"You have to be willing to talk about death." - Advance Care Planning (Geriatric Series Part I)

In our first episode of the Geriatric series, Dr. Xu and Drs. Ouellets discuss how to have difficult topics with patients involving death and loss of function. Darius facilitates the conversation with a beautiful couple facing these existential questions.

=== Outline ===

Chapter 1: Introduction to Advance Care Planning

Chapter 2: Discussing Difficult Topics

Chapter 3: Who’s in the room? Stakeholders

Chapter 4: Key Elemaents of an Advance Care Plan

=== Learning Points ===

1. We can define advance care planning in 1 of 2 ways: as a form of legal document or contract, or as an ongoing conversation about a patient’s values that will be revisited over the course of a patient’s lifetime. 
2. Another way of approaching the topic of ACP is in framing it as building a team who will be able to best support the patient through a difficult time: this could include family members, home health aides, financial planners, and so on. The most important member of this team to identify is the healthcare proxy: this person is designated to assist in making decisions should the patient be unable to.
3. Discussing ACP is applicable in any care setting: on the floors, in the ICU, and in the clinic. In the clinic, we have the benefit of time and a longitudinal relationship to keep on revising this topic--since a patient’s goals and priorities may shift over time, and the interventions they may desire will also shift accordingly.

=== Our Expert(s) ===

Dr. Gregory Ouellet graduated from Brown University in Providence, RI with a Bachelor of Science in biology and then attended medical school at the University of Rochester. He completed his clinical training in Internal Medicine and Geriatrics at Yale. He concomitantly completed a postdoctoral fellowship in Geriatric Epidemiology and Aging-Related Research and a Master in Health Science degree in 2018. Dr. Ouellet subsequently joined the full time faculty in the Section of Geriatrics. 

Dr. Jennifer Ouellet is a geriatrician who specializes in the care of older adults with multiple chronic illnesses.

=== References ===

1. Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010 Aug 17;153(4):256-61. doi: 10.7326/0003-4819-153-4-201008170-00008. PMID: 20713793; PMCID: PMC2935810.
2. Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, Matlock DD, Rietjens JAC, Korfage IJ, Ritchie CS, Kutner JS, Teno JM, Thomas J, McMahan RD, Heyland DK. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. J Pain Symptom Manage. 2017 May;53(5):821-832.e1. doi: 10.1016/j.jpainsymman.2016.12.331. Epub 2017 Jan 3. PMID: 28062339; PMCID: PMC5728651.
3. Fried TR, Bradley EH. What matters to seriously ill older persons making end-of-life treatment decisions?: A qualitative study. J Palliat Med. 2003 Apr;6(2):237-44. doi: 10.1089/109662103764978489. PMID: 12854940.

=== About Us ===

The Primary Care Pearls (PCP) Podcast is created in collaboration with faculty, residents, and students from the Department of Internal Medicine at the Yale School of Medicine. The project aims to create accessible and informative podcasts about core primary care topics centered around real patient stories. 

Hosts: Helen Cai

Producers: Helen Cai, Josh Onyango

Logo and Name: Eva Zimmerman

Theme music and Editing: Helen Cai, Josh Onyango

Other background music: Noir Et Blanc Vie, Asher Fulero, Astron, The Tides

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Transcript

ACP Episode: Starting the Conversation and Making a Plan
(Geriatrics I)

Introduction 

Host: Hi. Welcome to Primary Care Pearls: a podcast made by learners for learners. 

Barbara and Richard: It has to do with how we think about aging and how we cope with aging. And when we think about aging, death is right there in the back of our minds.

Host: Have you ever considered what kind of medical care you would want if you couldn't speak for yourself? That's where Advance Care Planning comes in. It's a crucial but often overlooked aspect of healthcare that can make a world of difference for your patients, your loved ones, and even for yourself. 

During our episode, we'll be joined by our patients, Barbara and Richard, who happen to be married.

Barbara and Richard: My name is Barbara. I am 83. I'm a biologist, a retired biologist. I taught human sexuality and various life science courses at a high school and university level.

I'm Richard. I'm 80. I have a PhD technically in English literature. I have taught in England at the secondary school level. In this country, secondary through graduate school.

Host: We'll get to learn all about Barbara and Richard over the course of this episode. Specifically, we'll be asking them about their experience with advanced care planning. 

To help us put everything into context, we'll be enlisting the help of two faculty experts. They also happen to be married.

Jen Ouellet: My name is Jen Ouellet. I'm a geriatrician and clinician educator from Rhode Island, initially. Then  trained in Rochester and then here for residency. And my focus has been helping health professionals and health professional trainees learn how to align decision making for older adults with what matters most to them.

