Second Thoughts Press Release On Continuing Danger of Massachusetts Assisted Suicide Bill

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Second Thoughts Massachusetts Disability Rights Advocates Against Assisted Suicide

For Immediate Release:                                  June 2, 2020
Contact: John B. Kelly 617-952-3302, SecondThoughtsKelly@Gmail.com, @2ndThoughtsMA

Bill Legalizing Assisted Suicide Remains Dangerous, Targets the Vulnerable

Second Thoughts Massachusetts issues the following statement in opposition to the favorable report given by the state legislature’s Joint Committee on Public Health to Bill S.2745/H.4782, legislation that would legalize assisted suicide in Massachusetts.

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John Kelly

“I’m amazed and disappointed that as a deadly virus is stalking and killing older, ill, and disabled people, and systemic racism and healthcare disparities lead to disproportionate deaths of Black people, the Public Health Committee decides now would be the time to further endanger the same groups of people. Assisted suicide legislation sends a message of ‘better dead than disabled’ while completely immunizing doctors, heirs, and stressed caregivers who can encourage or even engineer a person’s death without fear of prosecution,” said Second Thoughts Director John B. Kelly.

“It is wrong to move a bill at a time when those who will be harmed are on lockdown due to COVID-19, depriving us of the opportunity to fully address in person this threat to our health and well-being,” Kelly continued.

Anita Cameron, Director of Minority Outreach for Not Dead Yet, said “I am utterly disgusted that as COVID-19 ravages the Black community due to the results of racial disparities in healthcare, the Public Health Committee has decided to try to slip this bill through. COVID-19 has disproportionately affected the Black community; we are dying at frightening rates. This bill promotes death over life, and by pushing it, the legislature is sending a clear message to us Blacks that we are burdens and should die by suicide.”

Diane Coleman, Not Dead Yet’s President and CEO, said “The doctors who decide who’s eligible for assisted suicide are the same doctors who have been perfectly comfortable putting older, ill and disabled people at the back of the line for receiving COVID-19 treatments. Why should anyone think they will move us to the front of the line for other life-saving treatments if assisted suicide is legal?”

Five months ago, Suffolk Superior court Judge Mary K. Ames in Kligler, et al. v. Healey, et al. ruled against any state constitutional right for assisted suicide, holding that at the point of a patient ingesting the lethal drugs, they would be vulnerable to improper persuasion. “In such a situation, there is a greater risk that temporary anger, depression, a misunderstanding of one’s prognosis, ignorance of alternatives, financial considerations, strain on family members or significant others, or improper persuasion may impact the decision.”

“The Massachusetts legislature should heed this warning by the court. If assisted suicide is legal, some people’s lives will be ended without their consent, through insurance denials, mistakes, and abuse. No safeguards have ever been enacted, or even proposed, that can prevent this outcome which can never be undone once it is put into effect,” Kelly concluded.

Second Thoughts Massachusetts is a group of disability rights advocates opposed to the legalization of assisted suicide. We testified against the bill [formerly S.1208] at the hearing in June of 2019 and held a well-attended legislative briefing a few days after. It is the state affiliate of Not Dead Yet, the national grassroots group opposed to assisted suicide and life and death discrimination against disabled people.

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NDY Files Comment Against Proposed CMS Rule Changes That Would Put More People In Nursing “Homes”

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Thanks to the Partnership for Inclusive Disaster Strategies for alerting disability advocates to proposed federal rule changes that would make it easier to put disabled people of all ages into nursing “homes” and other facilities, as well as make it harder for them to move back out to the community. The deadline for comments is May 20 at 11:59 p.m.

The National Disability Rights Network has provided a link to a pre-populated comment that individuals or groups can edit and submit. It’s quick and easy. A direct link to CMS for comments on this proposed rule change is here.

NDY’s comment is below, with most of the text borrowed from the NDRN template comment, which explains the rule changes.

