DREDF’s Marilyn Golden Files Testimony Opposing California Assisted Suicide Expansion Bill

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Marilyn Golden

California’s assisted suicide expansion bill, SB 380, was on the Assembly Appropriations Committee docket today, with written testimony to be submitted prior to the hearing. DREDF’s Senior Policy Analyst Marilyn Golden submitted the following testimony.

August 14, 2021

OPPOSE SB 380 (Eggman) – End of Life

 The Disability Rights Education & Defense Fund (DREDF) opposes SB 380, a bill that would expand assisted suicide in California.

DREDF, founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities. We are based in the East Bay and have a governmental affairs office in Washington D.C. Pursuant to a decision in 1999 to oppose the legalization of assisted suicide and euthanasia, we have been active against such bills and initiatives in many states.

When the “End of Life Option Act” legalized assisted suicide in California, proponents including Senator Eggman pointed to patient protections such as a 15-day waiting or “cooling off” period, based on the clear medical reality shown in studies that patients who decide to hasten their death often change their minds. For example, the Lancet British medical journal found that almost a third changed their minds within 12 hours! And 60-70% in a month’s time.

The disability community is full of individuals who have been misdiagnosed as terminally ill, but gone on to live full lives after that initial scare. A bad day should not be a death sentence a few hours later!

This Act has extraordinarily little monitoring, data, and investigation of abuse—there’s not even a phone number to call if concerned family members or friends fear their loved one is being coerced. It’s almost as if the law is set up to avoid finding problems.

The annual statistical reports are very minimal for such an important public policy. One example is that assisted suicide laws in Oregon and Washington State require that these states at least make public doctor-reported data on why their patients chose to hasten their death. Might it have been the economic pressures so rampant in our broken, profit-driven health care system? But in California, there is no requirement to report such data on patient reasons. So, this important data is therefore missing from the California reports. We must ask, why?

That is only one example. California also doesn’t report statistics about referrals for psychological evaluations, unlike in other states. There is no data about what happened after ingestion—were there complications? All medical procedures have some complications, but the public is not informed about complications accompanying this important procedure in California. Yet complications have come to light in Oregon. Nevertheless, California is considering removing the End of Life Option Act sunset clause—without any in-depth examination of how the Act has functioned.

Assisted suicide is not about choice when people with disabilities lack access to sufficient medical care. Shouldn’t we be more concerned that poor communities, including our aging and disability communities, as well as Black, Latino, and indigenous communities, often lack even basic primary care, not to mention specialized care such as cancer care, palliative care, and hospice care? Should we not prioritize these before access to lethal drugs?

We urge you to OPPOSE SB 380 (Eggman) and
maintain important safeguards for consumers.

Not Dead Yet submitted a statement supporting this testimony and incorporating from Golden’s op-ed on the problems with the bill:

This rush to erode the safeguards included in the 2015 End of Life Option Act is dangerous public policy. There is simply no data or science to support removing them so soon.

Annual reports on the End of Life Option Act required by the State of California do not contain any data whatsoever detailing complications or patients’ reasons for requesting the lethal drugs. For the limited data that is provided, too much remains listed as “unknown.” Over the past year, due to the COVID pandemic, we have become sadly familiar with how important medical and scientific data are in making informed public policy decisions; especially those involving life and death.

With the benefit of hindsight, it appears that the protections proponents touted as safeguards were no more than a ruse to get the original law passed.

For example, the latest California annual report on the End of Life Option Act released in July 2020 reports that 10% of those requesting the lethal drugs had an “unknown” insurance coverage, and it was “unknown” whether 7% ever received information about available hospice or palliative care options.

In a March 2021 New York Times interview with Dr. Diane E. Wright, longtime Director of the Center to Advance Palliative Care at Mount Sinai Hospital, Dr. Wright noted, “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.”

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The report from advocates who attended the hearing is that “SB 380 has been moved to the Suspense file. The Chair did not take any public comment on bills on suspense and requested all comments to be directed to the committee via writing.” That’s all we know for now.

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