DREDF Brief: The Illegality of Medical Rationing on the Basis of Disability

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Huge admiration and gratitude to our colleagues at DREDF for issuing a document entitled Preventing Discrimination in the Treatment of COVID-19 Patients: The Illegality of Medical Rationing on the Basis of Disability. It’s directed to “lawmakers and providers of health care, education, transportation, housing, and other critical services.”

The 2nd opening paragraph explains:

In the face of a public health crisis, where projections show that the need for intensive medical care for individuals made ill by COVID-19 may far exceed the resources of the U.S. healthcare system, the inclination of healthcare providers may be to take “rationing” measures or rather, make decisions about who should or should not receive care and, if they do, what level of care. While COVID-19 poses a serious challenge to the capacity and resources of our healthcare system, DREDF reminds healthcare providers that longstanding federal and state nondiscrimination laws, such as the Americans with Disabilities Act (“ADA”), Section 504 of the Rehabilitation Act, Section 1557 of the Affordable Care Act (“ACA”), the California Unruh Civil Rights Act, and California Government Code Section 11135, prohibit such rationing measures when they result in the denial of care on the basis of disability to an individual who would benefit from it.

The first major section of the brief provides important legal analysis and precedent. The second major section includes four important subparts:

  • A.  Providers Cannot Deny or Limit Care to Disabled People Because of Their Disability
  • B.  Providers Cannot Deny or Limit Care Based on the Fact That A Disabled Person May Have A Lower Likelihood of Survival or Require More Intensive Care
  • C.  Providers Must Not Rely on Quality of Life Judgments When Deciding Whether to Deny or Limit COVID-19 Treatment
  • D.  Providers Cannot Deny or Limit Treatment to A Person with a Disability Because They May Require Reasonable Accommodations

For those of us who may have a lower likelihood of survival or require greater resources to survive, Section [II] B. is most directly relevant:

In enacting the ADA and subsequent civil rights legislation specific to the health care setting, Congress affirmed that principles of equality are more important than the efficiency of systems. Despite the COVID-19 crisis, this principle remains appropriate and the law of the land.

While a healthcare provider does not have a duty to provide treatment when there is objectively no chance of it succeeding (i.e., it is “absolutely futile”[42]), they cannot exclude from treatment people whose underlying disabilities mean that they have a lower probability of survival or those who, because of their disabilities, may require a higher level of care.

Prioritizing people without pre-existing conditions, who may have a higher probability of survival, would be inappropriate and constitute illegal disability discrimination. While providers are not obligated to deliver objectively futile care, they cannot discriminate against disabled people who could benefit from treatment.

Furthermore, while healthcare providers may prioritize people with a greater urgency of need, they cannot give lower relative priority to individuals whose anticipated intensity of care or resources exceeds that of other current or anticipated patients. When dealing with patients with a similar level of treatment urgency, providers should maintain their existing practice of “first come, first serve,” rather than prioritizing people who would require the fewest resources.

To read the DREDF brief in full, go here. Thank you to all at DREDF for issuing such a rapid response to this crisis!

 

COVID-19 Reveals A Deadly Failure of Priorities

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With the looming and imminent threat of insufficient hospital and ICU beds, medical equipment and healthcare staff, I found myself recalling an old favorite TV show from my college years. MASH (mobile army surgical hospital) created both comedy and drama around the reality of having three operating room beds in an army tent on the war front in South Korea. Triage was part of the routine, determining who gets on the operating table first, and who gets the best surgeon (Hawkeye) of the four in the unit. Now and then, when the frontlines had faced a heavy attack and massive casualties poured in, the plot explicitly focused on triage situations. Hawkeye always struggled to do the right thing.

COVID-19 is leading to more and more news reports on the fast approaching reality that the demand for hospital beds and ventilators will exceed supply. New York’s Governor Cuomo was carried on MSNBC yesterday and today, discussing this crisis.

A few years ago, NDY’s research analyst, Stephen Drake (aka my husband, now retired), reviewed New York’s Ventilator Allocation Guidelines, released in 2015. The pandemic guidelines operate on the principles of triage.

