Abstract Details

Title ALS Patient and Caregiver Attitudes toward Physician-Assisted Death in California

Topic Pain

Presentation(s) P11 - Poster Session 11 (8:00 AM-9:00 AM)

Poster/Presentation
Number 6-005

Objective To quantify how many Amyotrophic Lateral Sclerosis (ALS) patients and caregivers have considered the End of Life Option Act (EOLOA) and gain insights into reasons for considering the EOLOA.

Background In 2016, the California State Legislature passed the EOLOA which legalized physician assisted death (PAD) in California. Since then, ALS has been the second most common diagnosis for patients using the Act, despite being a rare disease. Yet, how Californian patients with ALS and their caregivers view the Act is unknown.

Design/Methods Prospective cohort study without external control at one ALS center. Data on disease characteristics, demographics, quality of life, depression, and religiosity are also collected, via validated questionnaires as applicable. Descriptive statistics were used to analyze the data.

Results To date, 21 patients and 23 caregivers have filled out the survey, with data collection ongoing. A majority of patients surveyed had heard of the EOLOA or considered the EOLOA (13/21 and 12/21 respectively). Most ALS caregivers had heard of the EOLOA (18/23) but fewer had talked to their loved one about the EOLOA (9/23). Patients most commonly described having intolerable symptoms, being a burden on their loved ones, and losing independence as reasons to consider using the EOLOA. Many patients shared that “their life has purpose” and “they are making the most of their lives” as to why they are not considering the EOLOA.

Conclusions

Pursuing PAD is an incredibly personal decision for each individual patient and an overall rare decision, even in patients with ALS who are over-represented in using PAD. However, this study shows that considering PAD is common in ALS patients, revealing a need for improved communication and support for patients and their caregivers. Additionally, this study highlights the potential for a life with purpose and good quality in patients with a progressive, terminal disease.

Authors/Disclosures
Anna Hauswirth, MD, PhD PRESENTER	No disclosure on file
Hannah George	No disclosure on file
Catherine Lomen-Hoerth, MD, PhD, FAAN (UCSF)	Dr. Lomen-Hoerth has nothing to disclose.

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