You know when you walk out of a patient’s room and have that sense, “This isn’t going to go well.” The patient is sick and getting sicker, and refuses to let you talk with family or other members of her inner circle. Should you stop at “no?”
Today we talk with Anne Rohlfing, Lynn Flint, and Anne Kelly, authors of a JGIM article on the reasons we shouldn’t stop at “no.” We owe it to the patient to explore the reasons behind the “no,” commonly not wanting to be a burden to their family. In such cases, we owe it to the patient to use persuasion, for example, “I hear that you don’t want to be a burden. And I’m worried that there may come a time when you have trouble making decisions for yourself. We will have to reach out to your daughter then to help with decisions. Imagine her hearing for the first time that you’re sick, that you’re hospitalized, that you’re in the ICU, and that you can’t make your own decisions? That’s a huge amount of news all at once. It would help her to prepare if we could start talking with her now.”
We also talk with Emily Largent, a bioethicist and former ICU nurse, who argues in a Hastings Center Report for an expanded vision of patient consent. Consent is often viewed as “all or nothing” for any specific decision. Emily and colleagues have argued for a wider view of consent that continues to involve patients whose consent may fall in the gray zone – able to express some goals and values, hopes and fears – but not able to think through the complexities of a major decision. I’d hazard that maybe half the patients I care for at the intersection of geriatrics and palliative care fall in the gray zone. Emily’s expanded notion of consent is grounded in the concept of “relational autonomy.” Relational autonomy was was first introduced to bioethics by feminist scholars, who observed that most people do not make decisions as isolated islands. Rather, most of us live and make decisions in relationship to one another. Emily’s notion also borrows from pediatric bioethics, in which parents can look to young children for assent and input on decisions, empowering them to some extent. Invoking this principle, Emily argues for an expanded role for patients in the gray area and their inner circle working together along a spectrum of cooperative decision-making.
My favorite line from Emily’s paper: “Geriatric assent has not been widely adopted in clinical care, but bioethicists should advocate for this, as adoption of partial-involvement strategies can prolong the period in which individuals are (appropriately) engaged in decisions about their health care.”
Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: Alex, I think this may be one of our… I don’t think it’s our max number of guests we’ve had, but it’s getting pretty close.
Alex: Yeah, this is a full house. We’re excited to welcome a full slate of guests today. We’re going to start with Emily Largent, who’s I think they’re all returning to the GeriPal podcast. Emily is a bioethicist in the Department of Medical Ethics and Health Policy at the University of Pennsylvania. Welcome back to the GeriPal podcast, Emily.
Emily: Glad to be here
Alex: And we’re delighted to welcome back Anne Rohlfing, who is a palliative care physician at the VA Palo Alto. Welcome back, Anne.
Anne Rohlfing: Thank you.
Alex: And of course, Lynn Flint, who’s a palliative care physician at the San Francisco VA. Welcome back, Lynn.
Lynn: Thank you.
Alex: And a voice that will be very familiar to our listeners, a dynamic and enthusiastic social worker in palliative care at the San Francisco VA, Anne Kelly.
Anne Kelly: Hi there. Nice to be here.
Eric: So we are going to be talking about the importance of engaging family members and caregivers and into the, I don’t want to say care, I just said care too many times, into the care of our patients. Well, before we get into that topic, I think Lynn Flint has a song request.
Lynn: I do. Alex, can you play Send the Sun, by Nikki Lane?
Eric: Who is Nicki Lane and why did you pick this song?
Lynn: Nicki Lane is a country singer, and I was introduced to her by my 17-year-old daughter. So it makes me feel cool to listen to the same music as the teenagers.
Alex: And you’re going to see her next month?
Lynn: And we’re going to see her next month. Yeah, exactly.
Alex: Great. All right. Here’s a little bit.
Alex: Nice. Fun song. Thank you for introducing me to Nikki Haley.
Eric: I’m going to start off…
Alex: Wait…Nikki Haley is somebody else. [laughter]
Emily: [laughter] That was a good moment. [laughter]
Eric: All right. I am going to start off with a great JGIM paper called Make the Call: Engaging Family as a Critical Intervention done by our two Annes and Lynn Flint who are on the call with us right now. Anne Rohlfing, why did you decide to write a paper about the importance of engaging family members in the work that we do?