The primary goal of the Guidelines is to save the most lives in an influenza pandemic where there are a limited number of available ventilators. To accomplish this goal, patients for whom ventilator therapy would most likely be lifesaving are prioritized. The Guidelines define survival by examining a patient’s short-term likelihood of surviving the acute medical episode and not by focusing on whether the patient may survive a given illness or disease in the longterm (e.g., years after the pandemic). Patients with the highest probability of mortality without medical intervention, along with patients with the smallest probability of mortality with medical intervention, have the lowest level of access to ventilator therapy. Thus, patients who are most likely to survive without the ventilator, together with patients who will most likely survive with ventilator therapy, increase the overall number of survivors.

Within the hospital environment, ventilators would be allocated and, if necessary, re-allocated as the pandemic proceeds. Importantly, the guidelines state:

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.

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

It would be helpful if disability advocates determine whether similar guidelines exist in their state and, specifically, what they say, in order to inform their communities and ensure that individuals who use breathing support can make the best decisions for themselves if they get sick. (In my opinion, I should not go to an acute care facility if I get sick.)

It’s hard to disagree with the principle of maximizing the number of pandemic survivors but, nonetheless, a few things need to be said.

First, COVID-19 is not the only cause of the shortages we face. I’m on a New York Medicaid advocacy listserv in which one member quoted Judy Wessler, former head of the NY Commission on the Public’s Health System:

Let’s Remember That Since At Least 2006 There Has Been A Tremendous Push In New York State To Close Hospital Beds And Consolidate Hospitals. We Used To Have 4 Beds Per 1,000 And Now We Have Something Like 2.8 Beds Per 1,000. So Now We Have To Play Catch-Up.

Wessler was also quoted in a NY Post article entitled New York has thrown away 20,000 hospital beds, complicating coronavirus fight.

How many states have taken similar steps as they offload their healthcare responsibilities, letting managed care take over and allowing that industry to suck up around 20% of our healthcare dollars and put profits over people? So our shortage of beds and ventilators is not just caused by COVID-19 but also by unacceptable political and fiscal decisions made largely under the public radar.

Second, how will the idealized triage principles be implemented in practice? The NY guidelines call for a triage committee. It will not be the attending doctor. I don’t think we can count on the committee being composed only of doctors like the caring Hawkeye Pierce. And there will be a time crunch. The situation invites biases like ableism and racism to creep in.

Third, we already know that healthcare resources are denied based on disability bias under futility policies, denial of transplants and other practices reported in the National Council on Disability’s bioethics series. In this crisis, further devaluation of our lives is a real threat.

Not Dead Yet was among many organizations that signed onto a National Disability Rights Call To Action on March 3rd. We are all are trying to impress upon policymakers that our lives are valuable. We are not worth-less and we are not expendable!

This pandemic resource shortage will touch people who previously felt safe from healthcare rationing. How we treat people in need is a reflection of the priorities of the policymakers we elect. All too often, the voices of people with disabilities and other justice communities have been drowned out. Perhaps the unnecessary loss of life from this pandemic due to healthcare capacity limits will cause others to join with us in re-evaluating the priorities that got us here.

 

 

 

Disability Activists Are Strongly Opposing Maryland Assisted Suicide Bill

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Disability rights activists are working to oppose Maryland’s assisted suicide bill, SB 701, on several fronts.

They are active participants in the broad spectrum coalition called Maryland Against Physician Assisted Suicide. The coalition has been preparing for the first hearing on the bill, scheduled for Friday, February 28 beginning at 12:00 noon.

On February 17, an article by Katie Collins-Ihrke, Executive Director of Accessible Resources for Independence, was published in the Frederick News-Post entitled Marylanders need health care, not assisted suicide:

“End-of-life option” bills are consistently marketed to the public as applying only to people who are expected to die within six months, not to people with chronic illnesses or disabilities. But buyer, beware! Apart from the fact there is no way to prevent mistakes in diagnosis, even when more than one doctor is involved, the term “terminal illness” can be surprisingly elastic. An Oregon health official has written that conditions can be deemed terminal even if there is lifesaving treatment, but the person is uninsured or cannot afford it. This includes diabetes and other serious conditions which can be medically managed.

A press conference that will precede the Senate committee hearing will feature three speakers with disabilities:

  • Sheryl Grossman, Community Living Advocate at National Council on Independent Living
  • Sherman Gillums Jr., Chief Strategy & Advocacy Officer at American Veterans
  • Edward Willard, former Director of Advocacy Supports at the Developmental Disabilities Administration

NDY’s Anita Cameron has traveled to Annapolis to testify alongside these and other strong representatives of the disability community. Her powerful testimony is below.

