Time Stamps

  • 01:13 Intro
  • 04:30 What are some definitions of hope?
  • 09:50 How can we address unrealistic hope?
  • 21:23 Addressing hope in clinical practice
  • 32:03 Conclusion

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Show Notes

  • What are some definitions of hope?
    • Defining hope (two main features)
      • Agency:Ā  the determination to meet your goals
      • Pathways:Ā  actual plans to meet those goals
    • Hope vs optimism
      • Hope: Ā anchored on particular goals/outcomes
      • Optimism: Ā general belief that positive outcomes will occurĀ 
    • The positive and negative impacts of hope
  • Addressing unrealistic hopes
    • Unrealistic hopes can be spurred on by societal messaging/media representation of miraculous outcomes
    • Clinicians sometimes contribute to unrealistic hopes by using overly optimistic language
    • Unrealistic hopes arenā€™t always a problem, but if they interfere with realistic planning for the future, here are some conversational strategies for gently introducing prognostic awareness:
      • Ask permission to share your (divergent) clinical expectations
      • Approach with curiosity and humility
      • Making it about the body, rather than the person
  • Cultivating hope in clinical practice
    • Donā€™t focus on refuting unrealistic hopes!Ā 
    • Using curiosity, explicitly investigate other hopes
      • Ask: ā€œWhat else? What else?ā€
      • Expanding the hope portfolioĀ 
    • Focusing on what can be controlled in serious illness (implicit messaging)
      • Control of physical symptoms
      • Emotional support, care, and dignity
      • Practical supports; navigating day-to-day living
      • Use of humor by clinicians!Ā 
      • Helping them live/cope/find joy in the present moment
    • Exploring the tension between competing hopes
      • Support in prioritization
      • Living in the present
      • Preparing for the future
  • ConclusionĀ 
    • Practicing communicationĀ 
    • Everyone is hopefulā€“theyā€™re just hopeful for different things
    • Stay curious about the patientā€™s story

Transcript

Jafar:Ā You know, thereā€™s no place like hope. Maybe especially when youā€™re sick. Itā€™s like hope rises to meet stress that illness brings with it. I even walked past a sign in the cancer center that I work at that read ā€œthe only thing stronger than fear is hope.ā€ And so hope is all over the place:Ā  patients hear about new options for cancer treatment on a weekly basis, with new radiation techniques or therapeutic mechanisms that make the power science seem limitless, and major cancer centers that even brand themselves the ā€œCity of Hope.ā€ 19th century author Dr. Orison Swett Marden once wrote ā€œ”There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow.ā€ Ā  So I ran up from clinic one day to sit with the husband and children of one of my patients with lung cancer, intubated after a major brain bleed from metastatic disease. We spoke for a long time about how much was stacked against her, about the incurable nature of her cancer, but what they wanted was clear:Ā  trach, PEG, LTACH placement, continue her targeted therapy through the G-tube, and hope for recovery, hope her current treatment kept the cancer under control, and hope for better treatments in the future. It sentenced her to a quality of life most people wouldnā€™t choose for themselves, but some amount of recovery wasnā€™t strictly impossible, and itā€™s what she wouldā€™ve wanted. So why was their hopefulness so difficult to take in? Ā  Honestly, I donā€™t think Iā€™m unique in thisā€“in fact, everyone from the ICU attending and resident team working that day seemed to share my discomfort, and we all dealt with it in different ways. Some people got jaded, took jabs at the family, calling them crazy or unrealistic, some even went so far as to say they were torturing a dying woman. And so it was this recurrent distress of hearing patient hopes that run counter to our expectations as clinicians, and the tough dynamics it created with patients and their families that led us to think about Hope as the topic for todayā€™s episode. Specifically, we want to talk about what parts of hope are adaptive, where it may become dangerous, and how we as clinicians can support patients with serious illness in their hopes. Welcome back to At the Bedside, Iā€™m Jafar

Tamar:Ā Iā€™m Tamar

Margot:Ā and Iā€™m Margot

Jafar:Ā Weā€™re joined today by one of the giants in the field of palliative care, Dr. Robert Arnold, Distinguished Professor of Medicine, Section Chief of Palliative Care & Medical Ethics, and director of the Institute for Doctor-Patient Communication at the University of Pittsburgh Medical Center. And he really understands the nuances of talking to patients with serious illness, not just from his long career as a palliative care doc, but also from the research that can inform us on how to do it better.

