Repealing the Final Rule Would Be Tragedy For Opposition To Euthanasia.

Meghan Schrader

By Meghan Schrader

As I’ve mentioned, the Final Rule, a 2024 update to Section 504 of the Rehabilitation Act, is one of the best tools that the anti euthanasia movement has had in decades. The Final Rule strengthens Section 504 and the Americans With Disabilities Act in several ways, including new prohibitions against medical personnel pushing disabled people towards death. These provisions are new bulwarks against assisted suicide, coerced DNRs, futile care statutes and the infanticide of disabled babies; such as in the 1982 Baby Doe case. Everything groups opposing euthanasia need to avoid a Canada-like situation is in those regulations.

The Final Rule not only addresses futile care statutes, assisted suicide and infanticide, it also contains numerous other beneficial provisions. For instance, the Final Rule contains new protections for disabled parents, internet access, accessible medical equipment and better community services for disabled people at risk of being institutionalized. Hence, the Final Rule will help protect disabled Americans from the scarcity that is pushing disabled Canadians towards euthanasia.

But in 2025, 17 states filed the Texas vs. Becerra lawsuit, now called Texas vs. Kennedy. The original lawsuit sought to repeal the entire Final Rule, as well as Section 504 itself. (The challenge to Section 504 itself was dropped after backlash.)

In addition to multiple disability protections that I think EPC blog readers from across the political spectrum can agree on, one clause of the Final Rule defined gender dysphoria as a disability. This was one of the reasons that the 17 states filed suit against the Final Rule.

But the gender dysphoria issue is currently a moot point. Regardless of whether one believes that gender dysphoria ought to be defined as an impairment, the President’s executive order on gender issues means that this government will not enforce that part of the Rule. So, eight of the original 17 states dropped out of the lawsuit.

But 9 states still want to eliminate the rest of the Final Rule. Texas, Florida, Alaska, Indiana, Missouri, Louisiana, Kansas, Montana and South Dakota want the government to avoid “burdening” states with the Rule’s requirement that states institute new supports for disabled people at risk of being institutionalized. So, on January 23rd, 2026, those states filed an updated version of their lawsuit. This iteration of the lawsuit makes no mention of gender dysphoria or repealing Section 504 itself, but it still seeks to have the entire Final Rule set aside.

I am also very worried that even if the lawsuit is dropped, HHS and the Department of Justice will rescind the entire Final Rule anyway.

This would be a shame, because the Final Rule is a critical tool for achieving opposition to euthanasia.

Groups opposing euthanasia have always fought the infanticide of disabled babies, which we know happens periodically in hospitals across the US and abroad because doctors make prejudiced judgments about the value of the babies’ lives. (Such as the UK Alfie Evans case.) Section 84.56 specifically addresses this problem. To quote from the text of the Final Rule:

“Comments: Several commenters asked the Department to clarify the application of § 84.56 to newborn infants.

Response: As indicated within the NPRM, the Department considers section 504, including § 84.56, to apply to newborn infants. This includes the prohibitions against the denial of medical treatment under § 84.56(b)(1) and (2), and the prohibitions on the discriminatory provision of medical treatment under § 84.56(b)(3).

Comment: One commenter objected based on its understanding that the Department's proposed rule would not apply to decisions to withhold treatment from infants with disabilities in which the disabling condition is related to the condition to be treated, noting that § 84.56(b)(2) addresses treatment for a separately diagnosable condition or symptom and not for the underlying disability. The comment concerned infants with disability conditions such as meningomyelocele, hydrocephaly, microcephaly, or other anatomical anomalies. The comment noted that failure to treat these conditions represents discrimination against a child with a disability.

Response: The Department believes that this comment misconstrues the section 504 rule. The Department intends that this rule will generally apply to the provision of medical treatment for infants, including those seeking treatment for separately diagnosable symptoms or conditions related to their underlying disability, when medical treatment is provided to other similarly situated children. For example, an infant with microcephaly may experience seizures. This would constitute a separately diagnosable symptom or condition for which treatment would be subject to the protections of § 84.56(b)(2) despite the fact that the seizures are a symptom of the infant's microcephaly. As the Department's NPRM made clear, with respect to separately diagnosable conditions, the rule will not require that the condition be entirely unrelated to the underlying disability. “Nor does it matter for these purposes whether the condition for which the individual is seeking treatment is in some sense causally related to the underlying disability if the decision to refuse treatment would not be made as to similarly situated individuals without the disability.” 88 FR 63405. In addition, § 84.56(b)(1) prohibits denying or limiting medical treatment to a qualified individual with a disability based on bias or stereotypes about that patient's disability, judgments that the individual will be a burden on others due to their disability, or a belief that the life of a person with a disability has a lesser value than the life of a person without a disability or that life with a disability is not worth living. Under such circumstances, the discrimination described by the commenter would also be covered under § 84.56(b)(1) even if the condition for which the patient sought treatment was not a separately diagnosable symptom or condition from their underlying disability.”

