Time Stamps

  • 01:09 Background Information 
  • 03:54 Surrogate Challenges 
  • 16:04 Clinician Challenges 
  • 36:10 Conclusion 

Show Notes

  1. Intro 
  2. Background info about surrogate decision-making 
    • How do surrogates get this role?
    • When do surrogates get involved?
    • How are surrogates supposed to make decisions?
      1. Expressed wishes: The patient has documented withes in an advance directive, or has made statements in the past about what they would have wanted if they became sick
      2. Substituted Judgement: Surrogate is asked to make decisions that are in line with what the patient would have chosen for himself
      3. Best interests: Surrogate is asked to make the decision most likely to protect the patient’s well-being in terms of pain, suffering, quality of life, and potential benefit
    • Surrogate Challenges 
      1. Challenge 1: People don’t always know what they’re getting into
      2. Challenge 2: It’s tough to truly know a patient’s goals of care
      3. Challenge 3: Surrogates have to make these decisions despite everything else going on in their lives
      4. Challenge 4: These are incredibly difficult decisions to make
        1. Family members of 284 patients who had been admitted to the ICU were asked to complete a survey about PTSD symptoms 90 days after discharge or death. The study found high rates of symptoms consistent with moderate to major risk of PTSD in 47.8% of family members who participated in shared decision-making, and 81.8% of family members who shared in end-of-life decisions (81.8%).
  3. Clinician Challenges 
    • Challenge 1: Sometimes surrogates make decisions that seem to differ from the patient’s stated wishes or living will. 
      • A meta-analysis looking at studies measuring the concordance of patient and surrogate decision making found that surrogates accurately predicted patient preferences only 68% of the time.
      • However, this may because people’s preferences change over time. 401 people over the age of 65 were surveyed several times over the course of two years. In these surveys, they were presented with several serious illness scenarios and asked what their preferences would be for life-sustaining medical treatments. Preferences fluctuated over the course of these two years: specifically, the 88 people who were hospitalized during this period had a dip in their wishes for life-sustaining treatments shortly after discharge, but this change in preference was fleeting, and their preferences tended to return to prehospitalization levels several months later.
      • Many patients are ok with surrogates and physicians using their own judgement. A 2000 study surveyed 1100 hospitalized adults found that about 70-80% would prefer to have their family and physician make decisions about resuscitation for them if they were to lose capacity. Only 20-30% wanted their advance directives strictly followed.
    • Challenge 2: Clinicians think the patient is receiving medically futile care when surrogate wants everything done
      • Remember that our idea of a “good death” may not be what our patients want for themselves. Physicians and patients often have different values at the end of life. For instance, 48% of patients surveyed agreed that they would want all “available treatments no matter what the chance of recovery”, whereas only 7% of physicians agreed with that statement
  4. Lessons for Clinicians
    • Lesson 1: Start with listening
      • “Problems with communication between clinicians and surrogates in ICUs have been well documented; these include a failure to conduct timely interdisciplinary meetings with the family, missed opportunities to provide emotional support to surrogates, and inadequate discussion of prognosis, patients’ values, and the option of comfort-focused treatment. These breakdowns in communication may contribute to the use of expensive, burdensome treatments that do not align with patients’ values and preferences and to long-term symptoms of psychological distress among surrogates.”
      • Allowing surrogate decision-makers to be heard has a big impact on their experience. A 2004 study in Critical Care Medicine tape-recorded and analyzed 51 family meetings. The length of the meetings didn’t have an impact on family satisfaction, but the proportion of the time families spent speaking was positively correlated with family satisfaction, and negatively correlated with family ratings of conflict with the physician.
      • A study of surrogate opinion of physician communication found that surrogates found it helpful to have frequent contact, lots of jargon-free information about the patient, and emotional support.
    • Lesson 2: Validate Emotions
      • A 1999 study of breast cancer survivors wanted to know if 40 seconds of time spent providing emotional support could reduce patient anxiety. They showed study participants a video of a physician explaining metastatic breast cancer treatment options to a patient. There were two versions of the video; a “control”, and an “enhanced compassion” video in which the physician spent 40 seconds providing emotional support. Participants showed the “enhanced compassion” video were less anxious than participants who were shown the “control” video.
    • Lesson 3: Provide prognostic information
    • Lesson 4: Provide Guidance
    • Lesson 5: Encourage these discussions early and include surrogates early
      • A 2007 study of family members of 126 patients dying in 22 ICUs in France found that family members who had longer end-of-life conferences, spent more of the conference time talking, and were provided with a brochure on bereavement had lower rates of PTSD 90 days after the patient’s death (45%) than family members who were in the control group (69%)
      • A 2013 survey of 35 surrogates who had recently made decisions for an inpatient 65 or older found that they often stated that they wished they had more information about the patient’s wishes, and without that information they struggled to feel confident in their decision. The study recommended that advance care planning could help fill the gaps in surrogate knowledge and alleviate the stress associated with decision-making
  5. Take-home tips/Conclusion 

Transcript

I. Intro

Ali: I feel pretty comfortable that, that we need the right decision for her, but it’s still something that I think, I don’t think I realized how hard that decision would be to make.