Public Comment By Not Dead Yet Re Proposed Medicaid PASRR Changes

Not Dead Yet is a national grassroots disability rights organization led by disabled people, advocating for nondiscrimination in health care. We support people with disabilities’ equal rights to life-sustaining treatment. We oppose assisted suicide laws as a deadly form of discrimination. We support people with disabilities’ right to live in the community and not be forced into nursing homes and other institutions.

We are writing to comment on CMS’ proposed changes to Preadmission Screening and Resident Review (PASRR). PASRR is an important tool to keep people with disabilities from being unnecessarily placed in nursing facilities and help them transition back to the community. Having strong PASRR rules is especially important now, with the rampant outbreaks and deaths from COVID-19 happening in nursing facilities around the country.

Forcing older, ill and disabled people into nursing facilities is always a civil rights violation, always a threat to an individual’s health and well being, exposing them to well documented risks of abuse and neglect. But because of COVID-19, now more than ever it becomes a death sentence.

We oppose the proposed changes to the PASRR rule that would make it easier for people to be admitted to nursing facilities and harder for people in nursing facilities to return to the community. First, the proposed rule would allow states to avoid screening and evaluation for many people before admitting them to a nursing facility, leading to admission of people who could instead be served in the community. The rule also would limit the services that nursing facilities have to provide once someone is admitted. Without all of the services they need, people will lose skills and not learn new skills that would make it easier for them to transition back to their communities. Finally, the rule would allow states to stop working on the transition of a person back to the community if the person does not have a community option currently available, even if everyone agrees the person could be best served in the community. The rule should instead require the person’s case manager to continue to work to identify community options.

All of these changes will mean more people will be admitted to or remain stuck in nursing facilities who don’t need to be. This not only violates the right of people with disabilities to community services, but is especially dangerous during this COVID-19 pandemic.

We ask you to please substantially revise the proposed rule to remove any changes that would make it easier for people with disabilities to be admitted to or to remain in nursing homes unnecessarily. We would also like an opportunity to comment on the new rule once revised. The health and safety of people with disabilities of all ages around the country depends on it.

W. Carol Cleigh letter: Hasty Re-Opening Will “Sacrifice the Weak for the Wealthy”

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NDY member Carol Cleigh’s timely and pointed letter below will appear in her local North Carolina paper, Clay County Progress:

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W. Carol Cleigh

For those who are advocating for lifting of restrictions due to Covid-19 before or without considering the WHO criteria for safely lifting those restrictions, please understand that you’re asking for a devil’s bargain. What you, and so many others, are actually doing is to say that lives, particularly the lives of elder, disabled and chronically ill people, are less important than money. This is literally, the sacrifice of the weak for the wealthy.

You can dress up your ‘need’ to sacrifice our lives however you want. Yes, people, especially the most economically disadvantaged, need to work. But do they need to work more than we need to live? Yes, people need social interaction. But do you really need social interaction more than we need to live? Yes, the economy must be reopened eventually. But can’t we concentrate on actually meeting at least a few of the WHO criteria rather than ignoring them?

Understand that we’re not talking about a few people. We’re talking about numbers similar to  the T4 program’s extermination of ill and disabled people during the Holocaust. Even White House estimates put the cost of premature reopening at more than 230,000 human beings. Not all of whom will be old, ill and/or disabled. Many will be health care workers. Some will be young. Some will have been healthy before becoming ill. Georgia has already had a surge in cases.

Perhaps most importantly in all of this is the question of who we want to be as a people. I’ve even seen advocates for this trying to dress up their devil’s bargain in Jesus’ clothing. Stop it! Quit lying to yourself. If you feel that sacrificing hundreds of thousands of human lives to expediency is something you’d like to see happen, know that you are very definitely not on the side of Jesus. If you want to advocate for those whom Jesus loves, advocate for meeting the WHO criteria, not ignoring it. Advocate for life.

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

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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

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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/