Surrogate Decision Making: Bernie Lo and Laurie Dornbrand

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

Alex: This is Alex Smith.

Eric: And Alex, who do we have with us today?

Alex: We are delighted, absolutely delighted to welcome a husband-wife team. Today we are welcoming back Bernie Lo, who’s the general internist and bioethicist, and Professor Emeritus at UCSF, where he ran the program in medical ethics and is also past president of the Greenwall Foundation, which is a foundation dedicated to supporting bioethics research. And I was fortunate that Bernie as my mentor in that program. And Bernie, we’re delighted to welcome you back to the GeriPal podcast.

Bernie: Great to be here.

Alex: And Laurie Dornbrand, who’s a geriatrician. She’s a physician at On Lok at the IOA Center and the program for All-Inclusive Care for the Elderly, which is PACE and has been there a long time. Estimates she’s done thousands, maybe three plus thousands years of night call. And she’s also a member of…

Bernie: Nights, nights. [laughter]

Laurie: Nights. Only feels like years sometimes. [laughter]

Alex: 3000 nights, what’d I say years? Yeah, 3000 nights. And is also a member of the California Coalition for Compassionate Care. A lot of Cs in that. POLST Physicians Leadership Council. Laurie, welcome to the GeriPal podcast.

Laurie: Delighted to be here.

Eric: So we’ve got a lot to talk about today. This topic came up with Bernie published an article in New England Journal called Deciding for Patients Who Have Lost Decision-Making Capacity Finding Common Ground in Medical Ethics. We’ll have a link to that article, but kind of stimulated this podcast where we’re going to talk a little bit about advanced directives, durable power of attorney for healthcare, surrogate decision-making and the like. But before we do, we always have a song request. Who has the song request, Alex?

Alex: Bernie.

Eric: Bernie.

Bernie: I asked Alex to do Joni Mitchell’s, Both Sides Now, particularly the last verse, but I think it’s all very relevant to trying to think of what you’ll be like in the future.

Alex: And Joni Mitchell’s amazing story, she had a stroke, she had to relearn how to play the guitar. She’s been performing recently and this song is particularly poignant when she sings it, given her perspective.

(singing)

“Tears and fears and feeling proud to say, I love you right out loud, dreams and schemes and circus crowds. I’ve looked at life that way, but my world friends are acting strange. They shake their heads, they say I’ve changed. Well, something’s lost, but something’s gained in living every day. I’ve looked at life from both sides now, from win and lose and still somehow it’s life’s illusions I recall. I really don’t know life at all.”

Eric: That was lovely.

Alex: Thank you.

Eric: Very apropos of the subject at hand.

Alex: Very apropos. That’s my Hawaiian eyes version on opening, tuning because I’m still playing with two fingers because I’m recovering from broken hand. But thank you for that choice, Bernie. Terrific.

Bernie: Thank you for playing it, Alex.

Eric: Bernie, I’m going to take a big step back. Why are you interested in this as a subject? You write about this, you’ve written this New England Journal article, you’ve written past articles. I remember there was an Archives article from, or Annals, I forget, it was probably called Archives back then, Resuscitating Advanced Directives. What’s the thing that makes you interested in this?

Bernie: Well, decisions near the end of life for people who can’t make the decisions themselves, they’re common and they’re really hard. And each case is a little different. Each patient is different, but the rules that sort of shape how we make decisions, what’s allowed, what’s not allowed, have really changed since when I started, shortly before the Cruzan ruling to today, we’ve really gone 108 degrees on a lot of issues. And I think what strikes me is that change is possible. That Supreme Court rulings that are very unpopular don’t always hold sway and can be overturned by research, by states acting and by good clinical judgment.

Eric: And when you say that, are you suggesting this is applicable more to advanced directives around Supreme Court rulings?

Bernie: I think that the Supreme Court is not the final word, it’s the final world on constitutional appeals. But legislation can change, clinical practice can change, but I think what we’ll talk about today is how we’re now opening the door to conversations rather than legal rules and documents. And I think that’s where we want to be.