Margot: We wanted to start off with the voices of people whose experience doesn’t always reach the spotlight: surrogate decision-makers. Surrogates are people who make decisions for patients who can’t make decisions for themselves, and they face a unique set of challenges that we don’t generally learn about in our training. Today we’re going to talk about those challenges, and find ways that clinicians can support surrogates through the decision-making process. 

Welcome back to At the Bedside. I’m Margot

Jafar: I’m Jafar

Tamar: And I’m Tamar

Margot: Let me introduce our expert, Dr. Lisa Vig, who spoke with us about her research on surrogate decision-makers.

Dr. Vig: I am a geriatrician and a palliative care specialist. I am based at the Seattle VA hospital and I am also on the faculty at the University of Washington. I am the Chair of the Ethics Committee, uh, here at the VA.

Margot: We’ll also be speaking with four people who have been surrogate decision-makers, who we’ll introduce in full a bit later. 

II. Background info about surrogates

Tamar: 

We wanted to start with a very brief bit of background on how surrogate decision makers, or healthcare proxies, get appointed and how they make decisions. So they’re usually chosen by patients, either in an advance directive or by just telling a clinician, which often happens when a patient is admitted to the hospital. If a patient doesn’t have capacity and doesn’t have a surrogate, there are legal hierarchies that we can follow to designate one. For example, in New York, it’s a legal guardian, followed by a spouse or domestic partner, then an adult child, and so on. 

But how are surrogates supposed to make decisions for the patient? What are they supposed to take into consideration? The usual expectation is that they’ll follow the patient’s expressed wishes, either from conversations they’ve had or an advance directive. But often this information doesn’t account for every possible situation. So then what?

We ask surrogate decision-makers to use substituted judgement. Essentially, we’re saying: “You know the patient well, what would he have wanted if he could make this decision for himself?” And we kind of take that for granted, but if we think about it, why is substituted judgement considered the best path forward? And is it really that achievable?

Dr. Vig: If you look in the ethics literature, there’s actually kind of a raging debate about this. In America, we are very autonomy focused. If we’re focusing on autonomy, we’re letting people make their own decisions, then I think substituted judgment sort of arose when people couldn’t sort of participate anymore as a way to continue to honor their autonomy and their personhood when they couldn’t tell us what they wanted anymore. But as we know, that’s problematic, right? Because there are a bunch of studies that show, you know, they’ve asked the patients what they would want and then they go find their surrogates and ask them what the patient would want, and then they match it up and it’s really not that great.

Tamar: So as Dr. Vig points out substituted judgement doesn’t always meet its goal. And beyond that, sometimes a surrogate may not even have a guess for what a patient would want. So then what? If the patient’s known values can’t guide the decision then we turn to the best-interest standard: the decision most likely to protect the patient’s well-being in terms of pain and suffering, potential benefit, quality of lifeBut, unfortunately, this can also get pretty subjective. So surrogates really have their work cut out for them, both with each difficult decision, and the difficult emotions each decision brings. And the rest of the episode will really focus on how to help them in this hard position. We’ll start by hearing firsthand from surrogates about some major challenges they faced, then we’ll think about some challenges from the clinician’s side, and finally review some basic takeaways to better support surrogate decision-makers in this incredibly tough role.

III. Surrogate Challenges

Margot: Now that we’ve talked about some of the logistics around surrogate decision-making, we wanted to turn to the surrogates themselves. We interviewed 4 people who have served as surrogate decision-makers: Jennie, Ali, Mariah, and Judy. I want to point out first that these aren’t a representative sample; we polled our social networks, and so we ultimately spoke with people who are English-speaking, health literate, and either have doctors as friends, or in the case of Ali and Mariah, are physicians themselves. And given that these are people with a decent amount of privilege in that respect, it was humbling for me to hear how hard this was even for them.

Challenge 1: People don’t always know what they’re getting into

The first challenge that came up in these interviews was that it wasn’t always clear what the role was, or how much of a responsibility it could become. Here’s Jennie, who made decisions for her mom.

