John Kelly: Testimony to Boston City Council Opposing Triage Based On 5-Year Survival Predictions

ageism, bioethics, COVID-19, health disparities, healthcare rationing, john kelly, lifeboat ethics, medical discrimination, Our News & Commentary Blog, Second Thoughts, Testimony, , , ,
Head and shoulders photo of short haired white man with wire-rimmed glasses wearing black and white plaid shirt, with wheelchair headrest and sip-and-puff operating switch visible in the frame.
John Kelly

The following is expanded from remarks prepared for oral testimony at the April 22 hearing. I am adding information from the hearing testimony of the Massachusetts Coalition on Health Equity. Additional information is drawn from the Bay State Banner article on the hearing.

A hearing on the proposed guidelines for ventilator distribution and ICU beds in the event of a shortage and ensuring that health inequities do not dictate medical care during the COVID-19 pandemic.

 

BOSTON CITY COUNCIL COMMITTEE ON PUBLIC HEALTH HEARING ON DOCKET #0638
Testimony of John B. Kelly, Director of Second Thoughts MA
April 22, 2020

My name is John Kelly, I am the director of Second Thoughts MA, a grassroots group fighting policies and actions that place a lower value on the lives of older, ill, and disabled people. Second Thoughts MA is the state affiliate of the national disability rights group with the same mission, Not Dead Yet, of which I am New England Regional Director.

Thank you Councilors Ricardo Arroyo and Andrea Campbell for bringing this issue before the Council. Thank you for facilitating testimony against any life expectancy criteria determining who does and does not get a ventilator in case of scarcity.

I appreciate the advocacy of groups like the Disability Policy Consortium, Justice in Aging, Greater Boston Legal Services, and others in persuading the state to revise its Crisis Standards of Care to be less discriminatory against older, ill, and disabled people. But the state has not dropped its plan to base triage decision-making on five-year expected survivorship. It must do so.

As Justice in Aging wrote in its letter to Gov. Charlie Baker,

The use of certain factors correlated with age, such as estimates of number of years remaining and prognosis for long-term survival, discriminate against older adults for receiving life-saving treatment when supply is limited.

A group of doctors, the Massachusetts Coalition on Health Equity, testified at the hearing that the revised guidelines are just a start.

“These guidelines still do not go far enough to truly protect marginalized populations like communities of color and patients with disabilities,” said Mass General emergency room Dr. Alister Martin.

Dr. Martin said that the guidelines still include reference to patient’s “medical history” and “underlying conditions,” which will disparately impact disadvantaged groups.

Anita Cameron, Director of Minority Outreach for Not Dead Yet, recently wrote a blog on the structural racism of our healthcare system

Our Healthcare System is inherently racist. Blacks receive inferior care to that received by whites, particularly in the areas of cardiac, diabetes, and pain management. Blacks are more likely to die because doctors have overlooked something critical or will not listen to or believe what we have to say about our health and pain.

It’s outrageous that minorities with health conditions caused by the system could again be discriminated against in terms of expected five-year survival.

Dr. Onyekachi Otugo, an emergency medicine doctor at St. Elizabeth Hospital, testified that there are thousands of people walking around who were told years ago that they had less than 5 years to live. She emphasized that 5 years is a long time, and that the state must not be differentiating between people in its decision-making.

People with disabilities have stories about our longevity being underestimated and undervalued. For example, the late Harriet McBride Johnson titled her book “Too Late to Die Young,” because doctors had been telling her since she was a child that she would be dying within a few years.

Two years ago, a chest cold led to the collapse of my left lung. I was rushed to Boston Medical Center, intubated and diagnosed with necrotizing pneumonia. It took 3 weeks on a ventilator and dedicated care, but I recovered. It was described as a miracle. If I were to present with similar symptoms in a triage situation, I’m afraid that implicit bias would rate as low my chances of living 5 years. I’m afraid that estimates of my immediate survival would also be biased. Would my previous history of pneumonia count against me? I think my survivorship should count in my favor because my lungs were resilient enough to overcome the odds.

Going forward, the doctors testified that triage protocols must be developed transparently, with public access to real-time data. Dr. Lana Habash, a family medicine doctor at Boston Medical Center, said that there needs to be community oversight, including representatives of people who are uninsured or homeless.

