Second Thoughts CT Leader Cathy Ludlum Interviewed On Opposing Assisted Suicide

Head and shoulders photo of Cathy Ludlum, a woman in mid 50s with glasses and wheelchair headrest.

Second Thoughts CT leader Cathy Ludlum on opposing assisted suicide: “there is no safeguard that can counter the social stigma of needing help with intimate care.”

By John B. Kelly

On January 14, Second Thoughts CT leader Cathy Ludlum joined WPLR host John Voket on his show “For the People” to explain why legalized assisted suicide is simply too dangerous to implement. The full transcript is here.

In the 15-minute segment (beginning at 37:20), Cathy meets Voket where he is, and agrees that on its surface, many people would think it’s “a good idea to put the choice of when and how one dies into the hands of the individual.”

But when you start presenting people with other things to think about, a lot of times people may support the theory, but then the implementation worries them and they cannot support it as they had in the past. In other words, talking to one of us or all of us often gives them “second thoughts.” So that’s where the name of our group came from and we’ve been active and mobilized since 2013, as I said.

Cathy pulls the conversation from a narrow focus on individual autonomy to the realities of a society prejudiced against disabled people, who “already have challenges whenever we go to the hospital or we try to get healthcare.”

What those of us in the disability community are trying to get across is, there is no safeguard that can counter the social stigma of needing help with intimate care, of having to rely on others for support, or of seeing your caregivers tired and wondering if the world would be better off without you.

Indeed, Oregon doctors reported that in 2019 “feeling like a burden” motivated more than half of the patients who were prescribed a lethal overdose. Cathy doesn’t get into the details, but the other top four “end-of-life concerns” also relate to psychological distress about the disabling aspects of serious illness, not physical pain as proponents insist.

There is also no possible safeguard to prevent coercion:

with no independent person there at the time of death, how can we ever know that it was the individual’s choice instead of a person who has been threatened or coerced or feels that they have no other choice than to end their own life?

Whenever disabled people point out the dangers of assisted suicide, journalists and legislators routinely ask, as Voket does, whether “legislation can be crafted to carve out the disability community that is so significantly concerned.”

Cathy patiently explains that the legislation “changes the way healthcare is structured” by codifying in law a medical practice that produces death as a beneficial outcome. “And so it changes the doctor-patient relationship. It changes the way insurance and financial reimbursement and such work.”

If some people are understood in state law and medical practice to be literally “better off dead” than alive, “it involves changing the whole way we look at life and death.” I would add that legalized assisted suicide logically leads to doctors and people in a patient’s orbit recommending, persuading, and instigating that death. We have the examples of Kathryn Judson, who overheard her husband’s doctor telling him that he should commit suicide to spare her the trouble of caring for him, or Kate Cheney’s family that was intent on her death.

There is no way to protect disabled people because

there is a tendency in the medical system already to think of us as terminally ill even though we may all live on for years with the right support. I understand the need to try and create some middle ground, and I wish we could do that, but I don’t see a way of making that happen.

It’s long been known that doctors and medical personnel underestimate the “quality of life” experienced by disabled people, who love our lives as much as nondisabled people.

Voket asks whether the legislation has gone terribly wrong in other places, and Cathy refers to a list of abuses and complications compiled by the Disability Rights Education and Defense Fund (DREDF). Cathy mentions without name the case of Michael Freeland, “with a 40-year history of suicide attempts being given the drug.”

It’s also been true that, once established as a benefit, assisted suicide (or in some other countries, straight up euthanasia) gets extended to more and more conditions, such as non-terminal conditions like diabetes and multiple sclerosis in Oregon, and depression and feeling “tired of life” in other countries. People can become “terminal” because their insurance denies coverage to and people can’t afford necessary treatment, or they stop their life-sustaining treatment.

Voket concludes the interview by asking Cathy if Second Thoughts CT could support “the other potential proposals involving end-of-life legislation that might hit the State House floor this session?”

