April 15, 2024

To: California Senate Health and Judiciary Committees

From: Diane Coleman, JD, President & CEO, Not Dead Yet

Re: Letter Opposing Proposed SB 1196 Amendments to the End of Life Option Act

This letter is filed on behalf of Not Dead Yet, a national disability organization headquartered in New York with members in California. We oppose the SB 1196 amendments to the California End of Life Option Act for several reasons.

ELIGIBILITY: First and most importantly, the proposed amendments provide for a greatly expanded eligibility for receiving a lethal prescription, removing the current provision based on a “terminal” diagnosis expected to lead to a natural death within six months. The SB 1196 amendment makes millions more people eligible, people with chronic conditions and disabilities who are nowhere near the “end of life” except for their proposed eligibility for assisted suicide.

SB 1196 specifically provides eligibility for people with a “grievous and irremediable medical condition” defined as “a medical condition that meets all the following criteria:

(A) The condition is a serious and incurable illness or disease.

(B) The condition has placed the individual in a state of irreversible decline in capability and the individual’s suffering is palpable without prospect of improvement.

(C) The condition is causing the individual to endure physical suffering due to the illness, disease, or state of decline that is intolerable to the individual and cannot be relieved in a manner the individual deems acceptable, and there is no proven treatment for the individual’s situation that the individual has not attempted or is willing to attempt due to the nature or side effects of the treatment.

(D) After taking into account all of the individual’s medical circumstances, it is reasonably foreseeable that the condition will become the individual’s natural cause of death. A specific prognosis as to the length of time the person has left to live shall not be required to meet this criteria.

Some U.S. doctors have already been considered overly expansive in finding assisted suicide eligibility under a “terminal” requirement (e.g., the anorexia cases), but problem cases have generally been nearly impossible to identify due to the absence of oversight under statutes adopted in the states involved. A primary rationale for passing these laws has been “they’re going to die soon anyway,” but rather than trying to prevent mistaken “terminal” labels leading to premature death, SB 1196 blows the eligibility for assisted suicide wide open.

In the original bill, Senator Blakespear included “physical or psychological suffering” in the eligibility definition but amended it to “physical suffering.” Despite that revision, it’s difficult to conclude that it really changes anything. The notion that disabled people’s suffering is caused by their disease or injury per se has been at least in part refuted by decades of studies showing that the real issues are social consequences arising from bigotry and poverty. It’s understandable that people who acquire disabilities blame their condition rather than society for the social rejection and countless forms of exclusion they experience, but it doesn’t justify society now assisting their suicide rather than correcting society’s failures.

A similar eligibility expansion occurred in Canada in 2021. Canadian press has since reported on disabled individuals getting euthanasia by lethal injection when they want to die because they can’t get housing or otherwise can’t afford to live on government payments.

Moreover, reported data from Oregon shows that the top five reasons doctors give for their patients’ assisted suicide requests are not pain or fear of future pain, but psycho-social issues that pertain to disability. Three of these (losing autonomy, losing dignity, burden on family) could be addressed by consumer-directed in-home personal care services, but the assisted suicide law operates as though the person’s reasons don’t matter, and nothing need be done to address them. Doctors are also unlikely to inform patients about services they know little to nothing about.

SB 1196 also proposes to add dementia as an eligible diagnosis, regardless of whether the elements of the definition are met. This diagnosis greatly increases the risk that the individual will be subjected to undue influence or pressure to hasten their death even though the disease is not causing physical suffering or is not intolerable to the individual. Many people with dementia are content. Especially in the context of dementia, it’s important to note that none of the medical professionals who certify lack of coercion need to have a longstanding relationship with the patient. Even the attending physician may have been brought in only to provide services related to assisted suicide. The witnesses needn’t know the person either but can just check their identity. They are unlikely to be able to identify undue influence or outright coercion, making the danger of such pressures too great.

WAITING PERIOD. Equally concerning about SB 1196 is the elimination of the “waiting” or reflection period between oral requests for lethal drugs. Research shows that depression is a common reaction to a diagnosis that involves losses in function or changes in lifestyle. It takes time for anti-depressants to work. Insufficient health care and in-home personal care services can also lead to despair. it takes time to put services in place. There is no excuse for abandoning people by hastening their deaths rather than addressing their needs. When this happens, it’s not compassion, it’s cruelty.

SELF-ADMINISTRATION. SB 1196 would allow lethal drugs to be administered by intravenous infusion. This is described to be by way of a device put in place to allow the patient to perform an act that delivers the drugs. (Dr. Jack Kevorkian developed a device that allowed his “patients” to push a button for the same purpose.)

In the absence of oral consumption of lethal drugs, the opportunities for elder abuse by another administering the drugs are increased. In about half the reported Oregon cases, there is no independent witness to consent or self-administration at the time of ingestion of the lethal drugs. According to the National Council on Aging:

Approximately one in 10 Americans aged 60+ have experienced some form of elder abuse. Some estimates range as high as five million elders who are abused each year. One study estimated that only one in 24 cases of abuse are reported to authorities.

If the lethal drugs were, in some cases, administered by others without consent, no one would know.

OTHER ABUSES: One of the most frequently repeated claims by proponents of assisted suicide laws is that there has not been “a single documented case of abuse or misuse.” To the contrary, please see this list of cases compiled by the California based Disability Rights Education and Defense Fund, Oregon and Washington State Abuses and Complications.

HEALTHCARE DISPARITIES: Research on healthcare disparities has also shown that medical providers are not immune to prevailing social biases. Making assisted suicide part of “health care” and designating doctors as its gatekeepers and administrators could only further undermine patient safety, particularly for older adults, disabled people, Black, indigenous, communities of color and other multiply marginalized people who already experience life threatening healthcare discrimination.

“GOOD FAITH” CULPABILITY STANDARD: And legislators, particularly on the Judiciary Committee, should readily see the problem with the “good faith” standard of culpability for violations of the bill’s provisions. A claim of “good faith” renders any so-called safeguards unenforceable, empty and meaningless.

Sincerely,

Diane Coleman, JD, President & CEO