The social norms that devalue people of age and disability are choices. The choices made by the Commonwealth of Massachusetts in Crisis Standards of Care: Planning Guidance for the COVID-19 Pandemic attempt to avoid bias, but nevertheless are affected by bias. Other choices can and should be made.
Crisis Standards of Care: Planning Guidance for the COVID-19 Pandemic provides guidance for physicians making decisions on patient care in a crisis. Triage is the process of determining the priority of patients' treatments based on the severity of their condition or likelihood of recovery with and without treatment; it has the goal of increasing the number of survivors.
In a crisis such as the COVID-19 epidemic, the lack of adequate medical resources may make it impossible for doctors to do everything possible to save each patient. Instead, they may be forced to choose among patients, who will live and who will die. The Commonwealth has created protocols intended to avoid bias but that value each patient in terms of the patient's future value to the community, instead of treating every life as of equal worth.
Leaders of the medical and public health community have been forced to confront the failure of our society leading to our inadequate medical systems in the face of COVID-19.
In fact, the health care system has been failing many people for a long time, and the current crisis exacerbates and makes visible the problems.
Further, our society has failed to make provision for disasters which are inevitable, if unpredictable as to when and where they fall: hurricanes, floods, fires are already becoming more frequent and extreme, driven by an already-changed climate. There are no adequate stocks of personal protective equipment, ventilators, and other essential supplies, despite repeated warnings by qualified experts. Even when a crisis such as COVID-19 is marching towards us, some of our leaders and our institutions have denied the reality and have delayed action.
But the real source of the problem is not the doctors or the state agencies who compose the protocols or must make life-or-death decisions, it is society which devalues the poor, the disabled, the elderly as well as people of color and immigrants. That negative valuation leads to less money to support services for these groups and to a woefully lacking system of accountability and of preparation.
"Crisis care must be the best care it can be in light of the circumstances and available resources. The purpose of this document is to provide guidance for the triage of critically ill patients in the event that the public health emergency caused by the COVID-19 pandemic creates demand for critical care resources that outstrips the supply."
"The foundation of the Commonwealth’s approach to crisis standards of care is that such tragically difficult decisions must be based on criteria that ensure that every patient has equitable access to any care from which they might benefit. These criteria must be as clear, transparent, and objective as possible, and must be based on biological factors related only to the likelihood and magnitude of benefit from the medical resources. Factors that have no bearing on the likelihood or magnitude of benefit, including but not limited to race, disability, gender, sexual orientation, gender identity, ethnicity, ability to pay, socioeconomic status, perceived social worth, perceived quality of life, immigration status, incarceration status, homelessness or past or future use of resources, are irrelevant and not to be considered by providers making allocation decisions."---Crisis Standards of Care: Planning Guidance for the COVID-19 Pandemic
I have been looking at the triage guidelines and see that if someone my age gets COVID-19 it is effectively a death sentence. I naively think that the decades of experience and accumulated wisdom we elderly have won are strengths that today enable us to contribute to society; I know that many of my peers continue to be important to their family and their communities.
Elderly need support services
Does a person who needs help to live independently in the community, or in an assisted living or nursing facility, score as a less valuable human being?
Sonia Sodha, a columnist for the Guardian, writes to criticize the lack of adequate resources for care of elderly in England, which she attributes to ageism---cultural bias against elderly.
But rather than pretending this is just a case of an urgently needed policy fix unaccountably languishing at the bottom of to-do lists, we need to confront that it is a symptom of something deeply wrong with the way we think about ageing.
This pandemic is lifting the carpet on some hard societal truths long swept out of sight. One of the most brilliant scientific advances of the last century has been the stretching of human lifespans; one of the least edifying aspects of collective human behavior has been our failure to adapt to its downside: people contending with longer spells of physical and mental decline in the last years of their lives.
