Lisa Blumberg: A Classic Case of Lethal Denial of Medical Treatment Based On Disability

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

Trisomy 18 is a genetic condition that usually results in physical health problems and cognitive limitations. Life expectancy is currently shorter than typical but people can live into their 20’s and 30’s and one American with trisomy 18, Megan Hayes, celebrated her fortieth birthday with fanfare. Unfortunately, it seems that this information has been slow to percolate down to medical professionals.

When Simon Crosier was born in 2010, he was given full care until he was diagnosed with trisomy 18 at three days old. His parents, Sheryl and Scott Crosier were then told, “your child is now incompatible with life.”

This phrasing is ambiguous. Did Simon have an irretrievably, quickly, fatal condition or was he “now incompatible with life” due to the mere fact of his diagnosis and hospital procedures regarding it? The hospital had a futility policy that the Crosiers assert they did not learn about until after the fact.

The Crosiers had to fight with medical staff who shut off his heart monitors and refused to give him breathing treatments. Rather than give Simon breast milk which Sheryl was pumping conscientiously, nurses used a syringe to put drops of non-nutritious sugar water in Simon’s mouth to quiet him when he got fussy. This was so-called comfort feeding designed to have Simon wither away from starvation. Sheryl had to beg to have him fed breast milk.

Let’s pause right here – it seems Simon was capable of some swallowing, and he was conscious. Unconscious people do not get fussy. If a baby was restricted to “comfort feeding” in any other setting, the responsible party could be charged with extreme abuse.

On that awful day when Simon’s oxygen levels plummeted, the Crosiers say the NICU staff did nothing. Simon died. He was three months old. The Crosiers obtained his medical records and found out about the hospital’s futility policy and that his doctor had placed a do-not-resuscitate order as well as an order for only “comfort feeding” in his file. The Crosiers maintain that none of this had been discussed with them. They had wanted everything done for their son.

Scott would later say of futility policies that “hospitals are making business decisions when the lives of our children are at stake” and he’s right.

This was a classic case of lethal denial of sustenance and medical treatment based on disability.

Since Simon’s death, Sheryl Crosier has spearheaded legislation to prohibit a do-not-resuscitate order from being placed in a minor child’s medical chart without a parent’s or guardian’s knowledge or consent. Versions of Simon’s Law have been enacted in twelve  states and now H.R. 6344, the Simon Crosier Act, has been introduced into Congress. This bill requires hospitals and other health care providers, as a condition of Medicare and Medicaid participation, to have certain written policies and procedures in place that limit the implementation of do-not-resuscitate (DNR) orders for unemancipated minors.

The bill provides in pertinent part that “Either parent . . . may refuse consent for a do-not-resuscitate order or similar physician’s order . . . The provider shall not have the authority to require the withholding or withdrawal of life-sustaining procedures from an unemancipated minor over the objection of the parent or legal guardian, unless . . . the minor has died. There shall be a presumption that the continuation of life is in the minor’s best interest.” 

The bill would also require a hospital to provide its policies regarding withdrawal of life sustaining treatment, including any futility policy it may have, to a parent or legal guardian upon request.

In politics, it unfortunately matters how an initiative is framed. H.R. 6344 has been depicted as a parental rights initiative. Without taking anything away from parent advocates, the bill should be seen first and foremost to concern disability justice and health care equity issues.

As noted in an earlier blog, in our public comment on the update to the 504 regulations by the Department of Health and Human Services, we included a case documented in the National Council on Disability’s report on medical futility and disability where doctors gave parents of an infant with trisomy 18 misleading information about the child’s survivability. They did this to induce the parents to consent to the withholding of treatment. The Department affirmed that this type of scenario would amount to unlawful discrimination under Section 84.56. They also indicated that a treatment could only be deemed futile if it was clear that it could not achieve its physiologic effect without regard to the person’s disability. Of course, adults as well as kids have often been subjected to discriminatory futility policies.

By focusing on the unilateral imposition of do-not-resuscitate orders, H.R. 6344 or a similar bill would be a welcomed tool in our struggle for equal access to health care. Disability groups must be heavily involved in its final drafting and in presenting it as a bi-partisan measure.

