We just learned that Lisa Blumberg’s excellent op-ed about the dangers of California’s assisted suicide expansion bill was published in Inside Sources on September 13. Four months earlier, Marilyn Golden’s op-ed in Capitol Weekly was also published. DREDF as well as Disability Rights California and others worked to oppose SB 380’s reductions in the minimal protections under the state’s assisted suicide law. Unfortunately, SB 380 was signed into law on October 5th. Proponents of assisted suicide laws will continue pushing to dismantle the limited patient safety provisions in these laws, so we encourage readers to read Lisa Blumberg’s newest published article below and prepare for the advocacy needed next.
California is on the precipice of expanding its assisted suicide law which will have lethal consequences for many people.
State Senate Bill 380, if enacted, would weaken the few requirements that must be met before a person diagnosed as terminally ill can be prescribed death-inducing drugs under the state’s five-year-old assisted suicide law. This legislative effort is misguided and disturbing, but not surprising. Dr. Diane Meier, a palliative care specialist, has said in regard to legalized assisted suicide, “All the heartfelt adherence to restrictions that are announced when you first get the public to vote in favor of this go up in smoke once the practice is validated.” It is a deadly bait and switch.
The bill would reduce the minimum waiting period between a patient’s required first and second oral request for lethal drugs from 15 days to 48 hours. That would mean a person who is distraught but considered mentally competent by his doctors could make the first oral request on a Monday morning, the second on Wednesday morning, make a written request immediately thereaer and receive and ingest the death- inducing drugs by Wednesday evening. Ironically, the process of receiving and taking a lethal prescription could take less time than for the drugs to work. It has occasionally taken people up to 72 hours to die with the drugs having bad side eects. Reducing the waiting period discounts and indeed mocks the profound, irreversible nature of causing one’s own death.
Oregon data indicate uncontrollable pain is not a primary reason that people request lethal prescriptions. Instead, it is open for psychosocial or existential reasons such as perceived lessening of autonomy or feelings of being a burden. Reducing the minimum timeframe between requests decreases the time for reflection. It increases the likelihood that a decision could be made on impulse, due to a mood swing, at the stray suggestion of another, a rough patch in treatment or the stopping of treatment, a stressor such as the death of a spouse, or a significant practical issue such as a lapse in aide support. There can be any number of triggers for despair that a person may work through if given time.
The argument has been made that the present 15-day timeline is too long because some people die natural deaths before being able to obtain deadly pills. Proponents give no reason why, if someone is so close to death, a non-FDA-approved oral drug cocktail is preferable to palliative care or, at a person’s request, sedation. Moreover, a prognosis of imminent death can simply be wrong. For example, one study found 15 percent of critical care patients thought to be dying survived unexpectedly, even when predicted to die by all medical caretakers.
One of the large unanswered questions is, of course, how can a person’s competency and the informed and voluntary nature of his decision be determined if the timelines are so short and the person so ill.
Moreover, while the public sees assisted suicide as applying to long-term conditions like cancer and heart disease at terminal stages, shortening the process could cause assisted suicide to be seen as applicable to critical conditions that arise suddenly or traumatically such as major wounds, burns or raging infections and, indeed, self-inflicted injuries. The possible implications of fast-tracking assisted suicide do not appear to have been considered.
Groups that support Senate Bill 380 owe it to society to be candid about why they think the present law needs to be expanded. Do they now promote assisted suicide as a principal alternative to the difficulties of progressive illness rather than the course of last resort that they once portrayed it to be?
California opened up Pandora’s Box by legalizing assisted suicide. Senate Bill 380 would fling it wide.
About the Author
Lisa Blumberg is a lawyer, writer, and disability rights activist. She wrote this for InsideSources.com.
Joint Committee on Public Health Public Hearing: End of Life Options – Submitted by Lindsay Baran
October 1, 2021
I would like to thank you for the opportunity to testify today. My name is Lindsay Baran, and I work as the Policy Director for the National Council on Independent Living (NCIL), a national cross-disability, grassroots organization run by and for people with disabilities. We stand with many other national and Massachusetts-based disability rights organizations in opposing An Act relative to end of life options (H. 2381 and S. 1384).
The disability rights community has long believed physician assisted suicide laws pose grave risks to disabled people. For people experiencing terminal illness, disability almost always accompanies that process, and the resulting functional losses become pivotal in the decision-making process. Disability is an inextricable piece of this conversation.
There’s a whole list of reasons why we oppose assisted suicide. What I’d like to briefly address today is the significant risk of abuse disabled folks face when assisted suicide is legal. Disabled people and older adults are at much higher risk of abuse, coercion, and exploitation. All these risks are heightened in the face of assisted suicide being legalized, and the safeguards people claim exist are truly insufficient when it comes to protecting people who are already vulnerable.
While proponents of legalizing assisted suicide claim safeguards will prevent abuse from occurring, the truth is these safeguards are incredibly ineffective. When coupled with problematic monitoring and a lack of meaningful oversight and enforcement mechanisms, they may as well be nonexistent. Proponents will tell you abuse of these laws are rare, but the truth of the matter is, this system was not set up to find them.
In Oregon, for instance, when concerns about abuses were raised, Dr. Katrina Hedberg of their Department of Human Services said: “We are not given the resources to investigate.” And not only that – she added “not only do we not have the resources to do it, but we do not have any legal authority to insert ourselves.”[1]
Abuse of disabled people and older adults was on the rise before the COVID-19 pandemic, and it has increased even more since. If assisted suicide becomes legal, an heir, an abusive caregiver, anyone can steer someone toward assisted suicide. They can serve as one of the witnesses to the request. They can pick up the lethal dose. They can administer the drug. Who would know? No witnesses are required at the death, and with no resources or authority to investigate concerns – and therefore, no real safeguards – there are no real protections in place.