Eric: And I’d love to talk about the history, but before I do, I’m going to ask you the same question Laurie, what interests you about this topic?

Laurie: What interests me about this topic is seeing it in my daily life and wrestling through these decisions with patients. And the classic case that we often hear of is the poor old person who got a whole lot of medical treatment they wouldn’t have wanted an ICU flog. And the cases that haunt me are people who didn’t get treatment, simple treatment like IV fluids and antibiotics that they would’ve wanted because someone had written comfort care in their chart. And for years I’ve been struggling with how do we document this in the record and what information can we communicate and work with better?

Eric: And I think that highlights the complexity of this because it requires things like documentation. Bernie’s bringing up Supreme Court rulings, we’re talking about communication, which is challenging by itself and the whole medical inertia that happens. I’m wondering if we just take a step back. I’m going to go to you Bernie on this. You say things change over a period of time. Going back to even probably before the 1970s, most of these decisions were made end of life decisions, paternalistic by physicians. And that changed in 1969 I think the first advanced directive was created by Luis Kutner.

Bernie: Well, there was a time when doctors made these decisions. If they didn’t do it all by themselves, they talked to the family and it was a conversation, but also there wasn’t a whole lot that doctors can do then. ICU care was pretty rudimentary. And now ICU care has flourished, and we can keep people alive in the sense that their heart is beating and we can sustain their ventilation and circulation. But the question is this really for the good of the patient and is this what the patient would’ve wanted? Almost all deaths in the ICU now are due to withdrawal of care or withholding of care. They’re not due to people dying despite maximal effort.

Eric: And it just highlights the fact that these laws and the mechanisms that we have around documentation grew up along with an increasing need for that because we have these interventions that can keep people alive. And sometimes people don’t want that, including not by artificial means or I think what was initially described as heroic measures.

Laurie: But I think we also put families in very difficult situations because they’re faced with withdrawing, withholding, and it’s something they haven’t been prepared for. They haven’t really thought about with the person they’re deciding for. And sort of talking about that in advance, I love the Susan Block questions, which were in Gawande’s Being Mortal, how much are you willing to go through for a chance at staying alive and what level of being alive is acceptable to you? And I’ve found that when I can step back, talk to the family about what was this person like or if it’s someone I know, what I remember about them and if it’s someone I don’t know, tell me about them. And that helps us get to the decision. I once had a patient in the ICU at Moffitt who had had a stroke and was facing, not recovered, going to a nursing home with a feeding tube.

And she had always been immaculately dressed, and for some obscure reason, the hospital gift shop had a display of straw hats. And I had noticed it when I went in to see her and I was talking to her daughter, I said, “Did you see those straw hats? I saw one that reminded me of her.” And she said, “I think I know the one you mean.” And I said, “The one with a leopard print band. Right?” And all of a sudden, it became crystal clear to her that her mother would not want the life that she was facing in a nursing home with a feeding tube drooling down her johnny and being very helpless. And it’s that kind of reflection and understanding and thinking about patients who they are that I want to see more of.

Eric: And Laurie for this patient, were you the outpatient provider?

Laurie: Yeah, she was an On Lok patient, and I went in to see her in the hospital.

Eric: So probably a very uncommon circumstance where an outpatient provider who’s had this conversation, who’s known the individual for a very long time actually goes to the ICU, communicates with the family and potentially communicates with the ICU providers about who this person is, what’s important to them. While I love the story, I don’t think it’s probably very common. It’s certainly not common in my practice.

Laurie: It doesn’t have to be a visit though. For example, I had another patient in the ICU who she was on a ventilator. She had a respiratory arrest, and the nurse was really distraught. They didn’t want to treat this poor woman’s pneumonia. And I pointed out to the advanced directive information that we sent in with him in which she said she was ready to go, she wanted to do whatever made her daughter comfortable.