Dr. Arnold: There’s a whole literature on how to help people both hope to live as long as possible, and the confrontation that all of us will not live or not accomplish certain goals. Ā 

Jafar:Ā Dr. Arnold is a major leader in this literature, most recently co-authoring a piece in JAMA with Drs. Abby Rosenberg and Yael Schenker titled ā€œHolding Hope for Patients With Serious Illness,ā€ which helped inspire this episode. Weā€™re going to dive into a lot of good communication pearls around this topic, but first Iā€™ll turn it over to Tamar, who will give us some definitions and concepts to get us grounded. Ā 

What are some definitions of hope?Ā 

Tamar: We have to start by defining what weā€™re talking about. It can get a little tricky to put into exact words, but what is hope? How do we define it and how is it studied?

Dr. Arnold: There are a lot of scales for hope, right?Ā There’s a whole positive psychology world out there that studies hope. And we need to sort of be sort of as doctors sort of looking at that literature, cuz that literature is gonna help us. Ā 

Tamar:Ā One well-known model that Dr. Arnold discussed is the Hope Scale developed by psychologist Charles Richard Snyder and his colleagues, which defines hope in terms of setting specific goals. And they measured hope with two components: the first is ā€œagency,ā€ which is the determination to meet your goals, and the second component is ā€œpathways,ā€ which means making actual plans to meet those goals.Ā And though that can seem like just a theoretical framework used to study the concept of hope, Dr. Arnold also modeled how it can be translated into real conversations with patients: Ā 

Dr. Arnold: As you think about the future, what are you hoping for? What else, what else, you know, I’m gonna ask you every couple visits and it may change over time and that’s okay with me and let’s focus. I may focus you on the things that I think I have the most ability to change. And we’ll talk about that. That is we don’t talk about it as if it’s not a unitary concept.

Tamar: So itā€™s not that people have or do not have hope, but rather that they have varying degrees of hope, that they have different hopes for different things, and that hope evolves as situations change. Hopes are diverse and dynamic.Ā And as we spoke about this with Dr. Arnold, another question that came up was whether being hopeful is the same thing as being optimistic.Ā Ā  Ā 

Dr. Arnold:Ā Optimism is different. Optimism is the degree to which an individual believes that positive outcomes will occur in the future rather than negative outcomes. And it’s not necessarily tied to a specā€”Hope is always about something, it’s directional about specific outcomes.

Tamar:Ā So hope and optimism are not the same, but theyā€™re obviously related. Interestingly, the ā€œoptimism biasā€ is one of the most common biases reported in psychology and behavioral economics. We overestimate the likelihood of good future events while underestimating the likelihood of bad ones. So, for example, most people think theyā€™re going to live longer than the average person, but then they downplay their chances of getting into a car accident. And this comes up often in the setting of critical illness and prognosis.Ā 

Dr. Arnold: There’s a certain sense in which I just think that’s normal.Ā We hope it’s better than what people told us. That’s just, it seems to me to be human nature.

Tamar: Itā€™s common to think things will be better for us than what the statistics might say. But just because itā€™s normal, does it mean itā€™s helpful? Do some hopes offer specific benefits? Could others get in the way of realistic decision-making? Can it be a problem to be overly optimistic? Ā 

Dr. Arnold:Ā I think the positive aspects of hope is that it helps people cope. It gives them something to keep working towards. It gives them goals. It gives them a sense of agency about what they have to do. Ā  I think when hope gets problematic is when people are rigid about their hope when they only can come up with one thing that they’re hoping for. You know, it’s again, that’s when it turns to be a problem.Ā When I say, ā€œwhat else can you hope for?ā€Ā  And they’re like, ā€œnothing. The only thing we can hope for is a miracle.ā€Ā  ā€œCan you imagine what would happen if God had other plans?ā€Ā  ā€œNope!ā€Ā  I think in those cases, I worry that the, the inability to be cognitively or emotionally flexible in thinking about the future, may lead them to be disappointed. Ā 