So, if you are fighting infanticide, the Final Rule is your best friend. 

Opposition to euthanasia has also always fought futile care laws, like those that exist in Texas and California, which allow hospital ethics committees to override patients’ and families’ desires for life-saving care that ableist physicians consider “futile.” For instance, the anti-futility provisions in the Final Rule were inspired by the case of Michael Hickson, who was denied treatment for COVID-19 because he was a quadriplegic. The Final Rule forbids such authoritarianism. It is the anti euthanasia movement’s best shot at eliminating futile care laws once and for all.

An excerpt about the Final Rule’s prohibition on medical futility reads as follows:

“The Department proposed §  84.56(b)(1)(iii) to prohibit recipients from denying or limiting medical treatment based on the provider's belief that the life of a person with a disability has a lesser value than a person without a disability, or that life with a disability is not worth living.

Comments: The Department received a broad array of comments from disability organizations, civil rights organizations, and other stakeholders supporting this approach. We received stories from people with disabilities describing their own experiences or those of friends regarding the denial of life-sustaining treatment and the difficulties involved in accessing it after such denials. We also received similar stories from providers. For example, one provider association described a 25-year-old patient with a developmental disability who had been referred to an inpatient hospice unit after becoming poorly responsive with brain imaging demonstrating a shunt and severe abnormalities. After the provider learned from a family member of a recent sudden change in the patient's behavior, the patient received a second opinion, leading to the shunt being surgically revised, the patient's condition improving, and her enjoying her life for many more years. In the words of this commenter, the patient's “referral to hospice without sufficient exploration of other treatment options was inappropriate and may have been driven by a mistaken clinical assumption regarding her baseline quality of life.”

Response: The Department will retain the provision as proposed. We respond to specific questions regarding the application of this requirement throughout this section.”

Hence, this section of the Final Rule forbids the futile care impositions that groups opposing euthanasia have fought for decades.

Moreover, we know that disabled Canadians are agreeing to be killed by “MAiD” because they aren’t getting the supports they need: not having wheelchairs, pain control, food, housing, jobs, etc. These conditions also contribute to high rates of suicide among US citizens with disabilities. Hence, the Final Rule helps prevent disabled Americans from experiencing Canada-like tragedies.

And, given that the Final Rule prohibits federal funding recipients from “from denying or limiting medical treatment based on the provider's belief that the life of a person with a disability has a lesser value than a person without a disability, or that life with a disability is not worth living,” it precludes turning disabled people’s suicides into a “medical procedure.” Think of the efforts we will have to expend against assisted suicide in the future: wouldn’t you like to use the Final Rule to fight those bills?

I urge other euthanasia opponents to do what they can to defend the Final Rule. Time is of the essence, because many of the regulations in the Final Rule are supposed to take effect this month and federal officials have already eliminated or delayed some of them. For instance, officials have rescinded new provisions requiring adequate staffing in nursing homes. New rules about internet access and home and community based services have also been paused. Therefore, the aforementioned anti-death provisions could soon be paused or eliminated as well.

So, if you are someone in Washington DC who interacts with officials at HHS or the Department of Justice, make the importance of the Final Rule part of your conversations. If you live in one of the states that is bringing the Texas vs. Kennedy lawsuit, write to your attorney general and ask them to drop it.

The Final Rule furthers compassion and dignity for disabled persons. It is also one of the USA’s most urgent anti-euthanasia issues in decades.

Author Note:

For information about how to contact your attorney general to ask them to drop the lawsuit, see this link.

To write to the US Department of Justice, go to this link.

To write to the Department of Health and Hunan Services, use this link.
For a quick explanation of what Section 504 of the Rehabilitation Act is, see this Drunk History video about the history of the law. 

Meghan is a disability instructor and a member of the EPC-USA board.

Texas disability medical futility case to be heard in court.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Michael Hickson

I have good news. The US Court of Appeals for the Fifth Circuit has agreed to hear the disability discrimination "medical futility" case of Michael Hickson who died on June 11, 2020 after being denied basic care by St. David’s South Austin Medical Center.

Thaddeus Pope published the following comment on his medical futility blog on March 8, 2026:

The U.S. Court of Appeals for the Fifth Circuit has ruled that a disability discrimination case may proceed where Texas providers withheld life-sustaining treatment based on determinations that the patient's inability to walk or talk meant that he had a low quality of life.

"We hold that a plaintiff asserts a cognizable claim for disability discrimination based on adverse medical treatment decisions—or decisions not to treat—when allegations show that the treatment was based 'solely,' in the pejorative sense, on the individual’s disability."

The family of Michael Hickson may now proceed on this and some other claims in the U.S. District Court for the Western District of Texas.

This ruling, combined with new DHHS regulations targeting medical futility determinations, raises significant red flags for hospitals withdrawing life-sustaining treatment over patient or family objections.