Greg Ouellet: And I'm Greg Ouellet. I also grew up in Rhode Island. Jen and I have known each other since college. Trained in Rochester for medical school and then came to Yale for residency and for training in geriatrics. And I am really interested in complex decision making.

Host: During the episode, you'll also hear the voices of our interviewers, Darius Mostaghimi and Dr. Margaret Xu.

Interviewers: My name is Darius Mostaghimi. I'm a third year medical student here at Yale.

Margaret: My name is Margaret Xu. I am a third year resident in the primary care program at Yale.

Host: Dr. Xu was a resident at the time of the recording but is now a board-certified geriatrician.

Host: And finally, I’m Helen Cai - a fourth-year student at the Yale School of Medicine. I'll be hosting the geriatrics series, starting with this episode on advance care planning.

During this discussion we'll learn about what an advance care plan is, and how to have conversations with patients regarding difficult topics, like death and loss of function.

Before we get started, please know that this content is made to be for learning and entertainment purposes only, and should not be used to serve as medical advice. If you or a loved one is suffering from anything discussed in today's episode, please be sure to discuss it with a medical expert. 

Now, on to the show. 

Chapter 1: An introduction to the idea of Advance Care Planning 

Host: Let's kick things off by learning a little bit about who Barbara and Richard are.

Barbara and Richard: We've been together 12 years. Her late husband died shortly before we met, and I've been divorced.

 In retirement, we do a lot of volunteering as much as we can, largely of a teaching nature. So before the Peabody Museum closed, we were both docents there and hope to return to that position. And we're doing some local teaching. And Richard is teaching. No, I read. I read by Zoom to kids in Tanzania. Kids at the grade school level.

Interviewers: That's excellent. Sounds like you are all pursuing very meaningful passions.

 Tell us about your experience with advanced care planning.

Barbara and Richard: Mine goes back to when I first became a parent and started thinking, what's gonna happen to me if I'm incapacitated? If I die, what's gonna happen to my children? And I think that's probably a beginning for many people.

I think the next thing was I've had the same financial planner for some decades now, and we're close friends as well as having a business relationship. She asked us what we had done in the way of thinking about end of life care, if we had done a living will, for instance. And I said, I didn't even know what a living will was, at the time.

And so she encouraged us. I thought I was too young to even deal with these issues, which was erroneous. Thereafter, every time we got together, every few months, she'd say what have you done about the living will and power of attorney and healthcare proctor-- pro--  Healthcare proxy? Thank you.

I can't think of a physician who has raised the question with me until recently. And that's, so looking back in retrospect, I think that's rather shocking.

When I did get a copy of a living will, I made sure, based on my attorney's suggestions, that I give a copy to all of my physicians and that initiated a discussion with my primary care physician. Not much of a discussion. He said I'll keep this in mind and I'll remember it. Thank you very much. And that was it.

Host: Let's take a moment to make a few observations. From Barbara's experience, it seems like the process of advance care planning was initially driven by her financial planner, and perhaps first motivated by the legal implications of end of life care. That legal context might be the initial understanding that patients have of advance care planning. Let's have Dr. Jen Ouellet help tie this into the medical context.

Margaret: To start off, can you tell us what is advanced care planning? If you were introducing this to your patients?

Jen Ouellet: I would start by thinking about advanced care planning as a journey and a process by which you are helping patients to identify what their values and goals and health outcomes that they most desire are, along with discovering who the important people are that should be involved in those discussions as a patient's health and life trajectory may change over time.

It's an ongoing conversation that happens between patients, their loved ones, their health professionals in a longitudinal way that responds to changes in health and life. But the main point I think, is that we allow patients a space for us to hear what matters most to them and document that, both in terms of what they want to achieve out of their healthcare, and then the people that would help them make decisions.

Margaret: I love how you describe it as a journey. Cause I feel like, at least in training. We mainly do inpatient work, like in the hospital. And I feel like it tends to come across as this discrete point in time where you admit somebody, and you ask them, what do you want us to do? Decide now.

Host: Okay. This was very helpful in distinguishing advance care planning--as a form of legal document or piece of paper--from advance care planning as a form of patient care--in which there's an ongoing and dynamic conversation about what’s important to your patients in their healthcare, and which one of their loved ones can help us understand those priorities. 

It sounds like Barbara has had some personal experience with this as someone who was pulled into that role of decision-maker for a loved one.

Barbara and Richard: One of my most profound experiences concerning the end of life was my late husband who died. What? In his late seventies? Yes. In any case, he was still teaching.

He was still teaching full-time at a university level and even had an overload and was loving it, and he suddenly got septicemia of some unknown cause. And out of the blue, his organs shut down. It seemed to be out of the blue. The symptoms reached a point where he couldn't function very well.