Jennie: My mother had primary biliary cirrhosis. She was diagnosed when I was very young. She actually had it twice. The summer before she passed, which was the summer of 2018. Due to various life circumstances, I became her health proxy.

Margot: As she points out, there isn’t exactly a “surrogates 101” course out there.

Jennie: I had very little knowledge of what being a proxy meant. I just kind of signed the paperwork. I don’t know if people usually have a conversation about what it actually means to be a surrogate. And it wouldn’t have changed anything, right? I still would’ve done it. Um, cause I needed to, and I knew it was the right thing to do, but I think it would have been helpful to me to know, what that would mean. 

Margot: Dr. Ali Trainor spoke about this as well. She spent last year as a pulmonary critical care fellow at the Harvard combined program, and will be returning to fellowship after spending this year as a chief resident at Beth Israel Deaconess.

Ali: I feel like having been in the opposite end of that conversation, being the one, guiding people through making these decisions for their family members, I, I thought that I knew what it was like to be with a family member, but I don’t think I really had the extent. I wish I knew maybe just a little bit how big of a burden it would be, even if you feel like you have a clear sense of what the person would want and what their prognosis is.

Margot: Ali and her mother shared decision-making responsibilities for her grandmother.

Ali: So when I was, um, a senior resident, my grandmother, um, who had long standing heart failure was being evaluated for a TAVR because she was having worsening or aortic stenosis. And unfortunately, before she completed the workup, she actually ended up, um, having multiple admissions for cardiogenic shock. 

Challenge 2: It’s tough to truly know a patient’s GOC

Margot: Another theme that came up in these conversations was how challenging it was to understand and honor the patient’s goals of care. First, it’s hard to have serious conversations – here’s what Jennie said when I asked if she felt like she had enough information about her mother’s wishes.

Jennie: No, not at all. And I don’t think anyone did. I mean, when you’re dying for 26 years, you don’t want to think about dying. You don’t want to think about the end.

Margot: Jennie was eventually able to get her mom to talk about her goals of care, but it wasn’t easy. This is a really common issue, which makes it impossible to decide based on expressed wishes, and tough to use substituted judgement. But even in cases when patients are willing to have conversations about serious illness and death, it’s still hard to feel truly prepared. Dr Mariah Robertson, a geriatrics fellow at Johns Hopkins, spoke to this sentiment when it came to her mother.

Mariah: My mom was diagnosed with early onset Alzheimer’s disease. I really was like the decision maker for her, uh, the first two years of medical school, when she really had declined quite a bit and I needed to actually make, um, make decisions on her behalf. My grandmother had Alzheimer’s disease as well, and she was, she lived with us and my mom was her surrogate decision maker. And so we had many conversations in the context of my grandmother, um, that allowed me to better understand what my mom would want, um, based on how she honored my grandmother and how she spoke about what she would want in that context. We did formal paperwork, um, medical power of attorney and financial power of attorney and all of that paperwork involves some level of outlining what, um, decisions I would be making in her behalf. But, um, you know, as an advanced directive does, um, but it, you know, at the time I remember being like, Oh, this is way more information than I need. And then later, you know, as you’re actually making decisions, you’re like, man, I wish I had asked more details. Like I wish I knew more about what she really had hoped for.

Margot: Even with plenty of information, it’s still tough to figure out exactly what to do.

Mariah: The little intricacies of what happens as somebody declines in a disease process and, you know, you never know how that will look and what the person will, how their disease will progress. And so for her, with dementia, you know, it’s, it’s one thing to say, like, don’t do X that might prolong my life, but then, you know, you get to the point where you’re sort of deciding like, do I take her to the hospital if she, um, aspirates, or do we not like, would you want to be made comfortable if you could get antibiotics and be able to recover from an infection, but your cognitive function is poor. So in her case, um, she aspirated and, um, she, they, they ended up sending her to the hospital, even though that wasn’t part of what we had hoped for her. Um, but then I was kind of faced in the ED with a decision of like, do we treat this, put her on BiPAP, give her antibiotics and see if she recovers or not. And, and in the moment, you know, even though I knew like big picture, 30,000 foot view, what we had talked about, her wanting and not wanting, it’s like another ball game when you’re kind of in the ring facing it. Like how can you ever walk through every single possible scenario? 

Challenge 3: Surrogates have to make these decisions despite everything else going on in their lives 

Margot: A third challenge came up in our conversation with Judy Friedman, who helped make decisions for her father. 