The disability rights group - ADAPT - published a powerful video by Melissa Fridie Hickson concerning the death of her husband Michael, who was also the father of her 5 children.

The Michael Hickson case is particularly egregious since the doctors unilaterally decided to deny Hickson treatment, they denied him basic care based on "quality of life." The legal decision stated:

(“St. David’s Healthcare”) stopped giving food and fluids to Michael Hickson, a loving husband and father of five who was hospitalized for illnesses that he had previously overcome. The doctors told Michael’s wife that his inability to walk or talk meant he had a low quality of life. Michael passed away.

Link to previous articles about Michael Hickson.

• The deadly quality of life ethic (Read).
• ADAPT of Texas Demands Investigation into Michael Hickson's death (Read).
• ADAPT of Texas protests Hospital killing of Michael Hickson (Read).

Britain's financial crisis may lead the government to legalize assisted suicide

Human life is devalued when a price is put on people's lives or their care

Alex Schadenberg
Executive Director,
Euthanasia Prevention Coalition

A report from the UK government's National Audit Office on the financial sustainability of the NHS - National Health Services in the UK, that was released on July 23, 2024 may lead to their government pushing to legalize assisted suicide.

The conclusion of the NHS financial sustainability report states:

The scale of challenge facing the NHS today and foreseeable in the years ahead is unprecedented.

When we consider how the health needs of the population look set to increase, we are concerned that the NHS may be working at the limits of a system which might break before it is again able to provide patients with care that meets standards for timeliness and accessibility.

The NHS financial sustainability report was released just when Keir Starmer, the leader of Britain's Labour Party, became the Prime Minister. Starmer is a long-time promoter of assisted suicide. During the election Starmer promised that he would introduce a bill and allow a free-vote to legalize assisted suicide in the UK. The July 4 election resulted in the Labour Party winning a massive majority of seats.

An article in The Standard states about the NHS financial sustainability report:

The report is the ninth of its kind by the NAO, and the first to be published since February 2020.

Experts said its findings depict “a picture of systemic failures and inefficient decision-making”.

The report warned that NHS England’s financial position is “worsening” due to a “combination of long-standing and recent issues, including failure to invest in the estate, inflationary pressures, and the cost of post-pandemic recovery”.

The article also pointed out that the UK is undergoing a demographic shift towards an aging population.

It said there is scope for NHS England to “make better use” of its funds, but long-term sustainability depends on how the Government addresses the “steeply increasing demand for healthcare”.

It added that the country’s changing demographics “will continue to create significant additional demand for NHS services” and warned “people are living longer and spending more years in ill-health”.

According to the report, the NHS received £153 Billion and the combined deficit in the system was £1.4 Billion which doesn't take into account the increased funding that was already invested into the NHS system to balance the funding.

Legalizing euthanasia and/or assisted suicide to control the cost of health care leads to dangerous outcomes, as has happened in Canada. 

When human lives are deemed to be "better off dead" or "costing too much" then people with healthcare needs, especially people with disabilities, will be urged to "choose" death. Subtle pressure is often enough to cause a significant shift in healthcare.

Tracy Poleczuk with her husband.

James Reinl recently published an article in the Daily Mail where he interviewed Heather Hancock, a Canadian Saskatchewan woman who lives with spastic cerebral palsy who was pressured three times, while receiving medical care, to ask for euthanasia.

An article by Matt Gilmour that was published by CTV news Montreal concerned Tracy Polewczuk, a woman who lives with Spina Bifida, who on two separate occasions was urged to request euthanasia by a medical professional without Tracy initiating the request.

Both Canadian women live with disabilities and feel that their lives have been devalued by the pressure to "choose" death over life.

Polewczuk told Gilmour in the interview that:

"Pain sucks. We all agree. It's terrible. I'm in pain 24/7. It never stops. I can survive that. I cannot survive being treated like a sack of meat,"

Heather Hancock

While Hancock told Reinl in the interview that:

A nurse was helping her into the bathroom at night, during a lengthy bout of care for muscular spasms in 2019, when the carer crossed a line into the unthinkable.

'You should do the right thing and consider MAiD,' said the nurse, referring to the country's Medical Assistance in Dying program.

'You're being selfish. You're not living, you're merely existing.'

Hancock, now 56, says she was 'gobsmacked' but stood her ground, telling the nurse that her life had value, even if she spent four fifths of it in a wheelchair.

People with disabilities are right to be concerned.

We fear that the NHS financial crisis may create pressure for the new UK government, led by long-time assisted suicide activist Keir Starmer, to push the UK government to legalize assisted suicide as soon as possible.

Human life is devalued when a price is put on people's lives or their care.

British Columbia woman denied cancer treatment

British Columbia (BC) has the second highest euthanasia rate in Canada.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Sign our petition: BC Health Authorities Must Stop Using Euthanasia to Replace Medical Care (Petition Link).

