Dilemmas in Aid in Dying: Podcast with Bernie Lo

Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Lynn: And this is Lynn Flint.

Eric: And Alex, who is our special guest today?

Alex: Today, we have a very special guest. We have Bernie Lo, who is Professor Emeritus from UCSF, ran the bioethics program at UCSF for years, and now is President of the Greenwall Foundation, a foundation focused on bioethics research and development nationally. Welcome to the GeriPal Podcast, Bernie.

Bernie: Oh hey, delighted to be here with you today. Thanks for inviting me.

Eric: And we are gonna be talking with Bernie about his New England Journal of Medicine paper called, “Beyond Legalization: Dilemmas Physicians Confront Regarding Aid in Dying.” But before we do that, we ask all of our guests, do you have a song for Alex to sing?

Bernie: Alex, if you could sing something from The Beatles? How about “Help?”

Alex: Help! Help, I need somebody! Perfect. [Singing]

Alex: All right, we got Eric to join in the end there.

Eric: Yeah, but I think I was away from the microphone.

Lynn: Yeah, I was just gonna say you were like a foot away.

Bernie: That was great.

Alex: Thank you, Bernie. Thank you so much. Thank you for joining this podcast. So who wants to ask the first question?

Eric: So, May 31st. 2018, opened the New England Journal, well I don’t open New England Journals anymore, I actually get it as a table of contents. But I see an article from Bernie Lo about dilemmas physicians confront regarding aid in dying. Before we talk about this article, Bernie, maybe you can just describe a little bit how you got interested in this subject. Why aid in dying? Physician assisted-

Bernie: Well, my interest goes back a long time before legalization. One thing I wanna say is that patients thought about this, patients wanted to talk to doctors about aid in dying, and would actually request that the physicians help them way before it became legal. And even when it was illegal, and now would imagine in states where it’s not legal, sometimes some physicians do agree to a patient’s request. Sometimes we get so caught up with the legalization of discussions and controversies, that as physicians we sometimes lose sight of the idea that legalization doesn’t resolve all the ethical dilemmas that when you’ve decided which way you’re gonna vote on a referendum for example, and thought it out, that doesn’t necessarily prepare you for some of the things that will come up in your practice from patients. And how you’re gonna respond to those, I think is something that I wanted to write about.

Alex: And you’ve been in practice as a primary care physician in San Francisco for a long time.

Bernie: Long time.

Alex: Long time.

Bernie: Not quite as long as The Beatles, but…

Alex: And I wonder if you’ve seen changes in how the physician community has responded to this issue of aid in dying over time? Through the AIDS epidemic, and now with legalization. What have you seen historically here in California?

Bernie: Well I think you’re right Alex, that there have been changes driven by both medical occurrences like the AIDS epidemic, and then clearly legalization. I think a lot of people have either changed their minds or become more open to differing points of view, and also I think what’s changed clearly is that patients are now much more willing than some patients to talk about these issues and want to discuss them with physicians.

Alex: So I wanted to ask as we get into this issue of dilemmas physicians confront regarding aid in dying, about first you raised this point, and you alluded to it already. That often these requests are not explicit requests. So how should physicians, what clues should physicians be looking for from patients that may be requests for aid in dying that aren’t explicit?

Bernie: I think it’s like so many things in medicine, that some patients will ask what’s on their mind explicitly, and others will get at it indirectly or sound out the doctor. One of the things that I’ve noticed myself is that people will ask a question about something they saw in the newspaper, or an event like the legalization, the signing of the California bill. Or they’ll tell a story about a friend or a neighbor or even a conversation they had. It may just be a question on that level, or it may be a lead in to their wanting to talk about with regards to themselves, or I’ve actually seen it also with regard to a family member.

So I think doctors need to be open to some of the unspoken, the hidden, the deeper meanings that may or may not be present. Sometimes a question of how do you feel about something is just a question.