Anne Rohlfing: Yeah, so I think this started, I’ll just say the paper, we had to sort of have a de-identified case, but the inspiration was actually a patient that we saw, I was on a team with Lynn and Anne, I think it was my last week of fellowship. And we were at the San Francisco VA and just had a very powerful case and I think a very strong emotional reaction, I think from our whole team at seeing the consequences of not having family involvement, ideally a lot earlier in the patient’s care and how that impacted the family, how that impacted the patient, and wanting to make a case for including family much earlier and to disseminate that to our internists, to the folks who are doing a majority of the communication with families when patients are hospitalized and facing serious illness diagnoses.
Eric: Lynn or Anne?
Lynn: I was just going to say, I think it felt really, first of all, I’ll add to the list of the impact, and this could be the least of it. But there was an impact on us as a team too. It really made the end of life decision making challenging, really challenging. And I think we really, when we looked back to see what happened, we realized there’s this incredibly common situation where somebody will go into the room and say, Hey, is there anyone in your family that you’d like to us to contact? And a lot of times people just say, “Oh no, I’m good,” or “No thanks.” And people often will just move on with the conversation. And we spent a lot of time thinking about that moment and how we might advise people to dwell on that moment and actually see it as more of an opportunity.
Eric: And just for our listeners, can you briefly describe the case?
Lynn: Sure. I can hand it back over to Anne Rohlfing for that one.
Anne Rohlfing: Yeah. In general, the case is a patient who wound up with a new diagnosis of metastatic cancer during the course of the admission and at a certain point had full capacity, was able to make decisions and communicate. And just like Lynn said, the team had asked if there was anyone else to be involved and talk and the patient had deferred and then there wasn’t really any further exploration of why. And then we were involved, palliative care was consulted when the patient was really sick and decompensating in the ICU. And the sort of the ask was, “Oh yeah, you can talk to the family, right? That can all start with you.” And we were like, “What?” And we were all taken aback and then the patient wound up dying just a few days after we were able to contact family and talk things through. So it was just a really moving case.
Anne Kelly: And I might add to what Anne just described in saying, I think part of the way we got to talking, getting to be able to engage the family is because we took some time to really improve our patient’s illness understanding. And as he came to better understand the situation he was in, it really created the sense of self-awareness of, “Of course I want my family involved now that I know this.” And so it created a pathway by helping him understand the gravity of the situation, created a pathway where we could explore that this would be a time that would be appropriate for him to engage with family.
Eric: Well, I feel like just hearing about this case, so on one hand it feels like our healthcare system really only cares about caregivers and family members when decisions need to be made and especially if the patient doesn’t have capacity, or we’re now talking about discharge. That’s where family members get involved. So I was actually somewhat happy and pleased that the very first kind of line that the admitting physician asked was, “Is there anyone you’d like us to call?” Because I don’t feel like that happens a lot and would love to get your thought on that positive aspect of the case.
Anne Rohlfing: I think that is a positive aspect. I feel like I’ve recently seen a fair number of consults, here at the VA, we have the life sustaining treatment option, or sorry, note, where you document code status and there’s a form of who a circuit decision maker is if you were to need one, if the patient has capacity. And several times now, I read the notes and it’s just that someone has copied the contact information for someone into that note, but no one has actually contacted them or confirmed that they would want that person present. So I do think that probably is step one is just asking, which I think is what we proposed. So I think to your point, Eric, yeah, that was a really good thing that someone did ask. And then we would love folks to push past that initial no, if they do get a no in that response.
Alex: I wonder if we could just list out the reasons why it’s important to involve family, even when the patient has decision making capacity early. Why is that important? I know I see Anne Kelly nodding her head.
Anne Kelly: Boy, if we’re just listing, I think things that come to my mind range from, I think many of us can identify that if we’re going through a significant change in our health, thinking about the places where we garner support is often through our inner circle, the people closest to us, our friends or family, if there might be important decisions to be made along the way, having their perspectives and viewpoints could be advantageous. And as we all know, for many people there comes a time where they are no longer able to make their own medical decisions. And if we can have that inner circle be a part of the process along the way, it can also be preparatory work for them if they’re ever put in that hard place of having to think through where do we go from here? And I know Emily has done a lot of work thinking about exactly that.
Emily: I think what you’re saying resonates so much with what we talk about in our paper, is the caring for and the caring about. When you think about family members, they’re emotionally invested in the patient, but they also often are so necessary in thinking about discharge planning. Like Eric mentioned, they are going to be there and it helps. But they’re also really important sounding boards for decision making because they have their own interests, but they really often are guardians of the patient’s interests as well. So I see a lot to admire in the approach that you propose in really trying to bring folks in as early as possible.
