disability will pose a greater demand on the public purse if they survive the COVID-19 virus and get discharged from hospital, than other patients needing the ventilator.
The hospital or physician deciding who will get the ventilator must never weigh or hold against that patient with a disability the fact of their disability or the hospital’s or doctor’s belief about the cost to the public that the patient’s needs in future will pose if they survive the COVID-19 virus.
3. A person with a disability already uses a ventilator each day for reasons unrelated to COVID-19 and has a ventilator. They develop serious COVID-19 symptoms and go to hospital. A member of the hospital staff decides that their ventilator is needed for other patients who have developed COVID-19 at the hospital.
A patient who comes to hospital with their own pre-existing ventilator for their personal use must be permitted to continue to use their personal ventilator and must also receive COVID-19 treatment. The personal ventilator of a person with a disability who comes to hospital with COVID-19 symptoms and who brings their personal ventilator with them must not have the hospital try to re-allocate their ventilator to another COVID-19 patient.
4. A patient with a history of cancer contracts serious COVID-19 symptoms and goes to hospital for emergency treatment. They need a ventilator. The hospital has too few ventilators to meet the needs of all its COVID-19 patients who need ventilators.
A physician is considering which patients will get a ventilator. The physician decides that the cancer patient’s long-term future lifespan may be shorter due to their cancer than other patients who have no disability. That physician thinks that this should be a factor weighing against that cancer patient getting the use of a ventilator.
Such decisions should not be based on the physician’s predictions, whether accurate or stereotype-based, about the eventual long-term lifespan of that patient unrelated to the COVID-19 diagnosis. The hospital or physician deciding who will get the ventilator must not weigh or hold against that patient with a disability the fact of their disability or its perceived impact on their long-term lifespan.
5. More than one hospital patient needs a ventilator. There are not enough ventilators for all the patients who need one at that hospital. At least one of the patients who needs a ventilator has disabilities. Some of the patients who need a ventilator have no apparent disabilities.
One of the patients with disabilities who needs the ventilator will need disability-related accommodations in hospital in order to receive health care services, such as a deaf patient who needs Sign Language interpreters to effectively communicate with hospital staff. The emergency room doctor, deciding who will get the ventilator, is concerned that the patient with disabilities who needs such accommodations in the hospital setting will pose a greater demand on the hospital’s services and resources, if they survive, than would other patients who need the ventilator.
The hospital or physician who is deciding who will get to use the ventilator must never use a patient’s need for disability-related accommodations as a factor or reason for refusing them the ventilator.
6. A patient with a disability arrives at a hospital with possible COVID-19 symptoms. The hospital decides that the patient should be tested for COVID-19. This is an intrusive test. A swab is inserted deep into the patient’s nose.
Because the patient has a disability such as a degree of autism, they cannot physically handle the test’s intrusiveness, so the patient resists it. The patient could be tested if offered the chance to voluntarily be sedated. However, instead of offering the patient that option, the hospital staff decide not to test the patient because they are considered non-compliant or uncooperative.
In this situation, the hospital should not refuse to administer the test. Instead, the patient should be offered an accommodation to their disability, such as voluntarily taking sedation to enable the test to be administered.
7. A long-term care home has a COVID-19 outbreak. A 75-year-old resident with cognitive and physical disabilities gets the virus. Their symptoms are sufficiently serious that it is beyond the long-term care home’s ability to provide anything for them except for comfort care.
The long-term care home’s administrator is considering whether to send the resident to hospital. The resident’s cognitive disability has progressed to the point where they may not be able to make decisions for themselves about their care. The long-term care home administrator does not consult the resident’s substitute-decision maker on whether they should be sent to the hospital. Instead, the administrator decides on their own not to send the resident to hospital. This decision is based on their belief that the emergency room doctor will not give them life-saving treatment like a ventilator due to their disability or age, or because they think that the overloaded hospital should not be further burdened by this resident.
Any such decisions over whether or not to send a patient to the hospital should not be made on the basis of the resident’s age, disability or both, nor on the belief that the health system is overtaxed and therefore this person should not be offered treatment. This is apart from any question of whether this long-term care home administrator should even make this decision on their own, without contacting the resident’s physician, and without discussing the situation with the resident’s substitute decision-maker.
8. An ambulance is called to an apartment where a patient with disabilities has contracted COVID-19 and has severe symptoms needing hospitalization. The EMTs are reluctant to take the patient to the hospital. They figure that due to rationing or triage protocols and to that patient’s disabilities, the emergency room doctors would not likely give that patient a ventilator, due to shortage of ventilators.
The EMTs should never use the patient’s disability or their predictions about whether that might lead a doctor to refuse to treat them as a reason or factor to refuse to bring them to the hospital if they otherwise have symptoms warranting a trip to the hospital.
9. A patient with disabilities is admitted to hospital for COVID-19. While on a hospital ward, their symptoms get worse. They are having more difficulty breathing. The patient or their family asks a nurse on the ward to notify the attending doctor in order to seek further help for the patient.
The nurse decides that because of the medical care triage or rationing protocol, other patients would or should be a greater priority for the overworked doctors. The nurse thinks that the doctor may well decide that because of the patient’s disability, the doctor may not give that patient a scarce ventilator.
No nurse or other hospital staff should ever de-prioritize a patient with disabilities or decline to immediately notify the attending doctor on the request of the patient or their family, on the grounds that the nurse thinks the overloaded doctors may not assign a scarce ventilator to that patient.