Assisted suicide, disability discrimination and racial disparities.

This message was sent out by Diane Coleman from Not Dead Yet on Febraury 12. 

On February 8, the Maryland Senate's Judicial Proceedings Committee held a public hearing on a proposed assisted suicide bill (SB0443). That morning prior to the hearing, the Patients Rights Action Fund organized a press conference of opponents. Anita Cameron represented Not Dead Yet and made the following compelling arguments against the bill.

Anita Cameron

Anita Cameron's Press Conference Remarks

I'm Anita Cameron, Director of Minority Outreach for Not Dead Yet, a national disability organization opposed to medical discrimination, healthcare rationing, euthanasia and assisted suicide. 

SB 0443 will put sick people, seniors and disabled people, especially, at risk due to the view of doctors that disabled people have a lower quality of life, therefore leading them to devalue our lives.

In 2021, Lisa Iezzoni, a professor of medicine at Harvard University, conducted a survey of 714 doctors around the country as part of a study. She found "82.4 percent reported that people with significant disability have worse quality of life than nondisabled people. Only 40.7 percent of physicians were very confident about their ability to provide the same quality of care to patients with disability, just 56.5 percent strongly agreed that they welcomed patients with disability into their practices, and 18.1 percent strongly agreed that the health care system often treats these patients unfairly."

Now add race and racial disparities in healthcare to this. Blacks, in particular, receive inferior health care compared to whites in the areas of cardiac care, diabetes, cancer and pain management. Doctors are more likely to write us off as terminal, making us eligible for assisted suicide.

COVID, in particular, has laid bare racial disparities and disability discrimination in healthcare that leads to medical rationing and futility decisions that can end a person's life. Michael Hickson's case is a clear case of discrimination against disabled people.

Michael Hickson was a 46-year-old Black man from Texas, the father of 5 children. Mr. Hickson was a quadriplegic, the result of a brain injury caused by a heart attack. He was placed in a nursing home, where he contracted COVID. He was sent to St. David Hospital, in Austin, Texas. However, due to his disability, the doctors decided not to treat him, stating that he had no quality of life, though family videos show him laughing and singing with his wife and children. He was placed in hospice and allowed to die.

I, too, have personal experience with racial discrimination and disparities in healthcare. The most blatant example of this was when I went to the emergency department last year in intractable pain. A white woman, also in pain, was next to me in the hallway because it was very busy that day. We had the same ER doctor caring for us. She, without asking, got Dilaudid, a potent pain medication, while I got a pat on the shoulder and sent home.

As long as disability discrimination and racial disparities in healthcare exist and as long our broken, profit-driven healthcare system limits people's access to treatment, services and supports, assisted suicide laws like SB 0443 have no place in Maryland.

The answer is not medically assisted suicide.

This article was published in the Quincy Sun on August 18, 2022.

John Kelly

By John Kelly, Director of the disability rights group Second Thoughts

38 years ago an accident left me paralyzed below my shoulders. My father was brokenhearted and wished I had died instead. His hopelessness about my life, however painful for me, was but a simple reflection of widespread prejudice against disabled people.

A few years after my injury, Jack Kevorkian became a sort of folk hero for “helping” terminally ill people die through his “self deliverance” machine. It later came out that more than two thirds of his clients were not terminal at all, but disabled people, primarily women, in psychological distress.

Over time, as medicine has focused increasingly on patient “quality-of-life” as a barometer of life-worthiness, death has been recharacterized as a benefit to an ill or disabled individual. Most physicians (82%, a Harvard study recently found) view our “quality-of-life” as worse. Disability advocates have raised concerns about the fate of disabled people like Oregonian Sarah McSweeney and Texan Michael Hickson. Both wanted to live, both were loved by family and caregivers, but they died after hospital personnel denied them treatment based on their disabilities.

Over the last 25 years first Oregon, then additional states and Washington DC established assisted suicide programs for people expected to die within six months. Proponent rhetoric has focused on compassion for people’s physical pain and suffering, and the hope of a choiceful, peaceful end.

The reality, as shown by the top five reported “end of life concerns” in Oregon, hinge not on pain, but on people’s “existential distress,” as one study termed it, in reaction to the disabling features of their illness: depending on and feeling like a burden on other people, losing abilities, losing the respect of self and others (“loss of dignity”), and shame over incontinence.

Prominent bioethicist Thaddeus Pope concedes that “Everybody who’s using medical aid in dying is disabled. And probably you could go to the next step and say the reason they want medical aid in dying is because of their disability.” To Pope, any disability a patient finds “personally intolerable” is sufficient reason to assist their suicide.

In Massachusetts, assisted suicide bills have been put forward every session for the last 20 years. Proponents proclaim strong public support for the measure, but that support is shallow. In the weeks leading up to the 2012 ballot question on assisted suicide, polls showed 64% support.* The ballot question lost, 51%-49%. Now supporters say that 77% of Massachusetts residents support the bill, based on a poll question seeking compassion for terminally ill people “to end their suffering,” with its implication of physical pain.

State House Speaker Ron Mariano declared “We have a very divided House of Representatives. There’s not a 77 percent affirmative vote in the House right now.”