Cathy affirms Second Thoughts’ support for “palliative care and anything that would support a person as they are nearing the end of life,” and of “good suicide prevention strategies.”

Our question is, how can the State of Connecticut be promoting suicide prevention while possibly at the same time promoting suicide assistance? And the difference is what label you wear, whether you are deemed as terminally ill, elderly, having a “complete” life — which is something they use in other places, or “disabled.”

Cathy loves her life and is upbeat about how supports can meet the challenges of disability. As she stated at the beginning of the interview, the problem isn’t disability but the deadly prejudice against it. And the answer is to remove that prejudice, not the people it targets for death.

Second Thoughts Connecticut: https://www.facebook.com/SecondThoughtsConnecticut

Radio Show Broadcast, beginning at 37:20: https://audioboom.com/posts/7772188-family-empowerment-now-stepping-forward-cfgnh-second-thoughts-ct

 

 

 

 

 

 

 

30 Organizations Urge HHS/OCR To Take New Steps To Prevent Healthcare Discrimination

Not Dead Yet, with partners the Disability Rights Education & Defense Fund and the Patients Rights Action Fund, have assembled a total of 30 disability rights and racial justice organizations to support further regulatory action by the U.S. Department of Health and Human Services Office for Civil Rights. Specifically, the groups are urging the formal HHS release of the recently issued but not yet published Request for Information (RFI) on “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities” (PDF) (RIN: 0945-AA15).

The RFI details and seeks public input concerning disability discrimination in a number of healthcare areas, including life-sustaining care, organ transplant eligibility, Crisis Standards of Care, suicide prevention programs and services, the child welfare system, health care value assessment methodologies (e.g. QALYs), and auxiliary aids and accessible medical equipment.

In the introduction to the RFI, the Office for Civil Rights noted having received reports of discrimination from many sources, making particular note of the National Council on Disability’s Bioethics Series:

OCR has received reports of discriminatory practices from researchers, advocates, organizations of persons with disabilities, and through its own work. The National Council on Disability (“NCD”), an independent Federal agency, has issued studies examining disability discrimination in health and human services and has recommended that OCR provide guidance, regulations, and increased enforcement with respect to multiple aspects of these issues as they relate to health and human services programs and activities funded by the Department.

The advocates’ letter urging formal publication of the RFI is below (and on a separate page here). Interested persons can support this effort by emailing messages to Secretary@hhs.gov.

U.S. Department of Health & Human Services
Office of the Secretary
200 Independence Avenue, S.W.
Washington, D.C. 20201

February 11, 2021

Re: Support for “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities” (RIN: 0945-AA15)

Dear Acting Secretary Cochran:

As the new administration undertakes its important role of regulatory review, we, the undersigned, write in full support of HHS’s continuation of regulatory action in the form of proposed rulemaking on the important issues related to disability nondiscrimination and Section 504 of the Rehabilitation Act raised in the recently issued Request for Information (RFI), “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities”(RIN:0945-AA15). In addition, we urge HHS to release guidance rapidly on Crisis Standards of Care, as explained below.

Even though much has been accomplished in the near 50 years of the Rehabilitation Act, and having just celebrated the 30th anniversary of the Americans with Disabilities Act, we all recognize that much is left to be done. The COVID-19 pandemic has only underscored and further uncovered discriminatory actions and attitudes in the provision of healthcare against Black and Indigenous people, other people of color, elders, and people with disabilities. With regard to the latter, as recent reports from the National Council on Disability show, people with disabilities still face significant disparities and obstacles to access in healthcare. The issues addressed in this RFI look to root out the common thread they all share: too many medical professionals see life with a disability as less worth living and less worthy of care, sometimes so much less so that they view death as the correct course. Continuing to allow those sentiments to influence the provision or denial of healthcare in any area addressed by these Section 504 issues is a threat to the integrity and equity of all healthcare, particularly because anyone at anytime can acquire or age into a disability.