Not Dead Yet, the Resistance

Anita Cameron’s Testimony
Opposing Maryland SB 701
Friday, February 28, 2020

Committee Chair, and Members. Good afternoon. Thank you very much for allowing me to offer my thoughts to you today.

My name is Anita Cameron. I am a 54-year-old with multiple disabilities, two of which are degenerative, and one which will take my life. I am testifying in opposition to Senate Bill 701, the End of Life Option Act.

This bill is a physician assisted suicide bill. It is important to be up front and honest about what this is. Couching it in pretty language is disingenuous at best, and dangerous, at worst.

I am Director of Minority Outreach for Not Dead Yet, a national disability rights organization opposed to physician assisted suicide and euthanasia as deadly forms of discrimination against people with disabilities. I live in Rochester, New York, but work with people of color and marginalized communities around the nation.

My primary reason for opposition to this bill and others like it is that disabled BIPOC (Black, Indigenous and People Of Color) are at particular risk of being harmed by it.

Our health care system is inherently racist. Studies show that Blacks and people of color receive inferior medical treatment compared to Whites. We are less likely to receive adequate treatment for heart conditions, diabetes, cancer and chronic pain. Oregon has made it clear that a person whose condition becomes terminal because they don’t receive healthcare they need would be eligible for assisted suicide.

The lives of people with disabilities are largely devalued by doctors and society, in general, particularly if we are living in poverty. The lives of BIPOC with disabilities are even more devalued due to racism and stereotypes about our communities.

Although assisted suicide requests in Oregon (which this bill and others are modeled on) are lower among Blacks and people of color, that doesn’t mean that this won’t change in more diverse areas, especially as healthcare faces cuts and assisted suicide becomes more acceptable due to well-funded efforts of groups like Compassion and Choices. In fact, though the numbers are small and increases are incremental, there has already been a rise in the number of assisted suicide requests from people of color in California and Colorado since their laws went into effect.

Another reason for my opposition is that doctors would be the gatekeepers of people’s lives under this bill, and can decide for you about your quality of life. Anyone can request assisted suicide, but a doctor decides who gets suicide prevention and who gets suicide assistance. And since the top five reasons people request assisted suicide in Oregon are related to disability, like feelings of being a burden on others, it’s clear that doctors see disability concerns as good reasons to prescribe lethal drugs.

Further, doctors often make mistakes about whether a person is terminal or not. In June, 2009, while living in Washington state, my mother was determined to be in the final stages of Chronic Obstructive Pulmonary Disease and placed in hospice. Two months later, I was told that her body had begun the process of dying. My mother wanted to go home to Colorado to die, so the arrangements were made. A funny thing happened, though. Once she got there, her health began to improve! Over ten years later, she is still alive, lives in her own home in the community and is reasonably active.

Because of the racist nature of our health care system and the tendency of doctors to devalue the lives of disabled and people of color, assisted suicide has no place in Maryland’s healthcare system.

Please vote NO on SB 701.

 

Mike Reynolds: New Hampshire Bill Promotes Assisted Suicide for “Embarrassing Indignities”

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Published in today’s Union Leader —

Your Turn, NH – Mike Reynolds:

FOR OVER two decades the independent people of New Hampshire have been solidly against assisted suicide. Since 1996, the New Hampshire legislature has studied or voted down this proposed law so many times it takes two hands to count them all.

Assisted suicide laws are the most egregious form of discrimination against severely disabled and “terminally ill” people. How can we call suicide a public health crisis for most people while facilitating the suicides of older, ill and disabled people? Should we not be doing everything we can to support such persons in having the best possible health care and home care so they have quality of life for however long they have?

With the experience of the laws in Oregon as a guide, the question of assisted suicide becomes, quite frankly, incompatible with New Hampshire values. [The] state motto, “Live Free or Die,” means we reject government interference in our daily lives. Oregon state government’s promotion of an assisted suicide program administered by the health care system means pushing people towards assisted suicide through denials of coverage for treatment and in-home care, covering up abuses, and ignoring incorrect prognoses that lead people to think they are dying when they are not.

The numerous flaws in HB 1659, the “Death with Dignity Act,” are so obvious that New Hampshire should reject this absurd legislation again. With HB 1659, the government would be promoting suicide for what in the preamble it calls “mental anguish over the prospect of losing control and independence, and/or embarrassing indignities.” This is a direct attack on the thousands of disabled Granite Staters who maintain their independence and dignity by directing aides to perform their care.