Bernie: Let me inject in here a minute because I think these are really important points, and I would just add to the two questions. What would you be willing to go through for what? And you have to specify for what. And how long would you want us to continue if you’re not improving? Third question is, and how should we make that decision? And that’s where a lot of times if a lot of patients who I’ve followed for decades in primary care say, I want the family to talk to you and I want you to recommend it to them. That’s really hard to do just because under our hospital system, and a lot of people don’t have a doctor who’s known them very well. Let me say however, that I’ve been very impressed with how some of the younger doctors, particularly those with palliative care training, can have these conversations with people they haven’t met before, but over a couple of days in the ICU, get to know the family, get to know the patient, and have the family trust them and latch onto these, what was that person like?

And then there’s always that projection knowing what the patients like, what do we think would be best or what would he want now? And sometimes you can’t say, you really can’t say, and that communication is important. I think that we should now be focusing even more than we do on how do you talk to patients families in the moment when you can’t talk to them because that’s what it’s going to come down to more and more.

Eric: Well, let’s talk about that. I want to make sure we get to, what should we be doing now. But Bernie, the first question I asked you was about the history of advanced directive, advanced care planning, durable power attorney. Can you give me kind of a little overview of that? We’ve mentioned Cruzan, Karen Ann Quinlan often comes up. If you had to give a short history of advanced directives, advanced care planning, what would that short history look like?

Bernie: The very short history is that when we were first confronted as hospitals and physicians with life-sustaining technology, it was unprecedented, whether it’s ventilators or whether it’s a silastic feeding tube. Hospitals said, we want some legal protection. If we’re going to discontinue treatment that’s keeping the patient alive, even though the family wants it and seems to be sincere and loving, how do we know we’re not going to get in trouble? And that’s what started this whole movement for documentation. Did the patient really give explicit consent to a family member to make a decision that involves stopping something that’s sustaining life? So I think some of this is concerns about legal liability.

The other thing I think that’s really important is that there are laws now in at least 41 out of the 50 states who give us a default list of who makes decisions. Even if you haven’t completed a healthcare proxy, durable training for healthcare, most states say here’s a list of people who can make that decision in order. And the problem, it goes down in many states to close family members, any friend who knows the patient. So you don’t have to have the piece of paper that says, I appoint so-and-so only if you want to go outside the legal of the default characterizations, but you have to have a legal document.

Eric: Initially it started with living wills back in the early-1970s development of durable-powered attorneys for healthcare. You also mentioned in your New England Journal article the importance about Nancy Cruzan about that Supreme Court case. Why was that case so important or was it?

Bernie: Well, it was important because the Supreme Court probably more so in those days, but even now, that’s the final constitutional arbiter. And when they say there is nothing in the constitution that prevents a state like Missouri from saying we’re an explicitly pro-life state, and we will not allow even a loving family member to withdraw or withhold life-sustaining treatment without legal documentation or a very explicit oral directive from the patient that says, if I’m in this situation, I.E. persistent vegetative state, I don’t want a feeding tube continued. States are free under the constitution according to that ruling to hold those strict standards. Other states are free to have different standards of course.

Eric: So the Supreme Court didn’t set the standard. They said basically that every state has the right to set their own standards.

Bernie: And it could be very strict the way Missouri did.

Eric: Or potentially very loose.

Bernie: Right.

Alex: Which is what happened.

Bernie: Yeah. Many states have gone on to say you can appoint a proxy in an oral discussion with your physician. You can say, I’m going into the hospital, I want you to know, Doc, that if I can’t make decisions, I want you to turn to so-and-so. And now vast majority of states have default order surrogates where if you don’t appoint anybody, the following people have the authority to make decisions on your behalf going down the list. So we’ve gone back from the strict legal requirements just because they were unworkable. No one did it.

Alex: I believe both of you were practicing during the HIV AIDS epidemic in San Francisco. I wonder if you could talk about what practicing was like then in the issues that were relevant to this discussion about surrogate decision-making at that time.

