Intensive Caring: Reminding Patients They Matter

Dr. Shannon Westin and her guest, Dr. Harvey Max Chochinov, discuss his article "Intensive Caring: Reminding Patients They Matter." TRANSCRIPT The guest on this podcast episode has no disclosures to declare. Dr. Shannon Westin: Hello, everyone, and thank you so much for joining us for another JCO After Hours podcast. This is the podcast that gets in depth in manuscripts published in the Journal of Clinical Oncology. I'm your host, Shannon Westin, GI oncologist by trade and honored to serve as the Social Media Editor for the JCO.  And today we're going to be discussing a really exciting paper in the Comments and Controversies section called “Intensive Caring: Reminding Patients They Matter.” This has been recently published, and I'm so excited to have the author of this paper join us today, Dr. Harvey Max Chochinov, who is a distinguished professor in the Department of Psychiatry in the University of Manitoba, senior scientist with Cancer Care Manitoba Research Institute, and the cofounder of Canadian Virtual Hospice.   Welcome. So great to have you today.  Dr. Harvey Max Chochinov: Thanks, Shannon. Dr. Shannon Westin: And please note neither of us have any conflicts of interest, so we'll just get right started. So first, I just wanted to explore the title of your paper, “Intensive Caring.” Can you describe a bit about what that means? Dr. Harvey Max Chochinov: Well, we know that in medicine there are occasions when patients find themselves in such medical dire straits that they require intensive care. They've reached the stage where they certainly can no longer help themselves, and they require this kind of intensive approach that medicine is capable of offering. But intensive caring is meant to acknowledge that there are times when patients can be in such dire emotional straits that we need a way of being able to address that degree of abject suffering. So the idea of intensive caring was to try and provide language to describe that approach and, within the paper, as we're going to discuss, also to describe the ways in which we can actually deliver that kind of caring. Dr. Shannon Westin: Can you tell me a little bit about kind of when and where your inspiration for this work arose? Dr. Harvey Max Chochinov: The inspiration actually came from Dame Cicely Saunders. Dame Saunders was the founder of the modern hospice movement. There's a famous quote or adage that she said: “You matter because you are you, and you matter to the last moment of your life.” And this has really become kind of a central philosophical tenet of palliative care. But yet it struck me that although it describes this philosophical approach, implicit is also perhaps a clinical approach which says how do we, in fact, show patients—how do we demonstrate to patients or practice medicine in a way that actually affirms that patients matter? So that's where the title came from: “Intensive Caring: Reminding Patients They Matter.” Dr. Shannon Westin: There are so many pieces to this. I was so struck by what you said about these emotional dire straits. That's the best way I've ever heard it described. I feel like one of the major areas is that loss of hope and that feeling that you don't matter anymore. So what can we do? How do we, as practitioners, act and intervene to change that feeling? Dr. Harvey Max Chochinov: That's a wonderful question. The paradigm of contemporary medicine is we examine, we diagnose, and we fix. And yet, when it comes to addressing many elements of human suffering, it doesn't lend itself well to that paradigm because, of course, we know that there are things that are beyond the realm of fixing. So what we need, then, is to understand a way of approaching patient care where fix really is beyond our reach. How do we do that? It's by understanding that by being with the patient, by things like non-abandonment, all of these things are ways of maintaining patient engagement.  There was a wonderful study a number of years ago by Kelly Trevino in which she looked at the associations between suicidality and the intensity and the quality of the connectedness with the medical oncologist. And it turns out that that was the single most predictive factor regarding suicidality over psychological interventions or over psychotropic medication. So the way in which we start to address this kind of abject suffering, maintaining hope, is to understand that and acknowledge that there are things that we may not be capable of fixing. But the provision of intensive caring—and, again, the elements of intensive caring that I described in the article—give us ways of being able to be with patients that don't require fixing but require presence, require involvement, require ongoing commitment to the well-being of that individual.  