Judy: My father for the last, I want to say five years of his life, um, struggled with his diabetes and struggled with his kidney function and struggled with pulmonary issues. He was in and out of the hospital with constant UTI infections. And UTI infections I’m told at that age and men, um, very often brings on the dementia that he suffered from every time he had a UTI infection. The last time he went into the hospital with the UTA, it started out as a UTI with his numbers going very high. And from there, it just, everything sort of this system really just started, um, as the systems were shutting down is where we started having to make some decisions.

Margot: She spoke about how difficult it was to balance her decision-making responsibilities with everything else going on in her life. Judy lives in New York, but wanted to be there for her dad when he got sick.

Judy: For the three months prior to that, where he kept being hospitalized and then every time he was hospitalized, I would have to fly down to Florida. 

Margot: There was also a tremendous amount of stress on her mother.

Judy: Not only did he not have a quality of life and kept getting sick, my mom had no life either. She was either working or running with him to the hospital one or the other. There was no, there was no time for anything else because he was constantly being admitted to the hospital.

Challenge 4: These are incredibly difficult decisions to make

Margot: Finally, all the surrogates I spoke with talked about the emotions that came up for them, emotions that in many cases they grappled with for months or years after their loved one’s death. Mariah spoke about how hard it was to honor her mother’s wishes by letting her go.

Mariah: And I think also the hard part is like, I loved her, you know, being with her, even though her quality of life was probably not, um, as good as it, or it probably wasn’t much, but like she, you know, I still valued being able to visit my mom, even though she didn’t have, um, like great cognitive function. And so, you know, how do you set aside what your selfish wishes are for like what you, you know, you want and, and what, what actually is in line with what they would want? So she had aspirated, and they sent her to the emergency room and I was in the emergency room and the physician was like, okay, we’re going to take her upstairs and give her antibiotics and we’re going to put her on the BiPAP, but I think she’s going to be okay. You know, I know she’s DNR DNI, but you know, I think she’s going to be okay, we’ll get her back. And in that moment I was like, Oh, that sounds really nice… like, let’s do it right? Like, keep her on the BiPAP, which she looked miserable on, by the way, um, you know, give her IV antibiotics, like give her some fluids, admit her to the hospital and let’s just do this thing. Cause I value so much like being close to her, but I knew, like I knew that, um, I had felt for months that like, this was not the quality of life she would have wanted. I knew based on how she talked about my grandmother’s state and how she felt about her own state, if she got sick, that that would not be what she would want. But in the moment it was very, very, very hard not to say like, yeah, just do those things. Like I want her around… I need her around longer.

Margot: Surrogates often have to work within complex family dynamics, which has the potential to place a strain on their relationships. Here’s Ali.

Ali: I think one of the biggest things I struggled with at the time, and then I still find a little challenging is a little bit of a feeling of guilt. So I think my family has, has never said these words to me, but I think being the one in that situation who had the medical knowledge, I was really guiding them and making the decisions that we made. And I, again may have never, never said to me that they blame me or feel like I made the wrong decision, but I, I really was the one making the decision. And I, I guess sometimes wonder if they place any blame on me.

Margot: When surrogates allow a patient’s care to be capped or de-escalated, they can feel a sense of responsibility for their loved one’s death.

Ali: I know that my grandmother wouldn’t have wanted to be kept alive in a way that isn’t consistent with the way she was living her life before. And I do feel like I made the right decision, but I think, um, it was still so hard to finally make that call and say, you know, this is, this is the time to switch our focus and keep her comfortable because although I can rationalize and know that we are not really making this decision, she’s in her nineties and it’s her time, it feels like you’re the one deciding its her time, even though I can conceptualize that that’s not actually the case.

Jennie: It was so important to me that she died a good death when it became clear that she was going to die. And, the options that were available to me and to her family were limited. And, the feeling that I will have for the rest of my life that I made the decision for my mother to die is one that I will have to live with for the rest of my life. 

Judy: Even knowing that it was the right thing to do the end of it at the end of it all, I still, I still send my father to die.

Margot: Between the death of a loved one and the weight of the decisions, surrogates often have emotional trauma that can be incredibly difficult to overcome.

Judy: There was, most of it was guilt. I pretty much spent the next, the year. It took me about a year after he passed to really come out of that, like depression type, you know, emotion. I mean, I was still, you know, I was still living life. I got up, I went to work everyday. I did what I needed to do, but, there was just, no, you know, there was no happiness, there was no joy. My children are not my medical proxy. I refuse to allow them to be having gone through it myself. I will. I refuse to allow my children to be my medical proxy. I don’t want them to have to make that decision.

