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“When we talk about person-centered care and empowering patients, we should consider what that means at the end of life.”
WITH THE END OF LIFE OPTION ACT signed into law by Gov. Jerry Brown last October and taking effect in June 2016, California became the fifth state to legalize physician-assisted dying. The new law allows terminally ill patients to request a prescription for medication that will hasten their death. Restrictions include: a prognosis of six months or less to live; two oral requests for the drugs at least 15 days apart along with one written request, with witnesses; and confirmation by two physicians of the patient’s prognosis and mental competency to make the decision.
While the law appears to have widespread support in California – 65 percent in favor vs. 27 percent opposed, according to a Field Poll published in October 2015 – it also raises concerns, even among supporters.
Dr. Cindy Cain, a medical sociologist and assistant professor in the Fielding School’s Department of Health Policy and Management, studies quality of life issues for older adults, including those at the end of life. Cain heads a Fielding School team that is examining the End of Life Option Act in an effort to educate policymakers, physician groups, and the public about the law, its effects, and what can be learned from the experiences of the states that currently permit physician-aided dying – most notably Oregon, whose 19-year-old Death with Dignity Act served as a model for the California law. Cain spoke with the Fielding School’s Public Health Magazine on these and other issues.
Q: Why is California’s End of Life Option Act so significant?
A: To me, it’s best to think of this law as providing another option within a range of options for people when they get to those last few months of life. The law has implications beyond physician-aided dying by opening up conversations about end-of-life issues. We have to also think about hospice and palliative care, and about what it means to stop curative efforts, and then to support comfort efforts. When we talk about person-centered care and empowering patients, we should consider what that means at the end of life. We need to provide education about these options, have real conversations with people where we talk about what matters most to them, and then find ways to meet those needs for individuals at the end of life.
Q: What do you think the role of public health should be in these efforts?
A: I think our role should be to help gather the necessary data and to take as neutral of a position on these issues as possible. Physician-assisted dying is still a very controversial practice, and we need to know a lot more before we jump to strong conclusions. But public health is uniquely situated, for example, to work with people in medicine to understand how physicians and other providers are viewing the law and its implementation, as well as to understand the patient side, and to bring those two sides into the larger conversation.
Q: You have stated that the new law should be used as an opportunity to improve all forms of end-of-life care. What do you mean by that, and where in particular do you see room for improvement?
A: We do a good job of curing people in the U.S., and we have a very good system of hospice care, as well as a growing system of palliative care. But we don’t do such a great job moving people from the curative side of things to the comfort arena because it’s hard to have those conversations. As a result, patients often move through the system not feeling empowered to make decisions for themselves. More than 40 percent of deaths each year in the U.S. are supported by hospice, but the vast majority of Americans might not be able to tell you when they’d become eligible for hospice, or what hospice care actually does for them. The new law presents an opportunity to bring attention to end-of-life care issues generally.
Q: What are some of the most important lessons to be drawn from Oregon’s experience?
A: There has been a lot of discussion about whether vulnerable populations – including racial and ethnic minorities and people who don’t have a lot of resources – are coerced or subject to undue influence through laws like this. It’s fairly clear from the data so far, though, that most of the people who have taken advantage of Oregon’s Death with Dignity Act are white, highly educated, and have private health insurance. That doesn’t mean we should stop asking the question. We should continue to think about ways that people may be made vulnerable and how this kind of decision-making affects different people.
There are also still questions about how best to implement the law in California. While it’s written to protect providers, it doesn’t include educational or peer-support efforts that would be helpful to them. Research has shown that even among providers who believe physician-aided dying is the right thing to do for qualified patients, many have a difficult time working through the decision-making process and feeling OK about the decision. We need to make more effort on that front.
Q: Some opponents of this type of law raise the concern that it undermines the sanctity of life. Do you think public health has a place in that debate?
A: It’s an important question that’s hard for us to answer in public health, but we do have a role in collecting and providing data for people who want to have such discussions. This also illustrates how important it is for us to have interdisciplinary conversations. It’s not just physicians who should be talking about these issues. We also need to bring in people who have expertise in the spiritual realm; we need to understand how social workers, pharmacists, and others within the health care system think about the ethical dimensions of this; and then we need to expand beyond the health care system to understand how the public thinks about it. This is a societal-level debate, and public health should not sit it out.
Q: How did you become interested in these issues?
A: As a medical sociologist, I have always been interested in the limits to the practice of medicine, and I see death and dying as an important moment when we come up against those limits. I am very interested in the kinds of quality of life issues that come up in hospice, as well as how to support hospice providers. Through my personal experience with loved ones dying, I have also found that I’ve been comfortable talking about these types of issues in a way that many others are not. And so I have been a hospice volunteer for the last eight years, which has given me a great deal of insight into how people at this life stage think about their lives.
Q: What have you learned from your personal encounters in hospice settings that informs how you view the new law?
A: Sometimes we assume that when a law like this passes, everyone is going to rush out and want to take advantage of it, but what I have seen is that the vast majority of people don’t necessarily want to hasten their deaths; they really want to make the best of the life they have left. Hospice and palliative care can work toward alleviating pain and existential suffering, so that people can feel better about their remaining time. But sometimes even with the interventions of hospice and palliative care, we’re not able to completely control those things that cause suffering, and in those situations, laws such as this allow people to have more control and another option at the end of life.
Q: So you see this as a quality of life issue, even though the issue has to do with death?
A: Absolutely. Anything that empowers people and helps them think through what matters most to them improves their quality of life.