The RFI addresses important protections for people with disabilities such as life-sustaining care, including in times of crisis, such as during natural disasters and pandemics, and the equitable distribution of scarce medical resources in organ transplants. Since HHS has been playing a critical role in investigating and addressing civil rights complaints regarding Crisis Standards of Care across the country, you are no strangers to the fact that triage teams are deprioritizing care to patients with disabilities based on prognoses after COVID survival; and some payers are using subjective “quality of life” metrics such as QALYs as well as “life cycle considerations” which are both subjective and presumptive, not clinically based, and always cut against older adults. Because these discriminatory Crisis Standards of Care continue to be promulgated by states and the lives of people with disabilities are currently at risk, we urge both immediate guidance and long-term, enforceable regulation on this issue. The RFI ensures the accessibility of suicide prevention programs and services, auxiliary communication aids, and support personnel. It also addresses the issue of potentially mandatory accessible medical device standards—an ongoing healthcare access priority for the community. The RFI also speaks to equality in social services so that people with disabilities cannot be summarily barred from custody of their own children or from consideration to adopt; it also solicits comment on the important issue of the Olmstead obligations of child welfare entities to ensure children with disabilities are served in the most integrated setting appropriate. Thus, an update as proposed in the RFI to the Section 504 regulations could not be more timely.

In light of these considerations and your Department’s concern for and enforcement authority over the civil rights of people with disabilities and all people in healthcare, we strongly support continued regulatory action in the form of proposed rulemaking as outlined in “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities” (RIN: 0945-AA15).

Thank you very much for your time and consideration.

Sincerely,

American Association of People with Disabilities (AAPD)
Maria Town
President & CEO

American Civil Liberties Union (ACLU)
Ronald L. Newman
National Political Director

American Council of the Blind
Clark Rachfal
Director of Advocacy and Governmental Affairs

Association of Programs for Rural Independent Living
Billy Altom
Executive Director

Autistic Self Advocacy Network (ASAN)
Julia Bascom
Executive Director

Autistic Women & Nonbinary Network
Sharon daVanport
Executive Director

Center for Disability Rights, Inc. (CDR)
L. Dara Baldwin, MPA
Director of National Policy

Center for Public Representation
Cathy Constanzo
Executive Director

Center for Law and Social Policy (CLASP)

Disability Rights Education and Defense Fund (DREDF)
Susan Henderson
Executive Director

Justice in Aging
Kevin Prindiville
Executive Director

League of United Latin American Citizens (LULAC)
Sindy M. Benavides
Chief Executive Officer

Little People of America
Mark Povinelli
President

Minnesota Alliance for Ethical Healthcare
Nancy Utoft
Board Chair

National Association of Councils on Developmental Disabilities
Donna Meltzer
CEO

National Association of the Deaf
Howard A. Rosenblum, Esq.
Chief Executive Officer & Director of Legal Services

National Coalition for Mental Health Recovery
Daniel Fisher
President

National Council on Independent Living (NCIL)
Kelly Buckland
Executive Director

National Disability Rights Network
Curtis L. Decker
Executive Director

National Federation of the Blind
Mark Riccobono
President

National Organization of Nurses with Disabilities
Michelle Kephart
Executive Director

Not Dead Yet
Diane Coleman
President & CEO

Paralyzed Veterans of America
Susan Prokop
National Advocacy Director

Partnership to Improve Patient Care (PIPC)
Tony Coelho
Chairman

Patients’ Rights Action Fund (PRAF)
Matt Vallière
Executive Director

Patients Rights Council
Rita L. Marker, JD
Executive Director

Physicians for Compassionate Care Education Foundation
Dr. Kenneth R. Stevens, Jr., MD
President

Salvador E. Alvarez Institute for Non-Violence
Serena Alvarez, Esq.
Executive Director

TASH
Michael Brogioli
Executive Director

United Spinal Association
Vincenzo Piscopo
CEO/President

World Institute on Disability
Marcie Roth
Executive Director & CEO

CC:

Susan Rice
Domestic Policy Council
White House

Robinsue Frohboese
Acting Director
Office for Civil Rights
US Dept. of Health and Human Services

