The Ruderman White Paper on Fair Resource Allocation During the COVID-19 Pandemic

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Fair Resource Allocation During the COVID-19 Pandemic

Dominic Sisti, PhD, MBE Joseph Stramondo, PhD, MA Hanna Shaul Bar Nissim, PhD April 2020


Fair Resource Allocation During the COVID-19 Pandemic The Case for People with Disabilities and Equality of Consideration

Dominic Sisti, PhD, MBE Department of Medical Ethics & Health Policy Perelman School of Medicine University of Pennsylvania Philadelphia, PA Joseph Stramondo, PhD, MA Department of Philosophy San Diego State University San Diego, CA Hanna Shaul Bar Nissim, PhD, MA Ruderman Family Foundation Newton, MA

April 2020

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This white paper examines the practices and conditions of treating people who have fallen victim to the COVID-19 pandemic. The COVID-19 pandemic has presented the world with a situation that has not been seen since the 1918 flu pandemic over 100 years ago. Healthcare professionals and policymakers alike are challenged by the need to navigate best practices for all patients who, in many instances, may have a wide variety of health concerns in addition to contracting the coronavirus.

With the COVID-19 pandemic engulfing much of the world, healthcare providers are forced to follow policy guidelines with regards to who receives certain treatments and what those treatments consist of. Often, receiving the treatment, or lack thereof, could be the result of a person having a disability, a pre-existing medical condition, or any one of several other discriminatory factors that could value one life over another.

This white paper delves into these issues and also provides suggestions on how to make the treatment process more inclusive, so that no one has to suffer more from the coronavirus simply because they are vulnerable or have a disability. When we do this, we are exercising equal rights for all.

Jay Ruderman President Ruderman Family Foundation

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Introduction The COVID-19 pandemic has cast a blinding light over the American health care system, exposing longstanding inequities and yawning gaps in access to care. We have entered an unprecedented period of absolute resource scarcity, as ventilators, hospital beds, and personal protective equipment (PPE) remain in short supply to counter the incoming waves of COVID morbidity and mortality. Widespread scarcity of breathing machines, in combination with contagion risk, have forced clinicians to confront seemingly impossible choices about who should receive a ventilator and who should not—in some cases, ultimately determining who will live and who will die.

More generally, as the World Health Organization has reported, significant barriers now exist making it difficult for disabled individuals to maintain safe hygienic practices and access up-to-date public health communications and routine care. This is a consequence of the need for social distancing and closures of services normally used by people with disabilities.[1] Individuals with developmental and intellectual disabilities are particularly vulnerable. In California, despite the comprehensive safety net guaranteed by the state’s Lanterman Act, years of financial shortfalls in combination with residential facility closures and service restrictions have shifted responsibility to families to provide 24-hour care of their loved ones with disabilities. [2]

Our response to the COVID-19 pandemic presents a more fundamental challenge and opportunity: to reaffirm and uphold our collective commitment to human and civil rights. In the context of medical ethics, the principle of justice entails we protect vulnerable persons from abuses in both clinical treatment and research settings [3, 4]. Individuals living with physical, intellectual, or mental disabilities constitute a particularly vulnerable population deserving of additional legal protections

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during the pandemic. Individuals with disabilities have expressed worry about being denied or deprioritized from receiving critical care due to their disability. They hold a reasonable concern that more subtle forms of discrimination based on ableist views of social worth and quality of life will creep into triage choices.[5]

In this paper, we describe the current state of affairs and offer recommendations for health policymakers and clinical decision-makers to help them strike a reasonable balance between their fiduciary duty to protect and care for individual patients with disabilities and the collective public health goal to save the most lives. Most often these goals are in alignment and are reflected in evidence-based triage plans. [6]

However, additional ethical guidance and deliberation may be required for specific cases where the protection of an individual with a disability appears to be in conflict with public health priorities. Reports from Italian and Spanish physicians remind us such decisions are excruciatingly pressured, making it difficult to fully attend to considerations of equal protection of individuals with disabilities. In New York City, Governor Andrew Cuomo citing the Italian experience, stated unequivocally there will be no age or disability-based rationing—calling for, instead, intelligent redeployment of resources from hospital-to-hospital and state-to-state in the race to stay ahead of the next surge.

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Disability, Allocation, & COVID-19: Key Takeaways 1. Individuals with disabilities are particularly vulnerable to discrimination in health care rationing due to extreme resource scarcity. 2. Justice, fairness, transparency, and solidarity are fundamental ethical principles guiding how services should be allocated to persons with disabilities. 3. Ethically acceptable triage models must include safeguards for individuals with disabilities. 4. Prioritizing the needs of patients with COVID-19 over others who are critically ill due to other illnesses or trauma is arbitrary and unjust. 5. The designation “allied healthcare providers” should include experienced family members and paraprofessional caregivers of persons with disability.

