Head and shoulders photo of Anita Cameron, an African American woman with long dreadlocks and brown sweater.
Some years ago, I wrote why Black folks should join the movement against physician assisted suicide. I spoke of racial disparities in healthcare, the tendency for us to be poor and our lives devalued and the efforts of Compassion and Choices to convince us that we’re being deprived of a basic right.
I spoke about why many Black folks feel that this is a privileged white folks issue that shouldn’t concern us because that isn’t our culture. Many of us are fighting against systemic racism, white supremacy and police violence and don’t have the energy to devote to something they feel doesn’t affect our community.
But, that was before COVID-19. Now we see that it is ravaging communities of color, particularly Black, Indigenous and Latine communities. We’re witnessing and hearing stories of rampant medical discrimination against disabled people and Blacks, in particular.
By now, many of us have heard Michael Hickson’s story. He was the 46 year old Black disabled Texas man who was refused treatment for COVID-19 due to disability, placed in hospice and allowed to die. Dr. Susan Moore, a doctor in Indiana, contracted COVID-19 and suffered racist treatment while in the hospital. She made a video describing her treatment. She later died.
They are just the tip of the iceberg. There are many, many more Dr. Moores and Michael Hicksons.
What does this have to do with doctor assisted suicide?
Compassion and Choices has been pushing for assisted suicide for those who get COVID-19 and pushing to do it through telemedicine visits.
They have made serious inroads into the Black community and have convinced Black nurses that doctor assisted suicide is a benefit that Blacks should take advantage of. There have been incremental increases of Blacks requesting assisted suicide. The more it gets normalized, especially in diverse states, the more those numbers will rise.
Blacks are at risk from assisted suicide laws because racial disparities in healthcare:
1. Lead to limited health choices and poorer health outcomes.
2. Make it more likely that doctors will “write off” patients as terminal.
3. Make it less likely that patients can afford life-saving treatment.
4. Make it less likely that patients will receive adequate pain treatment.
It is imperative that Blacks and Black organizations get involved in the movement against the passage of doctor assisted suicide laws, especially if you are sick, disabled, poor and seniors. Racial disparities in healthcare, as well as the tendency of doctors to devalue the lives of disabled, poor and elderly will push people into doctor assisted suicide. We can’t let this happen to our community.
The virus is surging and the death rate is increasing as the already overburdened health system is in crisis. Yet, there is talk of the legislature again considering a bill to permit doctors to provide lethal prescriptions to terminally ill adults requesting them. This is despite the fact that such bills have stalled in committee five times in the past and due to the pandemic, the legislature may meet virtually for much of the upcoming session. Proponents will be talking about choice and compassion. Let’s separate rhetoric from reality.
Rhetoric: The bill deals with “aid in dying.” Reality: This suggests that the bill would increase access to hospice and palliative care. It would not. It would just enable doctors to give patients a means to end it all. There is quite a difference between a patient deciding when not to have life- prolonging treatment and a doctor actively prescribing lethal drugs for the purpose of directly causing the patient’s death, i.e assisting in a suicide.
As Dr. Joseph Marine, professor at Johns Hopkins University School of Medicine has stated, assisted suicide “is not medical care. It has no basis in medical science or medical tradition… the drug concoctions used to end patients’ lives… come from the euthanasia movement and not from the medical profession or medical research.” In the year after Washington, D.C passed an assisted suicide law, only two doctors signed up to participate.
Rhetoric: The bill is focused on choice and personal autonomy. Reality: Choice implies a level playing field. In our troubled health system where both costs and profits are soaring, a patient’s medical options usually depend on the quality of their insurance (if any). Seniors and people with disabilities struggle with “quality of life” prejudices. People of color endure deadly health disparities, which has certainly made clear in the pandemic. Audrey Chapman, a professor of medical ethics at the University of Connecticut Health Center, supports assisted suicide but paradoxically admits that “One would not want a patient to make a decision because they can’t get appropriate medical care,” though that it precisely the situation many people face.
Rhetoric: People seek to end their lives due to pain. Reality:Oregon data indicates that the leading reasons people request lethal prescriptions are psychosocial factors such as perceived lessening of autonomy, or feeling they are a burden. People with disabilities have shown these issues can be addressed by appropriate social supports if the community has the will.