Bernie: And so Alex, it was horrible. It was a time when many people knew good friends who had died of HIV AIDS. And that was a time before there were antivirals. People would present with horrible opportunistic infections, not just pneumocystis pneumonia, but CNS infections with toxoplasmosis and wasting syndrome, of course. People had seen close friends die from that and they said, I don’t want that to happen to me. Moreover, they said, I don’t want my biological family to be making decisions because they either don’t know I’m gay, they have resented my lifestyle, and I’ve been estranged from them. So that was the poster child for advanced directives in fact.

And others did a study that showed that most HIV-positive men, if you talk to them in the clinic, said I want to talk to my doctor about end-of-life treatment and have very specific preferences. And they knew what they were talking about and they had very specific preferences, not just for what they wanted or didn’t want, but who should make decisions. So that was the ideal case for advanced directives. But it was a very unusual case because they could predict what was going to happen to them.

They weren’t ending up in a car accident and dying in a car accident. So there is a role for formal legal documents. But now I think we should shift the focus more to having these conversations. There are always things we can do. With ECMO, you can be kept alive for very, very long periods of time.

Alex: And Laurie, from your perspective, practicing as a geriatrician, how have you noticed, I mean this is a wonderful topic because it brings together ethics, health, the law, and the shifting laws, ethics, norms, practice. How has your practice been affected by these shifting currents over your practice lifetime?

Laurie: I think less so than what Bernie’s describing. I didn’t see very many AIDS patients. They didn’t come up in geriatrics very much. But I think what was important about that was the importance of an advanced directive is when you want to designate somebody other than what would be assumed, which is usually a hierarchy of family members. And we see that too in geriatrics. And also the tension between the daughter who’s on scene and the son who’s on the other side of the country and family members sweeping in who don’t really know, insisting on stuff being done and the same thing, children can be estranged.

So I think we are very conscious of the importance of identifying the appropriate decision-maker. And then we have people without families and what happens in that case? Is there a friend? Is there somebody else? So those are the things that come up from us. And also trying to get people to be explicit with their decision-makers, often they will pick the child who speaks English better or maybe in a Chinese family it’ll be the eldest son, even though there’s a daughter-in-law who knows the person much better. Trying to assess who’s the best source of information about what the person would want and also trying to get them to communicate with each other about those issues.

Bernie: Laurie, can I interject here? So you mentioned that you’ve had thousands of nights on call, so I’ve overheard thousands of nights on call, not all of them, but I’ve also heard that what you do, so you get on the phone, and you talk to all the family members, explain the situation, talk them through, reminiscence about the patient, then you talk to the person on the other coast sometimes. A lot of effort going into that. How practical is that now for people to have those kinds of conversations and how important is it to have those conversations?

Laurie: I don’t think it’s very difficult to make a phone call, and you can usually handle this pretty efficiently. And they can be crucial.

Eric: It does require more work. And Laurie…

Laurie: I think what the issue…

Eric: I do think there’s something unique both about On Lok as a PACE program and about you as a physician in what you do. I don’t think we should understate how the decision to call these people in the middle of the night.

Laurie: I think Bernie’s exaggerating the multiple phone calls. There’s usually a key person, and I think the most important thing you can do as a primary is identify who the key person is for the person in the hospital to be in touch with and give them whatever knowledge you have about the person. I mean, what I see there is a lot of disjunction between inpatient and outpatient teams and whatever you can do to bridge that gap either by information that you send in or that you relay to them about this is the person who knows the patient the best.

Bernie: So let me flip it around. Alex and Eric, both of you attend in geriatrics. I think probably you’ve been hospitalists at some point in your life, you do palliative care consultations. How feasible is it for the inpatient team who’s there? Somebody’s there 24/7 to have these conversations with a patient they’ve never met, hopefully with some input from a doctor who knows them, but sometimes just cold. How feasible is it to have these conversations?

