Patients as Researchers

Introduction

Since the introduction of the scientific method into medical research in the 19th century, clinical methods, such as the randomized double-blind controlled clinical trial, have been used. And they rigorously exclude “the personal.” Yet, palliative medicine aims to treat “the whole person” in all the uniqueness of the individual. Participant research has been proposed as a methodological advancement. This roundtable explores the rationale for this new methodology.

DR. VON GUNTEN: The impetus for this roundtable is the publication of an article using participant research as a new methodological development in the science of palliative medicine. ¹ What is participant research?

DR. EMANUEL: I think we can define that as the active participation of the people who are receiving the care to understand what is happening and what works and what does not work. What is uniquely brought by that is the subjective experience. Participant research prioritizes that. That is what we want to know. That is what we want to understand. That is what we want to support.

DR. VON GUNTEN: I find this a paradox. Contemporary research methodology is about getting the personal out of research, the randomized control clinical trial being the paradigm. How do we make sense of this area of inquiry to discover new knowledge?

DR. EMANUEL: I think there is a big distinction between the personal and the generalizable. We are talking about personal experience, which is always unique necessarily, and we would never want that to be any other way but unique. But in the human experience there are common elements as well, and that is where we can get to the generalizable because the common elements are what we want our providers to be able to use to then engage the unique. The research question is how to get what is generalizable in the subjective experience.

DR. JACKSON: Our research team is working on prognostic awareness that is part of the concept of existential maturity described in the article. In developing measures to be able to understand the patients we are seeing in our clinics and as part of our studies, we observe individuals swing between times of deeper awareness and times when there is less awareness. We observe that patients will sometimes not want to endorse a deeper awareness about what is happening in their life or their illness trajectory because it is too painful at that exact moment. Therefore, I think it is critically important to figure out how to bring in the participant voice to help us understand this. We must gain a deeper sense of this so we can generalize our understanding at the population level and at an individual level. I find this fascinating. It is important for us to figure out how we best investigate these concepts that can feel diffuse and somewhat mushy, yet are incredibly real, but difficult for patients to articulate in our standard research methods.

DR. VON GUNTEN: Are you saying our standard research methods do not measure up to the clinical need?

DR. JACKSON: Yes. I will give an example. In many of our studies, we try to measure patient's coping strategies—their understanding and awareness of their illness and their illness trajectory. One of our researchers experienced a very open dialogue with a patient about what would happen, how the patient would plan the funeral—serious terminal care planning and then looked at the patient's assessment of her prognosis on one of our measures. The patient indicated she thought she would be cured. This is fascinating. Why did the patient's report not match the dialogue in the examination room?

Clearly, our current measures are too crude and not sensitive to this oscillation and this developmental process. At the end of the day I want to be able to give that patient and family what they need from our medical team. But our research methods to date don't help us understand these nuances.

DR. EMANUEL: Yes, it is important to both think of this as a developmental process and the slip between the conscious and the unconscious, as Vicki said, the aware and the less aware.

I think the idea of having a measure, even a subjective measure, along the lines of quality of life or subjective experience that is linear in the way that we have been doing is “out the window.” I think that is the importance of going back to individual cases the way the psychoanalytic literature does, but now with a big difference, which is including the people who are in it. That is a significant methodological step forward.

DR. VON GUNTEN: If I understand you correctly, this represents medical research heresy; the patient participates in the research as a cocreator.

MR. HATLIE: I am not a researcher, but I do interface with the research world in the work that I do. And I am encouraged by the changes that I am seeing about this issue in the broader research community. The Patient-Centered Outcomes Research Institute has taken this on full bore. Why not include the users of care, the people who have experienced care at every level of your research design and agenda? They have hired staff who have had experience as patients or family caregivers of patients, and they have driven that through their research model.

From my perspective as a lawyer and a patient advocate, this methodology emphasizes the importance of the story. If that is a fundamental element of this new research methodology, there are a wealth of people who would be eager to be a part of research. We just have to figure out a way to open those research pathways.

MS. SONNENFELD: I am glad that we noticed the initial term participation and shifted to the concept of cocreation.

I'd like to share a very personal story about my husband, Alan, and what happened the first time we met the physician from a new home hospice provider. Alan was 38 years old and had been diagnosed with pancreatic cancer six months prior.

The physician later recounted:

This physician quickly became someone we trusted.

There were times where we were being interacted with from the best knowledge of the field. And then there were times when somebody could draw from deep knowledge of the field while interacting with us as people. The latter is transformative.

Also, the idea of oscillation really resonates with me. A research-based protocol that produces a rubric that somebody follows because it is best practice is important as a start, but how can that rubric include the oscillation and include and honor different ways and modes of being? If a story is told deeply, if a person is seen deeply, then a single story is always individualized as well as generalizable. There is so much hope in that.