Jennie: It was painful. It was horrible. Um, it has taken years to get over. Um, the things that I saw are things that I would not wish on anyone. I had nightmares about it for years. Um, I still have nightmares about it. Um, I was diagnosed with PTSD, like it is very serious to be a surrogate.

Margot: Studies have shown that anxiety, depression, and PTSD are common in people who have been surrogate decision-makers. Rates of PTSD symptoms are as high as 80% in surrogates who have made end-of-life decisions for a patient in the ICU.

IV. Clinician Challenges

Challenge 1: Sometimes surrogates make decisions that seem to differ from the patient’s stated wishes or living will. 

Jafar: It is incredibly humbling hearing the pain that patient surrogates have to endure, and so it’s no wonder that this grief spills over to us as clinicians and can make our job supporting them very difficult at times. We want to take some time now to outline a few particularly tough challenges, and then we’ll end the episode with some big takeaway lessons we learned from our surrogate speakers. 

So the first major challenge:  What do we do when a surrogate seems to be making decisions that differ from a patient’s stated wishes or living will? 

These situations are unfortunately pretty common. A meta-analysis looking at studies measuring the concordance of patient and surrogate decision making found that surrogates accurately predicted patient preferences only 68% of the time.

Dr Vig: So there are different reasons why a surrogate might make a decision that seems inconsistent. I mean, we already mentioned how, you know, a living will is not going to address everything, right? So it may be that, or sometimes it’s because the situation has changed. Right? I completed my living will, 20 years ago, since then I’ve had experiences that have led me to change my outlook.

Jafar: Right! And it turns out that many studies show that patient treatment preferences can be very inconsistent over time. For example, a prospective series of patient interviews showed that patients have one perspective on treatment when they’re a healthy outpatient, and another when they’re hospitalized, and even revert back after discharge. Patients who say they could never tolerate living a state of disability end up changing their treatment preferences when they do actually experience some disability–you know, maybe realizing that quality of life is possible even with compromised health. Surrogates may have insight into this, and it’s why we’ve come to rely on them in these situations.

Dr Vig: So I think the thing to start out with is to sort of approach the situation with curiosity and not automatically assume bad things about the surrogate and their motives and sort of take the time to be human in a way, and just sit down, spend time with the surrogate and hear their perspective and hear the reason why they are saying what they’re saying.

Jafar: Still, we do have reason to believe that surrogates may be seeing things from their own perspective, rather than just the patient’s–something Dr. Vig realized in her own work interviewing patient surrogates. 

Dr Vig: Sometimes it’s the fact that the surrogate is sort of, not really sure yet. Maybe they’re getting used to the fact that their loved one is really sick or maybe they are waiting for more time to pass in hopes that the person will get a little better.
 
Jafar: Ah, see this is the part that makes me worried–the surrogate wants something for themselves and their own emotional wellbeing that doesn’t jive with what the patient would want for themselves. And at the end of the day, aren’t the patient’s wishes the final word? This always seemed pretty clear to me, but Dr. Vig actually pushed us to see beyond this kind of black-and-white thinking:
 
Dr. Vig: I think, or at least when I went to med school, we were sort of taught to focus on the patient and yes, the patient is our primary duty, but as someone who does geriatrics and palliative care, in both of those specialties, the family perspective also matters. And so there’s one sort of approach of relational autonomy where you don’t just consider the patients, but also those around them. And I think, you know, if we’re going to think about outcomes for the patient, but also good outcomes for the family, taking out sort of a relational autonomy approach might make more sense. And, you know, there is a literature on leeway and on patients saying, you know, this is what I want, but if, you know, she can get on with her life easier, having made a different kind of decision and I’m in a state that I don’t really want for awhile, that’s okay. Because I care about that person. Um, so that was sort of how we thought through that approach.
 
Jafar: Right! So – paradoxically – it may be an extension of the patient’s autonomy to allow their surrogate to make decisions that they can live with, even if the patient wouldn’t have chosen that for herself.  And this bears out in published surveys of patients, where only about 20-30% felt that their advance directives should be strictly followed to the T. In other words, most patients understand that their surrogates will have to use some of their own feelings and judgement to navigate the situation, so maybe we don’t need to be quite so distressed that we’re doing wrong by the patient when we listen to their surrogates.
 
Challenge 2: Clinicians think the patient is receiving medically futile care, surrogate wants everything done
 
Jafar: But this brings us to another major challenge for clinicians: what should we do when the surrogate wants “everything done”, but the medical team feels that the care is futile?
 