Eric: Well, maybe before we go into the approach, because I think this brings up a really interesting issue is how we think in bioethics about how decisions should be made. And historically in the past, thinking about capacity as an all or none phenomenon. And I wish I could say actually in the past because just this week I’ve been seeing emails around people putting in notes into the EHRs about when somebody no longer has capacity, documenting that in a note that now the patient doesn’t have capacity to make decision making anymore. So that all or none. They had it, the note then documents that they don’t have it. First of all, I just love your thoughts on that, Emily, as a little bit of a tangent because it kind of leads into this question of is it really all or none?
Emily: Yeah, I think that was one of the real motivating factors of our paper is that I feel like in bioethics, often it is, it’s treated as a binary, somebody does or doesn’t have capacity. And one quibble with that of course is that we think the definition of capacity is that it’s task and context specific. So because somebody doesn’t have the ability to make a decision about one aspect of their care doesn’t mean that they can’t make a decision about another aspect of their care. But if we set that aside, I still think the binary of capacity incapacity, while I understand the appeal of drawing a bright line and trying to sort people that way, the reality is that a lot of the patients I spend time thinking about are in kind of a gray area in the middle. They have marginal capacity and it’s important to think about what we do for them because they’re vulnerable and we want to offer some protections, but they can still exercise autonomy to some meaningful extent. And so it’s really important to think about that.
Eric: [inaudible 00:12:41] report, deciding with others independent decision making. You kind of go a little bit into this about what it should look like and thinking about this gray zone or the spectrum of how we think about decision making. Can you just briefly describe how you think about how we should be engaging family members in decision making?
Emily: Yeah, I think there are sort of two binaries that we push back on. One is this idea that somebody does or doesn’t have capacity, and the other one is that people make decisions alone or a surrogate makes the decisions. And so those are often thought to really closely couple, I have capacity, I make my own decisions. I don’t have capacity a surrogate decides for me. But once we realize that almost everybody makes decisions in the context of relationships. And so there’s always some spectrum I think, of friend or family involvement. And once we realize that people have differing degrees of capacity, we have to sort of think now about what this expanded area is. It’s not so simple to have these binaries anymore. And so we really try to lay out a spectrum of ways you can decide or a patient can engage in decisions.
So some of those are very self-directed, I decide alone. But some are more collaborative. I talk to my friends or my family members to gauge what they think I maybe should do here. It sounds like that was part of the case that you all were interested in. The family members are able to come and help talk through values and other sorts of things. Then we move toward what we think of as supported decision making, so somebody who’s really there to help. If somebody has some cognitive impairments, they can be advisors and help with scaffolding and addressing cognitive deficits perhaps to help with decision making.
Then we really push toward this idea of partial involvement strategies. So for people who spend time in pediatrics, I think this is really second nature to think about parental permission and having a surrogate decision maker. I think that’s an idea that adult medicine should really draw on more because it’s often very meaningful to involve people. Because even if someone doesn’t have capacity, they still may be able to express important values and interests and should be involved in conversations rather than being cutout. And then finally we get to surrogate decision making is sort of the extreme. But even that I would argue is a form of interdependent decision making because hopefully the surrogate is coming in with a sense of who the person is, they’re deciding for what their values and their interests are, and they’re really able to embody that as they approach their decision making. So it’s that push toward thinking that there are more ways to make decisions than just having either the patient make it or a surrogate make it.
Eric: Yeah. And just for my own clarification, because this is the first time I’ve heard of collaborative decision making. I’ve heard of supportive decision making a lot. What’s the main difference between the two? It seems like both are involving the family member, both are including the patient. How would you separate those two?
Emily: Yeah. Part of the reason we talk about this as a spectrum is I think that there are sort of blurry areas, and I don’t know that there’s a super neat distinction. I tend to think of collaborative decision making is a patient who we would all agree has capacity. And so the family is there in much more of an advisory role rather than providing say, cognitive scaffolding that they might provide in supported decision making. The supporter might offer note-taking or they might come and help with interpreting information or they might help in doing some comparative reasoning exercises. But we think about the collaborative decision making processes, like what I might do with my spouse when I’m trying to decide what I might do because they know me, maybe they’ve experienced something analogous and I just want their input as I make my decision.