Attending to Patients with Disabilities Who Have Pre-Existing Medical Conditions

Since it was first identified in the continental U.S. in late January, COVID-19 has become a leading cause of morbidity and mortality. COVID-19’s rapid spread has now mobilized the nation toward a sustained effort of social distancing, business and school closures, and accelerated clinical research. These massive societal disruptions and efforts rightly signal COVID-19 is an urgent public health priority. While other diseases and conditions such as heart disease, cancer, and diabetes may have higher or equivalent annual morbidity and mortality rates, COVID-19 is highly contagious, while these other are not.

And so, it may become tempting to prioritize the needs of patients with COVID-19 over others who are critically ill due to other illnesses or trauma. However, favoring COVID-19 patients—

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simply on the basis of COVID-19—over patients with other conditions who may also need critical care would be arbitrary and unjust. Individuals with disabilities who experience non-COVID-19 medical emergencies should receive the standard of care or equivalent and they should be assured that disruptions or shifts in treatment are not pegged to a subjective evaluation of their quality of life.

People with Disabilities and Disaster Medicine

Healthcare systems, professional societies, and consortia of experts (including clinicians, ethicists, public health officials, and legal and other scholars) have developed over time triage guidelines aimed at setting clear standards for rationing choices. For example, the New York State Task Force on Life and the Law promulgated ventilator allocation guidelines in 2007 with revisions and specific sections for children and neonates in 2015. Designed to respond to a severe influenza pandemic, these guidelines were adopted by many hospitals. [7]

Currently, the most widely circulated triage guidelines were first developed by a team led by a critical care physician and bioethicist at the University of Pittsburgh Medical Center (UPMC). [8, 9] These guidelines were subsequently revised with input from stakeholders and disaster medicine experts from across the country and released as a model policy that has been adopted by hundreds of hospitals nationwide.

UPMC’s model is based upon two fundamental aims: saving the most lives and saving the most lifeyears. These aims are rooted in utilitarianism, an ethical theory that posits that the correct ethical choice is the one that maximizes the greatest good for the greatest number of people (or minimizes

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the most harm to the most people). Additionally, and importantly, the Pittsburgh Model includes important ethical guardrails drawn from rights- and justice-based moral theories that serve to protect individuals with disabilities. For example, the policy stipulates no categorical exclusion criteria shall be used, nor will quality of life assessments be made.

Critiques of the Pittsburgh Model remain, given how it prioritizes long-term survival as a goal. This is because predicting a person’s long-term survival of five or even ten years is notoriously quite difficult.[10] The further out medical predictions are made, the more speculative they become and the more prone to implicit bias against people with disabilities. Similarly, controversy exists about aspects of the Sequential Organ Failure Assessment (SOFA) score used to determine short-term survival. [11] Notwithstanding these ongoing points of debate, we do endorse the Pittsburgh Model, as it is an ethically coherent evidence-based triage model.

Other frameworks have been developed and deployed, each with differing approaches to how individuals with disabilities may be prioritized. [12] Some of these frameworks are morally deficient in that they single out and exclude from consideration individuals with particular disabilities. For example, a 2010 ventilator policy developed by state of Alabama for a possible bird flu pandemic included categorical criteria that excluded individuals with dementia and intellectual disabilities. In response to public outcry and after a ruling the Department of Health and Human Services Office of Civil Rights that it violated federal civil rights laws, Alabama’s ventilator policy has appropriately been rescinded and replaced.

Enacting Decisions: Triage Teams and Transparency

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To implement triage guidelines in a way that is as objective as possible, it is recommended that a triage team is assembled. This team should not include the patient’s treating clinician, who has a fiduciary duty to treat. [13] The Pittsburgh Model recommends appointing a critical care physician as a triage officer, as well as a nurse with critical care experience and a hospital administrator, who would document the process and serve as a bridge to the organization’s management team. This team is charged with making decisions about who will be prioritized to receive critical care based on clinical data for each patient, aiming to use resources in a way that maximizes patient survival. Even the most empirically sound triage processes may be vulnerable to implicit biases about the quality of life or other stereotypes about disabled individuals. We therefore recommend including a disability advocate on triage teams, who would be attuned to this possibility. [14]

Further, including a representative from a disability advocacy organization on triage teams could go a long way toward increasing public trust in the decisions that are made, since such a key stakeholder would be so visibly included in the process. Avoiding mistrust must be a central concern of triage efforts so that patients are not hesitant to seek treatment. To that end, transparency in exactly what the triage criteria are is also essential. Finally, it may even be worth building in (and publicly acknowledging) some kind of appeal and oversite process that reviews triage decisions to make sure that the teams are accurately implementing whatever protocol is being deployed.