Dr Vig: I can’t tell you how many times, you know, in like a palliative care or an ethics consult, you know, the team has sort of decided that things are futile. They’ve had multiple family meetings, they have sort of barreled ahead thinking that the person should be DNR and thinking that they need to switch to comfort care, but haven’t first sort of taken the time to get to know the patient’s perspective. Because if you have somebody who is sort of vitalist, meaning every second of breathing or your heart beating is worth it, regardless of, you know, cognitive status, etc… If that is the person you’re caring for and you don’t know it, then you can, you know, bring up DNR as many times as you want, but they are probably not going to budge. And so if you put yourself in the family’s shoes, every couple of weeks, they’re getting a request for yet another family meeting where yet another bunch of new doctors who they don’t know or trust are going to try to back them into a corner about DNR again. And, you know, people start wondering why the family stopped visiting or why they stopped answering the phone. It’s because every time they do, people are bringing up the same damn thing over and over and over that just doesn’t fit with the way they see the world.
 
Jafar: Ah yea, I’ve definitely been guilty of this–thinking the situation is all about us and how well we can talk them into seeing things our way. And you know, maybe in a way we’re trying to vent our moral distress to the family–like saying to the surrogate that if you saw what we saw caring for your loved one, you wouldn’t want to keep pushing medical care like this. But then again, these are questions about values, rather than right or wrong, and it’s worth noting that those of us in medicine often have different values than our patients. For instance, published surveys show that healthcare professionals had a significantly greater emphasis on dying at home rather than in the hospital.
 
Dr. Vig: I think reminding people that not every death is going to end up the way we would like it for ourselves and that’s okay. Um, and sometimes for families knowing that everything was done is going to help them.Jafar: Ultimately, the surrogates will be the ones carrying the patient’s memory long after we’ve left their care, and our time together with them at the end of a patient’s life helps shape that final memory. So serving the needs of surrogates is also in a way serving and curating that patient’s legacy within them. 
 
V. Lessons for Clinicians
 
Tamar: So what can we do to better support surrogate decision-makers in these incredibly difficult roles? We’re going to go over some of the lessons we learned from hearing surrogates talk about their experiences.Lesson 1: Start by listening 

Tamar: The first thing is obvious: there are just so many breakdowns in communication about difficult situations with a patient’s loved ones. So where should we start? Dr. Vig’s big message was to always begin by listening.

Dr. Vig: Starting out not barreling ahead with your own agenda, but sitting down, sitting down, taking the time to hear the surrogate, talk about the patient’s life so that you have a sense of that person, but also letting them talk about their own life and validating the emotions that they’re having… validating that it’s really stressful to have a loved one who’s so sick and to be making these really hard decisions.

Tamar: And the importance of listening goes beyond just the information we can learn from the surrogates. Allowing surrogate decision-makers to be heard has a big impact on their experience. A 2004 study in Critical Care Medicine tape-recorded and analyzed 51 family meetings. The authors found that family’s satisfaction with physician communication was not associated with how long these meetings were, but instead the proportion of time that the family spent speaking, rather than listening to the physicians. Still, time can feel like the precious resource we don’t have. But Dr. Vig again provided an important perspective:
 
Dr Vig: So I’m kind of biased, but I think if you take the time early on, it’ll save you a whole lot of time later on because it’s kind of all about trust, isn’t it? And taking the time to gain that surrogate’s trust. And I think you, as the overworked intern, don’t have to be the only one doing this. There can be other people who are part of the team who, you know, the surrogate recognizes as members of the team who might have a little more time like our chaplain.
 
Lesson 2: Validate Emotions
 
Jafar: This takes us to our second lesson:  when leaning into these conversations, don’t miss an opportunity to validate emotions. Studies show that even 40 seconds of time empathizing with patients or surrogates can decrease anxiety levels and increase trust. Surrogates are in an incredibly vulnerable place, and validating emotions is just a concrete way of showing our support.  Having been in that position, Ali now uses her experience as a surrogate to inform the way she talks to families in the ICU: 
 
Ali: I think the biggest thing that has stuck with me is whatever the family ends up deciding is, is what is right for them and is what is right for their family member. And so once they’ve made their decision, I tell them firmly that they’re making the right decision, because I think that’s something that people struggle with afterwards is wondering, did I do the right thing? So I try and really emphasize that to them and say, you know, them fast, you’re making the right decision. Um, and the other thing I try and say to people too, is if they make the decision to make the patient comfort measures only then I’ll say to them, you know, this feels like you are making this decision, but this is your loved one’s time. And their body is really making this decision. And you’re just respecting that and allowing them to pass peacefully and, and you’re doing the right thing. I don’t always necessarily agree, but I have to realize that they know way more about this person than I do. And so I need to respect that and just affirm for them that they are doing the right thing.
 