Alison Barkoff
Acting Administrator and Assistant Secretary for Aging
Principal Deputy Administrator
Administration for Community Living

1 https://www.hhs.gov/sites/default/files/504-rfi.pdf
2 https://ncd.gov/publications/2019/bioethics-report-series

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Diane Coleman: What the COVID Crisis Tells Us About the Dangers of Assisted Suicide

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

The COVID pandemic revealed that people with disabilities have been denied treatment for the virus due to their disabilities and pervasive biases about their “quality of life”. This denial of care raises the very real issue that persons with disabilities are and will face similar discrimination under assisted suicide laws.

Healthcare providers are the gatekeepers of assisted suicide in states where it’s legal, rendering a terminal prognosis, certifying lack of coercion, etc. Assisted suicide laws immunize providers (and other persons) from criminal and civil liability in the death of an individual. Careful examination of the language in these laws reveals the absence of meaningful safeguards. Nevertheless, public acceptance has largely depended on trust in medical providers’ willingness and ability to protect very ill individuals from mistakes, coercion and abuses, up to and including negligent or intentional homicide. The pandemic has demonstrated that such trust is misplaced.

Media Coverage of Discriminatory Denial of COVID Treatment

A recent article in The Hill (Is Oregon’s physician-assisted suicide law affecting disabled COVID-19 patients?,12/25/2020) considered the possibility of a link between “Oregon’s decades-old physician-assisted suicide (PAS) law and recent efforts to deny life-saving care to COVID-19 patients with disabilities.”

National Public Radio reporter Joe Shapiro also covered examples of COVID treatment denials involving people with disabilities in Oregon: Oregon Hospitals Didn’t Have Shortages. So Why Were Disabled People Denied Care?, (12/21/2020) and As Hospitals Fear Being Overwhelmed By COVID-19, Do The Disabled Get The Same Access? (12/14/20). The latter article summarized a Harvard researcher:

A “vast majority” of doctors say people with a significant disability have a worse quality of life, according to a recent poll by Dr. Lisa Iezzoni, a Harvard Medical School professor and physician who studies health care disparities for people with disabilities. Her research […was] published in the journal Health Affairs in early 2021.

Unfortunately, discriminatory denial of COVID treatment is not unique to Oregon.

COVID Crisis Standards of Care Discriminate Unlawfully

In response to concerns about shortages of ventilators and other resources to treat COVID patients, many states, local authorities and medical facilities developed policies for allocating resources if there were shortages. These “crisis standards of care” included denial of treatment based on such criteria as:

  • loss of reserves in energy, physical ability, cognition and general health (WA)
  • intellectual and cognitive disabilities (AL)
  • cancer with a less than 10- year survival expectation (PA)
  • individuals who use ventilators on a regular basis may have their ventilators removed and reallocated (KS).

In early 2020, disability advocates began filing formal discrimination complaints against these policies, which were serious enough for the Office for Civil Rights of the U.S. Dept. of Health & Human Services to issue a bulletin stating that:

[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities or age.

Settlements between the Office for Civil Rights and certain states have resulted in critical policy improvements, but other states have failed to change their policies to comply with federal laws prohibiting discrimination based on disability.

Racial Disparities in Healthcare Increase the Injustices and Risks

Last summer, leading disability rights organizations called for an investigation of an Austin Texas hospital’s conduct relating to Mr. Michael Hickson, a Black man with physical and cognitive disabilities caused by brain injury, who died at the hospital on June 11, 2020. A complaint to OCR stated, “[T]he hospital refused to provide him treatment for his COVID 19, because of his disabilities. One of the doctors, in response to Mrs. Hickson asking if the reason they would not treat him was because of his lack of quality of life due to his disabilities, responded yes.”