With the end of the legislative session on July 31, the bill died.

Disability rights advocates appreciate the willingness of many legislators to take our concerns seriously. We worry, with death reframed as a benefit for severely disabled people, that increased legalization will bring expansion of eligibility. Pope points out that the US is unique in the world for limiting assisted suicide to terminal people, and that every other jurisdiction, including Canada, offers euthanasia on demand to non-dying disabled people. He predicts that non-terminal disabled people will become eligible in the US. In Canada, disabled people have been euthanized because they were denied needed care or couldn’t find safe housing for multiple chemical sensitivities.

There are unsolvable problems with all assisted suicide laws. First, real choice resides with insurers, whose bottom line favors delay or denial of treatment. Dr. Brian Callister reported trying to refer two patients for life-saving but expensive procedures in Oregon and California, only to hear that the insurers limited coverage to hospice and assisted suicide.

Second, when people feel they have lost their dignity and feel like a burden on others, they are vulnerable to pressure and outright coercion to sacrifice themselves for others benefit. Abuse yearly affects one in 10 elders, exacerbated by COVID-19 restrictions. A self-interested heir can push a patient to make the request, serve as a witness along with a “friend,” pick up the drugs and, because no disinterested witness is required at the death, administer the drugs themselves. The law grants immunity to anyone who assists in the death who say they acted “in good faith.” Deadly abuse goes unpunished and unnoticed.

Third, terminal prognoses are notoriously inaccurate. NPR reported a few years ago that nearly one in five people who enter hospice survive the six-month benefit. Oregon revealed last year that just 4% of patients live past six months, meaning that the difference between 4% and almost 20% represents the body count of people who weren’t really dying. People who oppose capital punishment because of the inevitability of executing an innocent person should take note.

The 2012 Massachusetts ballot results and the patient demographics in states like California show there is a social class, race, and ethnicity component in the use of and support for assisted suicide. A 2013 Pew Research Center study showed that Blacks oppose assisted suicide by 65%-29%, and Latinos by 65%-32%. Majority Latino Lawrence voted 69% against the 2012 question, while white working class towns like Taunton and Gardner also opposed. Wealthier, whiter Massachusetts towns voted heavily in favor. In California, 94% of reported assisted suicides have been by non-Hispanic whites, more than twice the group’s share of the state population. Almost no black people have used the program.

The answer is to address people’s real needs. That means a fully funded Medicare home care benefit to reduce burden and keep people out of nursing homes. It means more and better palliative care. And for people whose discomfort cannot be otherwise relieved, there is the option of palliative sedation, whereby a person is sedated to the point of comfort while the dying process takes place. The answer is not medically assisted suicide. We disabled people demand full civil and human rights, equal protection under the law, equal suicide prevention, and more respect throughout society.

John B. Kelly is the director of Second Thoughts MA.
*Note to readers: in the hardcopy version of this essay, John Kelly wrote that polls showed 68% support for the 2012 Ballot Question 2 weeks before the election. The relevant Suffolk University poll, however, taken September 17, 2012, shows that support at 64%. We made the change to the accurate number.

Older, ill and disabled people deserve choice-promoting services, not assisted death.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition
 

John Kelly

John Kelly, the director of the disability rights group, Second Thoughts.

On August 12, Kelly wrote an excellent response to Joan Milnes article "Making a final choice about quality-of-life,” published on July 28.

Kelly wrote:

Milnes’s example is her cousin Tony with cystic fibrosis who, at his doctors’ suggestion, had his life-sustaining ventilator turned off because he couldn’t speak or eat. But whereas Tony had the long-established privacy right — regardless of reason — to discontinue any bodily intervention, assisted suicide denies choice and endangers everyone. That’s because real choice resides with insurers, whose profit-maximizing denials of prescribed treatments can make you terminal.

Assisted suicide becomes the cheapest “medical treatment,” a “benefit” to be extended to evermore people. Choice belongs to abusive family and caregivers, who can bully you into requesting the drugs, witness the request, fetch the drugs, and even administer them without worry.

The bill grants complete immunity to anyone involved in the suicide. Doctor misdiagnosis puts 6 million people yearly at risk of severe harm, and 12% to 15% of people with a terminal diagnosis are not really dying. Hundreds of people have needlessly lost years of life to these mistakes. No choice there!

Quality-of-life judgments have fueled proposed state policies to deny disabled people ventilators if there is a shortage, and to deny treatment to people like disabled Texan Michael Hickson, whose hospital denied his family’s request for COVID-19 treatment and allowed him to die.

As someone commonly described as “paralyzed from the neck down,” I am constantly exposed to prejudicial messages that I would be better off dead. In our current crisis, we should be doing all we can to promote mutual aid and interdependence.

Kelly concluded, 

Older, ill and disabled people deserve choice-promoting services and supports like funded home care, not death on the quick and easy.

John B. Kelly is a long-time disability rights advocate and writer in Boston and director of the disability rights group Second Thoughts MA.

Previous articles by John Kelly:

• Assisted suicide: What can seem like dignity can turn out to be anything but (Link).
• Disability rights leaders oppose assisted suicide bill (Link). 
• Massachusetts legislature should reject assisted suicide (Link).

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.