Kim Angell

Kim Angell (41), who lives in Ladysmith British Columbia (BC), is organizing a campaign to change the healthcare system in BC for people who live with cancer.

An article by Jordan Cunningham that was published by Chek News on July 17 tells of Kim Angell and her campaign to get the BC government to fund cancer treatment that is necessary to extend her life.

Angell, who has been living with incurable Stage 4 metastatic breast cancer for 2.5 years, can't get a drug that she needs because she is considered incurable. Cunningham reports:

Kim Angell lives with incurable Stage 4 breast cancer.

“The average lifespan of someone living with metastatic breast cancer is three to five years, and I’ve been living with this for two and a half years,” says the 41 year-old.

In May, a PET scan confirmed a progression, and Angell needed to switch to a medication known as Enhertu. She says the drug is not provincially funded, but she got access to a course of treatment through an application by her oncologist to Astrazeneca’s Patient Support Program.

A common side effect of cancer-slowing drugs is neutropenia, which can be offset with injections of Filgrastim.

Angell says BC Pharmacare no longer covers this drug now that she’s deemed incurable.

“Just because we may be living with Stage 4 cancer and are no longer considered curable, we still deserve access to those treatments because our lives are important,” she says.

Angell says she recently purchased ten injections of Filgrastim for $500, which will last her six weeks.

Angell has contacted BC Premier David Eby and BC Health Minister Adrian Dix. Cunningham reports Angell as saying:

“I feel like my life doesn’t matter,” she says in regards to the lack of funding for terminal patients, “I want action.”

“I’m so grateful to be here today, even with all the other stuff that I’m dealing with,” she says. “That’s all you can do, is focus on what you’ve got right now.”

An article by James Reinl that was published in the Daily Mail stated that the number of British Columbia euthanasia deaths increased by 24% in 2022 to 2515 euthanasia deaths, representing the second highest rate of euthanasia in the world.

A recent article by Will Potter that was also published in the Daily Mail indicated that Fraser Health, a healthcare authority in BC has been sending a slideshow promoting euthanasia to pensioners. Potter reported:

The slideshow included advice on 'expressions of wanting to die', noting that it can be used to 'promote a sense of control'. Terminally ill patients are also seemingly offered the chance to die within 'a day'.

British Columbia is making it easier to die by lethal drugs than to live with medical treatment.

Congress should ban Quality of Life healthcare rationing

This article was published by National Review online on June 27, 2023

Wesley Smith

By Wesley Smith

Health-care costs are soaring, in part because the medical field is increasingly being put into harness to facilitate lifestyle and self-fulfillment desires. So the pressure is on to ration health care. If we are not careful, rationing could be wielded in an invidious manner against the very sick, elderly, disabled, and those seen as nonproductive.

A prime rationing approach in this regard is known as the “quality-adjusted life year” (QALY) scheme. It works, very roughly, like this: Let’s say John is hit in the prime of life with a serious illness and that medicine A would likely give him two more years with a good quality of life as an able-bodied man. The cost would be $100,000. That would be worth, roughly two QALYs (less if he is elderly, but let’s not get too complicated here).

Now assume that his paralyzed twin brother Mark contracts the same illness. Just as with John, medicine A would give Mark two years of life at his current level as a man with a serious disability. Because Mark is paralyzed, the rationing bureaucrats might deem his two years of actual life worth only 0.5 QALY.

Then, the cost/benefit is measured, determining whether the cost of medicine A is worth the number of QALYs it would provide. Under this approach, John would be more likely than Mark to receive the treatment because the $100,000 would give him two QALYs, versus Mark’s 0.5 QALY — even though their actual lives would be extended an equal amount of real time for an identical price.

The above (simplified) description illustrates the potential for discrimination under a QALY system — which is why the disability-rights community adamantly opposes the QALY scheme and wants Congress to outlaw it in federal programs. This isn’t paranoia. As a detailed report published by the National Council on Disabilities published in 2019 noted, patients with disabilities in countries that have adopted the QALY rationing system have witnessed “coverage denials and loss of access to care.”

QALY rationing was banned under the Affordable Care Act; the ban was necessary to get it passed but opposed (naturally) by the New England Journal of Medicine. Now, the Protecting Health Care for All Patients Act (H.R. 485) has been put in the hopper to prohibit “the use of quality-adjusted life years and similar measures in coverage and payment determinations under Federal health care programs.”

Once again, the medical and bioethics establishments are opposed. In “Congress’ Misguided Plan to Ban QALYs,” a recent opinion piece in the Journal of the American Medical Association, the bioethicist co-authors worry that banning QALYs will harm the ability of the government to negotiate drug prices. But I think their real concern is this:

The idea that negotiating prices using QALYs will restrict access to care relies on the unrealistic premise that people can afford all health care services, no matter the cost. In the US, high costs routinely inhibit patient access to necessary health care services. One in 4 people in the United States do not take their medications as prescribed because of the cost. Annual insurance premiums for a family now exceed the cost of a new car.