Tamar:Ā So itā€™s really tricky:Ā  Hope has been shown to be an important resource for terminally ill patients and their caregivers, helping them to deal with uncertainty and improving their psychosocial well-being. But there are also studies that show that high hope and optimism scores can be correlated with poor prognostic awareness and possible overtreatment, mistaking palliative interventions for curative ones, or avoiding important decisions in advance care planning. Ā  This trickiness is part of what raises so much moral distress for clinicians — we want our patients to have a clear and accurate understanding of whatā€™s going on, but weā€™re sometimes afraid that being frank and honest can be harmful.Ā And thereā€™s some interesting evidence behind that intuition: in a study of patients with incurable GI cancers, accurate prognostic awareness was associated with a lower quality of life and higher levels of anxiety. And yet, the information is important to have; patients who had a good understanding of their prognosis were found to have more realistic treatment goals.Ā So how do we help patients navigate all this? Dr. Arnold gave us a really useful framing: Ā 

Dr. Arnold: You know, I know that playing the lottery, I’m unlikely to win, but everybody who plays the lottery hopes they’re gonna win. That’s not a problem. The problem is if you build your budget based on winning the lottery. Ā 

Tamar: And with that in mind, weā€™ll spend the rest of the episode tackling how to actually approach different types of hopes with our patients. Margot will start that discussion with what can feel particularly heavy as a clinician: hearing patients express hopes that seem incongruent with the reality of their disease.Ā Ā  Ā 

Unrealistic Hopes

Margot: As a hospitalist at a cancer center, Iā€™ve heard a wide range of hopes – some of which I worry will never come to pass. Patients hoping for a miracle, for years when they have only weeks, for just one more round of chemo despite being on deathā€™s door. These wishes are hard to hear, and like many people I often feel at a loss for what to say next – so we wanted to explore some strategies for understanding and addressing false hopes. Ā  Where do these hopes come from? Patients often develop their hopes on their own, but the healthcare system encourages people to dream big. When I bike home after work, I pass the Pfizer building, where foot-high letters display a motto: ā€œWe believe science can cure every human from disease.ā€ Hospitals have slogans like ā€œMiracles Happen Hereā€ and ā€œWe Find a Wayā€ – and as long as healthcare advertises miracles, patients will hope for them. Ā  Ā 

Dr. Arnold:Ā In some ways patients can’t win, right. Cause the societal messages and the messages of medicine push them in one way. And then when they’re unrealistic weā€™re like mad at them, cuz they’re unrealistic, but everything on television encourages them to like hope for a miracle and never give up. And you know, every doctor television show is about, if the doctors just keep searching, they’ll find some crazy that, you know, like seriously, it’s impossible.

Margot: On an individual level, our language as clinicians can be misleading. Itā€™s hard to share bad news – so we soften our terms, but sometimes our language is so gentle that we donā€™t effectively communicate what weā€™re trying to say. Ā 

Dr. Arnold:Ā It’s just seems to me, I’ve seen this so much in people who have metastatic cancer that we say the first time we can’t cure it. And then that language goes completely away. You say that the first visit, and then almost every other visit it’s the cancer is smaller. We can’t see any of the cancer. We use words like it’s in remission. And if I’m a living person, who’s not a clinician. If I say to you, ā€œwe can’t see anyā€, I think it’s cured. I wish oncologists would say, ā€œwe know it’s still there, but it’s too small for us to see. We’d like to keep it that way. Even though we know it’s there.ā€ Now I would argue, we don’t say that, cuz that would be like raining on our 4th of July parade. Ā 

Margot: Clinicians may be hesitant to share bad news because we donā€™t want to take away hope. We asked Dr Arnold – if weā€™re slow to correct unrealistic expectations, are we colluding with our patientsā€™ false hopes?

Dr. Arnold: Ā It would be collusion. If I didn’t say, are you willing to think about it would be collusion. If I said, if I didn’t ever give them what I, my view of the future was gonna be, it would be collusion. If I didn’t say to them, I wonder when we can think about talking about what I see is happening. That would be collusion. I’m not colluding. I’m trying to walk with them and seeing what they can hear today, given where they are in their coping and death, anxiety and fear of the future. Ā 

Margot:Ā Sometimes, we end up unintentionally colluding with our patientā€™s false hopes. We care about our patients; we want to be the doctor that helps them achieve their goals. There have even been times where my hopes have become so intertwined with those of my patients that Iā€™ve felt like a professional failure when they decline. I remember caring for a woman in residency, who came in with edema and was found to have imaging evidence of a new metastatic malignancy. We did everything we could to stabilize her for biopsy, but she developed an infection, and then a bleed, and one thing kept piling up after another until we realized that she was dying. My patient knew it before I did – I couldnā€™t shake my hope.Ā I donā€™t mean to pin all the blame for false hopes on clinicians, but itā€™s helpful to reflect on our contribution because itā€™s one factor that we have control over. We can also control how we respond to false hopes when they come up.Ā  Ā 

Dr. Arnold: So many people are distressed when people hope for something that the doctor’s like, Ooh, that’s not gonna happen. I have to convince them that their hope isn’t true. And we found that that’s not very helpful and guess, leads to a scenario where the patient doesn’t believe you’re on their side or that you hope forĀ .