And we were in a hotel in Albany at a family reunion. Got him to the emergency room and they said something very discouraging to me. I thought he just had the flu, but he was code blue treated at some point. All the medical staff said to me is he was a very, very sick man.

And I was in total denial and I said, no, maybe I'll have to call the university and get somebody to cover his classes for the next week. That's where I was.

At some point in the next 24 hours with my two close friends, and my son gathered around me in the hospital there. I had to make a decision about whether or not to pull the plug.

So knowing what his wishes were was very helpful, but I have to say that it's one of the most difficult things I ever did, but it was an experience that really shaped me enormously.

Makes me tearful whenever I listen to you about this.

Host: Barbara went through a profound experience, and a very sudden one at that. Coming to such a decision is never easy, but can take a moment to ask ourselves--is there anything we can do to make this a less arduous experience?

Barbara and Richard: I also had the experience, my mother, who died five years ago at 98 had written something at length when she was younger, about how she wanted to be managed when she got old, especially if she lost her ability to think. She did end up with dementia the last couple of years. She was very sharp in her pre-dementia years. Yeah. 

What I found with my mother at the end was I wanted her to die. I never would've imagined that, but it felt like an insult to me to see her in this state when she had been just such a dynamic and energetic and smart woman all her life. And I would like to spare my child and other people who care about me such an experience. Seeing that document from her reinforced to me, I need to do something similar for my child and our children together and grandchildren for that matter. 

Host: One thing that Barbara and Richard had in common through those two very diffèrent experiences was the ability to have those key conversations with their loved ones before the critical health events. In Barbara's case, her close relationship with her late husband allowed her to gain insight on what would be important to him at the end of his life. And in Richard's case, seeing the document written by his mother was...liberating. It allowed him to have reassurance in an otherwise painful and difficult decision.

Codifying these priorities and decisions with some form of document is an important topic. Let’s take a step back to ask Dr. Jen Ouellet to define a few key phrases that can get confused in these discussions. 

Margaret: Can you tell us what a healthcare proxy is?

Jen Ouellet: Healthcare proxy is an interesting term. I think we sometimes also hear synonymous terms of healthcare representative or surrogate decision-maker. Which all mean the same thing, to say this is the person or the people that would make decisions if I'm not able to. So that's the broad strokes, what it means.

Host: And how about living will? What's the difference between that and an advanced directive? We'll toss it over to Dr. Greg Ouellet.

Greg Ouellet: So advanced directives are a written document that document: one, a surrogate decision maker, healthcare agent, et cetera as far as the terms that we just used, as well as can include some information about particular health outcomes that somebody would value or particular interventions.

Doesn't necessarily have to, but can include those things as well. So it can fall into the category of really just naming somebody, but it also can incorporate things like a living will, which would go into really pretty specific disease states and what interventions somebody may or may not want. 

The one important thing to know about a living will is while it’s pretty specific, it's not a binding legal document. So it's something that's there as guidance for the clinicians and for a surrogate decision maker to look at. And that also can include things like a MOLST or POLST. So those are medical orders for a life sustaining treatment, or physician orders, depending on which state you're in. And so those are binding orders related to specific treatments that somebody may or may not want in specific clinical situations. 

So it's pretty broad, advanced directives. It can include a whole variety of those different things. So that's why I think it's helpful as a concept, but it is also really helpful to break apart what exactly is the advanced directive that was done with a particular patient.

Is it something that sort of tells us who the person is that makes the decision, gives us general guidance, or actually gives us like binding orders saying this patient does and doesn't want this.

Margaret: I see. So it sounds like a MOLST or POST form is the most legally binding, whereas an advanced directive or a living will can outline somebody's wishes, but could potentially be change or adjusted by their healthcare proxy or representative in the future.

Greg Ouellet: Yep. 

Chapter 2: Discussing difficult topics 

Host: Now that we've got those definitions out of the way, let's focus on applying that knowledge and think about how we can bring the subject of advance care planning up with patients. Barbara and Richard had a few things to say on how their primary care provider opened up the conversation.

Barbara and Richard: Only recently, Richard and I changed to a gerontologist and she is quite wonderful. She brought up the subject and didn't just pay lip service to it. So we went into great detail about exactly what you want to do. If you can't make decisions for yourself, what kind of decisions do you want made for yourself?

And then I've had discussions with my family about after I die or when I'm dying. I have no problems with it. I don't see it as a taboo and I realize that puts me in a minority. In our culture. I think most of our taboos are not only ridiculous, but they are potentially harmful.

I've had previous doctors try to almost be a cheerleader for me.