Eric: Yeah. And it sounds like going back to the JGIM case, so at the start when the physician asked, “Is there anybody that you’d like us to call?” and the answer is no, that probably was more just about do you need anybody to support you kind of emotionally or during this hospital stay, just give information to. When I hear Emily talk about this, I also hear the talk about, the question may be bigger than that. As we go forward with your care here, are there people that you want to support you as we think through all these questions and the care that you’re getting? Anne Kelly, how do you think about that?
Anne Kelly: Yeah, I agree with you. I think it’s really around how do we create a care plan that’s inclusive of all the right people as we navigate this. And I know we’re talking a lot about medical decision making. But I guess I would add it’s even bigger than just that. I think family and other forms of people who are in someone’s inner circle, maybe thinking more broadly around not only medical decision making, but boy, you’re going to be in the hospital for a long time. How do we make sure bills are paid? Or, “Oh boy, you’re really sick and people are thinking that you may not survive this hospital stay.” Who else needs to know? Who other people are should be involved in this planning process right now? Are there anticipatory practical planning means that we should be thinking about together or other wishes for the future that the family team is really more prepared and adequate to work on with someone than we as the healthcare team are?
And so really thinking about all the ways in which someone’s whole self is affected by serious illness and including the right members of each piece of their life to be part of the team.
Anne Rohlfing: I just want to piggyback. [inaudible 00:18:18] but Anne said it, which is, I think so often I feel like in the hospital we just enter this black box where the real world doesn’t exist, and it’s like you can just make these decisions without the context of a patient’s lived experience and their relationships. And that’s why I love your paper about thinking about, yeah, no one’s ever really making a truly independent decision. That’s not how humans work. That’s not how it works.
And I think if we can have family involved in these conversations along the whole process, there’s just so much importance to that in a patient’s care. And it’s not just about medical decision making, to Anne’s point. I think with our case, what was really impactful was there a lot of financial aspects that basically couldn’t be sorted out in time. And things that we just don’t think about and we don’t talk about in the hospital, right? You’re like, “Oh, that’s not my place. I’m the doctor. I’m not going to talk about finances. You can figure that out.” But that matters. That matters so much to our patients. And if we’re not helping those conversations happen, then I think we’re really not doing them a good service.
Eric: But the physician did ask and the patient said, “No.” Why aren’t you allowing an autonomous medical decision? I do not want my family involved. Why are you pushing this?
Lynn: Well, I think we’d argue that it’s important for all the reasons we’ve just said. We think it’s important to really emphasize that we want to honor how somebody’s making decisions and that they’re in a stressful situation. And I think as Anne Kelly pointed out earlier, one of the hard things is in order to emphasize that we think it’s important that if they have someone in their life that they be there, we have to break a little bit of bad news. We sort of have to say, “This is a serious situation.” And in some ways I think that that can be a barrier to getting family members or friends or significant others in on this.
Anne Kelly: I would add that we are not proposing that when someone says no, we say, well, we’re going to do it anyway. We really see family engagement as a clinical intervention. This is not just a kindness to make a phone call. This is a clinical intervention. And if someone says, “No, thank you,” just like we would with any other clinical intervention that we think could be advantageous, we don’t say, “Okay.” We say, “Huh, tell me more. Why not? What is it that you worry about?” And explore further around why this intervention is being declined. And from there, be able to work together to see if in fact it’s the right thing not to call someone’s family member or friend or alternatively, provide more context or information that might lead them to make a different decision based on their own values.
Eric: Yeah, I love that too.
Emily: Looks like informed decision making around family involvement. And when you reframe the family involvement as a medical decision or a medical intervention, then the informed consent or informed refusal makes a lot of sense as a framing for that.
Eric: Yeah. I love the idea of both the context. The context matters, right? Why is it important? What are you worried about? Just like we would do with any other medical decision, describing the medical issues before a decision has to be made. If you asked me do I want a TAVR, I’d say “No, because I think my heart is fine.” But if you told me that I got severe AS, maybe I’d make different decisions.
Alex: Now, are there reasons… Oh, sorry, were you done?
Anne Kelly: I was just going to add, and to some extent the idea, we have escorted many people through different stages of illness. And so for many of our patients, they’re entering uncharted territory. This is not a process that they’re familiar with. This is not a process where they can see into the future around what complications or challenges may arise, but this is the world that we live in and we can anticipate that. And so it’s sort of on us to be able to help bring people into the fold using our knowledge to think through how might this intervention be applicable for them as things go down, as things progress down the road.
Alex: What are some reasons where you might say, “Oh, well those are really good reasons to not reach out to your family members.” Thank you for explaining to us. Any thoughts about that, Anne Rohlfing?
