On March 28, 2020, the Department of Health and Human Services (HHS) Department of Civil Rights opened an investigation into recently released triage protocols for critical care.1 Disability rights advocates urge Congress to stop triage of crises based on ” anticipated or demonstrated “to prohibit resource intensity needs, the relative survival rates of patients believed to benefit from medical treatment, and assessments of quality of life before or after treatment. “2
The Americans with Disabilities Act (ADA) prohibits the adverse treatment of people with disabilities, but discrimination is widespread, including in the healthcare system.3 Given the rising cases in Covid-19, the potential for an extreme shortage of critical care resources It is health organizations planning a triage at the crisis level under the guidance of professional societies and ethicists, aiming to allocate scarce resources primarily to save most lives
Crisis triage protocols should aim to optimize health outcomes. However, this requires an explicit protection of fundamental values, for example the same moral value for all people. We offer policy recommendations that can help achieve both goals. The assignment of ventilators has become a symbol of the difficult ethical choices we face. However, the criteria and procedures we recommend apply to any scarce medical resource.
Disability rights advocates recognize that during disasters, “it may be appropriate for providers to delay non-essential care [and] not be obliged to provide a quantitatively senseless supply. “2 Crisis triage only occurs in forced choice scenarios where not everyone can receive basic care. Some disability rights advocates claim that triage based on assessing the likelihood of patient benefit in such circumstances is fundamentally inconsistent with respect for human dignity. Instead, they suggest introducing a first-come-first-served process.5 However, this approach would do worse for many people with disabilities. In particular, people who are confronted with transport, communication and other access barriers could be systematically disadvantaged.
We believe that crisis triage protocols should focus on identifying those patients who are most likely to die without a ventilator, but most likely to survive, using the best available clinical survivability scores and non-general categorical exclusions. “Survivability” is sometimes defined as life to discharge from hospital or 1 year after discharge (both reasonable) and long term, a criterion that is neither practical nor ethical. The ability to predict long-term survival is poor and therefore prone to bias. In addition, many disadvantaged populations have reduced life expectancies, and triage protocols should not exacerbate health inequalities.
In addition, short-term survivability can be assessed regardless of disability. Consider two patients with Down syndrome, one with adequate cardiac function and one with cardiovascular disease. Down syndrome is an inadequate triage consideration, but poorer baseline heart function results in lower Covid-19 survivability. Cardiac dysfunction could therefore be included in the rating system, but only if the criterion applies to all patients, not just those with Down syndrome. Patients with adequate heart function, regardless of their physical or mental disability, would then have the same triage score. Patients with pre-existing cardiovascular disease would receive lower scores as they are less likely to benefit from the intervention, not because of disability.
Rating systems with quality-adjusted or disabled-friendly years of life should not be used. They are openly discriminatory if they explicitly count a year for a person with a disability as less than a year for a person able to work. Assessment systems should also be the subject of ongoing research to ensure that they accurately predict short-term mortality and do not unfairly disadvantage people with disabilities who are not related to short-term survival. For example, Colorado recently changed its proposed rating system (www.colorado.gov/pacific/cdphe/colorado-crisis-standards-care) to avoid counting congenital hemiplegia as a risk factor while taking into account the fact that hemiplegia is ischemic or ischemic causes Hemorrhagic stroke carries a higher risk of short-term death.
Although doctors’ assessments of present or future quality of life should be inadmissible as a triage factor, patients have the right to make medical decisions based on their own assessment of quality of life. If patients are unable to work, their designated agent may make such assessments on their behalf based on the patient’s values and preferences. As with normal care, doctors need to be careful that patients or their proxies are not intentionally or unintentionally steered in a particular direction, as those decisions are individualized, the evidence is that clinicians and people with disabilities perceive their quality of life differently, and that Suspicion This can be generated when patients or families feel compelled.
Some disability rights advocates have also raised concerns that hospitals might withdraw ventilators from patients on stable long-term ventilation in order to make ventilators available to other patients.5 Triage protocols should clarify that such involuntary separation would violate a primary goal of ethical triage – promoting social cohesion and healing after a crisis.
While stable disability is an ethically irrelevant consideration for triage, the intensity of resource use associated with the patient’s clinical history can become a valid consideration. In a crisis, if the first patient’s condition worsens and he or she is less likely to survive than the second patient, removing a ventilator from one patient in order to make it available to another patient may be ethical. However, it is important not to remove critical care resources from patients too early as this can lead to increased all-cause mortality when using a ventilator running through patients, neither of whom has long enough time to make a difference to effect. Reasonable arrangements for a longer initial ventilatory study are therefore warranted for patients with conditions that are typically slow to improve, including Covid-19. To determine what constitutes “reasonable” accommodation, professional societies should develop more detailed guidance on the adequacy of initial therapeutic trials for patients with various medical conditions that require mechanical ventilation.
Most controversial is the goal of maximizing the number of years of life saved by either giving younger people priority over older people or by putting people with serious life-limiting diseases at a disadvantage. Both types of age considerations are ethical, but only as a tiebreaker. Privileging younger patients is justified because it is based not on stereotypes or prejudice against older patients, but on equal opportunities and harm minimization: the younger people had fewer opportunities to live full lives and would therefore suffer more harm if they died. In terms of advanced disease, it would be ethical for two people to have an equal chance of short-term survival, but one person to have advanced cancer and a low predicted chance of 5-year survival according to validated measures, has a prospect of longer life. However, it would be unacceptable to assume that all patients with a particular disability have a shorter life expectancy than other patients and to decide that resources should therefore not be given scarce resources.
A commitment of equal value requires the application of triage criteria to all patients in need of a ventilator, whether they have a disability or a diagnosis of Covid-19. Because patient characteristics that are not directly related to clinical outcomes (such as solvency, race, disability, or immigrant status) should not be used in decision-making, a blinded review process should be used where possible, in which triage decision-makers are unaware of the medicine and ethically irrelevant patient characteristics.
The ADA requires organizations to take “reasonable accommodation” to ensure that people with disabilities have access to services. The goal is to ensure that all Americans have equal opportunities to live full lives and that societal prejudices that affect the representation of people with disabilities are broken down. As they prepare for the possibility of crisis triage, health care organizations must also proactively ensure access and reduce bias in times of scarcity by taking HHS recommended actions to help patients who are deaf, blind, or other communications – or have mobility problems to offer ongoing services.
After all, the science and epidemiology of Covid-19 is changing rapidly and more will be learned about the community acceptance of crisis triage protocols. Healthcare organizations should treat current triage plans as tentative, subject to change based on new knowledge and actively sought community contributions.
To ensure health system trustworthiness, disability rights advocates and health care leaders should work together to finalize crisis triage plans that will save most lives, protect the equal value of all, and improve communities’ ability to heal after a once in a century of pandemic.