No Versus Know: Patient Empowerment Through Shared Decision Making

Listen to ASCO's JCO Oncology Practice Art of Oncology article, "No Versus Know: Patient Empowerment Through Shared Decision Making" by Dr. Beatrice Preti, who is an Assistant Professor at Emory University. The article is followed by an interview with Preti and host Dr. Mikkael Sekeres. Dr Preti explores the challenges which may prevent oncologists from fully engaging with patients during shared decision making.

TRANSCRIPT

Narrator: No Versus Know: Patient Empowerment Through Shared Decision Making, by Beatrice T.B. Preti, MD, MMed, FRCPC

During a recent clinic, I saw three patients back-to-back, all from minority backgrounds, all referred for second opinions, all referenced in the notes for being different forms of difficult. Refused chemo, refused hospice, read one note. Refused surgery and chemo, read another, unsure about radiation.

Yet, despite the documented refusals (I prefer the term, decline), they had come to my clinic for a reason. They were still seeking something.

As an oncologist trained in a program with a strong emphasis on shared decision making between physician and patient, I approach such situations with curiosity. I consider optimal shared decision making a balance between the extremes of (1) providing a patient complete choice from a menu of treatment options, without physician input, and (2) indicating to a patient the best course of treatment, in the eyes of the physician.1 This is a balance between beneficence (which can often turn paternalistic) and patient autonomy and requires a carefully crafted art. Many of my consults start with an open question (Tell me about yourself…?), and we will examine goals, wishes, and values before ever touching on treatment options. This allows me to take the knowledge I have, and fit it within the scaffold of the patient in front of me. A patient emphasizing quantity of life at all costs and a patient emphasizing weekly fishing trips in their boat will receive the same treatment option lists, but with different emphases and discussions around each.

Yet, many physicians find themselves tending toward paternalistic beneficence—logical, if we consider physicians to be compassionate individuals who want the best for their patients. All three patients I saw had been offered options that were medically appropriate, but declined them as they felt the options were not right for them. And all three patients I saw ended up selecting a presented option during our time together—not an option that would be considered the best or standard of care, or the most aggressive treatment, but an option that aligned most with their own goals, wishes, and values. This is of particular importance when caring for patients who harbor different cultural or religious views from our own; western medicine adopts many of its ideas and professional norms from certain mindsets and cultures which may not be the lenses through which our patients see the world. Even when a patient shares our personal cultural or religious background, they may still choose a path which differs from what we or our family might choose. It is vital to incorporate reflexivity in our practice, to be mindful of our own blinders, and to be open to different ways of seeing, thinking, and deciding.

I will admit that, like many, I do struggle at times when a patient does not select the medically best treatment for themselves. But why? Do we fear legal repercussions or complaints down the road from not giving a patient the standard of care (often the strongest treatment available)? Do we struggle with moral distress when a patient makes a choice that we disagree with, based on values that we ourselves do not hold? Do we lack time in clinics to walk patients through different options, picking the method of counseling that allows the most efficiency in packed clinical systems? Is it too painful a reminder of our mortality to consider that, especially in the setting of terminally ill patients, aiming for anything other than a shot at the longest length of life might be a patient's preference?

Or are we so burnt out from working in systems that deny us sufficient choice and autonomy (with regards to our own work, our own morals, and our own lives) that, under such repeated traumas, we lose touch with the idea of even having a choice?

I have a number of patients in my clinic who transferred care after feeling caught between one (aggressive) treatment option and best supportive care alone. They come looking for options—an oral agent that allows them to travel, a targeted therapy that avoids immunosuppression, or a treatment that will be safe around dogs and small children. They are looking for someone to listen, to hold their hand, to fill in the gaps, as was told to me recently, and not skirt around the difficult conversations that both of us wish we did not have to have. Granted, some of the conversations are challenging—requests for ivermectin prescriptions, for example, or full resuscitation efforts patients with no foreseeable chance of recovery (from a medical standpoint) to allow for a possible divine miracle. However, in these cases, there are still goals, wishes and values—although ones that are not aligned with evidence-based medical practice that can be explored, even if they are challenging to navigate.

As my clinic day went on, I spoke with my patients and their loved ones. One asked the difference between hospice and a funeral home, which explained their reluctance to pursue the former. Another asked for clarification of how one treatment can treat cancer in two different sites. And yet still another absorbed the information they requested and asked to come back another day to speak some more.