Alex: Bernie, as you were talking earlier and praising the generations of doctors today who have training in palliative care and able to have these complex communications with family members, including forming a relationship really quickly with them, getting to know their loved one, who’s now seriously ill, who they may not have met before. They were seriously ill and had a chance to get to know. And I would say that this is the area where we need to make more progress. And that is when we are consulted in the ICU, it’s not infrequent that the ICU team hasn’t gone through the record to identify who the surrogate is, who the signed surrogate is, and who are the people who know the patient best, and what sort of conversations did they have previously about this and then taken the next step to reach out to them. One of the major services our team provides, and this is largely done by Ann Kelly, who’s a social worker on our team and has been on the podcast multiple times, you should see her sweating on the 300th episode, Hot Wings episode, hot ones episode.

But she often does this, and it’s just that ICU team is so grateful to have a hand-delivered paper copy of their advanced directive, which they didn’t see, to have the phone number for the surrogate and explanation about the complex family dynamics that have led to this point, and who are the people who are assigned, and they may be different from who the people who know the patient best, and things may have been evolved since that advanced directive was completed. And keeping family in touch about things about the current conditions as they’re progressing. Are the hopeful goals being achieved or are we falling short of them? That I would say is the next area in which I’d hope we’d make progress with the current group of physicians in training. Eric, what are your thoughts?

Eric: Yeah, I feel like a lot of value that we provide as a palliative care consult service is to do that legwork. And honestly, the ICU teams, the medicine teams, they are overloaded sometimes with patients. They’re busy, they’re doing a lot of different things. I know when I used to do wards, I was a terrible palliative care attending when I was also the ward attending. And it gives us the opportunity because we have more time in palliative care to focus on those things. I do think that some of the basics, like making sure that we’re updating the surrogate, which require us to find the surrogate is vital and something that we should educate folks about.

And I also wonder how much… I mean it gets to the bigger question. Me and Alex have had multiple podcasts on the value of advanced care planning, the value of advanced directives. And I do think we’re also throwing out some mixed messages out there about the value of these things versus newer approaches, serious illness communication, which also just feels like a rebranding of advanced care planning to me. And even with your New England Journal article Bernie, there is this idea that we’re moving farther away from the legal documentation of these issues to more of a communication based approach.

But also we’ve mentioned multiple times where that advanced directive, even during this conversation where that advanced directive actually played an important role. Oh, this is the document that says that this is your surrogate decision-maker. This was documented in their advanced directive as far as their wishes. I wonder from both of you, when we think about this tension between legal documentation and advanced care planning being a process focused around communication, is there a middle ground between that or are we really just like is this a pendulum back and forth?

Bernie: No, I think the pendulum does swing. The ideal thing, which doesn’t always take place obviously, is that it’s all one process that you start asking someone to talk about a POLST form or perhaps recommending that if you want so-and-so to make your decision, you might want to do it more officially, not the way most people would do it, but when you fill out that form, that’s a time for a conversation to talk with the surrogate as well as the patient. What would you want, what would you not want? And it’s a good chance to ask those questions that Laurie raised to the game, what would you be willing to go through, for what end purpose, and for how long?

And I always ask the leeway question. So I’ve heard you say that you would like, da-da-da-da, do I have that right? How much leeway would you give so-and-so who you’ve just say is your surrogate, if they think doing that is no longer possible or not in your best interest, do you want them to follow what you say literally or would you be willing to give them some discretion to do what they think is best in situation that you might not have anticipated. So I think if you have those conversations, document the chart, and hopefully someone can find it in the chart.

I used to put it on their allergies because people always look for the allergies.

Laurie: Tell you guys.

Bernie: But the other thing is then you can refer back to it when you’re having a later conversation, when the decision actually has to be made. Now as I understand it, you and Dr. Widera talked in clinic about this and that. Can you fill me in on what that conversation was about and what was said so that you refer back when you’re actually having to make the decision, it’s not sort of hypothetical future. Think back to that. And then you can always ask, has anything important changed since then? Either the medical condition or the patient’s goals or sense of who he or she, they, are. So you want to tie the whole thing together.