If members of Congress are truly concerned about access to health care, they should encourage government and private payers to use all the tools they can to negotiate fair and affordable prices for the health services they cover.

Well, then stop expanding the elective procedures that have to be covered because it makes people “feel” more fulfilled. Allow more free-market remedies to harness the power of competition to reduce prices. Increase the scope of Health Savings Accounts.

But formal rationing? Not on a bet. Why? Because rationing is inherently political, meaning that decisions about who will be denied access to efficacious treatment will depend on who wields political power in society. In the current environment, that means expensive surgeries and other medical interventions deemed to further woke goals of equity and social justice will never be curtailed. But I would oppose rationing if the country’s power was held by social conservatives. Rationing leads to the powerless being denied access to care that the well-connected can attain.

Unless QALY rationing is prohibited, people with disabilities, the frail elderly, and chronically and terminally ill people could well see their medical options curtailed based on what bean counters, “experts,” and public-opinion surveys think about the quality of their lives. That’s unacceptable. Pass H.R. 485.

Editor’s note. Wesley’s great columns appear on National Review Online and are reposted with permission.

Woman awakens from coma on the same day that life-support was to be withdrawn.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

I have listened, over the years, to many people who have contacted to discuss whether they should discontinue life-sustaining treatment for a person when they are the Power of Attorney for Personal Care.

Bettina Lerman

These are never easy discussions. In these circumstances I will listen to the concerns of the decision maker and ask questions to help them assess what the person would have wanted if they were capable of making the decision or discuss what is the best decision. I only discuss the issues, people have to make decisions for themselves.

Michelle Butterfield, reported for Global News on a 69-year-old Florida woman who came out of coma, related to COVID-19, on the same day as the family had agreed to remove her from life-support. Butterfield reported:

Bettina Lerman’s family had already made funeral arrangements and had picked out a casket and headstone for the 69-year-old woman. They were preparing to say goodbye after doctors said it didn’t look like she would ever wake up.

“We had a family meeting with the hospital because my mother wasn’t waking up. No matter what they (did), they couldn’t get her to wake up,” Andrew Lerman, Bettina’s son, told CNN. “They said that her lungs are completely destroyed. There’s irreversible damage — that it’s just not going to happen.”

The family was picking up her headstone on Oct. 29 when they received a call from the hospital.

“There’s nothing wrong. Your mother woke up,” the doctor told Andrew, more than four weeks after she was first placed on the ventilator.

Withdrawing life-sustaining treatment is different than euthanasia or assisted suicide. When asked, I will usually advise the person to ask for more time. Medical professionals are not always right and sometimes a person needs a little more time to awaken.

For instance, a few years ago, a close family member had a profound heart attack. Doctors urged her husband to withdraw life-sustaining treatment, telling him that she would not likely come out of coma, and if she did she would never be the same. 

Her husband insisted on continuing treatment. She not only came out of coma but she fully recovered and remains healthy today.

I am not suggesting that recovery is always possible, but patience and time can save lives.

Computer Program Developed in Canada to Predict When Seniors Have 6 Months to Live

This article was published by the National Review on June 5, 2021

Wesley Smith

By Wesley Smith

As if we needed further evidence that medicine is growing increasingly impersonal, the Canadian Medical Association Journal has published a study that claims a computer program can predict when seniors have six months to live. From the Global News story:

Amid a lack of proper support for Canadians receiving home-based support towards the end of their lives, a new risk calculator is helping predict how long seniors have left to live.

The Risk Evaluation for Support: Predictions for Elder-Life in the Community Tool — dubbed ‘RESPECT’ for short — can predict death within six months, and was developed using data from more than 491,000 community-dwelling adults aged at least 50 years who used home care between 2007 and 2013.

Always with the acronyms to hide utilitarian protocols and procedures. Euthanasia in Canada is called MAID (medical assistance in dying), and now, RESPECT. Good grief.

“The RESPECT calculator allows families and their loved ones to plan,” said Dr. Amy Hsu, investigator at the Bruyère Research Institute and lead author of the study.

“For example, it can help an adult [or] child plan when to take a leave of absence from work to be with a parent or decide when to take the last family vacation together.”

Or it could be used to restrict care and/or push euthanasia. As one Canadian bioethicist noted:

If the calculator would ever be introduced to Canada’s healthcare system, Bowman believes that it would be interfaced with the country’s medical assistance in dying (MAiD), and could possibly shape the attitude of palliative care and end of life decisions.

“It will also shape the attitude of health care workers and it also raises a deeper question of who will interface with the broader question of what types of life are worth living and who decides, which is profoundly important stuff,” he said.

Ya’ think?

