Access Is Challenge With California End of Life Option Act, Not Abuse
Since California’s End of Life Option Act took effect nearly four years ago, it has enabled hundreds of terminally ill state residents who accessed the law to peacefully end their unbearable suffering. It also has spurred more candid conversations between doctors and terminally ill patients about all end-of-life care options, higher hospice usage rates and improved palliative care training for physicians. Like nearly identical medical aid-in-dying laws across the country, there has not been a single incidence of misuse, abuse or coercion. Instead, eligible patients are unable to access the law because of unnecessary regulatory requirements.
That was the conclusion of a hearing on Feb. 25 by the California Assembly Select Committee on End of Life Health Care to review the results from the implementation of the law, sponsored by Assemblymember Susan Talamantes Eggman with participation from co-sponsors Senator Bill Monning and former Senator Lois Wolk.
The End of Life Option Act gives mentally capable, terminally ill adults with 6 months or less to live the option to request prescription medication they can decide to take to die peacefully in their sleep if their suffering becomes intolerable.
Testimony was given by patients, physicians, advocates, policy experts, researchers and others. Perhaps the most powerful testimony came from the family members whose loved ones benefitted from the law.
However, we heard another equally important message: too many eligible patients were not able to complete the overly cumbersome 13-step process to use the law.
The most commonly cited problematic provision in the law is the 15-day waiting period, which is required before doctors can write the prescription. Fully one-third of terminally ill patients in California who requested the option of medical aid in dying were unable to complete the process, according to a study by Kaiser Permanente Southern California published by the Journal of the American Medical Association (JAMA). To address this obstacle, last session, the Oregon legislature amended their law (SB579) to give doctors permission to waive the 15-day waiting period if the patient’s death is imminent.
Another challenge with the law relates to healthcare provider participation. Patients have reported difficulty finding providers willing to participate. Close to two-thirds of California hospitals (64%) and virtually all religious hospitals (97%) forbid their physicians from writing prescriptions, according to a recent survey of California hospitals published in the Journal of Palliative Medicine. Several states are addressing this challenge by recognizing that other types of healthcare providers are qualified to participate in the law. Five states are advancing legislation that would extend prescribing privileges to practice medical aid in dying to advanced practice registered nurses, and three of those states also are including physician assistants. New Mexico included a provision in its medical aid-in-dying legislation that allows a person who is already on hospice care to obtain just one additional physician certification.
While the hearing certainly outlined ways to improve the California End of Life Option Act, the general feeling at the hearing was one of gratitude to the California lawmakers for authorizing the End of Life Option Act. While relatively few people decide they need medical aid in dying (less than 1%), data confirms that large numbers benefit from the resulting improvements in end of life care and choice that come with the implementation of the law.
Kim Callinan is President and CEO of Compassion & Choices and the Compassion & Choices Action Network, which play a lead role in passing and implementing medical aid-in-dying laws across the country, including California.