Laurie: I want to get back to what you said, Eric, about trying to get this information communicated, which I think is a huge problem. I mean, I can think of several patients in whom I’d written wonderful notes, but they were buried somewhere where people couldn’t find them or didn’t see them.

Eric: Or people keep their advanced directive in their safe or with their lawyer.

Laurie: Well, in the ideal world, I’d have an elevator speech for every patient that are describing who they are and what their general goals are. And then I want to get back to the POLST because the POLST historically was a wonderful advance because years ago, and this is a big change, I’ve seen people had DNR orders. There was the old out of hospital DNR, and those were wildly extrapolated. I remember a nurse calling me once for Chinese hospital and saying, I know so-and-so is DNR, but his systolic blood pressure is 60 and apologized for calling me. I said, yes, he’s DNR, but I want to know. And so then we got the POLST.

Eric: So when you’re saying extrapolated, you’re saying people are coming up with goals and values based on a simple medical order.

Laurie: DNR became over-interpreted as do not treat. And then the POLST came along. And that was great because there was a distinction between full out cardiac arrest, no pulse, no respiration and intensity of care in situations short of that. The problem is the POLST has become even more seriously over-interpreted. And that’s one of my problems with the whole comfort care designation, which I think a lot of people choose that without really understanding the ramifications. And a lot of people don’t, and a lot of clinicians don’t know how to interpret the answer.

There was something in Bernie’s paper that struck me. It said empirical studies, however show that POLST forms may not work as intended. In one study, 38% of patients who had POLST orders for selective additional interventions or comfort measures only were nevertheless admitted to an intensive care unit. And my comment on that is when they checked off comfort care, they might not have really understood what comfort care meant. So the way I’ve gotten around that, I mean I think we tried to add something in the last version that is not a substitute for advanced care discussions. It’s basically the POLST is really for first responders, what do you do when there’s no time to ask or discuss? But then it’s why do they have feeding tubes on there? That’s not that kind of discussion.

Eric: Well, Oregon took it out, right? I think was it Oregon or Washington Alex?

Laurie: And actually…

Alex: They did. Oregon.

Laurie: We argued about that with the revision and one very wise person said, it’s sort of a proxy for they feel about intensity.

Eric: Which is the problem with DNR. It’s hard to make a proxy out of something that is just a medical order.

Laurie: What I have taken to doing is using those lines under the limited treatment and putting in a goal, of a goal which is able to enjoy music and participate in activities at the nursing facilities or whatever.

Eric: And Laurie, what’s your issue with comfort… The POLST in California says comfort focused treatment. Other people say comfort care like in the hospital that’s used or lot. What’s your issue with that?

Laurie: What does that mean? I mean, if somebody has sepsis or dehydration, if the goal is to assure a peaceful demise, those are pretty comfortable ways to die. On the other hand, if that’s not the goal, if the person doesn’t want a lot of, you know ICU stuff but still sees value in living, those are relatively easily treated. When I see comfort care on a post, I don’t know what that means, and it’s a very different decision tree depending on what the goal. And the goal about treating reversible illness that we tried to put in with that got taken out. So the big thing we did with the revision was add goal statements. And you should have heard the discussion about the full treatment, calling it aggressive medical care. I forget all the different adjectives that we went through.

Eric: Because those full treatment include hospice and comfort focused medications.

Laurie: No full treatment means the full ICU.

Eric: Full treatment should also include hospice. That’s the problem with any label that we use.

Laurie: Yeah, but I think we tried to make it clear that that was talking about interventions. And the comfort care designation, it just says co-directed to maintaining comfort, which says nothing. It’s basically…

Eric: Primary goal of maximizing comfort versus full treatment is primary goal of prolonging life by all medically effective means.

Laurie: Yeah. Palliative care does sometimes prolong life, so you’re right about that, but I don’t think most people view it that way.