People don’t die by the numbers. Much depends on the kind of care they receive, their mental states, and individual differences that can be immeasurable. Even the study’s authors note a very big problem.

As with many prediction models, RESPECT is less well-calibrated at the extremes of the distribution. In particular, we found that RESPECT overpredicted the mortality risk of patients in our top 3 risk bins.

Oops.

The idea that crucial and intimate decisions about patient care could soon be driven by a computer-modeling system — rather than individual assessments — is very alarming. And it will often be wrong. I know of several patients given six months or less to live who got kicked out of hospice because their health improved unexpectedly. This includes the humorist Art Buchwald, who left hospice when he didn’t die from kidney failure and lived long enough to write his last book.

But then, with the quality-of-life ethic taking hold in medicine throughout the West, a “follow the science!” approach would make it much easier for clinicians, socialized-medicine bean counters, and family to abandon frail patients to comfort-care-only regimens — or worse — and still get a good night’s sleep.

I want to live, make sure that guy wrote it down properly.

This article was sent to me by its author. It was published on her blog: What the Cleaning Lady Thinks on August 8.

First of all, I apologize. I apologize for not “classing up” my language enough to say this in a way those who predominate in our political class might find acceptable, but I think the Health Ministry of our province is pushing euthanasia for the elderly and people with disabilities because it’s cheaper. Or more profitable. However you want to look at it.

The Health Ministry is inappropriately extrapolating DNR orders to limit other life saving treatments for certain patients deemed disposable based on arbitrary criteria. In other words, a person can have a Do Not Resuscitate Order using CPR because such a rescue might be considered by the physician as futile or that it would cause more harm but that shouldn’t automatically preclude the patient from receiving other successful life-saving treatment.

My father is laid in the hospital bed with his multi-striped house robe on, tied at the waist with a sash over his hospital pajamas. He is thin, his arms and legs are like a child’s, his body is deteriorating, but his face is as calm as a judge’s as he shrugs his shoulders, and he blinks at me through his gold wired eyeglasses, “I want to live, you better tell them, go on, make sure that guy wrote it down properly.”

Yesterday a young doctor came to my 87-year-old father on my visit to the hospital and asked my father why he wanted to live. He asked this because my father, being of sound mind and currently medically stable, had opted to continue taking life-saving medication to prevent, or at least alleviate the symptoms, of his episodic illness. The young doctor was assigned to write my father’s wishes for what should be done by the medical professionals for my father if he should become ill again. The young Chinese doctor seemed exasperated by my father’s decision. My father felt compelled to tell the doctor that he wants to live for his family and most especially for his grandchildren. The young doctor said, “OK, but that means you will be getting far more service than almost anyone else in this ward.” And he extended his arm to wave to the hallway of all the rooms full of elderly patients.

The doctor said that he was “pretty sure it’s o.k,” but he advised my father that a lot of care homes won’t accept people “who want to continue treatment like that.” He said he would have to check if the care home my father is being sent to would accept my father given that he chooses to live.

My father sat in the chair by his hospital bed with his worn book of bible quotations on his lap. My father’s fingers never left the page as he spoke to the doctor as if drawing strength from the page.

At the same time, I could see a female patient, who also just happened to be Chinese, who was older than my father – who seemed to be one of the very very old – being helped by a team to walk up and down the hallway from her hospital room. And a young Chinese nurse spoke to her, in a Chinese accent, “You must walk so you can get better.” With a lovely emphasis on the word “better” as though the nurse was speaking gently to a child.

When I asked why my father could not similarly walk for exercise and was told by one nurse he was required to stay in his room due to the current Covid-19 policies, the nurse told me that the elderly female patient was a foreign resident and therefore able to pay for private care and there was as the nurse put it, “a big big difference” between public and private care.

The deadly Quality of Life ethic

This article was published by First Things on July 6, 2020

Wesley Smith

By Wesley J Smith

Something evil happened recently in Austin. Michael Hickson, a forty-six-year-old African-American man with quadriplegia and a serious brain injury, was refused treatment at St. David’s Hospital South Austin while ill with COVID-19. The hospital withheld his tube-supplied food and water despite the objections of his wife, Melissa—and even though Michael might have survived the illness with the medical care generally provided COVID patients. Michael died on June 11 because his doctors did not believe he had a sufficient “quality of life” to justify curative treatment, and that because of his disabilities, saving his life was “futile.”

Michael Hickson

Here’s the backstory: In 2017, Michael experienced brain injury after cardiac arrest. He was quadriplegic and had seizures. But he was conscious and, according to Melissa, able to do math calculations and answer trivia questions. Wasn’t his life as precious as everybody else’s? Not according to Michael's doctors. When Michael became sick with coronavirus, his doctor informed Melissa that treatment would not improve the quality of his life (meaning, he would remain quadriplegic and cognitively disabled if he survived), so the medical team “and the state,” through a court-appointed guardian, had decided all treatment except hospice comfort care should end.