Dr. Shannon Westin: This is a perfect segue because I was struck by that tenet of non-abandonment, you know, really committing to ongoing care. I wonder about this because we do have patients that transition to hospice, and often, in our group, they'll have an entirely new care team. And that's just part of that intensive caring that the hospice group provides. But I guess, in seeing it in these terms, I'm feeling a little bit like that may not be the ideal way for that transition to happen. So any thoughts on how we kind of combat that? Or how can we work together with hospice so that the patient feels still supported but still gets that hospice care that they so desperately need? Dr. Harvey Max Chochinov: Oh, for sure. Well, I mean, listen, we know that transferring of care is a technical task that can be accomplished by a single stroke of our keyboard on our computer. We transfer care. But there's nothing technical about the issue of caring, connectedness. And so it's unrealistic, and I don't think patients expect that all expertise resides in the hands of one individual or one team. But the reality is that when we've been looking after somebody for days, weeks, months, even years and they now have to transition to other care providers, although care can be transferred, I think there is still this human expectation of ongoing caring.   And caring doesn't necessarily require a great deal of time. It can be accomplished in really nuanced and subtle ways that really, I think, are within our grasp. Picking up a telephone, dropping by for a visit, putting a note in the mail simply to acknowledge that “I understand you're in hospice. Just want you to know that you've been on my mind. Hope things are going as well as they can for you and your family.” That demonstrates continued caring. It doesn't raise expectation that I, your medical oncologist who know you very well, am going to now intervene and take over your care. Dr. Shannon Westin: That's perfect. And I'm actually taking notes myself to—have a couple patients that I need to call today. So moving on to some of the other tenets, the Patient Dignity Question was really, I felt like, a revelation for me. It's so simple and so straightforward, and I feel like many of us, myself definitely included, don't feel like there's enough time, right, to dig into the details of every patient, kind of where they are in their process. Do you think this is something that everybody should implement today? Dr. Harvey Max Chochinov: So maybe backing up just for listeners to understand that the Patient Dignity Question asks patients, “What do I need to know about you as a person in order to provide you the best care possible?” We have done studies of the Patient Dignity Question, or PDQ, and there have been multiple studies and multiple translations around the world, probably the largest study being one that came out—Hadler, first author—several thousand patients at Memorial Sloan Kettering who were asked the Patient Dignity Question as part of the regular kind of palliative care consultation. I think the message that I take out of the PDQ research is that personhood should always be on our radar. And the reality is that if we don't understand at least the essence of who that person is, we can give lip service to providing person-centered care and lip service to maintaining dignity and all of those wonderful things that we say in position statements, but none of it will ring true if we don't have personhood on our radar. And it simply means that we need to be mindful of personhood.  I've asked patients, “So what do I need to know about you as a person to take the best care of you possible?” I've had people tell me, “I'm afraid to die alone.” I've had people tell me, “I am the victim of childhood sexual abuse.” I've had people tell me, “I'm a survivor of the residential school system.” One man said “I'm a former department head of medicine.” In fact, he was just a lovely man. He said when he was being treated for his cancer, he wanted to hang a sign on his bedpost that said, “PIP, Previously Important Person.” But what it says to me is that if we fail to acknowledge personhood, then essentially we're operating in the dark. When you have that kind of information about personhood, it just changes the way you see and experience that person, which makes for better patient care. Families are more satisfied. There's less discordance when it comes to goals of care, less likelihood of litigation because the reason that most people litigate is not because of medical misadventure. It's because they don't feel like they were treated like a person. They somehow feel like that was not acknowledged.   The other interesting piece of data out of the PDQ research is that when clinicians acknowledge personhood, they also report greater job satisfaction. So the reality is—and we know that one of the signs of burnout is emotional disengagement. So what our research has found is that if you give clinicians a way of at least maintaining some emotional engagement by finding out who this person is, not only are patients and families happier, but healthcare providers report greater satisfaction in the work they do. So the short answer is “Yes, I think we should be putting personhood on our clinical radar and finding ways that are feasible of making that happen.”  Dr. Shannon Westin: There's so many interesting tenets in this article and so many parts to the intensive caring. Some do seem to be elements of palliative care practice as well. So how would you say this is different or complementary?  