Bernie: Let me try and give some high level big picture points about POLST. I think it’s absolutely right. It’s crucial for first responders because it’s recognized. First responders understand it when they see a pulse, they are told to assume that if it says do not resuscitate, don’t resuscitate. And that’s really helpful for the first responders. The POLST to me is valuable when you don’t have time to discuss, and you need to make a decision right in the instance. And I think DNR and transport to hospital are those kinds of things. Once you’re in the emergency department, you usually have time to try and talk to a surrogate, family members, try and find out more information, clarify the medical situation, and when you can, you have to talk about it. One of the problems with…

Eric: Bernie Bernie, but before you go there, so we got a quote from Laurie about why POLST may not work because they’re not always followed, but are they followed because the POLST is just a medical order use in emergency. So the fact that somebody is being admitted to the ICU on comfort focused care may not actually be a sign that the POLST doesn’t work. It means that maybe it’s working. People are actually having these discussions and because it’s a medical order, medical orders can change.

Bernie: Right. The POLST shouldn’t rule anything except I don’t have time to talk, so I’m going to have to assume the pulse holds. A lot of people, they have a POLST from a while ago and no one’s updated to figure out is this still what the patient wants? Has the patient situation changed dramatically so that they couldn’t have imagined where they are now? The POLST is just a way of making decisions when you don’t have time to talk to someone about what’s going on and what would they want in that situation. Once you’re in the emergency room, even if you’ve had to do a crash intubation, you can always talk and decide is this what he didn’t want it or not want it? And you can always withdraw intubation, and give someone a palliative sedation if that’s what the patient would’ve wanted and what’s best for the patient.

Eric: Can I ask you another question about what the patient would’ve wanted? We know that it’s very hard to figure out what the patient would want. You got an idea of values like what’s important to people, what brings them joy during the day? All of those things that Laurie talked about too, like going back to the straw hat. But actually for a surrogate to guess what a patient would want around a particular intervention is very, very challenging. And we also mentioned this is that people also change their mind over time. We’re adaptable.

Bernie: It’s a false premise that I’m not making decisions as a family member, I’m just saying what he would’ve wanted. So I don’t need to go through some difficult decision making. I don’t need to feel guilty. In fact, most surrogates understand that they’re making the decision, and it’s not just based on what the patient would’ve wanted if that could even be known, but it’s what’s best for the patient at that time given their medical situation and given who they are at that time. And that includes changes that might’ve happened over the past couple of weeks, couple of months, couple of years.

Laurie: The way I view this…

Bernie: It’s responsibility, and that’s why we now know that people who are surrogates get depression, PTSD, anxiety after they make those decisions because it’s a big responsibility. And one of the things that prepare does and advanced care planning at its best can do is say, this is a big responsibility and it’s going to be hard, but it’s something important that you can do for someone whom you love very much.

Eric: Prepare for your care, Rebecca Sudore really preparing surrogates to make these decisions when the time comes. Laurie, you were going to say something?

Bernie: Emotionally.

Laurie: Yeah, I think that’s why I like to have emphasized that these discussions should be not in medical terms. Do you want this, do you want that? Do the other. And even when you have discussions with surrogates, what are the goals? What does the patient want? I mean, because if I know, if I have a good sense of the person, what their life is like, what’s important to them and how much they’re willing to go through to maintain that, then I can say, we could do this and there’s a small chance it will help, or we could do this and there’s a good chance that it’ll help. Maybe we should try it.

Or even if we do this, it’s unlikely. Then you’re not putting the onus of the decision on the family. Well, at least you’re making a goal-directed decision. You’re helping them to make a goal-directed decision. A lot of times families say, I want to do what the doctor does. I want the doctor to decide. And to which I say, “Fine, but for the doctor to decide, they really need to know who this person is or that’s the right way to make the decision.”

Eric: I know we’re up against the top of the hour. Do you each have five more minutes?

Bernie: Yeah.

Laurie: We do.

Alex: You do. Okay, good. Laurie, when we were talking beforehand, you had an analogy you wanted to convey to our listeners something about a rocking chair.

