Two years after California enacted a right-to-die law, more residents are using it – but they tend to be white and well-educated.
This suggests that more Californians are becoming aware of the law, but that it may not readily available to everyone. Or perhaps patients and their doctors are opposed to it, or are daunted by the complexity of the law, which allows a terminally ill adult with a six-month prognosis to obtain aid-in-dying drugs from a physician.
New state data shows that 374 residents died from ingesting aid-in-dying drugs in 2017, a rate of 13.5 per 10,000 total deaths.
That compares to 111 who died during the first six months that the law was in place in 2016, a rate that’s less than half, or 6.06 per 10,000 total deaths, of 2017 levels.
And while everyone risks feeling pain and suffering while dying, the participants were overwhelmingly — 89 percent – white. Nearly three-quarters, or 73 percent, had at least some level of college education.
But minorities and people with only a high school education make use of the law in very low numbers. Asians (4.9 percent) and Hispanics (4 percent) were much less likely to participate. None of the participants were African-American. One-quarter had no more than a high school education. It is a trend also seen in other states that have a similar law, such as Oregon.
This report about the End of Life Options Act, based on data reported by physicians to the California Department of Public Health, suggests that Californians are increasingly familiar with the law, so additional people are using it. It was enacted on June 9, 2016.
“The law has been in place a little longer, so more people are becoming aware of it and healthcare professionals are getting their processes and procedures in place,” said attorney Judy Thomas, CEO of the Sacramento-based Coalition for Compassionate Care of California.
The new data puts to rest the fear that the disadvantaged would be pressured into dying.
But it also points to the need to study why the state’s large Asian, Latino and African-American communities don’t participate.
There are many possible explanations for this difference, said Patricia King, emeritus professor of law, medicine, ethics and public policy at Georgetown University Law Center.
“Religious views about what is acceptable could play a role,” she said.
When the law passed, Los Angeles Archbishop Jose Gomez, the highest-ranking Hispanic bishop in the nation, warned that it would “worsen the inequalities in our health care system. The poor and elderly already have far fewer treatment options and far less access to palliative care and nursing home services,” he said in a statement.
Additionally, African Americans and other minorities have had experiences that foster distrust of physicians and the health care system, King said. Patients recall the federal government’s study of untreated syphilis of African American men at the Tuskegee Institute, or research involving Henrietta Lacks, the African American mother and tobacco farmer whose aggressive cervical cancer cells were harvested without her consent.
And there are racial disparities in access to a personal physician.
“If you don’t have physician that you have an interaction with,” she said, “physician-assisted aid-in-dying may be more difficult to obtain.”
Alternatively, patients and their families may be overwhelmed by the multi-step process. Before a doctor can prescribe lethal drugs, a patient 18 or older must make two oral and one written request. The law also requires a diagnosis that the person has less than six months to live and that the person can take the drugs without help from anyone.
”There is a disconnect between the way people imagine this law working, and the way it does work,” said Thomas, whose organization manages a statewide partnership of healthcare providers, state agencies and other groups that advances the cause of palliative care.
“They think they can walk in and make a request and walk out with a prescription,” she said. “But it requires multiple steps, a waiting period and at least two doctors and a pharmacist, often a care coordinator and a social worker.”
“It takes awhile to navigate the process to get from beginning to end,” Thomas said.
Finally, affluent and educated Californians may feel more comfortable asserting their wishes, said King.
“If you are medium- to high-income and college educated, you feel more confident in your right to control your own life,” she said. “There is a strong autonomy focus. Those who feel empowered are more likely to add this as one of the options in their mind.”
Of the 374 individuals who died in 2017, 90 percent were at least 60 years old. The median age was 74 years. About 83 percent were already enrolled in hospice or palliative care.
Over two-thirds of the participants had cancer, with the most common type being lung cancer. Neurological disorders such as Amyotrophic Lateral Sclerosis and Parkinson’s accounted for the second largest underlying illness grouping, totaling 9.4 percent. Other illnesses included cardiovascular diseases (8.0 percent), chronic lower respiratory diseases (4.5 percent) and cerebrovascular diseases, such as stroke (3.7 percent).
Meanwhile, even as more patients are aware of the law, a flurry of legal rulings this spring has generated confusion regarding its status.
On May 15, Judge Daniel Ottolia of the Riverside County Superior Court ruled that the law was invalid because it exceeded the scope of health care issues being considered at the legislative session in which it was passed.
But a state Court of Appeals temporarily reinstated California’s right-to-die law, as it considers the constitutionality of its route to passage. That means the two-year-old End of Life Options Act can stand — once again available for dying patients — pending a future ruling by the court.
On June 29, there will be a hearing to consider a motion, filed by the attorney general, to vacate the ruling,
But the fight likely won’t stop there. Experts predict that the law will end up at the state’s Supreme Court. If the courts strike down the law, proponents say they’ll take the emotional campaign back to the Legislature.
Meanwhile, it’s important to do the research that illuminates the reasons behind the demographic divide, said King.
“There are many ways to die. We need a better process to talk about the ways that death can come around,” she said. “One way is not better than another. If we talk to people about dying, we can help them find an option that is compatible with their life views.”
Report: Who is exercising the legal right to die in California?