Oh, you look so much younger than you are. Oh, you're so energetic. Oh, it's wonderful that you're still traveling. Oh, and on. Rather than listening to me when I said, I'm slowing down. I can't read as many books in a week as I used to be able to read. I can't lead hikes. They wouldn't listen to me.

You have to be willing to talk about death. You have to, and if you're a doctor, you have to figure out how to get your patient comfortable talking about death.

Host: I think that this is such an important point that Richard makes. Often, we worry about whether the patient will feel comfortable with the discussion of their own mortality. We worry that they might feel afraid to consider what will happen at the end of their life. But the truth is, this might be a projection. We, as healthcare practitioners, can also be deeply uncomfortable with this idea. And it's important to acknowledge that. 

Sometimes that discomfort can lead us to be dismissive to what our patients are telling us. Barbara's previous physician was relentlessly optimistic and dismissed Barbara's concerns about her aging. It’s tough, but we need to somehow strike a balance between being hopeful as we work to improve patients’ quality of life, while also being pragmatic and ready to plan ahead. Let's hear an example of what that's like.

Interviewers: So you talked about your gerontologist who has had these deep conversations with you about end of life planning. Tell me about the process of having these conversations. What resulted from them and how that's changed.

Barbara and Richard: I think most importantly it told me that if I have any questions about aging and about being closer to death, I can go to her with great comfort, and that's huge for me. To know that there is someone in a position of authority, not necessarily a friend, not necessarily a partner, but a professional whom I can talk with about this. That was the most important for me.

If I then say I'm a little bit anxious about my health, being able to hold up for seven weeks, I don't want the doctor to say, oh, don't worry about it. I want the doctor to hear me.

If doctors aren't comfortable with this subject, they could find themselves suddenly thrown off course if one of their patients brings up the subject. 

They may nonetheless, no matter how well trained they are, and something may take them aback and they need to acknowledge that.

If nothing else, a doctor can initiate a discussion by saying, I know you're. Whatever. You may not have thought about this, but have you made a living will? It's, to me, it's a regular, that's a fairly innocuous question that a doctor can raise and that presumably if he or she is comfortable, can lead to open dialogue. 

An older doctor can say, just plunge in with, it's funny talking to you. I'm thinking about myself and I'm getting old. And I start thinking about what do I have to do?

To adapt to age and to retirement and to dying for that matter. Do you ever think about these things? That would be one way of introducing it by the doctor as the example, getting an example that the patient can identify with. If it's a younger doctor, it might be someone who talks about a parent or a grandparent and what her or his doctor's experience was with the older person's dealing with end of life issues. Again, as a pro just saying, you, you ever think about these things in a kind of, you don't have to answer, because the person certainly has thought about them.

And if you can make it easy and make it relatable to somebody else, to some other reality. It may be, I'm guessing it's easier for a person to break out of self-censorship and self-protection and thinking about such things. 

Host: This is great. There are a couple of pearls that I'm going to take away from all of this. Firstly, bringing up the topic of ACP doesn't have to be fussy and convoluted. It can be as simple and unassuming as one direct question: "Have you made a living will?" Secondly, some personal anecdotes from the physician might normalize the topic and make it more approachable.

Those were some good tips from Barbara and Richard. What should we do to continue the conversation, once we've asked that first question? 

Barbara and Richard: In the position of a patient who's not comfortable talking about this. Even that question might throw me for a loop. It's not important yet. I don't wanna have to think about it. I don't know what a doctor can do at that point. I think a doctor could say my door is always open and I'd be happy to, when you're ready to talk about this. You have to, as a patient, you have to be your own advocate and say I'm just not ready to talk about this yet. You brought it up. I'll think about it. Can we come back to this sometime?

Host: Even if we bring up the subject, patients may not be ready to discuss it. And that's okay. All we can do is offer the conversation and be ready to welcome the patient back into it once they are ready. 

Let's hear our expert's opinion on how to prepare for that conversation.

Jen Ouellet: I personally think it's important to normalize the topic with our patients early on in building our relationship with them, honestly, as opposed to thinking about a discrete time that it should occur.

Partly because I think patients sometimes take time to think about these topics and to talk about them with the people in their lives. So I tend to start the conversation honestly the first time I meet patients and opening, opening the door to the conversation, acknowledging that this is something that we can talk about over time as well.

And then after documenting a patient's wishes, circling back and confirming and potentially changing things with each change in health or life context.

Greg Ouellet: Advanced care planning is a lot about understanding what people's values are and those values are important in the future, but they're also important today. And so when we're having the conversation about, Hey, I wanna know how to best take care of you today, tomorrow, three years from now, 10 years from now, I want to understand, are you somebody who says, I really value independence, I really value symptom control, or I wanna live as long as possible.