D.C. Area Event: “Better Off Dead?” with Liz Carr – Film screening and panel discussion

Join the Center for Accessibility for an in-person screening and discussion of this groundbreaking documentary with Liz Carr and other panelists:

Friday, September 20, 10:30am – 2:00pm, Registration

Martin Luther King Jr. Memorial Library – Central Library,

901 G Street NW, WASHINGTON, D.C.

White woman wheelchair user seated behind the letters "BETTER OFF DEAD" where the "O" is a skull, with a London background.
Liz Carr

Start the morning with a screening of the acclaimed 2024 BBC Documentary Better Off Dead?, followed by a panel discussion with English actress and international disability rights activist Liz Carr. Refreshments will be served after the discussion.

Film running time: 58 minutes

NOTE: Registration is strongly recommended.

*Accessibility notes: ASL interpretation will be provided throughout the event. Open captions will display on screen for the film. CART will be provided for the panel discussion.

For any other reasonable accommodations, please include details in the registration form, or contact the Center for Accessibility at DCPLaccess@dc.gov or 202-727-2142.

This program is presented with support from the Patients Rights Action Fund, National Council on Independent Living, Not Dead Yet, United Spinal Association, and the American Association of People with Disabilities.

About Liz:

Liz Carr is an English actress and international disability rights activist who lives in London, England with her wife Jo and her 19 year old cat, Ella Fitzgerald. A lead actor in the BBC’s flagship forensic drama Silent Witness for 8 seasons, Liz is also known for the regular characters she portrays in the Prime Video series Good Omens, Netflix’s The Witcher,and the Marvel series Loki. She can be seen alongside Mark Wahlberg in Infinite, the Paramount thriller by the renowned director Antoine Fuqua. On stage, in 2022 Liz won an Olivier award (The UK equivalent of the Tony awards) for her performance in critically acclaimed, The Normal Heart at the National Theatre.

In May 2024, Liz authored a highly anticipated BBC documentary, Better Off Dead? exploring why she and many other disabled people oppose legalising assisted suicide and euthanasia. She is not religious but instead, her objections are based on a disability rights and social justice perspective, a perspective that Liz and others believe has been ignored by the media. Until now.

This documentary is the culmination of over 15 years of activism; in 2012 Liz visited all the countries where assisted suicide was then legal for a two part BBC World Service radio documentary called, When Assisted Death is Legal. She wrote and performed in the sold out show, Assisted Suicide: The Musical and she has spoken on this subject on radio, in TV debates and at events all over the world. Better Off Dead? has already been nominated for a prestigious UK documentary award, a ‘Grierson,’ for best science documentary.

 

Anita Cameron: I Still Wouldn’t Want Assisted Suicide

Photo-style profile drawing of Black woman with caramel color skin, long locs with flecks of gray wearing a red t-shirt.
Anita Cameron Artist: Jennifer White-Johnson

Two weeks ago I went to the ER in extreme pain. Normally, I live with level ten pain. I’ve gotten used to it. In a flare, I’ve learned not to moan or cry out.

But this pain, which started out as a small annoyance, spread and went down my spine, then, into my chest and abdomen, became unbearable. I had to go to the ER.

I’m usually treated as a drug seeker when I go in, even though I’m allergic to all opioids and opiates. But blood tests showed cardiac enzymes in my blood and they admitted me.

While in hospital, I experienced a frightening event. My pain level was so high that it caused my blood pressure to skyrocket to 240/120. The pain was so bad that it was literally putting stress on my heart and my heart was about to give out. There were at least 10 doctors and nurses in the room, working to get my pain level, and thus, my blood pressure, down. In desperation, doctors decided to give me Dilaudid, a medication that I am allergic to, and Benadryl, than risk me having a heart attack.

I didn’t realize pain could do that to one’s body.

Even with the unrelenting pain that I have been going through, I still don’t want to die. I want my doctors to think outside the box, as they did that day. They tried other pain meds, which did nothing, then, made the decision to give me a pain medicine that I’m allergic to because they could deal with the allergic reaction; they could not deal with me having a heart attack.

If people are afraid of dying in pain, why not fight for better access to pain management and palliative care so that this won’t happen? This tells me that it’s not about dying in pain, it’s about the right to die, itself, and the proponents are so into themselves that they cannot recognize that assisted suicide laws put people in danger. The right to die becomes the duty to die, especially if you are from a marginalized community.

