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California presents 2021 Data Report

California has released its 2021 aid-in-dying data report. See also below for the file itself.

Lonny Shavelson, MD Chair of American Clinicians Academy on Medical Aid in Dying said the following on it:

The California data is somewhat useful in showing general trends, which are positive, with increased use of the End of Life Option Act, consistent hospice care for aid-in-dying patients (91.6%), high-level use of more recent  pharmacology, and more. But the validity of the numbers and accuracy and utility of the information is, in my opinion, questionable.

An example: Education level (77% some college and above) and ethnicity (86% white). The most accurate reporting of these qualities is known to be by “self-reporting” — obviously not possible for our patients after they’ve died. So the California information is obtained from death certificates, as reported by funeral home staff. A report by the Agency for Healthcare Research and Policy states that, “Death certificate race data is often recorded by coroners, funeral directors or medical examiners based on the decedent’s appearance or other information. There may be hesitation to ask the next-of-kin questions about the decedent’s race, and if the question is asked, the proxy may not answer as the decedent would have.” So the very-much discussed “fact” that “aid in dying is mostly for rich, highly educated white people” should be viewed as an uncertain and unverified conclusion. I’m not saying there is no such trend, but the percentage numbers are not reliable. We aid-in-dying clinicians have a lot of work to do to improve care for diverse ethnicities, and it would be wonderful to have accurate data about how we’re doing. But the annual state report does not provide this. 

The California Department of Health states that it “…received forms from 767 individuals who started the end-of-life process.” This is misleading, since the forms are sent in by physicians, not the patients or their families who have “started the end-of-life process.” In my conversations with many doctors, they send in the forms only if they either write the prescription (uncommon) or the patient takes the aid-in-dying medications (more common). The California data, then, is not about patients who “started the end-of-life process,” but about physicians who wrote prescriptions for aid-in-dying medications, or whose patients died by taking them (and for 25.1%, the ingestion status is listed as “unknown”). As best practices in aid in dying have improved each year since 2016, many more doctors do not write the prescription for aid-in-dying medications until the patient is actually ready to take them. So health department year-to-year comparisons of the number of prescriptions written as in indication of aid-in-dying participation is minimally accurate. 

Another unknown is the number of doctors who participate in aid in dying but do not file state reports.  Over time, it is likely that this number is increasing — although, of course, there is no data to verify that. So the small but significant aid-in-dying annual increases in the state report are likely an undercount. 

To be clear — I am grateful to the Department of Health and their workers for these annual reports. They are fulfilling their mandated data gathering as required by the End of Life Option Act. But clinical aid-in-dying care has increasingly moved to evidence-based practices, so the data we have access to must improve. I welcome a discussion about how this might be done, and how the Academy could be helpful in moving this forward.