Developing a Physician-Assisted Suicide Program

An Expert Interview With Anthony L. Back, MD

Gabriel Miller; Anthony L. Back, MD

Disclosures

September 24, 2014

Editor's Note: Last year, Seattle Cancer Care Alliance, a comprehensive cancer center in Washington State, published an article[1] in the New England Journal of Medicine outlining the creation and implementation of a physician-assisted suicide program at their center.

In it, the authors describe how they managed 114 patients who inquired about physician-assisted suicide at their center, including 40 patients who received a prescription for a lethal dose of secobarbital and the 24 who ingested the medication. The study found, for example, that the most common reason given by patients who wanted to participate in the physician-assisted suicide program was loss of autonomy, which was cited by 97.2% of patients. In contrast, 22.2% reported uncontrollable pain, or the fear of future pain, as a reason.

The article also outlined some of the choices Seattle Cancer Care Alliance made as they developed their physician-assisted suicide program, which they called the "Death with Dignity" program. For example, the center chose not accept new patients solely for the purpose of physician-assisted suicide; patients also had to sign an agreement not to take the lethal prescription in a public area or manner.

Finally, the article discussed how physicians within Seattle Cancer Care Alliance responded to the development of a physician-assisted suicide program at their center. During an initial survey, of 81 physicians who responded, 38.3% were either undecided or unwilling to participate in the program; 25.9% were willing to act as a consulting physician only; and 35.8% were willing to act as a prescribing or consulting physician.

In a separate survey[2] of New England Journal of Medicine readers also published last year, 67% of US voters were against physician-assisted suicide.

In this interview with Medscape, Anthony L. Back, MD, one of the article's authors and Associate Professor of Medicine at the University of Washington in Seattle and Director of the Program in Cancer Communication at Seattle Cancer Care Alliance and Fred Hutchinson Cancer Research Center, talks about the development of the physician-assisted suicide program at his center and offers advice to clinicians with patients who may express a wish for a physician-assisted death.

Medscape: The New England Journal of Medicine article suggests that in addition to a patient request for an assisted death, physicians may also raise the topic. Under what circumstances should a physician raise the issue of physician-assisted suicide?

Dr Back: Physicians should raise the question and offer it if they feel like a patient is talking around it and trying to ask about it, but not really saying the words. There are some patients who feel like they want to ask about this, but they feel bashful about it or they feel funny about it; if that's the case, then the physician is better off getting the issue out into the open rather than talking around and around it. That's how I see this issue.

In terms of options for end-of-life care, the Death with Dignity Act would not be something that I would offer to a patient who had expressed no interest. I don't feel like that's an issue. But most patients in our state, or many of them anyway, are aware that there's a law and aware that they have certain rights to the law, and I am happy to support them in talking about their rights and the legality of it. Because it is a practice that is destined to be used by a very small number of people—it's a small percentage of people who really want to go through with it—I don't feel like I should be offering it to everybody without any signal from them. There are a lot of patients who want to talk about it and want to hear about it because they're trying to figure out what they should do.

Medscape: Once the issue has been raised by either a patient or a physician, what role should the treating physician play in speaking with the patient about their rationale for pursuing physician-assisted suicide?

Dr Back: The first thing—and this is so important for the treating physician—is to take a little step back and say, what is going on here? What are the issues and what are the concerns that are bringing a patient to say, "I'm thinking about hastening my death"? That talking through—what is this request about? Why are you asking now? What are you worried about?—those are all hugely illuminating questions that can help both doctors and patients figure out what the issues really are. Regardless of where a particular physician might stand with the issue of physician-assisted suicide and the Death with Dignity Act, I think those questions—what's going on with you now? Why is this issue coming up now?—are just part of really good care, whether it's cancer care, palliative care, or fundamental patient care.

My experience is that patients are very clear about it. They are not asking in a trivial way. They are not asking in a casual way. By the time they get their courage up to ask their physician, they've been worried about it. There's almost always something very important and substantial going on behind those requests.

A large percentage of patients are asking because they want to know what they would do if things got really bad. These are patients who like to plan ahead. They're thinking about the worst-case scenario. It's actually the opposite of many patients who want to avoid talking about dying as much as possible. These are patients who are saying, "If the worst happened, what would I do?" A lot of those patients are thinking, "If this becomes unbearable, do I have kind of a way out?" That, for many of them, is what they are thinking about. I get a big chunk of patients who ask early in the course of their illness because they plan ahead.

Medscape: Moving a patient through the Seattle Cancer Care Alliance Death with Dignity protocol is a multistep process that includes meeting with several physicians, social workers, pharmacists, and the patient's family. What, in your opinion, is the most important aspect of these meetings? Put another way, what is the most important information that you are trying to convey or gather from the patient during this process?

Dr Back: The most important issue I'm trying to convey is that we're going to take care of you no matter what happens—that we can make sure you know all about what's possible in an even-handed way, not in a pejorative way, not in a stigmatizing way, and make sure that there are some explicit discussions about what's important for you so that when death comes, we can honor your values and honor your choices, whether those be death with dignity or not.

