What Are Some Implications of the California End of Life Options Act? An Interview with Sarah Hooper: Part One

Today SevenPonds speaks with Sarah Hooper, the Executive Director of the UCSF/UC Hastings Consortium on Law, Science & Health Policy and Adjunct Professor of Law at UC Hastings College of the Law in San Francisco, California. A recognized expert in medical-legal issues in the area of end-of-life decision making, Sarah has been instrumental in providing clarity around California’s recently implemented End of Life Options Act for both medical professionals and the public at large. Today, she offers us her insights into the new law and its anticipated impact in the state.

Sarah Hooper
Credit UCSF

Kathleen: Thanks so much for speaking with me today, Sarah. I’d like to start out by asking you a little bit about your involvement with the End of Life Options Act. Were you instrumental in drafting the law?

Sarah: No, not at all. I and my colleagues at the Consortium of Law, Science & Health Policy have followed the law closely as it moved through the legislative process, but we were not directly involved in drafting the law or lobbying for or against it. As public educators, our responsibility is to provide information and guidance on the End of Life Options Act now that it has been signed into law by Gov. Brown.

Kathleen: So your role is primarily public education and interpreting public policy?

Sarah: Primarily, yes. The consortium was formed initially as a means of integrating the various disciplines involved in research, policy-making and policy implementation in the areas of elder care, health-care decision-making and end of life. Early in my career, I realized that these issues transcend professional boundaries, and I wanted to help facilitate a more integrated approach to the extraordinarily complex bioethical issues involved. I worked closely with Rebecca Sudore, who has been a pioneer in promoting Advance Health Care Directives and end-of-life planning. This has evolved into a greater emphasis on outreach and public education.

Kathleen: The End of Life Options Act, which gives terminally ill patients in California the right to end their own lives with the help of a physician, was a very hotly debated piece of legislation. Some disability advocacy groups, in particular, objected strongly to the law. What were some of their objections, and do you think there is validity to their concerns?

Sarah: The main concern articulated by those who object to the law is the fear that the process could be abused — that the elderly and the disabled could be pressured into choosing to end their own lives. However, the statute clearly addresses that issue with many built-in safeguards, including a very precise definition of who is eligible to take advantage of the law.

Kathleen: The law only allows persons with a life expectancy of under six months to request aid in dying, is that correct?

Sarah: Yes. The person must have a terminal illness and the prognosis must be certified by two physicians, both of whom must be experts in the patient’s disease. So, for example, if the person requesting aid in dying has cancer, two oncologists must state that his disease is terminal and his life expectancy is six months or less.

Gov. Brown signs the End of Life Options Act
(Credit: vice.com)

Kathleen: Are there other safeguards in place that protect patients who may feel that they are being pressured by others to end their own lives?

Sarah: Yes, there are quite a few. First, patients who wish to request aid in dying must make the request verbally to their attending physician. At that time, the physician is required to ask them if anyone has tried to influence their decision and counsel them on other options that are available, such as hospice and palliative care, social services, and options for managing physical pain. Then the patient must wait at least 15 days and make the verbal request again. After that, they are required to put the request in writing. It’s a long process that requires a great deal of documentation by the patient and the physician, all of which is intended to ensure that the patient is fully informed about their options and is making the request voluntarily. 

Kathleen: Some who object to the law believe that it sends the message that life is not worth living if you have a terminal illness. How would you respond to this?

Sarah: In my opinion, that’s a misguided view. People who choose aid in dying want to live, but that option has been taken away from them. They are not choosing whether to live or die: They are choosing the timing and manner of their deaths.

With that said, I also believe that we as a society do not protect vulnerable populations as well as we can or should. We are making progress with things like hospice, palliative care, and long-term care, but we are still a long way from providing the full spectrum of support services that is needed to help those who are nearing the end of life live in a manner that’s consistent with their wishes and their needs. 

Please come back next week for Part Two of Sarah’s interview.