After a contentious debate, California’s new physician-assisted suicide law was signed by Gov. Jerry Brown last October. Once it takes effect, it will give terminally ill patients and their doctors a legally sanctioned process to have responsible and compassionate conversations about choices at the end of life. Hospitals and physicians must now develop their own policies for how the new law may be implemented. U Magazine contributor Dan Gordon spoke recently with two physicians at the forefront of these discussions at UCLA: Dr. Neil Wenger, director of the UCLA Health Ethics Center, and Dr. David Wallenstein, a specialist in pain management and palliative medicine.
Both of you are intimately involved in end-of-life issues. What are your views about the new law? Dr. Wallenstein: I am an advocate of patient autonomy. Looking at it from that perspective, I’m relieved that patients are being listened to in this way. In terms of my own personal experience, I became interested in medicine 30 years ago because I was an AIDS volunteer back before there were any treatments available for AIDS and HIV. And there was a great deal of suffering, and many people chose to end their own lives, and they really had no professional guidance in doing this.
So, from that perspective, I’m glad that there now is in California a legally sanctioned process for patients to begin to have these conversations with their physicians. It’s very important for physicians to be able to speak about this issue responsibly and compassionately to patients. It also is a really important point to make in the context of this discussion that data show that in the four states where physician-assisted suicide has been legal (Oregon, Washington, Vermont and Montana), the number of people who actually go through with physician-assisted suicide is really quite small. When patients can talk openly and honestly about these issues with their physicians, it often becomes possible to find other ways to address their fears and concerns, and being able to have these conversations is a great comfort to them. I am hoping this new legislation will facilitate better dialogue between patients and physicians on this difficult issue.
Dr. Wenger: It may very well be that this kind of permission is what’s necessary to open up this dialogue. But there also are some concerns inherent in this issue. One is whether or not a physician should be participating in an activity, the goal of which is to end life. And a second concern is whether or not this might erode trust between some groups of patients and their physicians.
Certain groups at the end of life, especially disenfranchised groups that have had difficulty getting adequate medical care all the way along, have difficulty believing that the right thing to do may be to receive less medical care. And if the physician has ... the consent of the state to actually help provoke death, that is an additional potentially difficult point that may need to be addressed in these rather sticky end-of life discussions. Thus, it is particularly important to be aware of the protections within the law. The law contains many carefully crafted checks and balances. There even is a provision in the California law that isn’t in the Oregon law that requires patients to be taken aside in a closed space, with no one else there, to make sure that they’re not being coerced.
But facilitating the kinds of discussions you encourage perhaps is not a skill that has been taught to physicians in the past, and having to do this may be outside the comfort zone for many. Dr. Wenger: It’s going to take an enormous amount of education for physicians to lead these discussions, and having these conversations is a lengthy process. There are questions that need to be asked not only of the patients, but also of the consultant physician, about when a patient should be referred to a mental health provider for evaluation, how to interact with that mental health provider to know whether or not a patient’s emotional state is encumbering his or her ability to make rational choices. This fits into the broader question of how to teach doctors to do advance care planning. Doctors are just now learning how to do this well. This new law will add greater complexity.
Dr. Wallenstein: When a patient makes a request for physician-assisted suicide, it is incumbent upon the physician to take his or her own beliefs out of the equation while talking with the patient. The physician needs to hear, without judgment, what the patient has to say. That doesn’t mean a physician has to do something that he or she feels is inappropriate or immoral. But the physician does have to have the conversation in such a way that the patient’s feelings and beliefs and needs are heard, genuinely respected and honored as part of the patient’s right to both self-determination and autonomy.
Some opponents of the law expressed concern that there will be people who might be vulnerable to being pressured into making a choice not necessarily in their best interest, and that there are opportunities for abuse. Dr. Wenger: This law has been tested in Oregon (where the state’s Death with Dignity Act went into effect in 1997), and that has not been shown to be a problem. There were a few celebrated news reports of individuals saying that they were feeling coerced. But the fact is that in the nearly 20 years Oregon has had this law, it doesn’t appear that there have been problems among the approximately 850 people who have exercised the option. That said, California is not Oregon; Los Angeles County alone is three times bigger than the entire state. And Oregon doesn’t have nearly the ethnic diversity that we have here. We could potentially have some difficulties that Oregon hasn’t experienced.
Dr. Wallenstein: California is a much more complex and diverse environment, and it will be incumbent upon the physicians here to speak to these issues in a way that’s sensitive to the individual patient’s background.
Are there misconceptions about what this law means for patients and their families? Dr. Wenger: It is written into the law that this does not allow an infusion of medication to kill the patient. It does not allow mercy killing, and the patient has to self-administer the lethal medication. That is a really, really important component, but there could be misunderstandings.
Dr. Wallenstein: There’s another confusion that I have heard and that I think is very important to clear up. The issue of physician-assisted suicide is not, strictly speaking, part of palliative care; it’s a far bigger and more general issue. I am a palliative-care physician, and I do end-of-life care, and I think it is critically important to consider the issue of physician-assisted suicide separate from that of good symptom and pain control.
One of the misconceptions that I have had to deal with is an assumption by many patients — and also by some physicians — that physician-assisted suicide is going to be the exclusive domain of the palliative-care doctor. I think that’s a serious misconception that really needs to be put to rest, not only because it is inaccurate, but also because it conflates the specialty of palliative medicine with the fictional “death panels” that were discussed while the Affordable Care Act was being constructed.
Another thing that I think people need to understand is that this is not an instantaneous process. A patient can’t come in and say, “Hey, I want to die,” and 15 minutes later, it’s done. People need to understand that it’s a very measured and carefully thought-out process.
Dr. Wenger: And it also is important to note that — based on what we have seen in the other states that have legalized physician-assisted suicide — a third or more of the patients who receive the medication ultimately choose not to use it.
What systems currently are in place at UCLA to effectively implement the new law, and what will need to be developed that's maybe not in place right now? Dr. Wenger: We have a lot of very smart doctors at UCLA, and we have really, really good palliative-care physicians, but we haven’t yet figured out the system to implement the law. It is an ongoing discussion that needs to take place. We still don’t know exactly when the law will take effect — probably late in 2016, and recently there’s been talk that it might not happen until 2017. In Oregon, the voters initially approved physician-assisted suicide in 1994, but it wasn’t reaffirmed and implemented until 1997.
What then does UCLA need to do to move this forward? Dr. Wenger: We need to bring together all the parties who will be engaged — doctors, nurses, pharmacists, social workers.
Dr. Wallenstein: Clergy.
Dr. Wenger: Yes, clergy. And patients. That’s how we will attempt to develop policy around this.
For more information, read the End of Life Option Act. This piece has been edited for length. You can read the complete Q&A in U Magazine’s winter 2016 issue.