While assisted suicide proponents depict assisted suicide as only a last resort for people with advanced cancer, Oregon’s doctors have written lethal prescriptions for individuals whose qualifying medical diagnosis for assisted suicide was reported as chronic conditions like diabetes, gastrointestinal disease, arthritis, arteritis, sclerosis, stenosis, kidney failure, and musculoskeletal systems disorders.

As in Oregon, under bill HB1659 a person can be considered “terminal” and therefore eligible for assisted suicide simply by refusing medication they need. By that definition, people who have epilepsy, ongoing infections and other illnesses that can be managed with medication can qualify. This legislation is not limited in scope and is actually far more dangerous than the proponents want to admit.

A report released in May 2018 by the Centers for Disease Control and Prevention reveals that from 1999-2010, suicide among those aged 35-64 increased 49% in Oregon as compared to a 28% increase nationally. In Oregon, the rate of suicide is 21 percent above the national average and their rates of teen suicide have even been higher. There is a clear problem of suicide contagion.

While the bill proponents claim there are safeguards, there is absolutely no oversight once the medication is picked up from the pharmacy. Under the Oregon law and the proposed legislation, a “friend” can encourage an elder to make the assisted suicide request (“just in case”), sign the forms as a witness, pick up the prescription, and even administer the drug (since no independent witness is required). To be perfectly clear, the current bill being debated only discusses “self-administration” of the lethal drugs in the bill’s preamble; nowhere in the substantive provisions is the word mentioned.

This law is also vague about who can access it, but it would be far easier for an eighteen year old with a serious medical condition that could be controlled with medication to access this law than it would for the same eighteen-year-old to access cigarettes or alcohol.

There is nothing compassionate or caring in this bill. Instead it could serve as a template to encourage and even pressure the most vulnerable in our society, our older and critically ill populations, to hasten their deaths. And by giving legal immunity to everyone involved, it creates a legal framework where elder abuse (up to and including homicide), which nationally impacts about 10% of elders, gets a free pass. Please contact your legislators and have them oppose this very dangerous legislation.

Mike Reynolds is a member of Not Dead Yet, a disability rights group opposed to assisted suicide.

NDY’s Anita Cameron Joins NH Disability Advocates To Oppose Assisted Suicide Bill

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Not Dead Yet, the Resistance
Press Release

Contacts:  John Kelly 617-952-3302; Anita Cameron 585-259-8746

(Manchester, NH) – Not Dead Yet’s director of minority outreach, Anita Cameron, will join disability rights leaders from the Brain Injury Association of New Hampshire, ABLE New Hampshire, Disability Rights Center and other state and local groups to oppose a New Hampshire assisted suicide bill, HB 1659, being heard before the House Judiciary Committee Wednesday, February 12 at 1:00 p.m.

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

Cameron was among scores of disability activists arrested during national protests by disabled people to save Medicaid and the Affordable Care Act in 2017. Among other issues, Cameron will share the story of her mother’s mistaken “terminal” diagnosis in her testimony against the NH assisted suicide bill.

“In June, 2009, while living in Washington state, my mother was determined to be in the final stages of Chronic Obstructive Pulmonary Disease and placed in hospice. Two months later, I was told that her body had begun the process of dying. My mother wanted to go home to Colorado to die, so the arrangements were made. Once she got there, her health began to improve! Over ten years later, she is still alive, lives in her own home in the community and is reasonably active.”

John Kelly, director of Second Thoughts and NDY’s New England regional director, will submit written testimony. “We renounce the implication in this bill that some people are ‘better dead than disabled,’” he states. “Either everyone has equal amounts of dignity or we no longer live in a society where everyone is equal under the law.”

The bill’s purpose statement focuses on disability concerns as a reason for implementing assisted suicide: “Many terminally ill patients experience severe, unrelenting suffering, mental anguish over the prospect of losing control and independence, and/or embarrassing indignities for long periods while they are waiting to die . . ..”

NDY’s president and ceo will also submit written testimony. “As a severely disabled person who depends on life-sustaining treatment, the Statement of Purpose in HB 1659 makes it crystal clear that someone like me would be viewed as sitting right in the bill’s crosshairs.”