Jafar: Like we were discussing before, what we consider to be a good death isn’t everyone’s concept of a good death. We’ve only known this patient and their surrogate for a very short time, so we have to have faith that the decision they’re making is the right one for them
 
Dr. Vig: And another one that I have thought about a lot since then was surrogates making a decision that they realized that they could live with. Cause I think in a lot of these cases, the patient is going to die regardless whether they die this week or two months from now, but the surrogate is going to go on. And if they have made decisions that they feel were the right decisions, I suspect they will have less problems after the death.
 
Jafar: One of the absolute worst things we can do as clinicians is to get confrontational with surrogates as they’re going through this difficult process:
 
Mariah: I, I have like burnt into my mind, the ED physician telling me I was going to kill her. They said, you know, she’s going to die. You’re killing her if you don’t put her on BiPAP and if you don’t put her on antibiotics. It’s burned in my mind and my memory that that doctor told me I was killing my mom in that moment, you know, and I, I know that that’s not true, but I can see how surrogates could feel extreme guilt if they were trying to sort of, um, honor whatever their family member had communicated to them, or honor their best interpretation of what that was. Um, and to be told by a medical provider that they’re being negligent or that they’re harming them, or that they’re killing a family member like that, that stuff really sticks with you and can really, really, really harm the way you remember, um, your family members like life and their death.
 
Jafar: Words matter, and even one off-handed comment can have a tremendous impact. As we move from one case to the next, it’s easy to forget that we’re curating what may be that surrogate’s lasting memories of their loved one’s illness or death. 
 
Lesson 3: Surrogates need good, honest prognostic information
 
Tamar: The next takeaway is how important it is to provide honest and clear prognostic information. 
 
Judy: While he was in and out of the hospitals, there’s not one doctor that said we can make him stable, but we can’t make him better. Had they said that to me earlier on, within the last, you know, year of his life, um, we may have done things, you know, differently so that he didn’t have that, you know, six weeks of suffering at the end that he did.
 
Tamar: And the more clinicians are involved, the harder it can be for the surrogate to get a clear message. Dr. Vig’s own research has shown that surrogates often get confusing and conflicting information from multiple medical team members and here’s her suggestion: 
 
Dr. Vig: Sometimes what we need to do is actually have a provider meeting. So not with the family, not with the patient, but all of the different disciplines in the same room to all talk about their different perspectives. So we can all get on the same page. So we’re not all going in and saying different things that’s confusing the family.
 
Tamar: It’s important to remember that straightforward information on prognosis not only impacts decisions, but also expectations. 
 
Jennie: And I was sitting in her gastroenterologist office and he was talking about getting a TIPS and I texted  a bunch of my medical friends and they were like, do you know how serious it’s like, do you have any idea how very, very serious that is? And, and meanwhile, her doctor was saying, Oh, you’re going to be great. Like 10 years you’ll have 10 years longer. Like this is going to be totally fine. And the TIPS went horribly wrong. Um, it went, it went very, very wrong.
 
Tamar: And we’re not saying giving prognostic information is easy, but it’s so important. And if you’d like to hear some pointers on how to go about it, we’re going to put a quick plug here for our At the Bedside episode on that very topic. 
 
Lesson 4: Provide Guidance
 
Jafar: This brings us to Lesson 4: surrogates need guidance.  The information we deal with is complex, and levels of health literacy will vary. Start off by clarifying the role of surrogate, which is to represent the patient’s values. Our role as the medical team is then to help translate those values into medical decisions. 
 
Dr. Vig: If we know the patient’s values and preferences, sometimes for the surrogates, it can be helpful if we make a specific recommendation because that by doing that, we’re sort of sharing the burden of decision-making. But as I said before, we can’t make recommendations that aren’t based on the patient’s preferences.
 
Jafar: Trying to think through each decision alone as a surrogate is just needlessly stressful, as Jennie pointed out to us:
 
Jennie: Early on in her hospitalization, when she wasn’t waking up, for some reason, they had to make a decision whether or not to put in a line. This resident calls me and is like, should we put in a line? And I was like, I don’t know. I’m not a doctor. I don’t have any medical training. Like, do you think she should have a, have a line put in? I think there’s some sort of, there’s some sort of middle ground here, right? Where like, the people I know, want to feel empowered to make their own health decisions. There are certain decisions that I think, um, like if you don’t have medical training, you just don’t know, you know, what the right thing to do is.
 