Anne Rohlfing: I think there’s certainly complicated relationships for folks out there if there’s issues, either estrangement, there’s someone listed in the chart, but they’re actually really not a part of my life anymore. And that’s very clear. And I don’t want them involved at all. If there’s any concerns for abuse at one extreme. I think there are certainly reasons that I think are very appropriate. And I think it’s really just about understanding what the context of that relationship is and then what the context of the ask is and why we think we need family to be involved.
Anne Kelly: And for some people it may be as simple as I’m not ready yet. And being able to talk through that and at what point might we be in a different place where it would be time if it’s not now, really thinking about, if not now, when.
Eric: And Anne Kelly, I’ve heard you use the phrase who’s in your inner circle. Why do you like that phrase?
Anne Kelly: I personally like that phrase because it kind of feels without assumption. It doesn’t assume that someone’s inner circle is a member of someone that they would identify as family or friend. It might be a hired caregiver, it might be a social worker in the community or other person who may not identify with that word friend or family. In my opinion, and it kind of allows people to share with us who are the important people, without us passing judgment around, like who qualifies to be important people.
Anne Rohlfing: I’ll just say I think Emily, in your paper you used the phrase trusted persons. I think we struggled with that.
Emily: Yeah, we do.
Anne Rohlfing: Yeah. As to what phrase to use, because it’s knowing that family is not the right term for everything. So I really like that phrase, Emily, just to say.
Emily: Well, I like the inner circle, so maybe we can have some cross-learning here and you might see it show up.
Eric: And Emily, when you also think about collaborative decision making… Sorry, my VA computer’s going off. Is this the same kind of way that you would in introduce collaborative decision making when talking with patients?
Emily: Yeah. I think it would be really a lovely opportunity to just say that we see a difficult course ahead, there will be a lot of important decisions to make, and it can help to have somebody who knows you, who knows your values, who understands what your life looks like outside of the hospital, who can help you make decisions that are the right ones for you.
Eric: All right, Anne Rohlfing. I’d like to go back to the JGIM paper and the flow diagram on how to engage seriously ill patients and their families in communication. So the very first step is ask, which includes thinking about who’s in the inner circle and asking would it be okay to share updates with them. If they say yes, it’s easy, you engage family. What if they say no, like in this case? In that flow diagram, what’s next?
Anne Rohlfing: Yeah. I’ll just say the other part of the ask I think is also normalizing it too, and saying that all of my patients who are in the hospital who have serious illness, this is something that I ask all of them. So making it, this is very commonplace. This is what we do, we want to have others involved. And then I think if you get the no, then the next step that we have is really what Anne Kelly was describing earlier, is exploring and understanding more, like why not, understanding how they like to receive medical information, are there things they’re scared of, are there things they’re worried about in terms of involving others or what their understanding is of their current situation? And really just being curious, I think, as to why they said no to begin with.
Alex: Can I give you an example? One of the common reasons that we hear, and maybe it’s not stated explicitly, but we get the idea, that people say, “No, don’t involve my family,” is they don’t want to burden them. They don’t want to burden them with their father or their uncle has serious, serious illness and is really sick and is in the hospital. They don’t want to burden them because they have so much going on. They have their own kids they’re taking care of, they’re going through a divorce, they have a lot going on. “I don’t want to burden them.” How do you practically respond to that burden reasoning? What words do you use or what questions do you ask?
Anne Rohlfing: Yeah, I think happy, Lynn and Anne, if you want to jump in too anytime. But I think that is the common situation and that what was going on with the patient in this case as well too. And I think often, then it’s trying to understand at what point of them being sick, of the patient being sick, at what point would they want others to know as well too. Knowing that everyone has a lot of other things going on, we hear you, you don’t want to be a burden. Do you think there’s a point where those trusted ones would be worried and would want to be involved too? And then trying to get a sense of that if they have a good prognostic understanding of what’s going on with them. Because I think in our case it was clear, “Oh no, if I were dying, I would want my trusted ones to know and I just didn’t realize that I am not sick, that I’m at that point.” And so that’s an opportunity to obviously then deliver some bad news, but hopefully connect folks.
