Researcher at UCLA Ed and UCLA's David Geffen School of Medicine looks at learning outcomes that can mean the difference between life and death.
In order to write, “Relational Medicine: Personalizing Modern Healthcare – The Practice of High-Tech Medicine as a RelationalAct” (With Dr. Mario Deng. London/Singapore: Imperial College Press & World Scientific Publishing Co., 2014.), Federica Raia had to get to the heart of the matter – literally. The forthcoming book provides a framework for the practice of high-tech modern medicine as it is practiced in advanced heart failure and the relational approach that enables its success.
Forty years ago, it was unthinkable to live a life with an artificial heart, with somebody else’s heart, or with an assist heart pump. The unfathomable experiences of a person in interaction with the scientific and technological advances as experienced in advanced heart failure are novel to patients and their families, and unknown to health care professionals.
For the last five years, Dr. Raia conducted an ethnographic and participatory research study on the practice of high-tech modern medicine in collaboration with the advanced heart failure cardiologist Dr. Mario Deng, director of the UCLA Integrated Advanced Heart Failure-Mechanical Support-Heart Transplant Program. Based on ethnographic work and the analysis of recorded medical encounters following patients with their doctor encounters for two years, the authors provide a comprehensive framework for understanding the practice of high-tech modern medicine. What Dr. Raia discovered in her research revealed that the marvels of technology mandate the practice of Relational Medicine, i.e. the integration of body, science technology and personhood into one singular framework of practice and that this integration can mean the difference between life and death.
Dr. Raia is a complexity scientist and assistant professor in the UCLA Graduate School of Education and Information Studies and the UCLA David Geffen School of Medicine. Her research focuses on complex systems, especially relationships and encounters with multiple perspectives, such as those between patients and health care professionals, as well as students and teachers. Recent publications include the article, “Emergence of a Learning Community: A Transforming Experience at the Boundaries” for Cultural Studies of Science Education, 2013, and the book chapter, “Mechanisms, causality, and explanations in complex geodynamic systems” for “Earth and Mind II: A Synthesis of Research on Thinking and Learning in the Geosciences” (Eds. Kastens, K.A. and Manduca, C.A. Boulder: The Geological Society of America, 2012. Print.) With Dr. Deng, Professor Raia has established the Relational Medicine Foundation, a nonprofit organization that supports collaboration among patients, caregivers, healthcare providers, education researchers and art professionals in modern medicine.
A native of Naples, Italy, Raia earned her Ph.D. in geophysics and volcanology as well as her bachelor’s and master’s degrees in geological sciences at the Università degli Studi di Napoli Federico II (University of Naples Federico II) with five years of graduate study completed at University of California, Santa Barbara. Prior to arriving at UCLA, she established an integrated master and certification program for science teachers at The City College of the City University of New York (CUNY), in collaboration with her colleagues from the School of Science and the Secondary Education Department and science teachers in New York City Instructional Regions of Manhattan and the Bronx.
Ampersand had the opportunity to speak with Dr. Raia on her new book, and learned about the importance of protecting a patient’s personhood while treating critical heart conditions, as well as honoring that same relational foundation between students and teachers in the classroom.
Ampersand: How do you define the term, “complexity scientist”?
Federica Raia: Being acomplexity scientist means that I know that I cannot predict with certainty the behavior of a social or natural system from the knowledge- as complete as it ever can be – of its constituent parts, characteristics and behaviors, because the whole emerging from the interaction of its parts determines what counts as a part and affects their parts’ behavior. This means that there are non-linear relationships at play as the relationships among agents, parts, and whole(s) influence each other. This has profound implications as it is a non-reductionist approach. In medicine, for example, you cannot reduce the explanation of a disease to the gene that produces it, as all the people with that gene would otherwise develop that disease.
&: How does an understanding of complexity and Relational Medicine affect the ability of doctors to help a patient adapt to life with a mechanical circulatory support device, an artificial heart or a heart transplant?
FR: Doctors in medical encounters in high-tech modern medicine zoom in, from the encounter with the patient, down to the organs, the tissues, the molecular and gene level; and then zoom back out from the microscopic world to tissue, organ, phenotype, and to the person level. They do this in one uninterrupted movement for making diagnoses, recommendations of treatment options, and how to live with these kind of options in the here and now, for this person.
