Respecting Incapacity Rights — Towards Improved Disaster Requirements of Care

Many legal regulations can change in an emergency. For example, to allow hospitals to respond to Covid-19, the Department of Health and Human Services (HHS) recently waived a number of state regulations. Although the civil servants’ emergency powers are extensive, the ability to reject anti-discrimination safeguards is not one of them. A hallmark of our legal system is that our obligation to ban insidious discrimination remains unwavering, even in emergencies.

Disability rights advocate objections to the framework for state allocation of critical care.

This commitment is put under pressure when there is a need to screen patients in order to conserve scarce medical resources such as ventilators and intensive care beds. As states and hospitals plan for an increase in Covid-19 cases, they have had to make tough decisions, some of which have generated criticism. In March and April 2020, advocacy groups for people with disabilities and people with disabilities filed complaints with the HHS Office of Civil Rights (OCR) alleging the guidelines issued by Alabama, Kansas, New York, Pennsylvania, Tennessee, Utah and Washington would illegally discriminate against people with disabilities (see table). Massachusetts guidelines have raised similar concerns. Analysis of these complaints suggests that policymakers and hospitals can take several important steps to comply with anti-discrimination policy commitments while properly managing scarce resources during a public health emergency.

The focus of complaints from disability advocates is policies that base triage decisions on quality of life choices or exclude patients with certain conditions that represent disabilities. For example, Alabama’s now repealed guidelines have urged hospitals to withhold ventilators from patients with “severe or severe intellectual disability,” “moderate to severe dementia,” or “severe traumatic brain injury”. Utah guidelines recommend excluding patients with advanced neuromuscular disease “who require assistance with activities of daily living or who require chronic ventilation assistance.”

A principle underlying the complaints should not be discussed in a controversial manner: For legal and ethical reasons, patients should not be categorically excluded from access to treatment because of a disability. Rather, following an established precedent, the HHS guidelines state: “Whether a person is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.” Access to treatment does not need to consider whether someone has a disability, but rather the patient’s prospects of benefiting from treatment. Exclusion of patients for pre-existing functional impairments that do not necessarily limit their chances of survival, as is the case in Utah, equates to exclusion because of disability and is likely illegal.

Policies such as those of Alabama and Utah seem to make quality of life assessments for certain disabilities legally and ethically problematic. The HHS guidelines state that “People with disabilities should not be withheld from medical care based on stereotypes, assessments of quality of life, or judgments about the relative” worth “of a person based on the presence or absence of disability” 1, which is consistent with older HHS guidelines restricting the use of quality of life ratings in Medicaid benefit design. These guides reflect an awareness of prejudice in public assessments of the quality of life of people with disabilities – an issue that also affects doctors’ judgments. Ethically, such prejudices justify the exclusion of quality of life as a triage criterion.

The complaints also reject the inclusion of long-term life expectancy in allocation decisions with good reason. For example, they claim that the initial triage scoring guidelines developed by Pennsylvania and Massachusetts incorrectly used long-term life expectancy as a criterion by taking into account the number of years of life saved. (Both states have subsequently revised their guidelines.) It is unclear whether the Disability Act allows triage decisions to be based on long-term life expectancy. It is ethically preferable to avoid this as long-term life expectancy is negatively affected by some disabilities and social circumstances such as poverty and poor access to health care. Using long-term life expectancy would therefore likely unfairly disadvantage some people with disabilities and exacerbate other health inequalities. In addition, predictions about long-term life expectancy are much more uncertain and biased than predictions about short-term survival.

If some complaints have strayed, it suggests that it is unfair and illegal to consider patients’ short-term prognosis in allocation decisions (e.g., patients expected to be in a condition within a year End-stage die, assign a lower priority even if they survive the acute illness). For example, disability rights advocates in Pennsylvania are calling for the prognosis to be ignored, except for “immediate viability” (ie, the ability to survive the acute illness); Proponents in Washington also claim that only the ability to survive Covid-19 with treatment is relevant. A recent letter from eight US Senators goes further and suggests that even large differences in chances of survival should be ignored when a person has a “non-negligible” chances of survival

The consideration of the short-term prognosis is accepted in medical ethics and clinical practice. The American Medical Association’s Limited Resource Allocation Guidelines recommend that decisions be made based on “the likelihood and expected duration of benefit.” Framework conditions for the allocation of transplantable organs, a process monitored by HHS, include the short-term duration of the benefit as a criterion. The recent National Disability Council report on disabilities and organ transplants did not oppose the use of short-term benefits in organ allocation. And on April 16, 2020, the OCR approved revised triage guidelines for Pennsylvania that include rating the short-term forecast.

Allocation guidelines that ignore short-term forecasting can produce results that are inconsistent with deliberate moral judgments about the responsible use of scarce resources. For example, a patient with advanced metastatic pancreatic cancer who is expected to die within weeks would be given the same ventilation priority as a patient who is visually impaired but has no conditions that affect short-term prognosis. As in this example, the inclusion of the short-term prognosis usually benefits patients with disabilities more than random selection, first-come-first-served rules, or ignoring the prognosis altogether, since most disabilities do not materialize the short-term prognosis influence.

The use of evidence-based predictions of hospital survival and short-term prognosis is also supported by case law.3 Cases where unlawful discrimination is found in medical decisions include factually unsupported, categorical judgments, such as the exclusion of a deaf patient from the Prenatal care 4, while evidence-based predictions were confirmed. 5

The need for emergency triage policies and processes is undeniable. Properly designed policies can save more lives – including those with disabilities – and counter the predictive and other decision biases that can affect bedside doctors’ decisions. However, policies must take into account the interests of people with disabilities.

Our analysis suggests six guideposts that states and hospitals should follow to respect the rights of people with disabilities. Four relate to decision criteria. First of all, don’t use categorical exclusions, especially those based on a disability or diagnosis. Second, you are not using the perceived quality of life. Third, use hospital survival and short-term prognosis (e.g., death expected within a few years despite treatment), but not long-term life expectancy. Fourth, when patients who use ventilators in their daily lives (e.g. home ventilation) are present in acute hospitals, their personal ventilators should not be reassigned to other patients.

The fifth recommendation to designate triage officers as decision-makers and train them to respect the rights of people with disabilities is procedural. Triage officers must assess patients individually based on objective medical evidence, not stereotypes or assumptions. To this end, some experts suggest that the information available to triage officers exclude any patient characteristics that are not relevant to the prognosis for hospital and short-term survival.

Finally, disability rights advocates should be involved in policy development and dissemination. This shows respect, helps avoid paternalism, increases procedural justice, and can lead to much better guidelines. This can also help avoid ambiguity in guidelines that lead to misunderstanding and speculation. For example, some states’ guidelines use vague terms such as “life-limiting”, which may refer to the duration of benefits, but also include judgments about quality of life. Involving disability rights advocates can help avoid potentially flammable languages ​​and ensure (e.g. by providing accessible FAQs) that the public understands how policies are (and not) operationalized. These steps can help the health system meet its anti-discrimination commitments while properly managing scarce resources.