Alex: Yeah, I like that phrasing. You said some things like I worry that there may come a time in this illness when you can’t make decisions. And I worry that if we call your daughter at that time and she is hearing all of this news at once, that you have a serious illness, that you’re in the intensive care unit, that you can’t make decisions, that that’s going to be a huge burden on her at that time. And it may be better if we can talk with her now and you could talk with her now, while you’re still able to talk with her, about how things are going, what you’re hoping for, what you’re afraid of, and that we can ease her into that role in case we need to turn to her because you can’t make decisions for yourself. Any thoughts about that, Lynn or Anne?
Lynn: Yeah, that is also a great approach. I think it’s really around also just kind of what would they make of this situation if they could know about it or who are the people that you would want to know. It’s calling an outpatient situation that I had not too long ago recently where somebody got a really devastating diagnosis and this person was relatively geographically, socially isolated here. They had family members, very trusted family members out of state. They had some health issues, they didn’t want to burden them.
And we talked it through, had to emphasize this is a pretty serious situation and things could change quickly just as you’re saying Alex, and would you like some help talking about it? And in this wonderful video era, we were able to all get together on a video conference and we were able to support that person to share their diagnosis with these family members who frankly were initially like, “Oh my gosh, why are you calling us into this meeting? This is burdensome for us right now.” But when they actually heard the news and were able to talk about it, they were so grateful. And things did indeed change for that patient really quickly after that.
Anne Kelly: I think some folks we care for in the hospital also really value that, in the inpatient setting, the inpatient care team can actually also serve as a support to those family members or friends, whether they’re visiting in person or keeping in touch by phone. And to know that we are a source of support for their trusted people is also very reassuring. And so in the inpatient setting, we can kind of also offer that reassurance that we can be here to help answer their questions or help them think through how best to proceed if they find that there’s more on their plate over time. And that offers a sense of calm.
Alex: This is so critical.
Eric: All right. Anne Kelly, what about, I’m going to respond, “Oh, don’t worry, you’re not a burden to your family member. That won’t be an issue.”
Anne Kelly: I would say, “How does it feel when you’re worried about something and somebody else tells you don’t worry about it?” It doesn’t usually-
Eric: Doesn’t go over well.
Anne Kelly: It doesn’t usually lick the wound. The truth is, if someone is worried about something, that worry is going to be sitting on their mind or their heart, whether we tell them to not worry about it. And in fact, if we say, don’t worry about it, we miss an opportunity to really hold onto some important information with them and sort of sit with them in their worry. And the truth is, there might be truth in that. There might be a degree of stress or burden that their inner circle just can’t imagine taking on. And that doesn’t mean that they don’t love them or wish that they could, but it might be very much based in the reality of how difficult things are right now. And if we kind of minimize that or shoo that away, we’re not really helping them.
Alex: That’s a great point. Yeah, this is so critical. This happens so often/ we get consults from the intensive care unit, patient’s really sick, and you get this you know right away, this is not going to go well. And then you ask the ICU team, “Have you reached out to the family? Well, they didn’t want us to, so we didn’t.” And then they’ve been there a week. Well, that’s not enough. We can’t just stop there.
That’s what your paper’s about, right? We owe it to the patients and to their caregivers. This is an expanded thinking about who are we beholden to? Of course, we’re beholden to the patients. But we should also care about the caregivers who may be worrying and not have that information and want to be involved. And so it’s important we explore, we understand, we provide aligning statements with patients and we push back and use persuasion, which is ethically permissible in these sort of cases. I want to move on back to Emily about some bioethics stuff, but I see Eric’s got a question.
Eric: Maybe. No, it just reminds me again, of our nudging podcast, using words like most patients who come to the hospital have a family member who we can talk to. Who would be yours? So it’s a default nudge right there and it’s a norm nudge, everybody, most people. It’s very hard to then choose not to do that.
And I’m also just wondering, going back to Emily too, thinking about this issue is it seems clear if they have capacity to make a decision or if they don’t, around involving family members, if they say no. What if you’re dealing with that marginal capacity patient? You want to use supportive decision making, or was it permission plus… Or no wait, permission plus?
Emily: Yeah, permission-
Eric: I remember those words.
Emily: An assent or dissent.
Eric: Yeah. What if they say no, but you’re like, “I’m not sure if this person has capacity”?
Emily: Yeah. I think that part of my hope is that if we can normalize, and I love that that’s come up already, normalize saying that it’s good to have family members involved even very early on when you still have capacity, that we destigmatize the idea that you might need somebody else to be at the bedside helping and that those people can step in. I think that’s beneficial both for the patient who might be able to make decisions for themselves longer, but also for a caregiver who might now be facing needing to make decisions. So they kind of have some practice working together and understanding the situation. So I think ultimately, if somebody has marginal capacity and isn’t willing to bring somebody else in, you might have to move to surrogate decision making. But I think that’ll be very context dependent.