Rhetoric: The law has safeguards that will prevent abuses. Reality: This is wishful thinking. Nothing can prevent erroneous or vague medical predictions even when two doctors are involved. Moreover the minimal criteria written in to the laws apply only to the prescribing of the lethal drugs. Then the person is on their own. Any mental health evaluation to determine if a person has impaired decision-making capacity is only made when he requests the drugs. No evaluation will be done just prior to taking the drugs although mental state can swing wildly based on physical factors like oxygen level. Disinterested parties need not be present when the drugs are swallowed. The practical, financial and emotional difficulties created by the pandemic have caused both domestic abuse and depression to soar, leading people to do or say things they wouldn’t otherwise. Even in ordinary times, there are bound to be cases here or there where a person falls prey to the strong suggestion of another or is the victim of coercion, trickery or worse.
Rhetoric: Doctor-assisted suicide laws only apply to people who will die soon. Reality: Doctors cannot say conclusively when a person will die, especially when the measure is months. Moreover, what is terminal illness is capable of interpretation. For example, an Oregon health official has opined that conditions can be deemed terminal even if there is lifesaving treatment but the person cannot afford it. This could include diabetes, and other potentially fatal conditions which can be medically managed. Indeed some assisted suicide supporters are advocating dropping any requirement that a “suffering” person’s death be foreseeable and allowing euthanasia as well.
Reality: In-person testimony is an essential part of governmental decision-making. As Connecticut disability activist Cathy Ludlum has stated, especially with controversial issues, legislators must see their constituents in person and witness their passion. If live public hearings cannot be held this winter or if the people most concerned about an assisted suicide bill would not feel safe attending them even if they were held, the legislature must not consider assisted suicide. It’s that simple.
There are many reasons why assisted suicide bills have failed to pass five times in progressive Connecticut. Bringing up the bill again now should be a non-starter.
Lisa Blumberg is a Hartford area attorney, writer and disability activist.
A friend asked if I knew how many people have been medically killed since Covid-19. My answer is that there is no way to know. We know about Michael Hickson and we’re just learning about Sarah McSweeney and perhaps many others from a recent NPR investigation. However, when relatives agree, or at least don’t vociferously disagree, medical killing happens quietly, behind closed doors.
Carol Cleigh Sutton
I’m old enough to remember when advance directives were just getting started (late 1960s) and were highly touted as a matter of choice. The supposition was that this would increase individual choice. We were strongly and repeatedly assured that we could always make the choice to receive all medical care possible and no one would be coerced into signing up for an early death.
Recent reports from the UK and the US indicate that my experience with the medical system pressuring, even forcing DNR orders is not even unusual, much less unique.
When my husband, also a wheelchair user, approached his 80th birthday, it began. Every interaction with the medical system began with their attempting to talk us into placing a DNR in his records. In one case, they went ahead and placed it without permission, or even consultation. Though this was clearly illegal and was reversed when I found out and raised the roof our next contact started the pressure all over again.
Two years ago, I flew to California to be with by brother-in-law whom the hospital believed would not live through the night. Almost the moment I arrived, they started applying the strongest pressure I’ve ever encountered to try to get a DNR from us, even indicating that refusing the DNR wouldn’t matter because they would not perform CPR anyway. In other words, they had already placed a clearly illegal, unwanted de-facto DNR on him.
Both of these men were conscious and competent and both had indicated that they did NOT want a DNR. My role was to advocate for what they wanted. Doing so, I was vilified and repeatedly told that I was unrealistic, stubborn and unable to accept reality. So much for ‘choice.’ Both of these men had health insurance, both were military veterans, one was over 80 and a long-term wheelchair user, the other not yet 60 and had only recently become disabled himself, though his wife is a long-term wheelchair user. Both were white-appearing with Native American ancestry. Both were highly verbal, capable of expressing their wishes. If the medical system was so determined to make them dead that they were willing to take clearly illegal measures, what chance do obviously minority, uninsured, non-verbal and poor people have?
An important and groundbreaking bill, NJ A4519 was introduced into the New Jersey Legislature by Representative Daniel Benson, and cosponsored by Representatives Valerie Huttle and Anthony Verrelli. This bill, “AN ACT concerning the bullying of disabled persons”, will extend the statute of limitations for disabled minors and adults who have been bullied, abused, exploited, and neglected.
Minors will have up to 37 years and those over 18 will have up to 7 years after they realize that damage was done to them for any of the above actions. This is a civil action and actions against vulnerable adults may also be reported to adult protective services and to law enforcement.
Undoubtedly, this will provide a new layer of protection for the disabled and, hopefully, similar legislation will be introduced in other states. Not only will this type of legislation allow victims to be compensated for damage done to them but will also act as a deterrent against future abuses.