Now, having experienced pain that can take my life, I’m on a mission to keep that pain at bay. But, in doing so, I’m exposing myself to the racist practices of pain clinics that refuse to prescribe opioid and opiates to their patients. Black women, especially, are not given correct amounts of effective pain medications to manage our pain. I asked my doctor to indicate in my records that I live with pain, and what happened when the pain got too bad. It was explained to me that until I’m assigned a doctor, no one will see that information, meaning that as usual, because I’m Black, I’ll be treated as a drug seeker even though I’m allergic to almost everything.

Why do assisted suicide proponents fight for assisted suicide while saying that they support palliative care and pain management? Because once again, it’s not about pain or the fear of it. It about the right to die. They use fear of pain as the catch, to bring you in because nobody wants to die in pain, but it’s really about them not wanting to be disabled because they feel that is undignified. They don’t want to live the life of being disabled, so they use pain as an excuse to push their right to die agenda.

Even as I was going through this incredible pain, I wasn’t thinking, “let me die”. I was thinking, “stop this pain so I don’t die”! I was literally thinking, “I don’t want assisted suicide, I want pain-free, or at least, manageable pain that can be addressed.”

When whole communities of marginalized people aren’t getting the healthcare we need, access to pain treatment that isn’t steeped in racism, and cardiac, diabetes, cancer and other treatments that aren’t steeped in racism, how can you support assisted suicide?

As this is normalized, meaning more and more states pass assisted suicide laws, we’re going to see a frightening trend of marginalized people requesting assisted suicide because they were “convinced” that it’s a good thing by family members or doctors.

As long as there are marginalized communities who deal with healthcare disparities, there is no place for assisted suicide anywhere in this country.

Webinar Aug. 29! The Risks of Assisted Suicide Laws for Disability and Eating Disorders Communities

Announcement from the Patients Rights Action Fund, Eat Breathe Thrive and the National Association of Anorexia Nervosa and Associated Disorders (ANAD)

Please join us for an international panel discussion on The Risks of Assisted Suicide Laws for Disability and Eating Disorders Communities to take place:

THURSDAY, AUGUST 29TH 2024 | 12:00PM EST – 1:15PM EST / 5:00PM – 6:15PM BST

REGISTER HERE

This panel will explore the significant risks that assisted suicide laws pose to individuals with disabilities and those with severe, long-standing eating disorders.

As these laws gain traction globally, their disproportionate impact on marginalized communities often goes unnoticed. We will discuss how stigma influences both the creation and application of these laws, particularly in ways that harm people with disabilities and chronic mental health conditions. The panel will also examine how societal biases can lead to dangerous assumptions that certain lives are less worth living, less worthy of care and healthcare dollars.

Our panelists include:

  • Anita Cameron: A prominent activist and Director of Minority Outreach for Not Dead Yet, with extensive experience in disability justice and advocacy.

  • Diane Coleman: President and CEO of Not Dead Yet, a disability rights activist and advocate against assisted suicide and euthanasia.

  • Jules Good: Programs Coordinator for the Autistic Self Advocacy Network and founder of Neighborhood Access, focused on building accessible communities.

  • Natalia Hicks: Director of Community Justice & Health Equity at Inclusion Canada, with a focus on the intersections of disability and mental health.

Our co-chairs include:

  • Matt Vallière: Executive Director of Patients Rights Action Fund, dedicated to protecting patients from the harms of assisted suicide legislation.

  • Chelsea Roff: Executive Director of Eat Breathe Thrive, dedicated to preventing and helping people recover from eating disorders.

DATE, TIME & LOCATION

This event will take place online via Zoom on Thursday, August 29th 2024, 12:00PM EST/5:00PM GMT through 1:15PM EST/6:15PM GMT

COST

FREE

Join us for what is shaping up to be an amazing event!

REGISTER HERE!

 

Assisted Suicide Laws Based On the Oregon Model Sweep In Disabled People

By Lisa Blumberg, JD

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

In 2014, in connection with whether assisted suicide laws would ever be expanded to include people with cognitive  decline, Barbara Coombs Lee, then director of Compassion & Choices, said, “It is an issue for another day but is no less compelling.” This was a momentary slip.