All questions I have heard before and will continue to hear again. And again.

There is no cure for many of the patients who enter my GI medical oncology clinic. But for fear, for confusion, perhaps there is. Cancer wreaks havoc on human lives. Plans go awry, dreams are shattered, and hopes are crushed. But we can afford some control—we can empower our patients back—by giving them choices. Sometimes, that choice is pitiful. Sometimes, it is an explanation why the most aggressive treatment option cannot be prescribed in good faith (performance status, bloodwork parametres), but it is a choice between a gentle treatment and no treatments. Sometimes it is a choice between home hospice and a hospice facility.

I teach many of the learners who come through my clinic about the physician's toolbox, and the importance of cultivating the tools of one's specific specialty and area of work. For some (like surgeons), the tools are more tangible—physical skills, or even specific tools, like a particular scalpel or retractor. For others, like radiologists, it might be an ability—to recognize patterns, for example, or detect changes over time.

For those of us in medical oncology, our toolbox can feel limiting at times. Although we have a handful of treatments tied to a specific disease site and histology, these often fall short of what we wish we could offer, especially when studies cite average survivals in months over years. But one of our most valuable tools—more valuable, I would argue, than any drug—is the communication we have with our patients, the way we can let them know that someone is there for them, that someone is here to listen, and that someone cares. Furthermore, the information we share—and the way we share it—has the potential to help shape the path that our patient's life will take moving forward—by empowering them with information to allow them to make the decisions best for them.2 Although having such conversations can be difficult and draining for the oncologist, they are a necessary and vital part of the job. My clinic team knows that we can have up to six, seven such conversations in the course of a half-day, and my clinic desk space is equipped for my between-patient routine of sips of tea and lo-fi beats, a precious few moments left undisturbed as much as possible to allow a bit of recharging. By finding a safe space where I can relax for a few moments, I can take care of myself, enabling me to give each of my patients the time and attention they need.

When patients thank me after a long, difficult conversation, they are not thanking me for sharing devastating, life-altering news of metastatic cancer, prognoses in the order of months, or disease resistant to treatment. They are thanking me for listening, for caring, for seeing them as a person and affording the dignity of choice—autonomy. I have had patients make surprising decisions—opting for no treatment for locally-advanced cancers, or opting for gentle treatment when, medically, they could tolerate stronger. But by understanding their values, and listening to them as people, I can understand their choices, validate them, and help them along their journey in whatever way possible.

Providing a choice affords a suffering human the right to define their path as long as they are able to. And we can give patients in such situations support and validation by being a guide during dark days and challenging times, remembering that medically best treatment is not always the best. When a patient says no to offered options, it does not (necessarily!) mean they are rejecting the expertise of the physician and care team. Rather, could it be a request to know more and work together with the team to find a strategy and solution which will be meaningful for them?

Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I'm your host, Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami.

Today we're joined by Beatrice Preti, Assistant Professor at Emory University, Adjunct Professor at Western University, and PhD candidate with Maastricht University, to discuss her JCO Oncology Practice article, "No Versus Know: Patient Empowerment Through Shared Decision-Making."

At the time of this recording, our guest has no disclosures.

Beatrice, thank you so much for contributing to JCO Oncology Practice and for joining us to discuss your article.

Beatrice Preti: Well, thank you so much for having me today.

Mikkael Sekeres: It's an absolute treat.

I was wondering if we could start with sort of a broad question. Can you tell us about yourself? What was your journey like that landed you where you are right now?

Beatrice Preti: Oh goodness, that's a very loaded question. Well, I am originally from Canada. I did all my training in Canada at a couple of different schools, McMaster, Queens, Western University. Before medicine, I was always interested in the arts, always interested in writing, always interested in teaching. So that's something that's really, I guess, come forth throughout my medical practice. During my time at Western, I trained as a gastrointestinal medical oncologist, so that's my clinical practice. But on the side, as you've noted, I've done some work in medical education, got my Masters through Dundee, and now doing my PhD through Maastricht in the Netherlands, which I'm very excited about.

Mikkael Sekeres: That's fantastic. What's your PhD in?

Beatrice Preti: Health Professions Education.

Mikkael Sekeres: Wonderful - can never get too much of that. And can I ask, are you at the stage now where you're developing a thesis and what's the topic?