Bullying has emerged as a major public health problem displayed in various forms such as verbal, physical and psychological aggression. The effects of childhood bullying can cause problems such as depression, anxiety, PTSD, sleep problems, low grades, physical problems, substance abuse, and even suicide. These effects can reach into adulthood and have a profound effect upon a person’s development and life.
It is estimated that fully 33 percent of all students have been bullied with 25 percent of them experiencing bullying daily. From 37 to 45 percent of adults have been bullied, many in the workplace. These figures increase even more in the disabled population.
Common forms of bullying are name calling such as “re***d” and “cripple,” threats, physical abuse, starting rumors, and social media attacks, etc. Bullying behavior is a civil rights issue and is particularly damaging when childhood bullying follows a person into adulthood and can interfere with many aspects of their life, including social, psychological, academic, and work. Often, the losses experienced cannot be undone, but this legislation will help to compensate the victims.
We urge people in NJ to write to their state legislators to support this bill. People outside NJ are urged to introduce it in other states as well. And please link to this article on disability websites and social media. If this bill becomes law, it will be a major victory in the war against bullying of disabled people!
Assisted Suicide Is Bad Medicine. How Can Legislators Represent Us If They Cannot Talk to Us?
January 11, 2021 (Manchester, CT) – People with disabilities fear for their lives during the pandemic, and like everyone else must socially distance. At the same time, they are increasingly concerned that assisted suicide legislation—which they also see as a threat to their lives—will be introduced during the 2021 session.
In previous years, the grassroots disability rights group, Second Thoughts Connecticut, has launched an energetic protest against these dangerous bills. Members have started the session by leaving informational flyers for every member of the Connecticut General Assembly and the Governor. They have sponsored press conferences and held lobby days at the Capitol. Perhaps most importantly, they have met with legislators one-on-one or in small groups, and come out in force to participate in public hearings.
Things are very different during the pandemic.
With legislators primarily working from home, there is no opportunity to set up appointments at the Legislative Office Building or drop in to talk with legislators or their aides. In the past, aides’ names and email addresses were listed on the webpage of each legislator. Not this year. Legislators receive a huge amount of email, and without aides to help dig through it, not everything gets looked at or responded to.
Members of Second Thoughts Connecticut started contacting key legislators in early December with almost no response. To date, repeated requests to set up Zoom meetings with various legislators regarding the problems inherent in assisted suicide laws have been met with little or no response, and just one meeting has been scheduled.
Time is of the essence.
On Friday, January 15, the Public Health Committee will start identifying bills to bring to a public hearing. Yes, interested people may watch the proceedings on YouTube, but critical elements will be missing. There will be no opportunity to buttonhole legislators, or to show our concern by being present in the audience.
“How can our legislators represent us if they cannot talk to us?” asked Second Thoughts member Lisa Blumberg. “Access to our elected officials is how our democracy works.”
Cathy Ludlum of Second Thoughts Connecticut offered, “People form opinions about assisted suicide based on what they know. If they see it only as a civil right, and are never told about all the things that can go wrong—from misdiagnosis, incorrect or uncertain prognosis, coercion and abuse; to problems with the suicide drugs themselves—how can they make an informed decision?”
She added, “And this is a BIG decision. If assisted suicide passes, it will forever change the way healthcare is provided. At a time when we are already concerned about disparities in healthcare, it will adversely affect people’s lives, especially those of us who are already societally devalued.”
Second Thoughts Connecticut member Stephen Mendelsohn said, “Assisted suicide legislation codifies lethal disability discrimination into law. Some people will get suicide prevention and others suicide assistance, and the difference will be based on their disability status.”
Mendelsohn further explained, “Even the so-called safeguards of ‘six months,’ ‘terminally ill,’ ‘mentally competent,’ and ‘self-administer’ discriminate on the basis of disability and are vulnerable to court challenge. This would lead to expansion to widespread euthanasia. Assisted suicide would also conflict with the State of Connecticut Suicide Prevention Plan 2020-2025, which acknowledges the right of disabled people to equal suicide prevention services.”
Lisa Blumberg went on to say, “Assisted suicide is a very complex issue. Passions run high on both sides, as we saw by the 12-hour public hearings of previous years. This is not the time to make this decision because there is no way people can meet to fully discuss the ins and outs.”
Second Thoughts Connecticut is a grassroots organization of people with disabilities and allies who oppose the legalization of physician-assisted suicide.