DR. JACKSON: I think this is about helping patients and family live in uncertainty, and we live in uncertainty, and how we talk about uncertainty, and then we provide a clinical encounter that holds patients safely. I remember taking care of a patient with great health literacy as well as deep existential maturity. Yet, this person would say when his oncologist called, for a split second, he hoped that he was calling with a cure. We must leave space for that because that is an expected part of the patient experience.

When we think about existential maturity, we need to think about existential maturity in clinicians, as well as patients and families. Clinicians need to take all of that clinically relevant information, digest it, and then present it in a way that is meeting the patient and the family where they are at that moment of that day, which may be very different from the state in which you will meet them the next day.

DR. VON GUNTEN: I am thinking back to Osler and the 1800s where all of medicine was storytelling. He and others pointed to the scientific method as a way toward clear shining scientific truth. Medicine in the US and in Germany, and then around the world changed because of that. And yet the thrust of what you are saying is, “That may well be, but it is incomplete.” Is that what you are saying?

DR. JACKSON: Correct. Our research must be informed by the story. We have to work to be able to translate this and make this a reliable part of medical systems. Not being informed by the story means to add another piece of suffering to the patient experience. I think we must start with the story, but we do have to push ourselves to find a way, although it may be incomplete, to operationalize it if we are hoping to improve clinical care for all patients—not just those seen by specialist palliative care.

DR. EMANUEL: The narrative is tremendously important, but Sarah said something which I just loved: that [for her and Alan] interacting with people with knowledge of the field who then related to them as individuals was what was transformative. We are talking about the experience in the moment, something you called the holding environment. That is psychodynamic work. The experience is different from the narrative. Narratives are made up of experiences. Discovering, then reliably creating, a healthcare system where people can find and hold and allow the participants—the person with cancer, the people around the person with cancer—to make use of those experiential moments, that is something which psychoanalysis rather uniquely, even within the field of psychotherapy, has built systems to prioritize.

It is very interesting, and perhaps concerning, that psychoanalytic care systems are not doing particularly well now. They do not have a financial model that works. They do not have a social structure that is mainstream. This needs to change, because both the science and the clinical systems need to reliably produce what Vicki is talking about.

DR. VON GUNTEN: The foundation of our field was the research that Saunders did. She advocated from personal observations that there were physical, emotional, practical, and spiritual dimensions for patients and families. I am remembering your empirical research, Linda, that proved her hypothesis. What you are describing is a research methodology that reaches the emotional and spiritual dimensions—the “meaning of the illness experience” for patients and families. Is that fair?

DR. EMANUEL: I think that is very fair. And I think that we are oddly, paradoxically, shamefully right at the beginning of understanding what that methodology is. The last person who made a claim to scientific rigor in this area was Freud, and then the people who followed in his tradition. Talk about heresy (many in his time treated his work as revolutionary; others as heresy). But we are still at the very beginning of this. Even in psychoanalytic circles, we have this controversy going on. There are some people who say this psychoanalytic work is hermeneutics, and hermeneutic matters can never be studied as a science. And then other people say, “Stuff and nonsense.” Just because it is subjective does not mean it cannot be studied rigorously. We just have to talk to the people about the subjective experience.

MR. HATLIE: The thing that gives me hope is going to a PCORI meeting. It was mind-blowing to see the researchers in the room just not even knowing how to approach the patients who were invited to have a voice in the research design. It was clear the researchers only thought of peers as those who help them get published, who help them get research dollars, who help them evaluate and improve as scientists. The gap between that and the people who have the story was just remarkable.

DR. EMANUEL: I spent some of the last few years trying to help chaplains advance the possibility of doing rigorous research about caring for the human spirit. I think there is a way to be rigorous and scholarly about epistemology in this space of the human spirit. It was fascinating. The predominant experience working with the chaplains was, “Oh my, this is at A-B-C. We are right at the beginning.” I do not think researchers have the refined options for methodology that are uniquely tailored for this area yet.

DR. VON GUNTEN: Well, this gap that you describe, Sarah, as you think about the whole illness experience of Alan, do you perceive this gap in more than just the end-of-life care part of the trajectory?

MS. SONNENFELD: Yes. Now, Alan was diagnosed in June and passed away in February. He had been a marathon runner who would not take even an ibuprofen. So I actually cannot speak to so much of an illness experience outside of what felt like swingings between crisis and calm.

Emotionally, it was very painful when people did not “get it” or “get where we were.” It could feel existentially infuriating. For example, the day after diagnosis, Alan had a tissue sample taken at a small, nonresearch hospital in Kansas City where we were living. The referral center where we went for treatment wanted the sample two weeks later. The hospital said the sample was sent. The referral center said it wasn't received. I literally spent two-and-a-half hours on the phone figuring out where the sample was and helping them get it in a FedEx envelope because, it turned out the sample had never been sent.