Like having a lay of the land is helpful now, but it's also helpful then, and in my introduction in that way, often doesn't get people's spidey sense that I'm necessarily thinking that something bad is going to happen.

Advanced care planning is not a one-time process. It's something that iteratively is gonna happen over time and involves lots of discussion.

Barbara and Richard: We haven't had just one discussion. We've had many and they were interactive discussions and yes, but what offense, what would you want? Have you thought about whether you would want to live in these conditions?

Would you want to live at home? Would you want to be in a memory unit? So they're very nuanced, these discussions and they're ongoing.

Host: At this point in today’s discussion, we've all hopefully been able to appreciate that advanced care planning can be a long-term project. This is not something that will be open-and-shut in one outpatient visit. 

I think that Dr. Ouellet's method of framing the conversation from the outset is very important--from a physician's point of view, we're asking these questions because we want to understand how to best take care of someone now, 3 years from now, 10 years from now, and so on. And because our priorities change over time, it's something to revisit time and time again.

Chapter 3: Who's in the room? (Stakeholders)

Host: All right, we've focused on the "what" and "when" of advance care planning. Let's move onto another important aspect: "who" the stakeholders of the conversation are.

Margaret: Who do you typically involve in these discussions? If anyone outside of the patients themselves?

Greg Ouellet: I would say that's a complicated, deceptively complicated question. 

Interviewers: Who do you think should be present for the advanced care planning process?

Barbara and Richard: Drawing up the documents. I would think only us.

Other families may have different dynamics, but I am adamant that I wouldn't give any of my relatives such decision making capacities. They might disagree with me, and these are important issues and I wanna make my own decisions about it.

And to some extent I might even say to Richard, look, this is what I wanna do, but you may not agree with me, but this is important to me.

Host: Uh-oh. So far, in asking the same question, we've had Dr. Ouellet dodge the question, Richard giving one answer, and Barbara a very different answer.

As Dr. Ouellet mentioned, this is a complicated topic. Let's hear some more from our patients and experts about how to ask who to include in the room.

Barbara and Richard: I think one of the things I found very useful is that healthcare provider asking me, if you had to, somebody were making these decisions for you, who would you most like to be that person? And you may not have a single answer right now, but it's something that warrants a lot of consideration.

Greg Ouellet: My inclination is to first start with whoever the patient is regularly bringing with them to visits. If they are bringing somebody, say, Hey, I know you bring your wife, your daughter your friend to these visits.

Is this somebody that you'd like to be around while we talk about the things that matter most to you? Is this somebody that you would want to be your decision maker in the future, if that were the case?

It becomes in my mind, more complicated when somebody always comes to these visits alone.

And having some of those initial conversations about who they really would want to bring and say, Hey, sometimes we find that this is valuable to have family members hear what you have to say, what matters most to you. 

And I honestly, I think very similar to what I was saying earlier, that's helpful when we are thinking about the care that they get now. To make sure that we have a whole bunch of people that are all on the same page, right? So if you have somebody who even might not consider themselves a caregiver, but maybe put out the pills for the patient, it's helpful every once in a while for them to be present at visits and know what's actually going on.

And understand, okay, if the patient is saying, there's too many pills and this is too much for me, hearing that in person is really helpful.

Host: I like the way that Dr. Ouellet sets up this part of the conversation, because in this case we've now pivoted from thinking about 1 person handling all the decisions in a worst-case scenario, to thinking about how we might build a team of people who are all on the same page about what's important to the patient at one moment in time.

Barbara and Richard were thinking along those same lines--about how to best build a team for specific areas of their lives that include areas outside of their healthcare as well.

Barbara and Richard: You might want one person who's really good at handling your finances and somebody, for instance, I would pick my sister-in-law because she's a medical librarian at suny, so she is my go-to person with healthcare questions, and I always get wonderful conversations with her from doing that. Doctors don't seem to have as much time as my sister-in-law has to help me out in those areas, but I think who you want to do these things and a reassurance that if you change your mind or if that person dies or falls off the planet or whatever, you have some other thoughts of people you'd want to ask.

Do you want a relative to make these decisions? Do you want your estate attorney to do it? Do you want the person who fills out your income taxes to do it? Do you want your spouse or do you want it to be divided among people? But this is huge. So the points of who do you want to do this and understanding that it's not carved in stone.

Host: That team framework seems to have worked well for Barbara--she's got her sister-in-law lined up for medical questions, an estate attorney rushing the defense, and at the center of it all, herself calling the shots as a quarterback. Let's think a little bit more about a very specific role, though--that of healthcare proxy. Remember, this member of the team might be called on to make decisions about healthcare if the patient isn't able to do so.