It is hopeful that Massachusetts will avoid a crisis shortage of ventilators, but we must continue to make sure that the voices of marginalized people are reflected in the policies of the state.

Lisa Blumberg – Medical Rationing: When Disability Bias Hides Behind A Magical “Invisibility” Cloak

bioethics, COVID-19, futility, health disparities, healthcare rationing, life-sustaining treatment, medical discrimination, Our News & Commentary Blog, Sequential Organ Failure Assessment, , ,
Photo of Lisa Blumberg, head and shoulders shot of a smiling woman with short gray hair and a dark blue blouse seated with a desk of files and books in the background.
Lisa Blumberg

Among the rationing plans being discussed to respond to the strain the surge in coronavirus cases is expected to place on the capabilities of hospitals in some cases, the Pittsburgh Model Plan Regarding the Allocation of Scarce Critical Care Resources during a Public Health Emergency (1) is being given the most play. The Plan would prioritize patients for critical care by assessing both the likelihood the person would survive the virus if treated and whether the person has another condition that would seem to cause him to have a life expectancy of less than one year or less than five years even if he did survive the virus.

The Plan in justifying the use of the second measure states, “the allocation framework goes beyond simply attempting to maximize the number of patients who survive to hospital discharge, because this is a thin conception of doing the greatest good for the greatest number.” The Plan is venturing into places it need not go. Everyone knows how beleaguered the health care system is now and that exhausted and distraught health care workers at risk to themselves are doing their level best to save lives. Exactly who thinks the health care community should also be preoccupied about which folks are going to be here five years from now? That is rather utopian – and not in a good way – when so many people are trying to survive the moment.

The Plan seems curiously defensive about disability. Two of three objectives mention disability. They are “to create meaningful access for all patients. All patients who are eligible for ICU services during ordinary circumstances remain eligible, and there are no exclusion criteria based on age, disabilities, or other factors…[and] to ensure that no one is denied care based on stereotypes, assessments of quality of life, or judgments about a person’s ‘worth’ based on the presence or absence of disabilities or other factors.”

Assessments of priority for critical care are to be done by an appointed triage officer and not by the patient’s attending physician who may favor the patient. The prognosis for surviving the respiratory ailment is to be determined by the patient’s Sequential Organ Failure Assessment (SOFA) score. The SOFA score is characterized as an objective medical score, but many have raised questions about built-in biases producing a negative impact on people with chronic conditions. The Plan also factors in a person’s life expectancy. There’s no guidance though on how to determine the patient’s general life expectancy. The triage officer, overworked as she may be and trying to function in chaos, is just expected to be able to tease this out.

Patients will be assigned between 1 to 4 points based on SOFA scores. Two points will then be added if life expectancy is predicted to be less than five years, and 4 points for life expectancy seen to be less than one year. Priority for critical care will be then be given to those with fewer points. (Age is a “tie-breaker” if two people with the same number of points need the same ventilator).

You just need basic math skills to see that a person can get a fairly low SOFA score (meaning the chances of survival are good) and still get knocked to the back of the line if the triage officer believes that the presence of a significant disability will decrease life expectancy. The Plan calls this saving “life years”.

Even in the best of circumstances – and we are not talking about the best of circumstances here – life expectancy cannot be determined with near reliability. (2) People confound doctors all the time and the longer the time frame at issue, the more speculative any determination of life expectancy becomes. It is simply magical thinking to believe that a triage officer, no matter how well intentioned she is, can go from bed to bed and know with any certainty whether a disability or underlying condition decreases life expectancy and by what amount. How is a triage officer to tell much of anything about a man with Down syndrome who may or may not have Alzheimer’s, a woman with a neuromuscular condition who has already outlived her life expectancy by twenty years, a senior citizen with cerebral palsy or a diabetic who uses insulin?