A comprehensive list of considerations for hospital ethics services has been developed by scholars at the Hastings Center. [15] These include refocusing ethics committee efforts in careful coordination with health system leaders, providing ethics training to key staff, and working closely with critical care and palliative care teams. We note that urgency and logistical challenges may make it difficult to expeditiously implement a triage process that involves an independent triage team. Consultation

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with triage experts, disability advocates, and ethicists may be possible via phone or video conference in emergent situations. However, we recognize that even this may be difficult. It is therefore crucial that all frontline clinicians receive education about their hospital’s triage protocol and the central role they play in ensuring vulnerable patients are protected.

Visitation in Hospitals and Residential Facilities

The history of medicine has recorded longstanding structural discrimination against people with disabilities including physical and communication inaccessibility. Hospital visitation policies should be developed with this in mind, aiming to support universal design and access. Policies should be flexible enough to accommodate the needs of people with disabilities who require an attendant or caregiver to advocate for them or meet their basic care needs. [16] In these cases, hospital staff may not be equipped to meet these needs and the presence of a caregiver could ease their burden. This is especially true for people with disabilities who require specialized care and may not be able to communicate these needs effectively with hospital staff. For these individuals, isolation from their usual caregivers may make them more vulnerable to the effects of the virus and may even be as risky as infection itself. It is crucial that visitation policies and procedures aim to accommodate these individuals and their caregivers. Equally important will be efforts to accommodate and allow for the presence family members and other caregivers in long-term residential settings.

We recommend reframing the concept of who counts as an “allied healthcare providers� to include experienced family members and paraprofessional caregivers. This will serve two important purposes: (1) It will allow these individuals to advocate for people with disabilities in hospital or institutional settings and (2) It will relieve some pressures in service allocation as these individuals

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can serve as bedside attendants who would monitor the patient’s condition, freeing up frontline workers. This possibility will be dependent on the availability of personal protective equipment (PPE) for caregivers, which is currently in short supply. However, as PPE becomes more available this option becomes more viable.

Toward A Culture of Solidarity & Inclusion

The unprecedented impact of the COVID-19 pandemic shows us that to effectively protect the public’s health we must recognize the interdependence of individuals, communities, and health care systems. We must commit to a culture of solidarity that respects and protects individuals with disabilities. We see the beginnings of this commitment in ethically sound, evidence-based triage guidelines that have included people with disabilities in their development and that incorporate justice-based considerations as guardrails against crude utilitarianism. The lessons learned during this public health catastrophe will inform clinical practice and health policy for decades to come. People with disabilities must hold seats at the policy table.

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Dominic A. Sisti, PhD, MBE is an assistant professor and director of the Scattergood Program for Applied Ethics of Behavioral Health Care in the Department of Medical Ethics & Health Policy at the University of Pennsylvania.

Joseph Stramondo, PhD, MA is an assistant professor of philosophy and associate director of the Institute for Ethics and Public Affairs at San Diego State University. His teaching and research bring bioethics into conversation with philosophy of disability.

Hanna Shaul Bar Nissim PhD, MA, Ruderman Family Foundation, Visiting Scholar, Brandeis University

References 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16.

World Health Organization, Disability considerations during the COVID-19 outbreak. 2020. Morain, D. and A. Chabria, Coronavirus ravages services for people with disabilities, leaving many at risk, in Cal Matters. 2020. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. 1978: ERIC Clearinghouse. Beauchamp, T.L. and J.F. Childress, Principles of biomedical ethics. 2001: Oxford University Press, USA. Godfrey, E., Americans With Disabilities Are Terrified, in The Atlantic. 2020. Persad, G., Why Disability Law Permits Evidence-Based Triage in a Pandemic. Yale Law Journal Forum, 2020. forthcoming. New York State Task Force on Life and the Law, Ventilator Allocation Guidelines, N.Y.S.D.o. Health, Editor. 2015. White, D.B., et al., Who should receive life support during a public health emergency? Using ethical principles to improve allocation decisions. Ann Intern Med, 2009. 150(2): p. 132-8. White, D.B. and B. Lo, A Framework for Rationing Ventilators and Critical Care Beds During the COVID-19 Pandemic. JAMA, 2020. Ne’eman, A., When It Comes to Rationing, Disability Rights Law Prohibits More than Prejudice. 2020. Fins, J., Disabusing the Disability Critique of the New York State Task Force Report on Ventilator Allocation, in The Hastings Center Bioethics Forum. 2020. Cha, A.E.C. and L. McGinley, Who gets a shot at life if hospitals run short of ventilators?, in The Washington Post. 2020. Michelson, K., If it comes to rationing, I shouldn’t have to be the one deciding who should live and who should die, in STAT: First Opinion. 2020. Stramondo, J., Disability, Likelihood of Survival, and Inefficiency Amidst Pandemic. 2020: bioethics.net. Berlinger, N., Wynia, M, Powell, T, et al., Ethical Framework for Health Care Institutions Responding to Novel Coronavirus SARS-CoV-2 (COVID-19) 2020. Karlawish, J., Hospitalized adults need their caregivers — they aren’t visitors, in STAT. 2020.

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