Jen Ouellet: Many times patients will say, I want my kids to do it, and then there's three adult children, or, I want my significant other and my kids to do it. I encourage people to really pick one point person. The form from Yale allows two people, usually the form will say this person first.

If they can't be reached or not able, then this person. Really in an effort to reduce confusion and conflict, I think it can be important to select one person as the sort of point person for the family. There are situations where that's not feasible, though, I will say where patients say, I want my kids to make the decision together.

Greg Ouellet: I would say if that's the case, when someone says, I want multiple children to make the decision in this together, I think that's a really  important way of saying to the patient. Okay. If we want them to be able to make this decision together, we should have them all at the table now to hear this all together.

Host: Sometimes, picking a healthcare proxy is half the battle and it’s a long one at that. But the role of healthcare proxy requires some buy-in from the person who is being named, as well. What if that becomes a point of friction?

Barbara and Richard: In many cases you are gonna encounter resistance, particularly if these family members are young and they don't wanna think about you going, losing you.

My mother, when my father started with his dementia, my mother was already in her seventies and not very agile. And she had to take care. She chose to take care of him for I think a good 10 years, even when he started defecating into his pants or into a diaper and she had to clean him up, she made her crazy.

When the demented person keeps seeming to get some pleasure outta life, how do you deal with that? How do you deal with a person who really has no life left. My, my father could watch musicals on CDs and or DVDs and sing along with them.

He was lost in any other area. 

The caretaker, the people who are left to make the decisions. Once that person no longer can do it, oh has to be prepared that it's not a black and white issue. It's tough. And if I ask somebody to be that person for me after I die, I would want that person to understand it.

Host: The role of a healthcare proxy is a difficult one. It's emotionally difficult as is to bear witness to the declining health of a loved one, let alone the added layer of being responsible for making decisions. 

One thing that is underscored in preparing the healthcare proxy for the role is clearly stating what is important to the patient, and what their values are. This pertains to healthcare while the patient is living--but may also include what happens in death. 

For Barbara, this is a tremendously important point that she has thought about and made clear for herself. It's her wish to make this clear to her loved ones as well.

Barbara and Richard: I'd like to go back if I could, and emphasize that one of the biggest aspects of this is what do you do with the body after the person dies?

Because that's where you get the greatest emotional conflicts from the family or from the pastor or the rabbi or the whoever or people vying for your body. If you say you wanna be cremated and that's against the religion of your family, there's gonna be a lot of bickering.

But if you have it legally in Yes, established, if it's part of your documents then that's harder to, I've changed what I wanna do with my body many times. If somebody wants a complete body, they're, I'm sorry, but they're gonna have to dissect a body without a uterus, for instance. So I started thinking maybe my body isn't as useful as it used to be or it's not as good for organ transplant as it used to be.

And what else would I want done? I, as a biologist, I like the idea of recycling my parts as part of nature. And so there are all different, new ways of doing that in an environmentally healthy way. So that's something I'll be changing and keeping my family informed of, but it's an end of life-related discussion that you have with family.

Chapter 4: Key Elements of an Advance Care Plan

Host: We've been hinting at what a patient might need to consider in their advance care plan--what happens with their body after death, if they may want to live in a memory care unit, what to do in the case that they require life-sustaining care, and so on. 

We should also acknowledge that if you're listening to this as a trainee, you’re probably spending most of your time on the wards, and the pacing and the content of these conversations might look a lot different there. Let's hear from Dr. Jen Ouellet about what's important to consider in the hospital setting. 

Jen Ouellet: The urgency with which we need to discuss specific potential interventions is probably different in the hospital setting as opposed to the outpatient setting. So the conversation, I think if done in a way where there's time and the environment is supportive in the hospital, would start largely the same way where you would incorporate getting to know you and your life and what matters to you in your healthcare first. I think that can be helpful in guiding many interventions that we offer patients in the hospital setting.

Pivoting to specific interventions like CPR and intubation. I think that we sometimes ask the question in a way that focuses on the actual process of CPR/intubation as opposed to, I'm not sure if CPR would help achieve your goal of “X”, I worry about prolonging suffering and focusing on the outcomes and the quality of life.

Greg Ouellet: I think that's a really, that's a really valuable point, Jen, about really focusing on what our assessment as a clinician of the potential outcome of a code event could be for the patient. Terry Fried, our section chief, some of her work from about a decade ago, really showed that it really matters a lot to patients what the potential outcome of a potential intervention is. More so than what the intervention is itself. And so what I mean by that is, is like people might be able, might tolerate, say, going through really burdensome intervention if they're told, you know what, you have a very good likelihood that a month from now, everything is gonna be exactly as it was before you came into the hospital, right? 

