Characterizing Kaiser Permanente Southern California’s Experience With the California End of Life Option Act in the First Year of Implementation

The California End of Life Option Act (EOLOA),¹ which took effect on June 9, 2016, allows qualified adults diagnosed with a terminal disease to request aid-in-dying drugs from their physician. The California Department of Public Health recently published data on 191 individuals who received aid-in-dying prescriptions during the act’s first 6 months.² In response to recommendations for more comprehensive documentation of EOLOA implementation to improve end-of-life care,³ this study describes the experience of a large integrated health system and provides in-depth descriptions of individuals who initiated the EOLOA process.

This study was based in Kaiser Permanente Southern California using data from June 9, 2016, through June 30, 2017, with follow-up through August 20, 2017. An executive EOLOA task force was formed 7 months prior to the EOLOA taking effect with representatives from bioethics, operations, quality, psychiatry, pharmacy, education, nursing, legal, and palliative care to ensure appropriate policy and structures were in place. Key implementation steps included the following: physicians were surveyed about their willingness to participate after viewing an educational video; staff were trained regarding how to manage EOLOA requests; additional training was provided for volunteer physicians; volunteer pharmacists were identified to dispense and provide education on proper use of the medications; and training was provided for dedicated EOLOA-licensed clinical social work coordinators. The primary responsibilities of the EOLOA coordinators were to provide assistance with navigation to patients, perform psychosocial assessments, serve as a resource for health care professionals involved in the care of these patients, ensure the integrity of informed consent and compliance with the legal requirements, and be available for staff debriefing after patient deaths. Data for this study were obtained from electronic medical records, logs maintained by the EOLOA coordinators, and standard state reporting forms. The study was approved by the Kaiser Permanente Southern California institutional review board and informed consent was waived owing to the retrospective nature of the study. Descriptive statistics were performed with SAS statistical software (version 9.3, SAS Institute, Inc).

A total of 379 patients initiated an inquiry from June 9, 2016, through June 30, 2017 (Figure). Of these, 79 (21%) patients died or were too ill to proceed, 61 (16%) were ineligible, and 176 (46%) who were deemed eligible proceeded with their first spoken request to an attending physician. Many of the withdrawals at each step of the EOLOA process were owing to death or patients being too ill. Sixty-eight (74%) of the 92 patients who received the EOLOA drugs ingested them and died within a median of 9 days after the prescription was written. The sociodemographic, clinical, and end-of-life care characteristics of patients who completed the first oral request, proceeded to receive a prescription for the aid-in-dying drugs, and ingested the drugs were for the most part similar (Table). Most patients who initiated EOLOA had cancer (74%) and received care primarily from specialists in the previous 12 months. Ninety-six (55%) patients had an activities of daily living impairment and were on palliative care or hospice at the time of their inquiry. The 2 most common reasons patients cited for pursuing EOLOA were that they did not want to suffer and that they were no longer able to participate in activities that made life enjoyable.

To our knowledge, this is the first detailed report describing the outcome and characteristics of all individuals who initiated the EOLOA process from a large health care system in California. The characteristics of this sample were similar to a recent report² with the exception that a higher percentage of these patients proceeded with ingesting the aid-in-dying drugs (75% vs 59%); this may be owing to the longer follow-up time. Similar to Oregon’s experience,⁴ patients’ end-of-life concerns appear difficult to palliate with the most common cited reasons for pursuing EOLOA being existential suffering, inability to enjoy life, and loss of autonomy.

Corresponding Author: Huong Q. Nguyen, PhD, RN, Department of Research and Evaluation, Kaiser Permanente Southern California, 100 S. Los Robles Ave, Second Floor, Pasadena, CA 91101 (huong.q2.nguyen@kp.org).

Accepted for Publication: November 5, 2017.

Correction: This article was corrected on February 5, 2018,⁵ for an error in wording in the flowchart and again on March 1, 2018, for an error in the Results section.

Published Online: December 26, 2017. doi:10.1001/jamainternmed.2017.7728

Author Contributions: Dr. Nguyen had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: All authors.

Acquisition, analysis, or interpretation of data: Nguyen, Gelman, Bush, Lee.

Drafting of the manuscript: Nguyen, Gelman, Bush, Lee.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Nguyen, Lee.

Administrative, technical, or material support: Gelman, Bush, Kanter.

Study supervision: Nguyen, Kanter.

Conflict of Interest Disclosures: None reported.

Additional Contributions: We thank the EOLOA Task Force members: Paula Goodman-Crews, LCSW (Bioethics), Peter Khang, MD (Geriatrics, Palliative and Continuing Care), Bates Moses, MD (Bioethics), Sunny Lee, PharmD (Pharmacy), Sylvia Everroad, RN, MSN (SCPMG Administration), David Lerman, MD, JD (SCPMG legal), Stephen G. Lee, MPH (SCPMG Consulting and Implementation), Eduard Gelman (SCPMG Consulting and Implementation), Tracey Bush, LCSW (Practice Leader for EOLOA) and the EOLOA social work coordinators for their helpful comments on drafts of the manuscript. We also thank Lindsay-Joe Lyons, LVN, and Gordon Tam, MD, Kaiser Permanente Southern California, for their assistance with the medical chart reviews. They were not compensated. We also thank the patients of Kaiser Permanente and their partnership with us to improve their health.