Can I go back too, a little bit? And I want to say at the start, Lynn mentioned one of the motivations for the paper was this idea that it’s helpful for the staff and the clinicians as well to have some of these conversations. I was an ICU nurse about a million years ago, and we definitely had patients where there was no family at the bedside and you could see the writing on the wall. And as a nurse, there can be so much moral distress and kind of seeing somebody where there’s nobody speaking for them. And so I wish this paper and these practices had been part of my own experience in the ICU because it’s really hard to take care of patients when you feel like families should be involved and the opportunities are slipping away.
Alex: If I could drill down a little bit in the bioethics here, Emily, this concept of relational autonomy. So autonomy, long held principle, self-rule I think from the Greek, self-rule. And then I think feminist bioethics sort of introduced this notion of relational autonomy, like as you said, we don’t exist as islands unto ourselves. We exist in relationship with each other. And that’s sort of the underpinning of this.
Some people may feel like your approach is a threat to autonomy in that it’s eroding people’s autonomy. However, I love, and I’m just going to quote from your paper here, this framing as an extension, this is enhancing our autonomy, particularly in geriatrics. And this is quoting, “Geriatric assent has not been widely adopted in clinical care, but bioethicists should advocate for this as adoption of partial involvement strategies can prolong the period in which individuals are appropriately engaged in decisions about their healthcare. And I wonder if you want to comment on any of that relational autonomy, the idea of expanding this being a more expanded version of autonomy rather than limited.
Emily: We’re talking about this idea of capacity. At the beginning when it’s treated like a binary, there’s really an appeal in drawing a bright line. But we are setting a threshold and there are ethical errors if we set it too high. We take somebody who probably should be able to decide for themselves and we take away that decision making authority or we set it too low and somebody who’s vulnerable is making decisions when perhaps we think that they deserve more protections. And so part of the hope of acknowledging the fact of the muddy middle is that because we have these problems of under and overprotection, we can do more fine-tuned calibrations of how we approach consent. And so by recognizing that people are embedded in social relationships, we can actually prolong the time in which they can make decisions or be involved in decisions by seeing that there’s a place for them and a place for somebody else to help them in their decision making.
So yeah, I think that this should be hopefully autonomy enhancing because we will allow people to be involved longer instead of just drawing a bright line and saying, “You know what? Not anymore.”
Lynn: I was going to say, I think that makes so much sense and so true to real life because when you think about a person in the hospital as an individual in an unfamiliar place completely on their own, is asking them to make a decision in that context of an incredibly stressful context, is that actually real autonomy or is it, as you say, enhancing their autonomy by trying to bring in more people from their life, which is probably naturally how decisions are made when someone’s not inside the hospital, especially. I really like that idea. It’s actually making it much more true to human behavior.
Emily: And I think there’s evidence too, that people make better decisions when other people are involved. I mean, just getting more viewpoints, having more insights, different perspectives. Somebody thinks to ask a question that maybe the patient didn’t ask or they can recall an experience that’s analogous and help with the problem solving. So I think that this, again, is that idea of autonomy enhancing, that you’re actually reaching better decisions by bringing other people in. It’s not that you are somehow lesser for it. Hopefully, we’re all better off for it.
Alex: That gray area is hard though. Sometimes it’s hard and sometimes it’s hard to explain to family members. Like when they look at the matriarch of the family who’s always been the matriarch in making decisions and she’s pretty far on the lacking capacity end of the spectrum. And yet, they’re still turning to her and she is expressing some preferences, but clearly can’t comprehend the complexity of the situation too. This is where it’s like-
Eric: Or the alternative, Alex, where you have somebody who can still participate in some ways and the family member asks, “Can we talk about this outside this room? Can we not tell them?” Because I see that honestly probably more frequently than the other, is this trying to protect the patient from the family member, which is kind of like what we talked about, the patient trying to protect their family members. And Emily, I’m just wondering how you think about that, especially as we think about permission plus partial involvement or supported decision making?