They might say, yeah, absolutely. Put me in the ICU, do CPR, all of those kinds of things. If the outcome is something that they wanted. And so understanding the big picture, are they someone who says, you know what, I really value independence, or, I really value longevity even if I'm not independent, is really important so that you can say, okay, you know what? If you really value independence, I really worry that if we got to the point where we needed to do CPR, that CPR would not help maintain that goal for you. So that we can put it in that context. 

And I do think we've been less timid about not suggesting CPR, but I think we've probably as a profession like Jen said, focused too much on the actual mechanics of the CPR and not actually giving our clinical intuition as to whether or not we think that it would serve the clinical goals and values of the patient.

Host: Addressing code status is something we do quite often in the hospital. And when the situation is appropriate, it can be helpful to frame it as a question of values, once again. Understand what the patient values in the way they live their life, and provide your assessment as a clinician of whether the interventions we're offering--such as resuscitation and full code status--would be aligned with those goals. 

Let's talk more about what might happen after a code, and how understanding that can also help in the decision-making process.

Barbara and Richard: Our new doctor asked us at what point we want life support turned off, or at what point would we no longer wanna be kept alive? That's a difficult, and we both said more or less the same thing. When we're nonfunctional or our brains aren't functioning anymore, we're brain dead.

Margaret: When I ask somebody about code status when they're first admitted, the most common thing I hear is as long as I'm not a vegetable. and it can be difficult to predict outcomes sometimes. And so my question would be, what kind of clinical reasoning or strategies do you use to try to respond to these inquiries that they have?

Greg Ouellet: That's a really good question, and I think some of it hopefully improves as you're increasingly adept at taking care of more patients. And so you get the clinical sense. But I would say if I was gonna put a name on the things that make me really worried that somebody is not going to do well postcode, it would be folks that, for instance, have a lot of functional impairments before, before a code.

Folks that have preexisting cognitive impairment. In particular, if they've already been diagnosed with dementia, I really worry about having much worse cognitive outcomes afterwards and that resulting in their function being significantly different. So both of those things make me say, okay, this was a person who was able to live at home and now this is going to happen.

I could see this being really hard to get them back to a place where they're able to live independently. The other things that I think are red flags for me are things like the person, everybody in their family says things like they're slowing down, they're losing weight, they're not moving around very much.

Those are some of the things that are in the, what they call the phenotype, a definition of frailty. There are things that are giving us a red flag that this person's ability to maintain resilience against a stressor like a code is probably not very strong. So those are the things that I think jump out to me as red flags.

Jen Ouellet: That was a great summary of the sort of instinctual reasons why we might be worried about somebody's outcomes after a cardiac arrest. And I think that the additional layer of complexity is that patients who have a code end up in an intensive care unit following that event.

It's not just the code in and of itself. It's then the consequences that occur and the medical support that's needed following it, that can result in increased rates of delirium and functional decline as well. 

There are studies that give us broad population-based outcomes. Some patients wanna hear numbers, some don't wanna hear numbers about the likelihood for them to have, some people say the word meaningful recovery or to have a full recovery after a cardiac arrest event. I think it's challenging because culturally, what people know about cardiac arrest events is not necessarily accurate to what we see in the hospital environment. So I think that's somewhat of our tendency to describe the mechanics and what actually happens in a code. 

But I think we can focus on saying, I'm worried that if you were so sick that we were in a position of needing to resuscitate you, that the likelihood of us getting you back to your current cognitive and functional status is low. And I wonder if that were to happen, if we should allow a natural death and make you comfortable. 

Using language that allies with a patient in a way that respects what their values are.

Now, Greg's mention of Terry Fried’s study regarding outcomes that matter to patients. I think that study was 27% of patients that valued longevity above all else. I think there will be cases where patients say, I want you to do everything you can for me.

And that can sometimes be difficult or morally distressing for us. But I think we have to respect autonomy as well. So having that conversation in a way that I think reflects the patient's values makes it a little bit easier for us to distill.

What you document, I think, also matters. So the conversations that we have, around what matters most and who should be involved in the decision making, I think are important. There are cases where patients know what things they would or would not want. For example, things like escalation of care or feeding tubes.

So sometimes that conversation organically turns into an intervention specific conversation, and I think if you can document both the values and goals, and any specific interventions that have come up and have been discussed, it can be really helpful in future care planning. I've had people, for example, that will say, oh, I talked to my primary care five years ago when there was the diagnosis of dementia and we talked about a feeding tube, and they encouraged us to think about it.

And I don't think that's something we would want. So if we had that information, documented from five years ago, that's helpful for today.