Medscape: Family meetings seem to be such a big part of the protocol. Do you find that there are differences of opinion among family members as they are going through this process? How should a protocol be set up to deal with those?

Dr Back: By the time you get to a serious talk, it's uncommon for the family member not to have heard about this before. Usually, patients sort out who's going to be a supportive family member, who's going to come with them. So, it's not that common that you are sitting there and you have a family member who says, "This just sounds crazy." Sometimes when people are starting to think about it, you'll have a family member kind of look at the patient like they never knew they were the kind of person who would do that. I don't see a lot of family members who really are trying to say to patients, "Don't do this."

I do have a lot of family members who are worried about it, who don't know how they are going to feel about it, who feel a little conflicted about what role they should take because they've always said to the patient, "Hey, I want to do anything to support you," and they didn't realize that "anything" was going to include this. So, I often end up talking to family members separately about what they're going through, because that's pretty intense for them.

Medscape: Control seems to be the fundamental aspect of the patient's desire for a physician-assisted death. How should that understanding, which was very clear in the study that you published, be incorporated into an assisted death protocol or process?

Dr Back: What we've tried to do with our process is enable patients who have high control needs to feel like the process is pretty clearly laid out. The law lays out one thing, but then when our advocate goes over the process with the patient, it becomes clear that there are a discrete number of steps; this is what you do. You have this certain number of meetings.

Making it really explicit helps patients know that it's not a mysterious process—that there are parts that different people are responsible for, including the patient and the family, because it turns out that this is something that you cannot do at the last minute. It's something that, if you are really serious about, you often have to time it a little bit, because you have to take all of the pills yourself. A lot of patients get to the point where they are too sick to swallow a huge number of pills or a huge amount of powder.

So, there are those practical aspects of it. Laying it out in a practical way demystifies it. It allows people to feel like they can have some control.

The other thing is that patients develop and talk with their family about how they're going to do this process. Planning this process can become the first step in planning for a whole bunch of things around death. I think that's why there are so many people who get to the point and go, "You know what, I'm okay. I'm taken care of. I'm reasonably comfortable, I still see my family. I'm just going to let myself slip away."

Medscape: How do palliative care and hospice fit into an institution's protocol for physician-assisted suicide?

Dr Back: Palliative care and hospice are both really critical to end-of-life care. The care for patients who want the Death with Dignity Act is all about excellent palliative care, and you need physicians who talk to the patients in a really careful way about what they're concerned about. You need physicians and nurses who can give people excellent symptom control, because it turns out that nobody, neither the patients nor the doctors, really want to end up hastening death because somebody didn't have enough pain medicine or wasn't offered enough of what's out there for symptom control. Nobody thinks that's a good idea.

Hospice is especially for patients who have the option for dying at home. Hospice mobilizes all those resources and helps organize them and helps connect them to the team and the clinic or the hospital. That's part of showing patients that we can provide this continuous care that flows from the hospital to the clinic to the home.

So, palliative care and hospice are linchpins. It would be weird to have some kind of protocol for assisted suicide if you didn't have really good palliative care in place.

Medscape: What resistance has there been among physicians within Seattle Cancer Care Alliance or the institution's referral groups to the use of the physician-assisted protocol, if any? How would you advise physicians who might wish to develop a similar protocol at their own center?

Dr Back: There are physicians at our institution and others who really don't want to have anything to do with it. They have the option to not participate, either as the treating physician or as a consulting physician.

When we were first doing this protocol and first proposing it, we did a straw poll, an anonymous poll of the attending physicians, to see how many people would participate. We reasoned that if 10% of the attending staff was going to participate, it wasn't going to be feasible. We would not be able to guarantee this kind of process.

However, to our surprise, I think it was 70% of the physicians who said that they would be willing to be a prescribing or a consulting physician at some point. That gave us some confidence that we wouldn't be singling out one or two physicians as the "Death with Dignity physician," that it wouldn't become overly burdensome to one or two physicians, and that we could participate as an institution. So, I feel like that straw poll was really important in making this decision to go ahead with it.

There were some people who had really strong opinions about this, because they are physicians. There are a percentage of physicians—it's a minority—who think physicians should not participate in this, period. This is not part of medicine; the profession shouldn't be doing this. It's an ethical argument that's gone back for a long time. I think their main concern really turned on the issue of, "Are these patients going to get good care? Are they still going to be plugged into the rest of the system? Are they going to be coming to us just for this?" That would feel weird if somebody were coming to us just to see us for physician-assisted suicide.

It turned out we made a decision as an institution that we weren't going to accept referrals to palliative care for the purpose of physician-assisted suicide. You had to be one of our patients, and we'll take care of you. Any of our patients, we will take care of them, but we're not trying to be a physician-assisted suicide center. I think that really helped.

The other thing is as people had more conversations, and explicit conversations, with patients, it's pretty clear talking with patients that most of them are strong-willed, opinionated, and sensible. They're not crazy. They're not whackos. They're very reasonable people. When you talk to them, after you talk to a bunch of them, you kind of go, "Okay, I get it." It's a minority desire, but it's not because they're exaggerating, or because they're anxious or because they're unreasonable.

Editor's note: This interview has been condensed and edited for clarity.

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