As a group of concerned health care providers wrote when a plan based on the Pittsburgh model was proposed for hard hit Massachusetts, “guidelines that evaluate patients by age or ‘comorbid conditions [that] impact survival’ or ‘underlying medical diseases that may hinder recovery’ implicitly rely on value judgements about these patients’ quality of life and deny these patients justice in our healthcare system.” (3)

These plans make no mention of the doctrine of futility. Indeed, the stated idea is not to render any patients ineligible for treatment but, if medical shortages occur, to give some people less priority (which has the same practical effect). Yet, when one reads the Pittsburgh Plan, futility doctrine come to mind. According to the National Council on Disability (NCD), medical futility is an ethically, medically, and legally divisive concept concerning whether and when a healthcare provider has the authority to refuse to provide medical care that they deem “futile”. (4)

There are several approaches to medical futility. As the NCD states, “healthcare providers often harbor stereotypes and misguided quality-of-life judgments about patients with disabilities. These biases and assumptions can and do make their way into medical decisions and, when those decisions involve medical futility, they can have fatal results for people with disabilities. “ (5)

In this terrible crisis, disability advocacy groups have acted nimbly. On March 18, state disability groups warned in the Boston Globe that any attempt to discriminate against disabled people seeking care for the virus would have legal and social consequences. (6) A strong piece by activist Ari Ne’eman appeared in the New York Times on March 20. (7) On March 25, the Disability Rights Education and Defense Fund issued a major statement on the illegality of rationing measures when they result in the denial of care on the basis of disability to an individual who could benefit from it. (8) These efforts have continued.

Of course, we aren’t the only group at risk. As the health care professionals who join disability groups in opposing the proposed Massachusetts standards wrote, the standards “will result in the withdrawal of life-saving care ― including mechanical ventilation ― from a disproportionate number of indigenous people, Black people, Latinx people, other communities of color, elders, immigrants, asylumees, refugees, and those who are undocumented, uninsured, incarcerated, homeless, experiencing poverty, or living with disability.” (9)

Our advocacy helps ourselves and many, many others.

FOOTNOTES

  1. https://www.ccm.pitt.edu/sites/default/files/UnivPittsburgh_ModelHospitalResourcePolicy.pdf
  2. http://www.baltimoresun.com/opinion/op-ed/bs-ed-op-0219-assisted-suicide-20190215-story.html
  3. https://www.bostonglobe.com/2020/04/12/metro/state-announces-70-more-deaths-due-coronavirus-2615-new-cases/
  4. https://ncd.gov/sites/default/files/NCD_Medical_Futility_Report_508.pdf
  5. Ibid.
  6. https://www.bostonglobe.com/2020/03/18/opinion/disabililty-community-will-fight-any-attempt-discriminate-over-scare-medical-resources/
  7. https://www.nytimes.com/2020/03/23/opinion/coronavirus-ventilators-triage-disability.html
  8. https://dredf.org/the-illegality-of-medical-rationing-on-the-basis-of-disability/
  9. https://www.bostonglobe.com/2020/04/12/metro/state-announces-70-more-deaths-due-coronavirus-2615-new-cases/

 

NDY’s 24th Anniversary: Never Has the Fight For Our Lives Been More Urgent

better dead than disabled, bioethics, Bob Kafka, COVID-19, healthcare rationing, john callahan, lifeboat ethics, medical discrimination, Our News & Commentary Blog, ,

On this day, April 27, 24 years ago, I was at a national disability rights conference in Dallas. ADAPT organizer Bob Kafka called out to me and said, “I’ve got a name for your group,” a group that increasingly seemed to be needed to combat the growing public sentiment that disabled people are better off dead (and society is better off without us). The name Bob suggested was “Not Dead Yet”, based on a running gag in the movie Monty Python and the Holy Grail. On that day, over 40 disability leaders (Justin Dart, Judy Heumann, Marca Bristo and more) signed on to testimony I would give at a Congressional subcommittee hearing two days later. Not Dead Yet had begun.

Today, in the midst of the COVID-19 pandemic, the plague scene from Monty Python and the Holy Grail hits painfully close to home, as an older man is thrown on a dead body cart, protesting he’s “not dead” – yet. Today, we’re seeing countless medical triage policies that would literally throw older and disabled people away. Never has the need to fight for our lives been more urgent.

Our name has a bit of humor as well as a bite to it. Sometimes disability humor can be dark. So, on NDY’s 24th Anniversary, we share the plague scene from Monty Python and the Holy Grail and quote disability humorist John Callahan (1951 – 2010) who said, “Comedy is the main weapon we have against ‘The Horror.’ With it we can strike a blow against death itself.”