Greg Ouellet: One thing about the specific interventions is that what they're particularly useful for is as a starting point to continue to have the discussion. And I say that because pretty much with most chronic illnesses there's this concept that there could be a shifting line in the sand of what somebody is and isn't willing to do based on where they are in that trajectory of illness, right?

So you could imagine that someone who's perfectly healthy saying, I would never want dialysis, and then when they're faced with the choice between dialysis and early death, choosing to then use dialysis. So it's helpful to have that information about what somebody said in the past, but not necessarily to use it as something that's binding, but as a way of saying, Hey, we discussed this in the past and this is what you or your loved ones said.

Then: have things changed here? Is this something that you guys still feel strongly about or have or do we feel differently about this particular intervention?

There was a study done, the Rebecca Sudore study. Basically where they did a Delphi panel, which is where they basically tried to build expert consensus among a bunch of palliative care and geriatric experts thinking about what are like the most critical pieces of advanced care planning and what should best be documented.

And I think what came out on top is making sure that the person has a surrogate decision maker named, and I think the one thing that I would wanna make sure is somewhere front and center for folks is who are the people that should be involved in decision making? Because those are the people that hopefully know this person best and are able to make some informed decisions on their behalf. 

Host: We just covered a lot of information. But here are some things to keep in mind when thinking about ACP in the hospital setting.

One: document everything that is discussed--what specific interventions, who was there, and what the rationale was. This isn't because these decisions are to be set in stone, but rather because they are important pieces of information to start with for future conversations.

Two: The single most important thing to document is who the surrogate decision maker is. If the patient initially opts for a group of people--such as, all of their adult children--encourage them to pick one person.

Three: Other things to consider discussing in the hospital setting might: Code status and CPR; how the outcomes after CPR might be aligned or not aligned with their goals and values; if the patient would like escalation of care to the ICU, where intubation might be necessary; if escalation to a step-down unit and use of pressor support is acceptable. The conversation also is not limited to higher levels of care--for floor interventions, it may also be appropriate to address time-limited trials of IV fluids or placing feeding tubes in the case that the patient is unwilling or unable to eat.

It’s important to have these discussions with all our hospitalized patients, but if we’re short on time, priority should be given to patients with multiple chronic conditions, elderly age, or with a history of cardiac arrest or intubation. 

We're just about to wrap up our episode for today. But let's let Barbara and Richard have the last word on the importance of this topic.

Barbara and Richard: Not just a primary care physician, but surgeons, for instance. Oncologists. Parents of children. There are so many different disciplines. I can't think of an MD who shouldn't be able to have productive, empathetic discussions about this subject. 

I think most of what we've said is important. Let me put it this way. If I were watching this as an old person or if I were a doctor, I'd want to hear almost everything that we've said.

Wrap-Up

Host: And that might just be your cue to listen to this episode again, or share it with your colleagues who aren’t primary care. [transition music]

Thinking about when our health turns for the worse, and ultimately about death, can be a frightening endeavor. But, it’s one of the few certainties in our lives--all of our lives, not just our patients’. Barbara and Richard are fantastically reflective and have truly embraced this ongoing process of defining what’s valuable to them, and who they can trust to hold those values true. And I’m certain that the lives they lead will be all the more fulfilling, vibrant, and rewarding for it. 

Here are some notes I took away from this episode, and I hope you did too.

1. Advance care planning is a broad concept that covers both legally binding and more informal agreements. We've defined it as an ongoing conversation that allows patients to identify what matters most in their lives, and allows physicians to provide care that is most in line with those values.

2. Framing the conversation around end of life and mortality can be frightening or off-putting to some patients--and even to medical providers. Another strategy in introducing advance care planning is a way of building a team for the patient, and making sure everyone is on the same page. 

3. When working in the hospital setting, these conversations can be highly abbreviated depending on the acuity of the situation. But, we will still encourage patients to at least name a surrogate decision-maker and also discuss with patients the interventions that might be offered and how those align with their goals.

And that concludes our episode for today. Be sure to tune in for the next and final episode of our series on geriatrics, which will focus on dementia. Special thanks to Barbara and Richard, our patient interviewees. Darius Mostaghimi and Dr. Margaret Xu who served as our patient and faculty interviewers, respectively. And of course our fabulous Drs. Jen and Greg Ouellet, who served as our faculty experts and provided peer review for the project. 

The episode was produced by Daniel Wang and myself and was edited and produced by Dr. Josh Onyango. Follow us at PCPearls on Instagram or at PCarePearls on X or Twitter to get details on show release times. Throw us a five-star review to help others find our channel. And please share the episode with friends who would find today's topic interesting. 

This is Helen Cai with Primary Care Pearls. Thanks for joining us. We'll catch you in the next one.