Jafar: Very often, surrogates get worn out by the number of decisions they have make, in part because, from their perspective, each one can feel so significant and stressful to think through:
 
Jennie: I think the clinician should be aware of decision fatigue is another thing. Um, but the time I got in touch with palliative care, I had already been asked to make hundreds of decisions. And I know that doctors also have to make hundreds of decisions a day, but that’s their job. And they’re knowledgeable about the decisions they’re making. Whereas I started to feel like every decision I had to make, I had to quickly use Dr. Google and like find out as much as possible, quickly about a thing. What you want is to feel confident. You want to feel like your family member, your partner, or your friend is in good hands, particularly when it’s clear that it’s the end.
 
Jafar: Even when we try to coach surrogates through these decisions, just getting the information across to them can be very challenging. Even the most medically literate surrogates can only take in a fraction of what we say when they’re surrounded by stress:
 
Ali: I called over the physicians who were taking care of her and we set up a meeting and that was like kind of interesting too, just being on the receiving end of a meeting that I’ve, I’ve run those types of meetings a lot. And, um, the interesting things that I remember from those meetings are despite having a medical background, I don’t, I couldn’t really absorb any of the medical information that the physicians were saying to me. I know I wouldn’t, I don’t know if part of that was because I felt like my mom and I had already made the decision or just the stress of the situation.But they were, they were mentioning all these medical terms that I know very well and have used myself, but they were not, I wasn’t absorbing them.
 
Jafar: And so that’s a big plug for one of our favorite communication tips:  always be sure to summarize everything really important at the end of any big talk, and highlight clear next steps and expectations.  Because that may be all they hold on to!
 
Lesson 5: Include surrogates early
 
Tamar: This brings us to a final point we learned from speaking to surrogates: start these conversations early. First, make sure patients are aware of their own prognosis and understand what it means to designate a loved one as their surrogate decision maker. 
 
Jennie: Clinicians need to have conversations with their patients about death. They need to have conversations with their patients about actual outcomes of serious illness. It’s, um, really important for clinicians to, to, to, to actually have a conversation about like, this is what is, this is what is happening to you. Um, this is what end stage liver disease might look like. You know, if you sign your daughter up as a pro as a health proxy, like do know that with end stage liver disease, it is unlikely for you to just die in your sleep. It is more likely that you will have a medicalized death, and that is what this will look like. And I think that I’m not going to say it’s dishonest exactly, but I think it’s a level of shirking of responsibility of not under understanding a whole person. And also our societies, like general aversion to talking about what, you know, like to, to talking about and thinking about what it means to live well and to die well.
 
Tamar: And involve surrogates early in advanced care planning discussions. 
 
Ali: Even if the patient isn’t at a point where the surrogate decision maker needs to be involved or even if they are always involve the family more than you think you need to there’s, there’s no such thing as too much family involvement.
 
VI. Conclusion
 
Margot: We wanted to wrap up with a few parting words. First I wanted to thank Dr Vig, Jennie, Ali, Mariah, and Judy for taking the time to speak with us for this episode. As moving as it was to conduct these interviews, to hear a viewpoint that tends not to be on center stage, it was humbling, too. I have serious conversations with surrogates all the time, and I forget that events I see regularly can be a terrifying, once-in-a-lifetime experience for others. Surrogates walk into a role they may not be familiar with, and have to make emotionally charged decisions based on incomplete information. As clinicians, we struggle too – there are plenty of times where I’ve wondered whether a surrogate’s decision truly reflects the patient’s wishes, plenty of times where the surrogate asks us to continue care that seems futile. These are hard choices, and every surrogate is going to have their own unique set of emotions, and triggers, and coping strategies. But we hope that bringing forward their voices has helped give you insight into what surrogates go through, so that you can walk alongside them in difficult times.
 
Jafar: Thanks for tuning in!  We know these topics can stir up more questions than answers, and we look forward to hearing more about your experiences working with surrogate decision makers. Please continue the conversation with us online at our facebook page, on twitter, or email us directly. Find show notes and contact information for us on our website:  www.coreimpodcast.com. If you enjoyed listening to our show, or if you know someone who did and you feel comfortable representing their values, please give us a review on itunes or whichever podcast app you use; it helps other people find us.  We work really hard on these podcasts so we’d love to hear from you.  Let us know what we are doing right and how we can improve.  
 
And as always opinions expressed in this podcast are our own and do not represent the opinions of any affiliated institutions. Finally, special thanks to all our collaborators on this episode, our wonderful audio editor Julia Skubisz, music from Daksh Bhatia, illustrations from Michael Shen, moral and executive support from Shreya Triveda,  and most importantly thanks to you, our listeners!
 

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