Or as another example: we had an intake appointment with a nurse from a home hospice agency. The first thing she did was open a 45-page “caregiver manual” and started taking me through it page by page. It was enormously upsetting. She kept going through the signs of decline. We had just gone for a beautiful walk in the snow and had gotten a dog the day before. I was thinking: “…yeah, sure, he ceased chemotherapy…but why are you insisting on having this conversation with me now? Now is not the right time…”

It was acute and immediately noticeable whenever things did not match, either in competence or care.

DR. EMANUEL: I want to highlight what you said, Sarah—the nubbin, the phrase you used—is “get it.” I think that there are two elements to what you have defined. One is the provider understanding the subjective experience of you and Alan, whether it is the fact that you were just taking a walk and getting a dog, and that was not the time to talk about mottled skin or whatever. The other is how to express it. What is the expression of that experience that worked for the person? The expression of the experience is what is going to be an important part of the holding environment with the oscillation, whether it is the word choices or the nonverbal expression, like the eye contact. Those are the elements, I think, that need to be part of our research and part of our systems design if we are to “get it.”

DR. JACKSON: This clearly needs to inform education. Our providers must learn this idea of a dual framework that is not all one or the other that we are trying to hold both things simultaneously. For the patient and family, sometimes those concepts of living well and dying are very, very distant from one another. And other times they are closer. Just like assessing pain management, we must assess in that moment because that will help guide us. I do not know how many times I say to the oncologists, “Do not be surprised if the patient asks you that exact question again because they were ambivalent about the information, did not really want the information, and they did not integrate it.” You encounter this in every phase of serious illness. The research literature says that patients want this information. Yet, as a clinician in the room, you know it in your bones that the clear majority of times patients are quite ambivalent. It is a very complex dance, an oscillation of a pendulum.

DR. VON GUNTEN: I am hearing that we are at the beginning of important new work that is critical to really good patient care as perceived by the people receiving their care, patients and their families.

MR. HATLIE: I do not think we know from the literature that every patient is ambivalent. I think patients and their families have to be approached with an open mind about how ready they are for those kinds of conversations. That is where I fired providers, honestly, who were not listening to where my family was. There were just certain people we did not invite our close circle. For those that we did, there was a sacred space. I do not know if they created it or we created it or if it was cocreated. But it was there, and we learned how to find that very, very fast by the second person in my family who was sick.

DR. JACKSON: I think the real issue is when we are in the room with patients, depending on the day, patients want different things. We need the research to help providers build a language around these concepts, build educational programming to help clinicians learn how to assess what would be most useful to a patient in that moment, and to prevent the conversation being guided by the provider's own anxiety or need to “tell.” It is not about withholding information, and it is not about overwhelming. It is about being able to be nimble in the moment with what patients and families need to be able to live well.

DR. EMANUEL: I think the question is, how do we take this whole approach to understanding what matters to people in the care experience forward? Who can we work with in our research? Not everybody can do what Sarah did. Sarah did something extraordinary, and so did Alan. How do we work with the people who can help us understand? What does it mean to cocreate?

In addition, what is the model and how do we create hypotheses? In the psychodynamic field there are models of the mind, chiefly brought forward by John Gedo. But in the psychoanalytic literature there are only a handful of cases where people talked about their own experience as patients. How do we disprove and modify our hypotheses to move the science of subjective experience forward?

DR. VON GUNTEN: Sarah, I want to give you the last word.

MS. SONNENFELD: Thank you. I have to say a light bulb went on for me during the course of this panel when I heard us using the word oscillation with the image of a pendulum and what it is that clinicians need to know. I am a consultant in my professional work, and I immediately thought: “Ah! We can scale this. Do the right research. Create a simple model. Include an element around oscillation for providers.” People do want information. But they want information in a way that they can process because it has all sorts of implications on their lives. More and better tools are needed, and they need to be developed with care, founded on rigorous research. I hope we can continue to figure out ways of bringing in the experience of patients and their stories. This conversation leaves me with a sense of excitement, like it may actually be doable.

A final thought that is on more of a moral or spiritual level. In Judaism, before a person dies, you say the Shema. It is the duty of the people around them to enable that person to say the Shema should they want to. On the one hand, you must bring them the information. But on the other hand, if the prospect of saying the Shema would quash their hope for living, would dampen their ability to thrive even for a second, then you are prohibited from broaching the subject. So what do you do? This seems the very tension we have been speaking of today. At once there is this providing of very real information and having very critical conversations with decisions able to be made with the full force of the duty of the care and there's also leaving space for a who-knows-what-is-going-to-happen hopefulness. Together, there is realness and there is thriving. Would we not all want that?

To all of you for the work that you have done over the course of your lives in this space: thank you.