When confronted with terminal illness, many worry about pain, loss of control, and being a burden to their family. While palliative care already lightens these burdens, California passed the End of Life Options Act (EOLA) in 2016, permitting terminal patients to request a lethal dose of medications from their physician. As a neurologist, I know the desperation that drove the passage of this law. But, our current law lacks transparency or accountability, and Senate Bill 380 by Sen. Susan Eggman (D-Stockton) would make changes to the law, ultimately removing safeguards and making changes that are dangerous and unnecessary.
End of Life Options Act collects minimal information, so we have no idea of success or abuse. Critics worry that patients may be coerced into requesting physician-assisted suicide (PAS) by family, friends or even health plans. Under a similar law in Oregon, MediCaid refused to pay for certain cancer treatments, but instead offered PAS as a cheaper option. Have similar abuses occurred here? Limited state-collected data makes it impossible to know.
So far, 2,858 people have received prescriptions under EOLA and 1,816 actually decided to take the dosage and die, according to the California Department of Public Health (CDPH). CDPH revealed at a public hearing in 2018 that physicians and others do not comply with the law, but the state has no enforcement activity to ensure compliance. This leaves us with incomplete information at best, and non-existent information at the worst.
Physicians may file incomplete or inaccurate forms, and whether an illness is terminal is not verified in any way, while other data like race and educational level are reported by CDPH but are not even submitted by physicians on the state forms. Was the patient able to make this decision? Were they coerced or pressured by family or a nursing home because they were inconvenient? Only a check box on the state form tells you, with no means of verification. Yet physicians, witnesses, and others remain completely protected under the law, with no external oversight. Other states have much more oversight and accountability.
Per CDPH, a health care provider attends while the patient takes the lethal dosage only 43% of the time, but whether a healthcare provider is present or not, no data is reported on complications like vomiting, choking, seizures or other causes of suffering before death.
Lastly, CDPH admits to destroying collected data every 3 years, although not required under the law. Right now, we don’t know if people are being coerced into using the EOLA, or experiencing complications from the drug overdose. We don’t have any verification of any data under the law and while data is collected, much is not reported or disclosed publicly. The current bill, SB 380 removes safeguards and repeals the sunset provision, extending the current law permanently. Californians should demand more transparency and accountability, not less.