Beatrice Preti: Yeah, absolutely. So the program itself is almost exclusively research based. So I'm thinking of more of a social psychology side, looking at impression management and moral distress in medical trainees, and really along the continuum. So what we're looking at is when people act in ways or feel that they have to act in ways that aren't congruent with what they're feeling inside, why they're doing that and some of the moral tensions or the moral conflicts that go along with that. So a good example in medicine is when you're with a patient and you have to put on your professional face, but inside you might be squirming or you might be scared or worried or anxious or hungry, but you can't betray that with the patient because that would be unprofessional and also unfair to the patient.

Mikkael Sekeres: Wow, that's absolutely fascinating. How does that change over the course of training? So how does it change from being a medical student to a resident or fellow to a junior faculty member?

Beatrice Preti: So I'm only one year into the PhD, so I don't have all the information on this as yet.

Mikkael Sekeres: You don't have all the answers yet? What are you talking about?

Beatrice Preti: Yeah, they're telling me I have to finish the PhD to get all the answers, but I think that we certainly are seeing some kind of evolution, maybe both in the reasons why people are engaging in this impression management and the toll it takes on them as well. But stay tuned. It might take me a couple of years to answer that question in full.

Mikkael Sekeres: Well, I just wonder as a, you know, as a medical student, we go into medical school often for reasons that are wonderful. I think almost every essay for somebody applying to medical school says something about wanting to help people, right? That's the basis for what draws us into medicine. And I wonder if our definition of what's morally right internally changes as we progress through our training. So something that would be an affront to our moral compass when we start as a medical student may not be such an affront later on when we're junior faculty.

Beatrice Preti: Yes, definitely. And I think there's a lot of literature out there about coping in the medical profession because I think that by and large, especially in the lay community, so premedical students, for example, but even within our own profession as well, we don't really give enough credence to the impact a lot of the things that we do or witness have on us personally. That lack of insight doesn't allow us to explore coping mechanisms or at least think things through, and oftentimes what we're seeing is a survival instinct or a gut reaction kick in rather than something that we've carefully thought through and said, you know, "These situations are stressful for me, these situations are difficult. How can I cope? How can I make this more sustainable for me, knowing that this is an aspect of medicine that really isn't escapable."

Mikkael Sekeres: What a fascinating topic and area to be studying. I can't wait for all of the findings you're going to have over the course of your career. But oncology is a field that's, of course, rife with these sorts of conflicts.

Beatrice Preti: Yeah, definitely.

Mikkael Sekeres: I'm curious if you can talk a little bit about your own story as a writer. You say you've always been a writer. How long have you been writing reflective pieces?

Beatrice Preti: Oh, goodness. So there's certainly a difference between how long I've been writing reflective pieces and how long I've been writing good reflective pieces. I can vaguely remember, I think being perhaps 10 years old and writing in school one recess period, sort of both sides of a loose leaf piece of paper, some form of reflection that would have ended up straight in the rubbish bin. So that was probably when it started. Certainly in medical school, I published a fair bit of reflective writing, poetry. That continued through residency, now as a junior attending as well.

Mikkael Sekeres: Well, you're excellent at it and I can't see any rubbish can that would accept your pieces for the future.

If you feel comfortable doing so, can you tell us what prompted you to write this particular piece?

Beatrice Preti: Yes. So this piece was written Friday night around 9:00, 10:00 at night, literally at the end of the clinic day that I described. Coming on the heels of talking about coping, I think for many people in medicine, writing is a coping mechanism and a coping strategy that can be quite fruitful and productive, especially when we compare it to other potential coping strategies. Sometimes it's certainly difficult to write about some of the things we see and certainly it's difficult sometimes to find the words. But on this particular night, the words came quite easily, probably because this is not an isolated incident, unfortunately, where we're seeing patients coming for second opinions or you're encountering patients or you're encountering people who you are not directly treating in your everyday life, who express frustrations with the health care system, who express frustrations with not feeling heard. I think all you have to do is open social media, Facebook, Reddit, and you'll see many, many examples of frustrated individuals who felt that they weren't heard.