Margot: While my stomach sinks every time I hear an unrealistic goal, the hope itself might not be a problem. Unrealistic hopes make us worry that we havenā€™t adequately communicated our concerns, but as long as the patient is planning realistically for the future, we donā€™t need to strike down each and every statement that comes across as overly optimistic.Ā But if a patient hopes so fervently for a particular vision of the future that itā€™s hard to have discussions about the present, itā€™s time to share difficult information with honesty and compassion. Start by asking for permission to share – an important first step even if the patient says no. Ā 

How to offer urgent prognostic information to resistant patients

Dr. Arnold: If I offer to give information and they say, ā€œNope, I don’t want it,ā€ if I give information, what I’m really saying to them is ā€œI don’t care that you said, no, I’m gonna tell you anyway,ā€ that will almost never go well. If I offer not to give it to them and they say they don’t want it, I can say, ā€œOoh, can I tell you what I’m worried about if we don’t have this conversation now?ā€ I can say, ā€œhuh, tell me more, help me understandā€ā€¦ I can name what I think is the anxiety or emotion behind it. What I can’t do is give them the information, if I ask them that they wanted it, and they said, no.Ā 

Margot:Ā An initial no doesnā€™t mean the conversation is over. Ā 

Dr. Arnold: If you offer and they say no itĀ doesn’t mean that you can’t come back tomorrow and say, ā€œHey yesterday, you told me you really didn’t wanna talk about that. Help me understandā€, and when I say, can I talk about ā€œxā€, 95% of people are like, ā€œoh okā€, so in the five percent, when they say no, I need to slow my down, say, ā€œhuh” an we talk about what’ll happen if he gets sicker?ā€ ā€œI don’t want to hear it.ā€ ā€œThat makes me really nervous. Cuz I’m worried that we may need to do some things to your dad that are, are really tough on his body. And uh, a lot of people wouldn’t want that.ā€ ā€œI don’t want to hear it.ā€ Okay. Heā€™s full code. We’re gonna, you knowĀ bodies do what bodies do. They can’t hear it today. Cause look, the bottom line is even if I talk to them about it, I know what they’re gonna say. They’ve told me what they’re gonna say. So I need to build a relationship. I need to be respectful of them. I need to be a, a witness on the journey with them and trying to push them to a place that they’re not able to think about right now.

Approaching with curiosity + humility

Margot:Ā If the patient has given you permission to discuss these difficult topics, the next step is to come to a better understanding of where these hopes come from. Dr Arnold recommended approaching the situation with curiosity and humility.

Dr. Arnold:Ā There’s a certain sense in which I just think that’s normal.Ā We hope it’s better than what people told us. That’s just, it seems to me to be human nature.Ā Well, and you have to be curious, right? If they’re seeing the same thing I’m seeing, where does the hope come from? And often they have stories to tell where we’ve been wrong before. So I should remain cautious cuz I’m not great at predicting the future, right? I joke to my patients that if I could predict the future, Iā€™d take them to Las Vegas. We’d all retire in a weekend and yet I’ll give you, I’ll be as honest as possible, about what I think’s gonna happen or what I’m worried is gonna happen. And then we’ll make decisions based on sort of where, where we’re going.

Margot:Ā Hope/worry statements can be helpful.

Dr. Arnold:Ā I’ll say, I hope I’m wrong in what I, what I think is gonna happen. And I don’t want you to feel unprepared

Margot: Remember, youā€™re not on your own. If patients or their surrogates are singularly focused on an unrealistic goal, we can partner with other services to understand and support their underlying emotional needs.

Dr. Arnold:Ā People who are like, ā€œI can only hope for thisā€ kind of people, they didn’t come out of nowhere. They have a history and a way of coping in the past that I need to understand. I need to be more curious about them. And sometimes I need to go to people who are smarter about psychological concepts than me, my social workers, my psychologists, my psychiatrist, and say, Hey, help me understand how to, what could I do to open more paths for them?