[IMAGE DESCRIPTION: Scene from Monty Python and the Holy Grail, a medieval village during the Black Death, men in rags pushing a wooden cart through mud, as one man bangs a pot and calls “Bring out your dead!” Then a young man brings an older man, we assume his father, thrown over his shoulder, but the old man says “I’m not dead” – yet. After a back and forth, the pot banger clubs the old man in the head, and the young man throws him on the cart, and thanks the pot banger for his help.]

Anita Cameron: Racial Disparities in the Age of COVID-19

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Head and shoulders photo of Anita Cameron, an African American woman with long dreadlocks and brown sweater.

Racial disparities in healthcare have always existed but it’s only been recently that it has been openly discussed as a serious issue in this country. Blacks and communities of color have always known about it because we experience it ourselves, first-hand. Studies show that we receive inferior healthcare compared to Whites. Little by little, the mainstream public is starting to learn. Racial disparities in healthcare are one manifestation of systemic, institutional racism.

Now, enter COVID-19, also known as coronavirus. What started as an outbreak has turned into a worldwide pandemic, with the United States now the epicenter.

As expected, the virus is severely impacting seniors, people with disabilities, poor people and communities of color. From Indigenous nations in New Mexico and Arizona, to Latinx and immigrant communities across the nation, COVID-19 is spreading like wildfire.

The Black community, especially, is being ravaged by COVID-19. We are 12 percent of the U.S. population, yet represent 59% of coronavirus deaths to date.

The numbers are even more stark when one looks at cities or states. Blacks make up 15 percent of the population of my home state of Illinois, yet are 40% of deaths. Blacks are 30 percent of Chicago’s population, but 70% of COVID-19 deaths.

Those scary figures are repeated elsewhere. 70% of COVID-19 deaths in Louisiana are among Blacks, who make up 30 percent of the state’s population. 100 percent of COVID-19 deaths in St. Loius, MO are of Black people.

Ibrahim X. Kendi’s article, Why We Don’t Know Who the Coronavirus Victims Are, calls for racial data.

Kendi’s article, What the Racial Data Show, shows that communities of color are being disproportionately affected by COVID-19.

Kendi’s article, Stop Blaming Black People for Dying of the Coronavirus shows how the reasons Black folks are dying of COVID-19 are due to systemic racism.

Why is COVID-19 hitting the Black community so hard?

It is a result, again, of systemic racism. We are more likely to be poor — Black households have a fraction of the income and wealth of White households, even when the education level is the same. We are far less likely to be in positions of management, meaning that we and immigrants are the ones doing the jobs nobody wants, like picking up trash, cleaning public toilets or cleaning up hospital emergency rooms.

We Black folks are more likely to be essential workers – nurses, attendants, hospital technicians, public transit operators, sanitation workers and first responders. That brings us in contact with others who have been exposed to, or who actually have COVID-19. Most do not have access to personal protective equipment like masks, gloves and gowns, necessary to slow the spread of the disease.

Blacks are also more likely to live in poverty and not have health insurance, so when we get sick, we can’t go to the doctor. Since we receive inferior healthcare compared to Whites, especially in the treatment of diabetes, heart conditions and cancer – three conditions that make COVID-19 more likely to be fatal, we are dying at a much higher rate.

Black people are less likely to have access to information and resources. At first, we didn’t believe that COVID-19 was affecting our community. Then we begin to see that our folks were getting sick, but also saw that we weren’t as likely to be tested, even when we were clearly ill. We realized that we were less likely to have access to gloves, masks, food, sanitizer, cars, etc., so we couldn’t go shopping. We often don’t have computers, smartphones or TVs, meaning we were cut off from information on how to protect ourselves and where to go to get food or what agencies were out there to help. We don’t have jobs we could telework from, so we lost them. We don’t have access to the technology for telemedicine, so we’re not getting healthcare unless we go to the emergency room.

Now, due to hospitals being overwhelmed with COVID-19 admissions, medical rationing is being considered in the treatment of COVID-19. This is especially frightening for disabled and seniors – and Blacks and communities of color. Several states have enacted policies where treatment for COVID-19 patients would be reserved for those with the greatest chance of survival, meaning younger, healthier (read nondisabled) patients. Disabled people who use ventilators at home are terrified that if they are hospitalized, their ventilator will be reallocated, taken and given to someone the hospital feels has a better chance of survival.