Laurie: Oh, yeah. I sort of view these conversations as sitting back on the porch in Kentucky, looking out at the scenery and talking about what’s important in life. I mean, have a discussion that’s not laden with, I got to fill in this form. What’s important? Hey, who are you? How’s your life going? What’s been going well for you? What’s not going well? What do you think? That’s what I mean by a rocking chair discussion.

Alex: I love that analogy. And for our listeners who don’t know, Laurie was a country doctor in Appalachia and probably sat on the rocking chair having those kind of conversations with patients. Eric, how do you want to wrap this up before I do a little bit more of Both Sides Now?

Eric: All right. My last question, both of you, is we’ve talked about how we got here over time. And Bernie, your New England Journal paper talked about how these decisions and how we make these decisions evolve over time. And we see that with advanced care planning, advanced directives, we struggle with them still. And I hear from Laurie, this is much more about the conversation dictates the documentation, not the other way around. So the POLST is not your conversation guide, it is your documentation of the conversation. Is that a reasonable summary, Laurie?

Laurie: Good way of putting it, yeah.

Eric: Yeah. I wonder where do you see this evolving in the next five or 10 years to both of you? What’s next?

Bernie: Well, I think forms and laws will continue to evolve. I think that there’s always a back and forth in POLST, and there’s a lot of diversity in states. Some states like Washington, Oregon are exiting things out of the POLST because they don’t find it helpful. People don’t understand it, and it’s really confusing and misleading. I think we’re going to have changes, and that people are going to realize that surrogates and doctors are in fact taking responsibilities for these decisions. The doctors may be guiding it, but they’re guiding it in very ways that run along tracks. And that’s probably the way it was 50 years ago, 100 years ago. And that’s not such a bad thing as long as the doctor doesn’t project onto the patient or the surrogate isn’t saying, I can’t believe he would do this because that’s just so wrong, and you can’t do it that way.

I think we need to be more humble and say, I really don’t know, but this is the best I can do given all I know about the patient, all I know about the situation. And I’m going to have to live with this, and all I can do is the best I can do. That’s probably more realistic than saying, I’m certain this is what the patient wanted because that’s what they said. I hope the law continues to allow flexibility in individualism.

One of the most awful things about the Cruzan decision was the state ruling saying, no one doubts that the Cruzans are a very loving family who want only the best for the patient. Nonetheless, we cannot make policy based on this family. We have to think about all the rotten families there are in Missouri and protect patients against them. No, you make clinical decisions based on the patient and family at hand.

Eric: Yeah.

Alex: The lawyer arguing that for the state of Missouri was Ken Starr who later investigated the Clintons around the Whitewater affair. He was the special prosecutor. Fun fact. Laurie, how about you? What do you see ahead? What are you concerned about? What’s your hope for the future?

Laurie: I just see continued evolution. I hope that the electronic medical records make strides in capturing these kind of discussions and making them accessible rather than turning into checklists or, here’s the POLST. We’ve been working on our advanced directive page at On Lok, and I just hope that records evolve to capture nuance, readily accessible nuance in a readily accessible way.

Bernie: And sometimes the best thing is the old-fashioned way of putting that note that summarizes beautifully the conversation, giving it to the family and the patient and say, keep a copy on your refrigerator. Bring it to the emergency room because they’ll never find it in the chart. Put it on your thumb drive and give it to the…

Laurie: That’s an incredible stealth idea though, of putting it in the allergies.

Bernie: That doesn’t work.

Eric: Allergy to intubation. Well, I want to thank both of you for joining us on this podcast, but before we do, Alex, you going to sing for us a little bit more?

Alex: I’ve looked at life from both sides now from win and lose, and still somehow, it’s life’s illusions I recall. I really don’t know life at all.

Eric: Bernie, Laurie, thanks for joining us on this podcast.

Laurie: Thank you.

Bernie: Thanks for having us. It was a lot of fun.

Eric: And to all of our listeners, thank you for your continued support.