Melissa was unable legally to save her husband’s life by insisting that he receive proper care. Having been appointed Michael’s temporary guardian, she was in a legal struggle with Michael’s sister over his custody, a dispute that predated Michael’s hospitalization. Family Eldercare, a nonprofit agency, had been appointed interim guardian until a final decision could be made about permanent guardianship. Doctors convinced Family Eldercare to approve Michael’s transfer to hospice care even though he was breathing on his own. Michael died of pneumonia after six days on hospice, the withdrawal of artificial nutrition and hydration having no doubt weakened his body’s ability to fight disease. Even without pneumonia, Michael would have soon died of dehydration.

Please note that this wasn’t a case of triage, a sad necessity required by a lack of resources in a time of pandemic emergency. Nor was it a situation of doctor said/wife said. Melissa recorded her conversation with the unnamed physician and posted it on YouTube so we can all hear for ourselves what families in these circumstances too often experience when dealing with the healthcare needs of disabled and elderly patients.

Here’s the substance of the conversation from the YouTube transcript, with my commentary.

Doctor: At this point, the decision is, do we want to be extremely aggressive with his care or do we feel like this will be futile? And the big question of futility is one that we always question. The issue is: Will this help him improve the quality of life, will this help him improve anything, will it ultimately change the outcome? And the thought is the answer is no to all of those.

Melissa: What would make you say no to all of those?

Doctor: As of right now the quality of life, he doesn’t have much of one.

Melissa: What do you mean? Because he was paralyzed with a brain injury, he doesn’t have a quality of life?

Doctor: Correct

The doctor did not base his decision on the seriousness of Michael’s illness, but on his continuing disability. This is a classic example of applying the invidious “quality of life” ethic, which deems people with disabilities, the elderly, the chronically ill, and the dying to have a lower moral worth than the healthy, able-bodied, and young; this ethic sometimes translates into denying the weak and vulnerable medical care that others would receive readily.

Back to the conversation:

Melissa: Who gets to make that decision whether somebody’s quality of life, if they have a disability that their quality of life is not good?

Doctor: Well, it’s definitely not me. I don’t make that decision. However, will it affect his quality, will it improve his quality of life, and the answer is no.

Melissa: Why wouldn’t it? Being able to live isn’t improving the quality of life?

Doctor: There’s no improvement with being intubated, with a bunch of lines and tubes in your body and being on a ventilator for more than two weeks. Each of our people here have COVID and they are in respiratory failure. They’ve been here for more than two weeks.

A bit later, the doctor says that the decision is not Melissa’s to make.

Melissa: So the fact that you are killing someone doesn’t make sense in your mind?

Doctor: We don’t think it’s killing. Because I don’t know when or if he will die. But at this point I don’t think it would be humane or compassionate to put a breathing tube in this man and do the lines and the tubes and all that stuff because I don’t think it will benefit him.

Melissa: And I totally agree with you on the intubation part of it. I don’t want him intubated. But I also don’t think you should just sit him somewhere to be comfortable until he finally just drifts away. That to me is futile too. That’s saying you’re not trying to save someone’s life. You’re just watching them go. The ship is sailing. I mean that just doesn’t make any sense to me to not try. I don’t get that part. I don’t like that part.

Melissa is not asking for intubation. She is not asking for “everything possible” to be done. Rather, she wants proper care for Michael, which would presumably have included medicines and tube-supplied food and water.

The doctor becomes increasingly tired of the conversation:

Doctor: But what I’m going to tell you is that this is the decision between the medical community and the state.

Melissa: And the state. Forget about his wife and his family and his five kids.

Doctor: I have nothing to do with that.

The recording ends there.

What can we learn from this? First, people should sign advance directives naming legal surrogates who will make medical decisions for them in the event of incapacity. Michael had apparently not done that. Had Melissa been Michael’s legal surrogate, it is very possible he would be alive today, because she would not have consented to his transfer from acute care to hospice.

Second, the quality of life ethic is deadly. When doctors fail to recognize life itself as a good, and only deem as “good” those lives they perceive to be of sufficient quality, the weak and vulnerable are put at material risk.

Finally, our societal attitudes need adjusting. Rather than upholding a quality of life ethic, we should insist that society generally—and medicine specifically—adhere to the sanctity/equality of life ethic, according to which everyone is considered equally valuable and worthy of living and care. This ethic would not force people to accept medical treatment they do not want. But it would keep the most weak and vulnerable among us, people like Michael Hickson, from being pushed out of the lifeboat by doctors who can’t imagine why anyone with quadriplegia and cognitive incapacities should go on living.

Wesley J. Smith is a senior fellow at the Discovery Institute. His latest book is Culture of Death: The Age of “Do Harm” Medicine.