Just because you have dementia does not mean you cannot feel joy and love; just because you need help to wash and dress does not make you incapable of richly stimulating conversation. But the way we talk about, think about and organize older care has become utterly dominated by the management of decline. As soon as someone needs help to live, the expectation of what it means for them to live a good life drops dramatically. We adopt a primitive baseline against which to judge whether we are meeting our societal obligation to our elders, and then we fail even at that.
Impact on disability community
Clearly, the sense that every person has value applies to people with a disability as well as people of color and the poor.
John E. Winske, the Former Executive Director, Disability Policy Consortium (DPC), writes in the April 13 edition of the Disability Policy Consortium Weekly Update:
"Our Commonwealth seems to have lost their way with the standards for rationing ventilators and care. Our public officials did not live up to their capabilities of building a more inclusive health care policy. They did not match our Commonwealth's illustrious history of thinking about ALL of our residents."
"When it came to the issue of rationing care in a pandemic, I hoped and prayed we would be different. The Disability Policy Consortium (DPC) spent the last 18 months educating staff at MassHealth, EHS and Health Care for All about Quality of Adjusted Life Years (QALY). As a reminder QALY is an economic data tool which values the life of a person living with a disability lower than that of a healthy person. In short, it assumes we, people with disabilities, lead unhappy, unfulfilled and thus less worthy lives. I wanted to believe that our educational efforts were paying off."
"There is no way to square the scoring statement with the non-discrimination clause. You are asking human beings to assign a score and to decide who is in better health and will live longer. A crystal ball is needed to determine who will live longer. Just by asking who is in better health you are bringing ableism to the table. We also know that people of color are more likely to be in poorer health for a wide variety of reasons. This policy is throwing the social determinants of health out the door."
"Sadly, this policy only reinforces privilege. It favors people in our society who are healthy and able to maintain their health. The Commonwealth tasked people of privilege (bioethicists) to design a policy, to be overseen by a group of people (doctors) who are more likely than not to come from privilege to determine who lives and who dies. Really? What could go wrong?"---John E. Winske
National Council on Disability: Bioethics and Disability
Despite the growing understanding that disability is a normal part of the human experience, the lives of persons with disabilities continue to be devalued in medical decision-making. Negative biases and inaccurate assumptions about the quality of life of a person with a disability are pervasive in U.S. society and can result in the devaluation and disparate treatment of people with disabilities, and in the medical context, these biases can have serious and even deadly consequences. In this series of reports on bioethics, the National Council on Disability will explore how people with disabilities are impacted by biases and assumptions in some of the most critical healthcare issues we face.
Civil rights of disabled persons
Some attitudes are widespread in our society so that we may take them for granted, but they are basis for discrimination in every sphere of life. A survey by Dr. Lisa Iezzoni (Harvard Medical School) found that many doctors tend to devalue the quality of life of people with significant disabilities.
A "vast majority" rated the quality of life of people with significant disabilities as a little to a lot worse than that of others.
"I was horrified," Iezzoni says.
People with significant disabilities tell Iezzoni they rate their lives as the same or better than others. Iezzoni is one of them. She has multiple sclerosis and has used a wheelchair since 1988.
"There's a lot of us roaming around with significant disabilities and who feel we have a pretty good quality of life," she says.---Joseph Shapiro, "People With Disabilities Fear Pandemic Will Worsen Medical Biases"
The disability community is fighting against unfair triage protocols in several states, protocols that are founded on the same tendency to under-value the lives of people with disability.
Three laws protect the civil rights of people with disabilities in medical settings: The ADA, Section 504 of the Rehabilitation Act, and the Affordable Care Act.
In April and March, disability groups cited those laws when they filed complaints against the "crisis of care" guidelines in several states. Kansas and Tennessee, according to lawyers who filed the complaint, would cut care to some people who rely upon home ventilators to breathe, although many use them to lead active lives. New York's plan says that a person who shows up at a hospital with their personal home ventilator could have it taken from them and given to someone else. And Washington State would factor in old age and disability. Similar complaints have been filed from Pennsylvania, Utah and other states.