Making it about the body

Margot:Ā Dr. Arnold mentioned some strategies for gently bringing patients into prognostic awareness, in ways that help ease the emotional burden of looking at difficult truths.

Dr. Arnold:Ā One of the things that one, a very smart doctor taught me is that I talk about their body separate from them. ā€œSo your body seems to be sort of getting sickerā€. It’s not them. It’s not that they don’t want to get better. Their body has made different choices than what they were hoping for.

Margot:Ā This can ease us in to a conversation where we can think more concretely about the future.

Dr. Arnold: And I’ll sayĀ can we talk about what we might see from his body if it starts to get better and what we might see if it, that is we begin to do a little hypothetical planning and that’s it for today. We come back, we see how that sits with them. I don’t push them. I offer, ā€œWould you like to hear what my worry is?ā€ Because in the end his body is gonna do what his body does. And regardless of modern medicine, if he’s gonna die, he’s gonna die. Right? We like to think we can keep bodies alive forever, but the truth is we can’t.

Margot;Ā The body can continue to be a touchstone for reality testing throughout each encounter

Dr. Arnold: What’s your body telling you. I can do a functional assessment: compared to three months ago, how’s your appetite doing? How’s your weight doing? How’s your energy doing? Right. If all them are doing worse and they’re saying it to me, saying, oh, sounds like things aren’t going the way we would want it. I’m floating balloons to see how they respond to them. What’s going through your head as you think about the future. What are you most concerned about? What you hoping for? What else, what else? Ā  nd then do you wanna hear what I think? And I listen for uncertainty or sadness. Cause if somebody says, ā€œI just don’t want to, I don’t want to hear what you think. I know they’re not, isn’t good newsā€. What are they telling me? I think they’re telling me, ā€œI know things aren’t going well. I just don’t wanna have it out there in the ether.ā€ And then I can say, ā€œI hear you. It feels like it’s just too sadā€. So instead of we talk, instead of naming it, we talk about it one step removed, right. And that may be the best they can do for today. That’s OK. Ā 

Margot:Ā To sum up, itā€™s worth thinking about how our language might contribute to false hopes so that we donā€™t unintentionally build people up for disappointment. When a patient shares an unrealistic goal, donā€™t automatically assume itā€™s a problem: while these hopes can make us uncomfortable, theyā€™re really only a problem if they prevent the patient from planning realistically for the future. Ask permission to share difficult information, and approach unrealistic hopes with curiosity and compassion.

Addressing hope in clinical practice

Jafar:Ā Ok, so we have many tools for cultivating prognostic awareness, even for those people who seem fixated on hopes that run against our clinical expectations. But this is only the beginning of our work, not the focus of it.

Dr. Arnold: I think doctors, um, we don’t like to be wrong. And so when people talk about things happening that we think is very unlikely, we feel the need to correct them. And part of what I’m saying is correcting people ā€“ you can try once, but if it doesn’t work once, doing it over and over again, not sort of like not likely to work. And then I just want you to be more curious about it and try to expand rather than telling them that what they’re hoping for is not likely to happen.

Jafar:Ā Yea, so simply fighting against unrealistic hopes is not likely to be successfulā€“there has to be something beyond it to strive for in the conversation.Ā 

Dr. Arnold: When I see people in the ICU who I everybody’s like, ā€œThe family doesn’t get it!ā€ And the family says, ā€œthe doctors all say he’s gonna die, but we can’t give up. We’re hopefulā€. I’m like, ā€œheck yes, you’re a loving son and daughterā€. The key question is, what is it to give up? The key question is, how can I hope for things that people don’t think is gonna happen and yet think about whether they may and help my loved one have as good of existence in the time that they’re gonna have. It’s not, will they give up the hope that there’s gonna be an unexpected miracle? I can’t affect that. And those people are convinced that the doctors don’t care about their loved one, cuz all they’ve done is try to convince the family that the family’s hopes aren’t gonna come true.Ā  And so part of what I want you to do is stop pushing them, but give some space for them to not have to defend their hope against you. Not have to make them be the good guys who are protecting their dad, and you the bad guys who won’t give their dad a chance. And just be curious about them, about this loving and caring family who sees things differently than you do. And so my biggest, again, the reason we wrote this article is that we saw people Ā  wanting to convince them their hope was wrong. And that just never seems to be helpful and seems to lead the doctors and nurses to be unhappy and the family or patient to be unhappy. And thinking that there’s a better way of being curious about their hope, about expanding the hope about joining with the hope at the same time we’re worried it may not be able to be accomplished.Ā Ā 