Assisted suicide is often hailed as strengthening autonomy and increasing people’s choices. That is a beautiful ideal. But when people facing terminal diagnoses face emotional or financial pressures from family or caregivers – or worse – that does not reflect the unfortunate reality.
I urge you to listen to our concerns and the concerns of your own disabled constituents. Where assisted suicide is legal, there is no doubt that some people’s lives will be ended by coercion and abuse. We’ve seen it happen. It will happen again. And until we can be sure that it won’t, assisted suicide laws are dangerous for disabled people, and they’re bad for the Commonwealth of Massachusetts.
Massachusetts Public Health Committee hearing on the state’s assisted suicide bill:
John B. Kelly Oral Testimony against EOLA H.2381/S.1384 October 1, 2021
John B. Kelly
Thank you. Everyone knows that doctors make mistakes, and studies show that 12 to 15 percent of people outlive the six-month hospice benefit for supposedly terminal people. But this year Oregon revealed that only 4 percent of its program participants have lived past six months. This suggests that a substantial number, up to one in 10!, ended their lives prematurely because they trusted their terminal diagnosis. For someone who barely escaped a terminal MISdiagnosis with their life, see the 2011 Boston Globe letter by Jeanette Hall. No one would tolerate any other elective, so-called “medical practice” this deadly.
The 2012 ballot question on assisted suicide shows a class and race/ethnic divide: wealthier towns in favor, more working-class towns, both white and of color, against. Brookline 67% in favor, heavily Latinx Lawrence 69% against. Black and Latinx people have long opposed assisted suicide by more than 2 to 1, and often have a well-earned mistrust of the medical system. These laws make dominant the outlook of a professional class obsessed with individual achievement, autonomy, and status – thus the constant use of the word “dignity,” over the worldview of a working-class that relies on a family support system, connection, and reverence for elders. By undermining the value placed on old, ill, and disabled people, these laws promote writing off people as having too low a quality-of-life.
I would like to point to the overwhelming oppression of people living with disabilities. Mainstream reactions to the death toll of COVID-19 were filled with reassurances like “only old and fragile people are dying, we don’t need to worry.”
People like me serve as examples of better dead than disabled in movies like “Me Before You,” “Whose Life Is It Anyway?,” and “The Sea Inside.”
The Oregon reports show that assisted suicide isn’t about physical pain, it’s about escaping the “existential distress” that some people experience over depending on others, of feeling undignified and like a burden, of being incontinent. As leading purveyor of assisted suicide Lonny Shavelson told the Washington Post in 2016, “It’s almost never about pain. It’s about dignity and control.” Shavelson should know, he is the chair of the newly formed American Clinicians Academy on Medical Aid in Dying.
As someone paralyzed below the shoulders, I am terrified of the prospect of a state law sponsoring people’s suicides as rational responses to disability. Massachusetts should instead fully fund home care and provide world-class palliative care. Equality under the law depends on it.
ARTICLES REFERENCED
Jeanette Hall, “She pushed for legal right to die, and – thankfully – was rebuffed,” letter to the editor, Boston Globe, October 4, 2011.
Pamela Harris, et al., “Can Hospices Predict which Patients Will Die within Six Months?,” J Palliat Med. 2014 Aug 1; 17(8): 894–898. doi: 10.1089/jpm.2013.0631.
NYAIL is the New York Association on Independent Living, a statewide, not-for-profit membership association created by and composed of Independent Living Centers across New York State. I was honored to receive NYAIL’s 2021 David Veatch Advocacy Achievement Award on September 29th. Below are my words of gratitude spoken at their virtual conference.
Diane Coleman’s NYAIL Award Remarks
Diane Coleman – white woman with breathing mask & red sweater
It’s such a tremendous honor and I can’t tell you how moved I am by your kind words.
NYAIL is really a role model for disability activism on the issues Not Dead Yet addresses. First, there’s the more public and recognized work in opposing assisted suicide laws. NYAIL’s policy statement is a great piece to share with legislators. NYAIL and CIL leaders like Meghan Parker and Cliff Perez have also published opinion pieces opposing these laws in mainstream newspapers, explaining the dangers they pose to people with disabilities. Many of you have testified and organized turn out in advocacy events to ensure this message is heard.
What’s less obvious is the breadth and depth of NYAIL’s and all of your work on access to healthcare and home and community based services, much of which overlaps with NDY’s efforts to ensure that life-sustaining medical treatment is never involuntarily withheld from an individual. We oppose insurers deciding who gets what care based on quality of life judgments using QALYs and similar measures. We object to healthcare providers urging the attitude of better dead than disabled as grounds for rushing to judgment and pulling the plug after an injury. And we don’t want to see despair over the struggle for in home personal care services cause people to give up hope.
As many of you know, the disability community recently lost a fierce warrior, and I lost a personal companion in this work, Marilyn Golden of the Disability Rights Education and Defense Fund. At one point, she composed these words I’d like to share to express her reasons for devoting so much of herself to the assisted suicide issue: “If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or even proposed, that can prevent this outcome, which can never be undone.”
So thank you NYAIL and all of you for the privilege of working along side you and I look forward to continuing together in the fight for our lives.