Lynn: And I actually have a question. I was seeing a patient this morning, believe it or not, I was doing a video palliative care consult with a woman in a nursing home who has an advanced cancer. And she, this was the third visit today. She was really down in the dumps. She was not feeling well, she was having a lot of challenges getting her symptoms addressed in the nursing home she’s in. She’s not on hospice at this point. And she talked about passively being fine if her life ended sooner and physician aid in dying of course went through my mind, but I didn’t say it, I just explored. I explored, and she didn’t bring it up, and I didn’t bring it up, and the conversation went on. But it made me think about when do you bring it up when you’re not even sure if it’s on the person’s mind?

Bernie: Well, I think you did the right thing, just to explore, and sometimes the things we do, just open ended questions and listening, being empathic, draws people out. Sometimes I actually will ask explicitly, “You mentioned something a couple of minutes ago that I wasn’t quite sure how to interpret, or what you meant by it.” And then ask the more direct question, “When you were talking about this, were you thinking about the possibility of taking a medication to end your life?”

It’s almost in a way like asking people who are depressed about whether they have a thought about ending their lives by suicide, or being violent for that matter if they’re having real anger problems. Sometimes patients will say, “Oh no, no. I would never do that. But I must say, I can understand why people could do that.” And that’s fine.

Eric: Well Bernie, that brings up an interesting analogy, because the old thinking around depression is if you bring up suicidality, like people are gonna get the idea of, “Oh, wait. I can commit suicide.” Now we pretty much rooted out that idea, that it’s actually important to bring up thoughts about suicide, and it doesn’t actually make people think, “Oh, I wanna commit suicide.”

Bernie: Never thought of that before.

Eric: So are we suggesting kind of the same thing here? Because I think a lot of providers think, “Oh, I don’t wanna bring up physician aid in dying,” because then they’re gonna think, “Oh, this is a reasonable option because my provider’s bringing it up.” Is that something we should be worried about?

Bernie: It is something to think about, Eric. I totally agree. And I think a lot depends on how you say it, and how it comes across. I think if it’s a question, is this something that you’ve been thinking about? Then that’s very different than I want to make sure you understand that here’s an option that you might want to consider. So I think it’s the difference between, Lynn you used the term of exploring, seeing what the patient might’ve been thinking that they haven’t yet articulated, and giving the impression that you’re actually suggesting or recommending something.

Eric: Well that’s interesting. Can we talk a little bit about the ethics of it?

Bernie: Yep.

Eric: Because if memory serves me correct, I think somebody was working on a bill in California about making sure that people knew all of their options including physician aid in dying. I think nothing happened with that, but is there a distinction between us exploring whether or not people have thought about this and actually mentioning it as an option for around end of life care.

Bernie: Okay, great question. Let me just first say going back, there are people who believe you shouldn’t bring up hospice to patients unless they ask for it, because it might be interpreted as a subtle way of telling them, “Your time is up,” given the misunderstandings about hospice. So Eric, I think you really put your finger on an important point regarding how does what the physician say get interpreted by the patient? And how do you frame things in a way that you make clear that you’re informing people without really advocating anything?

So again, I like to use the … maybe you guys, sorry you all, do this better than I do, sometimes just bringing up palliative care or hospice, I have a patient now I’m trying to go into hospice discussions with, and one of the family members is really concerned that hospice means giving up, that you’re signing a death warrant. But I did want to make sure that it was one of the options, and so I framed it by saying I just wanna make sure you know all the options ranging from sending the patient to the emergency room or this will happen to trying to manage her at home to trying to bring in people that can help relieve her symptoms at home, then hospice is the best way to do it. And I backed off, because I knew there were concerns there.

This may not be something that you want to consider, at least at this time, but I just wanted to let you know, it’s one of the options. So I think how you frame it rather than just saying there are five things we can do, and number five is. I think it’s really in the context of the relationship that you have, and the goals of care, and what your sense of what the patient’s needs and concerns are.

Eric: Have you or would you ever do the same with physician aid in dying? Would you actually ever say, these are options, and physician aid in dying is another option?

Bernie: I probably wouldn’t quite say it that way, but I think people frame it differently. I would say, and there’s another approach, and there are some people who consider, think about, and ask for aid in dying, which means getting a prescription for a lethal dose of medicine that the patient takes when they think the time has come in their terminal illness.