Jafar:Ā Ā Right! And one of the central themes about hope we want you to take away from this episode is that patient hopes are not this narrow, fragile commodity, anchored only on certain outcomes. Hope is – or at least can be – so much more than that.Ā 

Dr. Arnold: Cuz we’re doctors, we think the only thing that people hope for is living as long as possible. I don’t think we give them enough credit and I can have one hope dashed and have other hopes fulfilled. And I’m okay with that. You know, Tony Back who’s one of my colleagues talks about what I want is a portfolio of hope Some of which are I can clearly help them accomplish some of which may be stretches. Some of ’em may be like playing the lottery. Ā The key is to have a portfolio of hope. That’s what gets you up in the morning. It’s not just hoping for one thing.

Jafar:Ā Ā Itā€™s when people start getting narrow that they may need help in expanding that ā€œhope portfolioā€, both through curious questioning like Dr. Arnold mentioned, but also through prompts or suggestions from us as clinicians. Interviews with seriously ill patients have shown that hope can be found in many different areas of life, and particularly in those areas where we can offer patients more control. That might mean finding control over physical symptoms; finding emotional, social & practical supports in navigating daily life; or participating in activities that enhance their sense of dignity, like life review or legacy work. Even something as simple as humor can be a hope-giving practice, for reasons weā€™ve gone into on an earlier episode of At End Bedside. The point is that being curious and being explicit about how we talk about hope can help patients find more of it in their world, while also helping them prioritize the most achievable ones.

Dr. Arnold:Ā I just ask, what else are they hoping for? I just keep saying what else and then say let’s, you know, I think that, can we focus on this one for today? That is I can direct attention to one thing rather than another thing. And that will often help us foster hope and foster trust that I care about their hopes and that I’m listening to them as people. I can just say you hope not to have so much pain so you can go to the 4th of July picnic. Let’s work on that. I think I can make a difference there. Remember, by putting your attention on some hopes, rather than other hopes, you also give an implicit message. That’s okay. I can do it implicitly.

Jafar:Ā The problem for many people is actually that we hold multiple, conflicting hopes and realities in our head at the same time, with a lot of ambivalence between themā€“and this is totally normal. Dr. Arnold and his colleagues describe hope using 3 Cā€™s, that hope is COMPLEX, CONTEXTUAL, and CONTINUOUS.Ā Ā 

Dr. Arnold: For many people, I can know ā€œXā€ and still hope for ā€œY.ā€ We’re a little bit like Alison Wonderland. We can believe both ā€œAā€ and ā€œnon-A.ā€ That’s what’s so interesting about us as humans and it’s okay as long as I can hold them in my head and I can go back and forth between them.Ā Being a palliative care doctor in an oncology setting is helping people go back and forth between wanting to live longer and being able to confront death and living as good as possible in the moment. And it seems to me, that’s what we do. And one of the ways we do that is to diversify hope. It’s that you can think of other things that you’re hoping for. So if I can’t, you can’t live as long as you want. You know, maybe you can role model to your adult children, what it’s like to die well. Maybe you can have that vacation that you always wanted. Ā 

Jafar:Ā A lot of times, this ends up breaking down around QUANTITY vs QUALITY of life, and the tension between striving for an uncertain future vs living in the present.

Dr. Arnold:Ā And the question, how do I help them negotiate that? And how do I both hold that they have different hopes and get them to talk about those different hopes and to negotiate those different hopes. To a certain extent, part of this is how do I help them cope with getting and not getting things that they’re hoping for and still in the moment enjoy their lives as long, as much as possible. Cause one of the things that I see as a palliative care doctor is people have hopes for the future that completely destroy their current lived experience. And so one of my jobs is – as they’re hoping for a future that may or may not happen – how can we enjoy their current lived experience and hope for have in the moment hopes and the here and now hopes that we can help them live as good as possible?

Jafar: Like Margot was saying, we as clinicians can have the most actionable influence through helping patients not plan their whole life around uncertain or unrealistic hopesā€“hopes that may lead them to disappointment or even catastrophe. In other words, helping patients commit to some preparation in the here-and-now while allowing hope for the future.