Though the Department of Health and Human Services’ Office of Civil Rights has issued guidance against discrimination and bias based on stereotypes of race, age and disability, among others, some of that guidance is not clear, and won’t stop medical personnel steeped in their own biases from doing as they wish.

If anything is a wake-up call for people to see what the results of racial bias, discrimination and disparities in healthcare look like, this COVID-19 pandemic is it. Now, add disability.

Black disabled are scared to death, and rightly so. We see panels and talks on what to do, and how to know your rights in medicine during this pandemic. We see White folks (mostly) and some folks of color on panels when Black activists brought it up, but, as yet, virtually nothing is including, or designed by and for Black folks.

Of the major organizations working on the issue of medical rationing and discrimination, few, if any, have Black staff or Black management, so we’re not thought of. As yet, none have reached out to Black activists and organizations in a meaningful way.

COVID-19 is rampaging through nursing homes, psychiatric hospitals, group homes, institutions, jails, prisons, detention centers, all kinds of congregate settings. We know who are likely to be in such places — Black and Brown folks. We know who are likely to work there — Black and Brown people. Who is collecting data? Who is developing plans to get these folks who’ve tested positive for COVID-19 some kind of medical assistance? What groups are making plans to help these people get safe now?

There are some Black folks doing mutual aid to make sure folks in our community eat, have groceries, get information and get emotional support, but we still don’t have the resources that primarily White disabled folks and organizations have access to.

Still, we can’t wait around for mainstream organizations to include us. We must work ourselves to get the word out even more about how COVID-19 is ravaging the Black community. We must insist that the government keep racial data on who gets it, who dies, at what rate and percentage of the city, county, state and country. We must make sure that disabled aren’t falling victim to medical rationing or mistreatment based on race, age and type of disability. We must insist that our first responders and front line workers are safe.

Black disability organizations, Black community organizations, Black LGBTQIA2S+ organizations, Black medical organizations, Black media, senior groups, justice reform groups, immigrant rights groups, organizers, activists, youth, artists, griots, storytellers — let’s all get together and help each other during this age of COVID-19. Form our own medical rationing panels and do the work. Do our own research on racial disparities in healthcare during COVID-19 and not only get the word out, but work against it. Work to get funding and resources, particularly for disabled folks now. Tell our own stories. In doing this for us, we actually help not only ourselves, but our country.

Will Our “SOFA Scores” Become Self-Fulfilling Prophecies?

Andrew Pulrang, ari ne'eman, bioethics, COVID-19, Disability Rights New York, Hastings Center, healthcare rationing, life-ending decisions, lifeboat ethics, medical discrimination, Our News & Commentary Blog, Sequential Organ Failure Assessment, treatment withdrawal, ventilators, , ,
Photo of Diane Coleman wearing red print top and red sweater, smiling with gray bobbed hair, wire rimmed glasses and a nasal breathing mask
Diane Coleman

I first wrote on March 17th about my fear that the non-invasive ventilator I use everyday might be taken from me if I sought hospital care during this pandemic. The New York “Ventilator Allocation Guidelines”, developed in 2015 to address shortages in a pandemic, specifically state at page 42:

In its consideration to protect vulnerable populations, i.e., ventilator-dependent chronic care patients, the Task Force determined that these individuals are subject to the clinical ventilator allocation protocol only if they arrive at an acute care facility for treatment.

Although a new plan specific to COVID-19 was reportedly being discussed by NY state officials and healthcare providers, I didn’t hear anything more specific, nor anything reassuring related to the concerns of New Yorkers living in the community with ventilators.

About a week after my blog, I was contacted by Disability Rights New York, the NY protection and advocacy organization, asking if I would be one of the complainants in a letter directed to Governor Cuomo about discrimination in the Guidelines. I’m deeply grateful that DRNY undertook this effort and, of course, I agreed to be a complainant. The DRNY letter to Governor Cuomo summarizes the concerns about the 2015 Guidelines as follows:

The specific discriminatory impact of the Guideline is two-fold: eligibility assessments for treatment may inadvertently screen out a disproportionate number of individuals with disabilities, and chronic ventilator users may not seek necessary acute care for fear that they will be assessed ineligible for continued ventilator use and have their personal ventilators re- allocated to “healthier” individuals. [To read the full letter, go here.]