Eric: All right, one last question from me, because I think Lynn has a question.

Bernie: Yeah, sure.

Eric: What words should I actually use? So you wrote in this physician aid in dying, there’s physician assisted death, there’s physician assisted suicide, there’s death with dignity. How should I label this?

Bernie: Yeah, I…

Eric: Or does it matter?

Bernie: Well no. I think it does matter because people interpret terms in very different ways and react to things that may have actually been misunderstanding. So I think you’ve all been through the … we call it palliative care now, because so many people have negative connotations about hospice. I tend not to use the phrase and just describe what it is. It’s talking about and in some cases asking for and receiving a prescription for a dose of medicine that they can take to end their lives.

Eric: That’s great. Taking away the label, the often meaningless label.

Lynn: Just saying what it is. That’s what it is.

Eric: But we can’t do that as doctors. We need to actually not even label it, but-

Alex: Come up with an acronym.

Eric: Like PAD.

Alex: Right, right.

Lynn: We need to give it a name that nobody will understand. [crosstalk 00:14:35] That’s why they changed it to HEF PEF from whatever it was, heart CHF. Going back to my patient, another thing that felt like a dilemma to me in that particular scenario, was that I was thinking about, no matter what, my own personal position is on physician aid in dying or whatever we want to call it for the podcast, I had this fear of maybe this because I’m a palliative care doc, I was less afraid of the emotion that was gonna come, and more afraid of the just the sheer logistics of what I would do if this person said, “Yeah, that sounds like a really great option.”

And then it got a little stuck in my head of, well am I withholding this information because it’s logistically difficult and I don’t exactly know how to do this, and I got a little tied up in my head.

Bernie: Those are really, really important questions. And hats off to you for recognizing and being honest with yourself. So the very first thing I think is, you said something regardless of your own position. And I think clearly, doctors will have strong … many doctors will have strong feelings one way or the other supporting or opposing, and one of the things I wanted to try and put out there is the idea that regardless of which way you come down on would you sign the prescription, trying to ascertain what the patients concerns are, trying to address them in the best way you know how is in palliative care.

All that should be independent. Then you bring up another set of questions, which is really important and we don’t really talk about much, which is the logistics. Particularly if in any institution you practice in unless you’re in a solo or small group practice where all your colleagues think the same, institutional policies really come into play. And the logistics of how you actually prescribe, what you prescribe, what doses, what pharmacies will fill some of these prescriptions, what if the patient is of sound mind but not of sound body and can’t go down to the pharmacy herself? Who can pick it up? If it’s in an institution, if someone’s in a nursing home, will the nursing home stock the drugs you want to prescribe? Or you can allow the practice to take place? So I think all those are important, pragmatic, practical issues. Well, I guess the question I would come down to is, should you not get the patient interested in a topic that just won’t happen because of the institutional constraints?

Or, at least for some patients in nursing home, could friends or family be mobilized to help? For example, I don’t know if you all are … I know Alex and Eric, you’re at the VA, I don’t know if you are as well, but…

Lynn: Me too, yeah.

Bernie: Yeah, so if it’s the VA nursing home, I’m sure they have policies, and they may be national policies.

Eric: Yeah, with federal, you can’t use federal funds for physician assisted suicide or euthanasia, so there’s a Congressional law that we can’t actually bypass. But it doesn’t mean that we can’t talk to our patients. Explore their wishes around physician assisted dying, or connect them to potentially other resources without actually making referral. We can’t make a referral. We can educate.

Bernie: You’re forbidden from making a referral.

Eric: We’re forbidden from using any federal funds and making formal referrals.

Lynn: But we could give them information.

Eric: And educate.

Lynn: And educate, yeah.

Bernie: So, but this now gets down to nitty gritty. Are you allowed to say here’s the state website that explains all this?

Eric: That’s in education. I would say yes, it’s like we’re educating. We’re not using federal funds to help people with the process, but we’re educating, just like we would educate people on any mental health condition or option.

Bernie: Could you give them a list of advocates?