Dr. Arnold:Ā If someone says, I know that you told me I’m gonna live five months, I’m convinced I’m gonna live five years. They’re making a predictor about the future that neither of us know who’s gonna be right. The question is, as they hope to live for five years, can they also acknowledge and plan for five months? I’m more than okay with people hoping to live for five years, even if I think it’s gonna be less true. The example I’ll I’ll tell is of a friend who had ovarian cancer. This was 10 years ago. She progressed through two cycles of ovarian cancer. She went on a microbiotic diet, cuz that was gonna cure the cancer. She therefore could explain her losing weight cuz of the microbiotic diet two days before she died, she wouldn’t eat a Krispy Kreme donut cuz she was still convinced the diet might kick in. On the other hand, she stopped doing chemotherapy. She agreed to hospice. She moved in with family.Ā  That is, she never gave up her hope that she was gonna, the diet was gonna work and she was gonna be cured. She could hold both at the same time.

Jafar:Ā We have to believe that patients are resilient enough to look into many possible futures when making healthcare decisions. Weā€™ve all heard the saying ā€œhope for the best, prepare for the worst,ā€ but one of the better ways Iā€™ve heard it said is ā€œhope for the best, prepare the rest.ā€ And this is a better way of saying it because, well, first it rhymes, and rhyming is always better, but also thereā€™s so many possible futures to plan for, itā€™s not just about death. More importantly, doing this planning doesnā€™t put their hope in jeopardy.

Dr. Arnold:Ā One of my colleagues looked at advanced care planning and did it influence hopefulness it didn’t by the way. So cuz people are worried that if you do advanced care planning, people, you know, give up hope. And so there is science out there and I would urge that we need to sort of, particularly those of us who deal with serious illness, we need to sort of think about what that science shows and it will continue to show.

Conclusion

Jafar:Ā Ok, so in full review, hope has a lot to offer. Itā€™s not only our default tendency as humans, there are ways we can expand and move between many different hopes for patients with serious illness. There can definitely come times when patients anchor on certain unlikely hopes in ways that we as clinicians find distressing, but we hope – oh hey look, I did right there – but we hope weā€™ve offered a number of tools today to help gently probe for prognostic awareness and plan for different possible futures. Specifically, we talked about asking permission to discuss other possible outcomes, approaching with humility and curiosity, avoiding fights about unrealistic hopes while moving towards the fullest possible portfolio of hopes, and helping to prioritize between them ā€“ all while supporting patients in coping and living in the present. Easy, right?

Dr. Arnold:Ā Now I will also say that for cuz I know that you have a lot of medical students and residents who listen to this. These are not things that I was very good at at the beginning. And I would say that, you know, um, Tara pointed out that role playing and saying the words, this is not an intellectual game. You have to practice saying it. You have to find words that fit your personality. Ā practice having these conversations and get feedback on these conversations. Cuz that’s the only way that you learn the communication skills that you really need.

Jafar:Ā Getting to that skillful place may have as much to do with our hopes for and really our faith in patients as it does in their hopes.

Dr. Arnold:Ā Everyone’s hopeful. They’re just hopeful for different things. And I just need to be curious about that story. Be curious about hope, be curious about what the hope patient is hoping for. Be open minded about it. Try to cultivate different things that they’re hoping for and view your job as not correcting their hope, but paying attention to some hopes more than other hopes and sort of allowing their hope to grow in some domains and not grow in other domains as they go through their journey.

Tamar:Ā Thanks for tuning in!Ā  We know these topics can stir up more questions than answers, and we look forward to hearing more about your experiences with speaking to patients about hope. Please continue the conversation with us online at our facebook page, on twitter, or email us directly. Find show notes and contact information for us on our website:Ā  coreimpodcast.com Ā  If you enjoyed listening to our show, please give us a review on itunes or whichever podcast app you use; it helps other people find us.Ā  We work really hard on these podcasts so weā€™d love to hear from you.Ā  Let us know what we are doing right and how we can improve.Ā  And as always opinions expressed in this podcast are our own and do not represent the opinions of any affiliated institutions.Ā  Ā  Finally, special thanks to all our collaborators on this episode, our wonderful audio editor Daksh Bhatia, our illustrator Michael Shen, moral and executive support from Shreya Triveda, and most importantly thanks to you, our listeners!

References

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