And on one hand, I'm not naive enough to think that I've never left a patient encounter and had that patient not feeling heard. I'm guilty of many of the same things. Sometimes it's nothing that we've done as physicians, it's just you don't develop a rapport with the patient, right? But it made me think and it made me wonder and question, why is there this mismatch? Why are there so many patients who come seeking someone who listens, seeking a solution or a treatment that is maybe not standard, but might be a better fit for them than the standard? As you know, oncology is very algorithmic, and certainly, as many of the the fellows and residents who come into my clinic learn, yes, there are guidelines and yes, there are beautiful flow charts that teach us if you have this cancer, here's the treatment. But for me, that's only half of the practice of oncology. That's the scientific side. We then have the art side, which involves speaking to people, listening to them, seeing them as people, and then trying to fit what we're able to do, the resources we have, with what the patient's goals are, with their wishes or desires are.

Mikkael Sekeres: I completely agree with you. I think sometimes patients come to our clinics, to an examination room, and they look at it as a place to be heard, and sometimes a safe space. You'll notice that, if you've been practicing long enough, you'll have some couples who come in and one of our patients will say something and the partner will reflect and say, "Gee, I never heard you say that before. I never knew that." So if people are coming in expecting to be heard in a safe space, it's almost nowhere more important to do that when it comes to treating their cancer also.

Beatrice Preti: Yes. And as I say again to many of our learners, different specialties have different tools to treat or help alleviate sickness, illness, and suffering. For example, a surgeon has quite literal tools. They have their hands, they have their eyes, they're cutting, they're performing procedures. By and large, especially in medical oncology, we are quite limited. Certainly I have medications and drugs that I can prescribe, but in the world of GI oncology, often these are not going to lead to a cure. We are talking about survival in the order of months, maybe a year or two if we're very lucky. So the tool that we have and really the biggest, best treatment that we can give to our patients is our words and our time, right? It's those conversations that you have in clinic that really have the therapeutic benefit or potential for someone who is faced with a terminal illness and a poor prognosis more so than any drug or chemotherapy that I can give as a physician.

Mikkael Sekeres: I love the notion that our words and our time are our tools for practicing medicine. It's beautiful.

You mentioned in your essay three patients who, quote, and you're very deliberate about using the quote, "refused" because it's a loaded term, "refused" recommended medical intervention such as chemotherapy or surgery. Can you tell us about one of them?

Beatrice Preti: Ah, well, I would have to be quite vague.

Mikkael Sekeres: Of course, respecting HIPAA, of course. We don't want to violate anything.

Beatrice Preti: But I think that was another thing too on this day that struck me quite a bit that it was three patients back to back with very similar stories, that they had been seen at other hospitals, they had been seen by other physicians - in one case, I think a couple of different physicians - and had really been offered the choice of, "Here is the standard of care, here is what the guidelines suggest we do, or you can choose to do nothing." And certainly in the guidelines or in recommended treatment, you know, doublet chemotherapy, triplet therapy, whatever the case may be, this is what's recommended and this is what's standard.

But for the patient in front of you, you know, whose goal may be to go to the beach for two months, right? "I don't want to be coming back and forth to the cancer center. Can I take a pill and maybe get blood work a few times while I'm there?" Or you have a patient who says, "You know, I tried the chemotherapy, I just can't do it. It's just too strong. And now they've told me I have to go to hospice if I'm not going to take the recommended treatment." While in the guideline this may be correct for this patient who's in front of you, there may be another option which is more, in quotes, "correct", because, is our goal to kill as many cancer cells as we can? Is our goal to shrink the cancer as much as we can? Is our goal even to eke out the maximum survival possible? As an oncologist, I would say no. Our goal is to try to line up what we can do, so the tools, the medications, the chemotherapies, the drugs that we do have in our tool kit, and the symptom medications as well, and line those up with what the patient's goals are, what the patient's wishes are.

For many people, I find, when faced with a terminal illness, or faced with an illness with poor prognosis, their goal is not to eke out the last breath possible. They start to look at things like quality of life. They start to look at things like hobbies or travel or spending time with family. And oftentimes, the best way to facilitate that is not by doing the most aggressive treatment.

Mikkael Sekeres: In my memory, you evoke an essay that was written for JCO's Art of Oncology by Tim Gilligan called "Knuckleheads" where he had a patient who was, big quotes, "refusing" chemotherapy for a curable cancer. And one of his colleagues referred to the patient as a knucklehead and they asked Tim to see the patient to try to suss out what was going on. And Tim, he used one of our tools. He talked to the person and it turns out he was a seasonal construction worker and it was summer and he was a single dad where the mother of his children wasn't involved in their care at all. And the only way he had to make money during the year was the work he did during the summer because he couldn't work in the winter. So for very primal reasons, he needed to keep working and couldn't take time to take chemotherapy. So they were able to negotiate a path forward that didn't compromise his health, but also didn't compromise his ability to make a living to support his family. But again, like you say, it's that people bring to these interactions stories that we can't even imagine that interfere with our recommendations for how they get cared for.