Eric: Yeah, so this is great Bernie, because it’s not like I’m on a national podcast that I’m gonna get in trouble for talking about. I would say again, anything that has to do with just around education, as long as I am not sending them out to another physician who would prescribe it, personally I feel very comfortable actually giving them resources around our state that they can connect to. Where you draw that line, I think is that … we have clear guidance on what we can and can’t do, again with federal funds. Where you draw that line of this is what I can do or can’t do within a system like the VA where we can’t do it, it’s gray, right? But I feel, for me and teaching others, that it’s really important not just to say, “Sorry, we don’t do physician aid in dying, talk to somebody else.” But to be very clear is, “Thank you for bringing this up. I’d really like …” How did you start thinking about this? Where is this coming from? Why now? All these great questions like you and Lynn were talking about. Inquiry.

Alex: Exploring.

Eric: Exploring. And then potentially addressing some of the issues that come up, whether it be around loss of control, or depression, or pain.

Alex: Which is a point that you bring up Bernie, in your article in a couple of different areas. First, at the time of the initial question and exploring, you highly recommend making sure that you’re treating all reversible sources of suffering, including comprehensive palliative care, noting that 46% of patients who have requested physician aid in dying change their minds. And then second, after somebody’s written the prescription, that doesn’t mean you stop treating sources of suffering, but in fact that you try to help this person find other reasons to live, and that many patients who obtained the prescription do not actually use it.

Bernie: Right. That’s right. And what I try to say, and maybe it’s worth repeating it, even physicians who are morally opposed to let’s call it aid in dying, that’s what the California law calls it. My argument is they should do that exploration, talking to people, and really doing the most intense, successful palliative care they can. Even though they and the patient know that there’s a real difference of opinion with regard to the aid in dying. If I can double back, is that okay to go back?

Eric: Sure, absolutely.

Bernie: To the issue that Eric and Lynn, you were talking about. So I don’t want to make this a VA centric or certainly not put either of you on the spot. But I think in any institution, institutional policies may or may not constrain what physicians can do or feel comfortable doing. And Eric you brought out the between what you’re expressly told not to do, and what you’re expressly told but is okay, there’s a gray zone. And where in that gray zone will you be? I think it’s really important for each of us to think that through so that hospices have different policies regarding participation in aid in dying. So institutions, like UCSF or hospital or clinic that you would work in.

So I think it’s important to think this through, and I think in a lot of other contexts, we are not shy about referring people outside the system so that now my practice is UCSF, for a lot of reasons tend to refer everyone to UCSF specialists. But if that’s not working out, then I will … and particularly if the patient expresses real unhappiness with the way a couple of referrals have gone, I will refer outside the system and say, “Well, I don’t know what your insurance covers. I don’t know these people as well, there’s a little problem getting the records back and forth, but either it’s closer to your home or they can give you a different opinion.” So I think feeling comfortable saying the way we do it within our system is not necessarily the only way to do it, and for a given patient they may want to at least think about if they want to, the option of going outside the system.

Alex: I wanted to come back to a topic that you raised before about the way you go about prescribing may differ within health systems and what you prescribe and formulations. If you’re allowed to within that system. And as you note in here, barbiturates are one of the mainstays of physician aid in dying, and they’ve become really difficult to obtain and in some cases prohibitively expensive. And my understanding is that those who prescribe these medications frequently, the physician aid in dying medicines frequently, are actually in some ways they’re trying to come up with creative new uses of existing medications to help their patients die quickly and without suffering.

And it raises, for me, I wonder if you see some issues here of the clinical and research ethics interface. I worry that there is very little to no oversight over these practitioners who are trying new formulations with patients. If we had say a cancer trial with some new drug, we would be up in arms if there was no oversight about was informed consent obtained. How much did they actually understand about this new treatment that you’re trying and the potential risks and side effects, etc.? And on the other hand, I also feel for those providers, because there is no mechanism to support research in this area. There is no mechanism to provide oversight that I’m aware of, maybe you’re aware of mechanisms, to provide a research infrastructure for these practitioners.