ADAPT of Texas Demands Investigation into Michael Hickson’s Death

Not Dead Yet (NDY) Press Release

Michael Hickson

ADAPT of Texas has issued an Independence Day announcement that disability advocates are holding a vigil at St. David’s South Austin Medical Center to support the family of Michael Hickson, a 46-year old Black man with disabilities who died after being denied COVID-19 treatment. Not Dead Yet applauds ADAPT of Texas’ demand for “A full and immediate investigation of the death of Michael Hickson by state and federal officials including the role of the medical community,” and a meeting with Charles Laird, CEO of the St. David’s facility.

Mr. Hickson’s wife and widow, Melissa Hickson, has recorded a compelling video concerning the hospital’s denial of care for her husband based on negative quality of life judgments about his disability.

Mrs. Hickson has also provided other recordings of her husband’s recovery and statements made to her by a St. David’s doctor expressing blatant and unlawful discrimination. Links to these recordings are includes in an earlier NDY article.

ADAPT’s July 4th Press Advisory and Statement of Demands follow below.

*****PRESS ADVISORY ******

SUBJECT:  Disability Independence and Life Itself Challenged because of COVID 19 rationing. Michael Hickson’s death Outrages ADAPT of Texas

For information:

Nicky – 512 736 4814

Sophia – 512 924 8449

Attached are the demands of ADAPT of Texas.

Currently Texas has no guidance on the rationing of healthcare.

People with disabilities are NOT DISPOSABLE.

Our chant: LIFE WORTHY OF LIFE

1100 South IH 35 * Austin, Texas 78704 * www.adaptoftexas.org

Recently a quadriplegic Michael Hickson died under circumstances that may have resulted from rationing services because of his disability and being tested positive with COVID 19.

This has outraged the ADAPT of Texas Community.

WE DEMAND:

1. A full and immediate investigation into the death of Michael Hickson by state and federal officials including the role of the medical community;

2. Charles Laird, CEO of St. David’s South Austin Medical Center meet with members of the ADAPT of Texas Community. 

July 4, 2020

LIFE WORTHY OF LIFE

PEOPLE WITH DISABILITIES ARE NOT DISPOSIBLE

ADAPT of Texas Protests Hospital Killing of Michael Hickson, A Black Disabled Man

This article was published by Not Dead Yet on June 29, 2020

ADAPT of Texas members protested on June 28th in front of St. David’s Hospital in Austin where they refused treatment and starved to death Michael Hickson, a black disabled man who died on June 11th, 2020.

ADAPT of Texas reported that Michael Hickson was a quadriplegic with a brain injury who was refused treatment for COVID 19 that he acquired in a local nursing home.

A pro-life media outlet reported on Mr. Hickson’s story, including a video of his recovery as he progressed over time, and an audio recording of a doctor explaining the hospital’s decision not to treat him for COVID-19.

. . . Hickson became a quadriplegic in May 2017 after going into sudden cardiac arrest while driving his wife Melissa to work. He received CPR but suffered an anoxic brain injury from the loss of oxygen to his brain. Since that time, he has been conscious and alert, responding to jokes, laughing, shaking his head, singing, and puckering his lips when his wife asked for a kiss over FaceTime. See the video below:

Then in 2020, he contracted COVID-19 from a staff member in his nursing home and developed pneumonia. He was hospitalized at St. David’s South Austin Medical Center, but doctors there refused to treat him, allowing him to die.

In a recorded conversation between the doctor and Melissa, she was told that he would not receive treatment due to his disability:

Doctor: So as of right now, his quality of life — he doesn’t have much of one.

Melissa: What do you mean? Because he’s paralyzed with a brain injury he doesn’t have quality of life?

Doctor: Correct.

A five-minute recording of the conversation is here:

The doctor seems to invoke the infamous Texas futility law, aka the “10-day-rule”, which allows doctors to involuntarily withdraw life-sustaining treatment after giving ten days notice. But it’s not clear how long Mr. Hickson was in the hospital. There’s no indication that even the minimal requirements of the futility law were met. Even if they used a hospital “ethics” committee, it’s highly unlikely that it included any disability rights advocates. (A problem we can all work to address – nothing about us without us!)

There’s also no indication that Austin hospitals had entered a period of shortages that would have triggered COVID-19 triage policies. Even if resource shortages existed in early June, the reasons given for withholding treatment are blatantly and illegally discriminatory under recent federal HHS Office of Civil Rights COVID triage rulings. The latest OCR settlement with the state of Tennessee makes it crystal clear that the Texas hospital’s decision leading to Mr. Hickson’s death violated federal standards.

Based on the information we have, it seems that the hospital used COVID triage and Texas futility policies in combination to try to “justify” a killing that neither policy could do alone. NDY questions the relative lack of media interest in this outrageous killing of a Black disabled man, and the hospital’s cold and cavalier dismissal of his life as unworthy of care. But for the video and audio recordings, this injustice would likely have remained hidden. Our hearts go out to his family for their terrible loss.