Racial disparities in denial of healthcare treatments also increase the dangers of assisted suicide.  Leading Black Disabled activist Anita Cameron has explained:

“People of color and people from other marginalized communities are at risk from assisted suicide laws because racial disparities in healthcare:

    • Lead to limited health choices and poorer health outcomes.
    • Make it more likely that doctors will “write off” patients as terminal.
    • Make it less likely that patients can afford life-saving treatment.
    • Make it less likely that patients will receive adequate pain treatment.

With all this, it is clear that legalizing assisted suicide puts people of color, the elderly, people with disabilities and people of certain socioeconomic status at risk of death through mistakes, abuse and coercion.”

National Council on Disability Bioethics Series Documents Rampant Medical Discrimination Against People With Disabilities

The National Council on Disability issued a series of groundbreaking reports on medical discrimination against disabled people, stating:

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.

These reports covered such topics as organ transplant eligibility, futility policies, “quality adjusted life years” value measures and assisted suicide. As “The Danger of Assisted Suicide Laws” states:

The idea that hastened death is a pathway to dignity for people facing physical decline reveals the public’s extreme disparagement of functional limitations and a perception that “dignity” is not possible for people who rely on supports, technology, or caregivers to be independent or alive. Many hold the attitude that a person with a disability may be better off dead than alive.

Conclusion

Advocacy organizations supporting assisted suicide laws have pushed for public acceptance based on a generalized trust that medical providers are both willing and able to protect very ill individuals from medical mistakes as well as coercion and abuse. But that trust is, in many cases, misplaced and, in all cases, unrealistic. Claims that there have been no abuses are patently false, but more cases would surface if these laws were not designed to hide them. Assisted suicide laws must be rejected. The so-called “safeguards” cannot protect older, ill and disabled people from the discriminatory attitudes that permeate society including, as COVID policies have shown us, the medical system on which all of us depend.

Anita Cameron: A Renewed Call for Black Folks: Join Us!

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

Some years ago, I wrote why Black folks should join the movement against physician assisted suicide. I spoke of racial disparities in healthcare, the tendency for us to be poor and our lives devalued and the efforts of Compassion and Choices to convince us that we’re being deprived of a basic right.

I spoke about why many Black folks feel that this is a privileged white folks issue that shouldn’t concern us because that isn’t our culture. Many of us are fighting against systemic racism, white supremacy and police violence and don’t have the energy to devote to something they feel doesn’t affect our community.
But, that was before COVID-19. Now we see that it is ravaging communities of color, particularly Black, Indigenous and Latine communities. We’re witnessing and hearing stories of rampant medical discrimination against disabled people and Blacks, in particular.
By now, many of us have heard Michael Hickson’s story. He was the 46 year old Black disabled Texas man who was refused treatment for COVID-19 due to disability, placed in hospice and allowed to die. Dr. Susan Moore, a doctor in Indiana, contracted COVID-19 and suffered racist treatment while in the hospital. She made a video describing her treatment. She later died.
They are just the tip of the iceberg. There are many, many more Dr. Moores and Michael Hicksons.
What does this have to do with doctor assisted suicide?
Compassion and Choices has been pushing for assisted suicide for those who get COVID-19 and pushing to do it through telemedicine visits.
They have made serious inroads into the Black community and have convinced Black nurses that doctor assisted suicide is a benefit that Blacks should take advantage of. There have been incremental increases of Blacks requesting assisted suicide. The more it gets normalized, especially in diverse states, the more those numbers will rise.
Blacks are at risk from assisted suicide laws because racial disparities in healthcare:
1. Lead to limited health choices and poorer health outcomes.
2. Make it more likely that doctors will “write off” patients as terminal.
3. Make it less likely that patients can afford life-saving treatment.
4. Make it less likely that patients will receive adequate pain treatment.
It is imperative that Blacks and Black organizations get involved in the movement against the passage of doctor assisted suicide laws, especially if you are sick, disabled, poor and seniors. Racial disparities in healthcare, as well as the tendency of doctors to devalue the lives of disabled, poor and elderly will push people into doctor assisted suicide. We can’t let this happen to our community.