The political strategy of Compassion & Choices, the primary organizational proponent of legalized assisted suicide, has always been to sell the concept to state legislatures by asserting that it would only be an option for the dying. They advocate for the Oregon model where eligibility for a lethal prescription is limited to those who due to a terminal illness have less than six months to live. The argument goes that assisted suicide has nothing to do with disabled people except those who happen to be dying.

Scratch the surface and the picture is different. Legalized assisted suicide has a disproportionate impact on people with disabilities for several reasons.

First, virtually all people who are terminally ill have health related functional impairments. The leading reasons why individuals choose assisted suicide are disability related and psychosocial in nature such as perceptions of lessened autonomy. One study indicates that a fear of going into a nursing home – which is a quite reasonable fear for many people with disabilities – is much more likely to fuel a desire to hasten death than pain. In other words, people think about suicide not because death may be near but because they are unsure about how to deal with the practical problems and devaluation that come with needing help or accommodation in daily activities. As Vincenzo Piscopo, CEO of United Spinal Association has said, “inadequate resources to provide home care and fear of being a financial or care burden is the motivation for overwhelmed severely disabled people to kill themselves.”

Of the 884 people who died by ingesting lethal drugs obtained under California’s assisted suicide law in 2023, 45 people were reported to have ALS, 24 had Parkinson’s disease and 8 multiple sclerosis. The hallmark of these conditions, although they may have end stages, is physical disability.

The second reason is that for purposes of determining eligibility, doctors may take a very expansive view of what constitutes terminal illness. One example is anorexia. A Colorado doctor, who has provided lethal prescriptions to three young people with anorexia, has spearheaded an effort to recognize a new clinical disorder called “terminal anorexia”, which would apply to the small fraction of patients for whom “recovery remains elusive”. As recounted in the New York Times, the motivation for the label was that it would give people “a formal diagnostic acknowledgment that they were dying, making it easier for them to access hospice care — and even, should they want it, and should they live in a state where it is legal for terminally ill patients, and should their physicians be willing, a physician-assisted death.” This is circular reasoning. In my opinion, it is prognosis by semantics. Fortunately, there has been considerable pushback by both health professionals and advocates.

In Colorado in 2023 though, 9 people died by assisted suicide where the terminal condition was identified as “severe protein calorie malnutrition.” Before 2021, no such cases were reported. In California in 2023, 11 people reported to have endocrine, nutritional and metabolic disease died by assisted suicide. It is not known how many of these people in these states had eating disorders or restricted caloric intake for other reasons.

Third, the ethicist Thaddeus Pope promotes voluntarily stopping eating and drinking (VSED) as a “bridge” to assisted suicide under the Oregon model. He has described a case in Oregon where a woman with early dementia, who didn’t qualify for assisted suicide any other way, used VSED with the help and support of her medical team for four days whereupon she was diagnosed with the “terminal disease” of dehydration. She requested a lethal prescription and promptly received it, with the waiting period between the two requests being waived, because she now had a short life expectancy (without treatment). Pope is candid that she made herself terminally ill as determined by her doctors and is untroubled by it.

Every competent adult has the right to decide what to eat and drink and whether to eat or drink at all. The issue here is selectively promoting VSED as a back doorway to assisted suicide. This would mean that with a doctor’s cooperation, any significantly disabled person could meet eligibility criteria by manipulating circumstances to become terminally ill. Indeed, the idea of medical complicity in making someone eligible for assisted suicide is extremely chilling and has obvious implications for the whole disabled community.

The fourth reason is that in large part due to the health disparities we are subject to, people with disabilities face a greater incidence of physical and mental ailments, including obesity, diabetes, cardiovascular disease, addiction, and mental distress, as well as increased rates of morbidity and mortality. According to a piece in Stat, nearly half of people with disabilities say they are in bad health. Statistically, this means people with pre-existing disabilities become eligible for assisted suicide under the Oregon model before others do. Moreover, suicide prevention services are among the health care services that we struggle to access. It is a perfect storm.

None of this is surprising. The premise of assisted suicide laws is that a person’s health status may make it reasonable for them to kill themself. The Oregon model embodies the “better off dead than disabled” ethos in thin disguise.