Having received no response to this letter, on April 7, DRNY filed a formal federal complaint described in a press release:

Albany, NY April 7, 2020:  Disability Rights New York (DRNY) has filed a complaint with the United States Department of Health and Human Services (HHS) against the New York State Department of Health (DOH), because there are no policies from DOH to prevent the discriminatory rationing of health care to people with disabilities.

DRNY is requesting that HHS require DOH to immediately take the necessary steps to ensure that New Yorkers with disabilities have equal access to life saving health care.

The 2015 Ventilator Allocation Guidelines can be used to prevent people with disabilities from obtaining ventilators simply because they have underlying conditions that may intensify symptoms and slow recovery. Hospitals and other medical facilities need clear guidance that such actions would be discriminatory, illegal and actionable.

The DRNY OCR complaint directly challenges the alleged objectivity of measures being promoted as a nondiscriminatory approach to allocating scarce resources. Here are some key excerpts from the complaint:

  • [The NY] Task Force states that the Sequential Organ Failure Assessment (“SOFA”) system should be used. A SOFA score, which is used to track a person’s status during an intensive care stay adds points based on clinical measures of function in six key organs and systems: lungs, liver, brain, kidneys, blood clotting, and blood pressure. . . .
  • [I]ndividuals with preexisting conditions are by default going to receive higher (worse) SOFA scores than individuals without disabilities, meaning these individuals with disabilities will be less likely to receive life-saving care. . . .
  • Individuals with disabilities may live day-to-day without any complications, but with a condition that presents abnormalities in one or more of the six key organs and systems measured using SOFA. . . .
  • These individuals would be disadvantaged in a triage situation prior to considering any symptoms that result directly from COVID-19. . . .
  • In its effort to treat everyone equally, the Task Force seemingly accepts the inevitable deaths of chronic ventilator users…
  • NY DOH is discriminatorily preventing chronic ventilator users from seeking acute healthcare services in violation of federal law. . . .

To read the full complaint, which is not limited to discrimination based on chronic use of a ventilator, go here.

Despite the serious discrimination in the NY 2015 Guidelines, it’s important to recognize that many states have guidelines or “crisis standards of care” that include even more discriminatory provisions that have been and are being challenged. As we pointed out in NDY’s April 6 blog, many states have adopted so-called “model” guidelines from the University of Pittsburgh which call for prioritizing individuals based on a combination of two primary factors.

First, as in the NY Guidelines, the person’s Sequential Organ Failure Assessment (SOFA) score is used to determine prognoses for hospital survival.

The second “model” factor used in many states (though not NY) is to characterize a person’s longer-term prognosis: “the presence of conditions in such an advanced state that life expectancy is very limited” (less than 1 year or less than 5 years). Needless to say, the disability community has long-standing critiques of medical predictions of our mortality. (My husband and I have, between the two of us, survived more than 100 years beyond the expiration dates doctors gave our parents when we were children.)

In addition to challenges like DRNY’s OCR complaint, individual disability rights advocates have also raised important questions about the “SOFA score” and other criteria that don’t specifically mention “disability” but clearly discriminate against us in life threatening ways. Two examples that are well worth reading are Ari Ne’eman’s Hastings Center article, When It Comes To Rationing, Disability Rights Law Prohibits More Than Prejudice, and Andrew Pulrang’s Forbes article, The Disability Community Fights Deadly Discrimination Amid The COVID-19 Pandemic.

Obviously, the so-called “objective” SOFA score and life-years approaches are dangerous to many people with disabilities of all ages. COVID-19 has revealed society’s blatant willingness to throw away the lives of older, ill and disabled people.

The “crisis standards of care” that are confronting us are not only relevant to pandemics but to all kinds of disasters and deserve our continued advocacy going forward. By using them to decide who gets life-sustaining treatment, healthcare providers risk turning a tool for predicting mortality into nothing more than a self-fulfilling prophecy.