Bernie: Great questions. So let me try and distinguish between oversight and evidence. If you start with the assumption that barbiturates may be prohibitively expensive and very hard to get-

Eric: Wait. Before we talk about prohibitively expensive, we’re looking at $5,000 to $6,000? Is that about right?

Bernie: Yeah.

Eric: So like three days in the ICU. Two days.

Alex: Right, but they’re paying for this out of their pocket. Out of pocket costs. They’re not paying for that ICU stay in almost all cases.

Bernie: So there’s actually not very much evidence on the older regimens that included barbiturates. And it’s the Dutch who have done this. They have collected the best evidence on what are the adverse effects, how often does it work? And just parenthetically, one of the main reasons that physician assisted suicide is not that common in the Netherlands, although it’s legal, they use active euthanasia, because they’ve had documentation of really disturbing adverse events from oral ingesting of medicines.

So there are people who have been trying to devise regimens that are effective, that are tolerated, that are affordable, and presumably are safe. So it’s an evidence issue, and I would differ a little with you Alex, in that I’m not sure it’s actual formal research that meets IRB approval and the like, but it’s really innovative practice, but there needs to be a systematic collection of what works, what doesn’t, what happened. So I think what I would like to see is the doctors that are doing this a lot, and hats off to those who do it, it’s very hard work. It’s emotionally grueling, it’s time consuming. My impression is that patients and families really appreciate what they do, that they keep a register of what was prescribed, how it worked, any adverse effects, so that people can later on say, well in a consecutive series of people using regimen X, this is what happened, and if it gets modified to regimen Y, this is what happens.

But I think the idea that things are intuitively gonna work is good, but you need to see in practice like can people take all the pills? Will they keep them all down? Those are things that are real practical.

Alex: And there are some people who have terminal illnesses, illnesses that will eventually end their lives, who do not fit in to this physician aid in dying. For example, I think of people who have amyotrophic lateral sclerosis, right? ALS, a motor neuron disease who will not be able to take the pill themselves because they are not physically able to do it, though they are of sound mind.

Eric: And anybody with dementia who may not have the capacity.

Alex: And who’s cognitively not able.

Lynn: I was gonna give an example, I spoke at an Alzheimer’s Association conference last year, and I was asked to sit on a panel there and talk about physician aid in dying, and a few months ahead I said what’s the point in this group? Nobody here can access it. And this was a community facing conference, so lots of caregivers and family members, and I have never sat on a panel with such anger and emotion at the idea that people couldn’t access this on behalf of their loved ones. It’s pretty fascinating.

Bernie: Yeah, the laws in California, Oregon, and the other seven states and the District of Columbia are pretty narrow. It’s terminally ill patients who are competent, not depressed, all that. But if you allow it for those cases, you brought up examples where logically it makes sense to extend it. So the person with ALS, who is mentally clear, but physically unable to ingest the medicine. It seems to me that, logically, that doesn’t seem to be either consistent or fair, and you can certainly think of ways of devising robotic assistance to place the pill in someone’s mouth on a voice command or something, but it seems like a lot of trouble for the same effect.

Eric: Because we’re kind of skirting around this physician aid in dying versus euthanasia issue, right?

Bernie: So the ALS example, I would say it’s still done at the command or voluntary decision by the patient. They are saying the time has come, I want someone to put the pill in my mouth. Or put it in my feeding tube. The Alzheimer’s is different, because there presumably the patient is no longer saying this is exactly the situation, I didn’t want to be in. Now’s the time to stop, we’ve all come and said goodbye, I love you, thank you. So it’s someone else saying this is what the patient would have wanted in this situation. That one step removed from the direct request or decision by the patient leaves it a little bit shakier, but logically I can see why people in that audience in your panel at that meeting Lynn were saying, “This doesn’t make any sense. This is exactly, by the time she is sick enough to be in a position that she dreaded, you’re saying she can’t take the medicine, we can’t administer this.”

Lynn: Yeah, so the other thing I was thinking about in terms of the ALS example, and actually in general, correct me if I’m wrong, but once people obtain a prescription it’s there, in their home. And they may be in a hospice agency or have some sort of institutional support, but they may not, and so we don’t exactly always know how this ends up being administered in the moment?