Lisa Blumberg CT Mirror Op-Ed: Separating myth and reality in aid in dying

Separating myth and reality in aid in dying

January 20, 2021

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

The virus is surging and the death rate is increasing as the already overburdened health system is in crisis. Yet, there is talk of the legislature again considering a bill to permit doctors to provide lethal prescriptions to terminally ill adults requesting them. This is despite the fact that such bills have stalled in committee five times in the past and due to the pandemic, the legislature may meet virtually for much of the upcoming session. Proponents will be talking about choice and compassion. Let’s separate rhetoric from reality.

Rhetoric: The bill deals with “aid in dying.” Reality: This suggests that the bill would increase access to hospice and palliative care. It would not. It would just enable doctors to give patients a means to end it all. There is quite a difference between a patient deciding when not to have life- prolonging treatment and a doctor actively prescribing lethal drugs for the purpose of directly causing the patient’s death, i.e assisting in a suicide.

As Dr. Joseph Marine, professor at Johns Hopkins University School of Medicine has stated, assisted suicide “is not medical care. It has no basis in medical science or medical tradition… the drug concoctions used to end patients’ lives… come from the euthanasia movement and not from the medical profession or medical research.”  In the year after Washington, D.C passed an assisted suicide law, only two doctors signed up to participate.

Rhetoric: The bill is focused on choice and personal autonomy. Reality: Choice implies a level playing field. In our troubled health system where both costs and profits are soaring, a patient’s medical options usually depend on the quality of their insurance (if any).  Seniors and people with disabilities struggle with “quality of life” prejudices. People of color endure deadly health disparities, which has certainly made clear in the pandemic. Audrey Chapman, a professor of medical ethics at the University of Connecticut Health Center, supports assisted suicide but paradoxically admits that “One would not want a patient to make a decision because they can’t get appropriate medical care,” though that it precisely the situation many people face.

Rhetoric: People seek to end their lives due to pain. Reality:Oregon data indicates that the leading reasons people request lethal prescriptions are psychosocial factors such as perceived lessening of autonomy, or feeling they are a burden. People with disabilities have shown these issues can be addressed by appropriate social supports if the community has the will.

Rhetoric: The law has safeguards that will prevent abuses. Reality: This is wishful thinking. Nothing can prevent erroneous or vague medical predictions even when two doctors are involved. Moreover the minimal criteria written in to the laws apply only to the prescribing of the lethal drugs. Then the person is on their own. Any mental health evaluation to determine if a person has impaired decision-making capacity is only made when he requests the drugs. No evaluation will be done just prior to taking the drugs although mental state can swing wildly based on physical factors like oxygen level. Disinterested parties need not be present when the drugs are swallowed. The practical, financial and emotional difficulties created by the pandemic have caused both domestic abuse and depression to soar, leading people to do or say things they wouldn’t otherwise. Even in ordinary times, there are bound to be cases here or there where a person falls prey to the strong suggestion of another or is the victim of coercion, trickery or worse.

Rhetoric: Doctor-assisted suicide laws only apply to people who will die soon. Reality: Doctors cannot say conclusively when a person will die, especially when the measure is months. Moreover, what is terminal illness is capable of interpretation. For example, an Oregon health official has opined that conditions can be deemed terminal even if there is lifesaving treatment but the person  cannot afford it. This could include diabetes, and other potentially fatal conditions which can be medically managed. Indeed some assisted suicide supporters are advocating dropping any requirement that a “suffering” person’s death be foreseeable and allowing euthanasia as well.

Reality:  In-person testimony is an essential part of governmental decision-making. As Connecticut disability activist Cathy Ludlum has stated, especially with controversial issues, legislators must see their constituents in person and witness their passion. If live public hearings cannot be held this winter or if the people most concerned about an assisted suicide bill would not feel safe attending them even if they were held, the legislature must not consider assisted suicide. It’s that simple.

There are many reasons why assisted suicide bills have failed to pass five times in progressive Connecticut. Bringing up the bill again now should be a non-starter.

Lisa Blumberg is a Hartford area attorney, writer and disability activist.