Dr. Harvey Max Chochinov: I'd say indeed you're correct. I mean, some of the elements are probably ones that people in palliative care would recognize. And I don't necessarily think that that's a criticism or necessarily a bad thing. If some elements of intensive caring are accused of being old wine in a new bottle, a new bottle is something that can be very attractive. And if this can bring people back to understanding the human side of health care, well and good. I suppose what is unique about intensive caring are the constellation of elements that are described in the article—and all of the elements, by the way, are empirically based. So the article does lay out various elements of intensive caring and points out the empirical basis of each of those elements.   I think maybe the other thing that's unique about intensive caring is it begins to provide us a language for ways of being able to approach patients who are in these circumstances. Usually, in the face of this kind of abject suffering, our temptation is to feel the need to withdraw, maybe feelings of impotence, maybe feelings of failure. So intensive caring addresses all of those head-on by saying here is a way that you can effectively be with your patients, that you can mitigate their suffering, without feeling that your mandate is to examine, diagnose, and fix. It is a different paradigm, which says you can be present with and provide comfort to. Dr. Shannon Westin: Great. Now, what about therapeutic humility? Can you speak of it like that? I think many of us come into medicine because we like fixing problems. So how does this concept turn the paradigm on its head? You kind of already talked about it a little bit, but I think it's important to mention specifically.  Dr. Harvey Max Chochinov: I think anybody who's been practicing medicine for any period of time has had the experience of confronting things that don't lend themselves well to fixing. Let's take the instance of somebody who is near end of life, or even the instance where a patient has died, you're standing outside of their room, and the family is still there. You have some choices. You can either withdraw, just say, “There's nothing I can do; I've got other things that are more pressing,” or you can go into that room. Now, when you go into that room, you need to be able to put on the shelf any idea that you have the right words that are going to fix what ails this now bereft family.  But I think wise and seasoned clinicians—and I would put to you, see, clinicians who have therapeutic humility would say you go into the room. Why? Because being there, just being present with, acknowledging the loss—and it's not about what you say. Again, if you feel like you have to wait till you have the right words, you never will go in there. But if you just go in empty-handed and allow yourself to be in the presence of that kind of suffering, what any clinician who does that will say is it's of critical importance. It matters. It makes a difference. And so that is one example of therapeutic humility. And again, there are others because there is so much that we deal with. For those of us who deal with patients with chronic illness or incurable illness, the fact is that if you're not humble, you're going to find yourself perpetually feeling like you are failing, like you are not meeting patients’ expectations. What patients expect is not that you can fix what's not fixable. They expect you to be involved. They expect you to care. You will be there for them in times that are tough. Those are elements of intensive caring that are worth taking forward into practice. Dr. Shannon Westin: Well, this has been so educational. I feel like I could talk with you for another hour. But why don't we end by just speaking about the next steps for this work, and how can we make everyone aware aside from publishing in the JCO and putting out this podcast? What else can we do? Dr. Harvey Max Chochinov: Well, hopefully, the approach gives people both the language and the ways in which we can start to implement this in practice. I would hope that it kind of catches or takes hold in medical curricula, but not only in medicine but really in any setting where individuals are being trained who have access to patients. This is not just about doctors. This is about anyone and everyone who has patient contact because the reality is that irrespective of whether you're the medical receptionist or the person making the first incision, you have the ability to either affirm or disaffirm the personhood of the individual that you're in the presence of. That's both a responsibility and, as well, an opportunity. So hopefully, dissemination of this work spreads word that this is an opportunity that we can take hold of, hopefully for the betterment of patients and families and healthcare providers themselves.  Dr. Shannon Westin: Great. Well, thank you so much. You've been such an inspiration. I can't wait to start utilizing these in my clinic just tomorrow. So I really appreciate you, and I know all our listeners do as well.   Listeners, we appreciate you. Thank you so much for tuning into JCO After Hours. Again, we were discussing the Comments and Controversies article “Intensive Caring: Reminding Patients That They Matter.” I hope you enjoyed it. Please do check out the website and check out any other podcasts that are ongoing and let me know what you think. Have a great day.  The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 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