Bernie: No, we don’t. And frankly that’s one reason someone suggested that a physician or a hospice nurse should be present. There are a whole lot of reasons, but one is to make sure there is, at least in states like California that’s a voluntary choice. Not someone else administering. And if it were ever to get to the point, in the Netherlands, doctors make house calls to carry out either physician assisted suicide or active euthanasia. And it’s done by GPs usually, not necessarily by specialists, and they make it part of their job. And it does give some assurance that what was done was ethically appropriate. Although then, there were also some problems with what actually was done in some cases.

Eric: So Bernie, last question. Do you have guidance for clinicians who are listening right now? Maybe three things that we should be actively thinking about or doing to prepare us for these ethical dilemmas around physician aid in dying?

Bernie: Let me try. So first is to the extent possible, treat this like any other new intervention that you’re likely to see in practice. Anticipate what might happen. Think about it, try and read about it to the extent you can, talk to your colleagues about it who have maybe had some experience. Because I think more than a new device or new medication, it’s important to sort of think this through in advance. Because a couple of you had said when something comes up, you can almost feel like a clutch, what’s going on here? What am I gonna do? So I think that’s important.

Okay, so my second point is, this is hard. It should be hard. And I think we all need to appreciate that. For all the reasons we’ve talked about, it’s complicated, there’s a lot of uncertainty, it’s a lot of individualization. And I think you have to be willing to say this is gonna take time, emotional energy, and a lot of digging into yourself to say how much time am I gonna spend on this, and what do I ultimately feel comfortable doing, and where would I draw the line saying I’ll support my patient up to this but not farther than that.

And third I guess is a corollary almost of two. Talk to people about this. Your partner, your spouse, your practice partners. It’s really important that you not think that you’re the only one going through this, or you have to work this all out yourself because the people I’ve talked to and practice who have faced this, and tended to face it alone because if you’re outside an institution, the whole pace of things is different, it’s really grueling on people and it’s almost like what’s the hardest emotional sub specialty? Maybe pediatric oncology? That you need to be able to re equilibrate. But part of that is, patients or families who will tell you, “We so appreciate you talking about this.” You’re spending the time. You’re taking this seriously, you’re engaging on a not just no I won’t or yes I will, but really could see you trying your hardest.

That’s so important to families, to patients. And that is to compensation for all the hard work and energy we put in. I think the other thing I would want to say is that you want to try and apply the same critical thinking and evidence based medicine skills, and to admit when we really don’t know. I would always say to people, “Every medicine has its adverse effects, and we don’t know what all of them are. This may not work, there may be side effects.” I’ve had people say they want to be in charge of how and when they die. I need to say we can’t guarantee that, because we can’t guarantee anything in medicine.

Eric: Well it’s interesting though, it feels like this is even more of a black box. It’s kind of hidden from sight, at least like with we have people who can see what’s happening after insulin. We have people researching that, but this is doctors are often not there, it happens in people’s homes, and there’s very little follow up.

Bernie: That’s right, and I think and I’m willing to say, just a consecutive case series would be useful with standardized information on each case. There’s some of that that’s done in the state of Oregon and Washington have the best annual reports. They’ll talk about adverse effects, but they don’t specify what the regimen was. And so you can’t crosswalk it to drugs and dosages, which of course doesn’t help.

Eric: Well Bernie, I really wanna thank you for joining us today.

Alex: Thank you so much, Bernie.

Lynn: Thank you.

Bernie: Yeah, no thank you for inviting me. Great questions, I enjoyed the back and forth.

Alex: Incredibly thoughtful responses.

Eric: Incredibly thoughtful. I always learn a ton just listening to you.

Alex: I know I always learn so much.

Eric: Before we end Alex, I wanna end this on a high note with maybe a little bit more of The Beatles.

Alex: Another verse of Help. [Singing]

Eric: Well I wanna thank all of our listeners too, for joining us on this GeriPal podcast. We look forward to our next podcast next week.

Alex: Thanks, Bernie.

Lynn: Thank you.

Bernie: Thanks Alex, and Eric, and Lynn. It was a pleasure.