Beatrice Preti: That's a beautiful example of something that I really do try to impress on my learners and my team in general. When someone comes to you and if a recommendation is made or even if they are skeptical about a certain treatment pathway, there is always a 'why'. One of the challenges and one of the things that comes with experience is trying to uncover or unveil what that 'why' is because unless you address it and address it head on, it's going to be very difficult to work with it, to work with the patient.

So as you said, it's common people have family obligations, job obligations. Oftentimes as well, they have personal experience with certain treatments or certain conditions that they're worried about. Perhaps they had a loved one die on chemotherapy and they're worried about toxicities of chemo. And sometimes you can talk through those things. That needs to be considered, right? When we talk about shared decision-making, you, the patient, and it might be an experience that the patient has had as well that are all in the room that need to be taken into account.

Mikkael Sekeres: You invoke the phrase "shared decision-making," which of course, you talk about in your essay. Can you define that for our listeners? What is shared decision-making?

Beatrice Preti: Oh, goodness. There are different definitions of this and I am just cringing now because I know that my old teachers will not be happy regardless of what definition I choose. But for me, shared decision-making means that the decision of what to do next, treatment along the cancer journey, etc., is not decided by only one person. So it is not paternalism where I as the physician am making the decision. However, it's not the patient unilaterally making their own decision as well. It's a conversation that has to happen. And oftentimes when I'm counseling patients, I will write down what I see as potential treatment options for this patient and we will go through them one by one with pros and cons. This is usually after an initial bit where I get to know the patient, I ask them what's important to them, who's important in their life, what kind of things do they enjoy doing, and trying to weave that into the counseling and the discussion of the pros and cons. Ultimately, the patient does make the choice, but it's only after this kind of informed consent or this informative process, I guess, so to speak. And for me, that is shared decision-making where it's a conversation that results in the patient making a decision at the end.

Mikkael Sekeres: You know, it's so funny you use the word 'conversation'. I was going to say that shared decision-making implies a conversation, which is one of the reasons I love it. It's not a monologue. It's not just us listening. It's a back and forth until you know, we figure each other out.

Beatrice Preti: Yes.

Mikkael Sekeres: I wonder if I could ask you one more question. In your essay, you ask the question, "Do we struggle with moral distress when a patient makes a choice that we disagree with based on values that we ourselves do not hold?" Do you think you can answer your own question?

Beatrice Preti: So this is getting to my academic work, and my PhD work that we spoke a little bit about in the beginning. I think it's something that we need to be mindful of. Certainly in my training, certainly when I was less experienced, there would be a lot of moral distress because we are not all clones of each other. We are people, but we have our own beliefs, we have our own backgrounds, we have our own experiences. There are times when people, and not just in medicine, but certainly in medicine, certainly patients make decisions that I don't quite understand because they are so different from what I would make or what I would choose for myself or for a family member.

On the flip side, I think I've gotten myself, and I've had enough experience at this point in my career, to be able to separate that and say, you know, "But this is someone who has clearly thought things through and based on their own world view, their own perspectives, their own life experiences, this is the choice that's best for them." And that's certainly something that I can support and I can work with a patient on. But it takes time, right? And it takes very deliberate thought, a lot of mindfulness, a lot of practice to be able to get to that point.

Mikkael Sekeres: Well, I think that's a beautiful point to leave off with here.

We've been talking to Beatrice Preti, who is an assistant professor at Emory University and an adjunct professor at Western University, and a PhD candidate with Maastricht University to discuss her JCO Oncology Practice article, "No Versus Know: Patient Empowerment Through Shared Decision-Making." Beatrice, thank you so much for joining me today.

Beatrice Preti: Absolutely.

Mikkael Sekeres: If you've enjoyed this episode, consider sharing it with a friend or a colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you're looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen, and explore more from ASCO at asco.org/podcasts. Until next time, this has been Mikkael Sekeres for JCO Cancer Stories: The Art of Oncology.

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.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr Beatrice Preti is an Assistant Professor at Emory University

Additional Material:

Knuckleheads, by Dr Timothy Gilligan and accompanied podcast episode.