Emily: Yeah. Again, I think I would just turn to the evidence that we know that when people have say a diagnosis of dementia and they’re left out, you can ask them. And even if they don’t have capacity, they say how hurtful it is to feel like people are now talking about them instead of talking with them and that they still do have interests that they would like to communicate. I think we have to think that once we get to sort of partial involvement strategies, people don’t really have capacity. They just have some of the underlying abilities that we think of as necessary for capacity. So they might still be able to understand a little bit, they might still be able to express some values that we think would reflect appreciation. But maybe they have trouble reasoning or these sorts of things. But at least saying what we need to hear what’s being said is important.
I mean, the other thing that can happen in the assent space is in the pediatric context, we ask, is it reasonable to involve the patient? I have a young daughter. I don’t get her assent around a flu shot. She’s getting a flu shot because it’s not reasonable to give her that choice. And similarly, there might be a time in the care where it’s not reasonable to ask for assent because of the nature of the intervention. But I tend to think that we should err on the side of involving people in their own care and they can delegate. I mean, that’s another option. You can ask them, “Would you like your daughter to make these decisions for you? We can not include you or we can include you.” And getting permission around that can be important because the level of capacity needed to delegate to somebody is actually much lower than the level of capacity that we would want for somebody to make their own care decisions.
Eric: Well, I think we are getting close to the end of the hour. Maybe before we end for the JGIM-
Alex: Before you do that, Anne Kelly wanted to jump in?
Anne Kelly: Oh, thanks. I was just going to say, as I hear our discussion, thinking about how complex this is and really just putting in a plug to say, use your team, use your team, use your team, just to say, whenever we’re going through these processes and things are feeling a little bit nebulous or murky, or if despite your best efforts your patient says, “No, thank you, please don’t call my folks,” really think about what are the other members of the care team that could be pulled in to sort of provide that whole person perspective and think through how to optimize this person’s care plan.
Eric: Well, I thought you were going to say when things get really complicated, use your flow chart that you made for the JGIM paper, because it kind of was-
Anne Kelly: Well, that would be the inclusion of our flow chart.
Anne Rohlfing: That’s step three. I think that was perfect.
Emily: That’s in there. Yeah.
Anne Rohlfing: It was perfectly done. Yeah.
Eric: So all you have to do is use the flow chart. Well, let me ask the JGIM team. Starting with Lynn Flint. After writing this paper, after doing this case, are you doing anything different than before this case or this paper?
Lynn: Yeah. It reinforces that if somebody says, “No thanks,” when I ask about family members, I am going to use that as an opportunity to say, “Can you tell me more about that?” Something as simple as that. Because I know-
Eric: Anne Kelly’s doing something different because she reminds me all the time and our team, “Have we contacted family members yet?” Anne, do you feel like you’re doing that more after this case in this paper?
Anne Kelly: I feel like I feel permission to be more assertive about it. I think it’s a value that we’ve always held and I’m finding myself, giving myself permission to be a little bit louder.
Eric: Yeah, it’s hard because on a really busy day, and it probably shouldn’t be, but it’s one of those things that kind of falls down on that priority list.
Emily: Anne Rohlfing, what are you doing differently?
Anne Rohlfing: I think also being more sort of about asking, I think when I get consults as well too, asking what does the family know? What’s the conversation that’s been had? Who are the people? And asking that of the primary team. And I think still often quite surprised that it’s been like, “Oh, we haven’t talked to anyone yet,” or, “Oh, we haven’t really. Maybe that’s like your role.” And then helping teams understand our perspective and where we’re coming from and why it’s so important to involve them. Because I think just Emily, to your point earlier, it is so hard, those frontline staff in the ICU. And not to say that our ICU and our primary teams that are taking care of patients, that they’re doing things wrong. I think it’s just there is an opportunity and if we can educate on that opportunity and how to push past that initial no, that’s what we’d love to do more of.
Eric: And Emily, you’re lucky because I never gave the magic wand to anybody else. You get a magic wand. If there’s one thing that you wish people did differently around this issue, what would it be?
Emily: I think it would be to normalize asking all patients sort of like we’ve come to ask everybody who would make decisions for you if you’re not able. It would just be to start normalizing the question, “Who helps you make decisions?”
Eric: That’s wonderful. Well, before we end, Alex is geared up to play.
Alex: Yeah, I’m ready to play, I think presidential candidate Nikki Haley wrote this.
Eric: We’re listening to Nikki Haley.
Alex: No? Nikki Lane, okay.
Eric: Thank you. Emily Lynn, Anne squared, thank you very much for joining us on this podcast.
Anne Kelly: Thank you.
Lynn: Thanks for having us.
Anne Rohlfing: Thanks so much.
Eric: And to all of our listeners, thanks for joining us.