On March 28, the Office for Civil Rights at the Department of Health and Human Services announced it had opened or would open investigations based on these complaints and warned states that any guidelines for triage of care could not put disabled people and the elderly "at the end of the line" for care.---Joseph Shapiro, "People With Disabilities Fear Pandemic Will Worsen Medical Biases"
Public health expert critical of guidelines
On Monday, April 13, 2020, Michelle Holmes, MD, DrPH told Jim Braude on WGBH News’ Greater Boston program why she was critical of the new guidelines and proposed the use of a lottery for scarce medical resources as a less unfair method. Holmes is affiliated with Brigham & Women's Hospital (BWH); Harvard Medical School; and Harvard School of Public Health. The guidelines penalize poor health and age, but Holmes views ageism as an outdated cultural prejudice, and she sees poor health as the result of societal prejudice against people of color. She is critical of the special status given only to health care workers, without consideration of the comparable exposure to infection experienced by vital workers in transportation and food distribution, workers who are people of color and relatively poor.
Holmes recognizes the good intentions of those who wrote the guidelines, but asserts that fairness and justice require that anyone in need of essential care with a ventilator must be allocated care by a lottery, provided that they can be expected to recover with that care and that they have chosen to undergo the intrusive procedure of ventilation.
She has posted her position in a petition to Jerome Adams MD, U. S. Surgeon General; Deborah Birx MD, Coordinator for the White House Coronavirus Task Force; and to Anthony Fauci MD, Director National Institute on Allergies and Infectious Disease.
Ayanna Pressley advocates for vulnerable
U.S. Rep. Ayanna Pressley asked Gov. Charlie Baker to rescind COVID-19 crisis care guidelines from the state, citing concerns the guidance around who receives certain medical resources amid any shortages would have a disproportionately negative impact on black and Latino patients and those with disabilities.
"Every community deserves the peace of mind of knowing health care providers will do everything in their power to save their lives during this pandemic, regardless of their race, zip code, disability, or current health status," Pressley wrote in a letter to Baker Monday. "Ethically and morally there is a strong case to be made that it is in fact because of these factors, not in spite of them, that we must prioritize the health, safety and wellbeing of our most vulnerable above all else." ---https://www.wbur.org/commonhealth/2020/04/14/ayanna-pressley-critical-c…
Sudders defends guidelines
In the Governor's daily briefing on April 13, 2020, Mary Lou Sudders, Secretary of the Executive Office of Health and Human Services, stressed that the guidelines were intended to avoid bias and provide fairness and equity to all, and that there is an appeals process. These guidelines would not replace existing guidelines and protocols in any institution, and hospitals are expected to consult with the state department of health. She also spoke to the need to mitigate over time the existing institutional barriers to equity.
No human is an island
"We have met the enemy and he is us," said Pogo, a character in a comic by Walt Kelley. Our society has failed us as a community, we have not provided equitable resources and opportunity to everyone. People of color, immigrants, poor people, disabled, elderly: all have experienced overt or covert discrimination.
In housing, the lack of resources and accountability is a reflection of social norms that consider the elderly and the disabled as of lesser value. That is because we, the recipients of government benefits, are not considered to be equal members of the community. We as a society prefer to value individuals whose worth is measured in health, youth, power, and money. We do not embrace all humans as of equal worth, we don't value human rights or civil rights.
Now we have elaborate protocols for triage of patients under crisis conditions. Doctors must switch from saving every life to caring for those most likely to contribute to the community for the longest time. In other words, the elderly and disabled people who have a severe health condition due to COVID-19 are less likely to get the scarce medical resource that might keep them alive and return them to the community.
As Mary Lou Sudders has recognized, these circumstances are a reflection of social and institutional barriers to equity. We must all work towards tearing those barriers down. And we must not wait until the next disaster, but instead prepare ourselves well in advance.
The Commonwealth of Massachusetts, Executive Office of Health and Human Services Department of Public Health, Crisis Standards of Care: Planning Guidance for the COVID-19 Pandemic, April 7, 2020