The starting point is not the algorithm-based perspective, which abstracts from this patient’s perspective and jumps to a shortcut of a translation of average population-based statistical phenotype level symptoms into a mechanistic explanation. The starting and returning point is the patient, his or her life in her world, taking what this patient says, and his/her experiences as the irreducible starting point.
In high-tech medicine in the context of advanced heart failure practice, this is very important because when you have to have your heart taken out and replaced with somebody else’s heart, or with a mechanical one, or when you have to be attached to a machine that pumps your heart, your life, as you knew it, is gone. There is loss of self, a sense of being lost in a place that is not recognizable, where nothing, not even a chair in which you need to re-learn how to sit, is recognizable as familiar tool in your life. As some patients describe it, you are half-person, half-machine.
For the patients, waking up after a machine implantation, the act of getting out of bed, standing, walking, or sitting in a chair, are all completely new, because they have to do it with this machine attached – it is now part of their body. This equipment has no connection to anything they know and breaks their familiarity with the world as they know it. They are scared of it. That is how they refer to the assisting heart pump – “it.”
At home, you have to learn to live with a machine that is partly inside, partly outside of you and you must change its battery every two to eight hours. At night you plug yourself in, like a TV set. You have to learn to take showers while protecting the machine from water or you die. Who are you then?
As high-tech modern medicine is forging new territories for humans to dwell in, Relational Medicine becomes the way of practicing medicine that maintains the basic human right of personhood, not only for the patients, but – in order to really help their patients- for health care professionals as well. It doesn’t divide the person from the body. It integrates personhood, body, science, and technology. In this framework, doctors interact with patients in a different way. They don’t separate medical talk and [personal] talk. Everything is intertwined because the doctors grow particularly attuned to the need of this integration and understand that a patient has to own the situation – it is their heart, their life. If they do not have a sense of ownership, they do not survive. This is learning, as good as it gets.
You do not just repeat what you have heard or what has been taught to you, you make it your own. And as you own it, it changes, it is yours. That is what I learned in this research and what I now purposively look to support in my teaching. The question now for me is how students will take something and transform it into their own. It is neither easy to do for them nor for me, but what is even more difficult is to recognize it when it happens or while it is happening as it requires to abandon the paradigm of deficit learning – in teaching and learning practice – or, to go back to medicine, the framework of compliance and adherence, and see what owning the experience means for this specific person.
&: How do doctors and patients achieve this?
FR: Seemingly ordinary things are important in a conversation between a doctor and a patient. As I said, a machine substituting as your biological heart or partially substituting as your heart function, has no connection to anything you know or are familiar with. This is a breakdown of familiarity with the world as a patient makes sense of it and of her/ himself in the world.
It is a rather difficult and subtle process of reconstituting the relational web that binds physical things, the machines and persons together into a meaningful whole, and reconstituting the patient’s identity. As the doctors say, it is not just about the heart . In the book, as we analyze the recorded patient-doctor discourse in their consecutive encounters over a period of up to two years, an expert advanced heart failure cardiologist creates a meaningful path together with the patient to operate what we call a transformation. In the medical encounter, transformation manifests, for example, in emergence of the patient-doctor dyad becoming of fundamental importance to both patient and doctor and continually protected by the doctor. Together, patient and doctor create a safe space where in all that has broken down in this specific patient’s life, the role of the health care professional is to help this person start making sense of her/his life, and start coping with things in the world in her/his own way as the world starts becoming familiar again. In this process, a transforming identity becomes recognizable to the patient. It is powerful yet subtle.
&: What are some other adjustments that patients have to make in collaboration with their doctors and caregivers?
FR: Integrating this new way of being is very important in relational medicine. The doctors know things that patients don’t know. The patients know things that the doctors don’t know. In fact, also using the high-technology research products, such as a test based on the sequencing of the Human Genome, requires important changes in a person’s life – a more active, agency-claiming patient involvement, which of course, changes the medical encounter discourse and practice.
In stable heart transplantation patients, this non-invasive monitoring can safely achieve down-dosing of immunosuppressive medication, a very important step for a higher quality of life, in addition to lowering the probability of developing cancer and infection. But high-tech non-invasive monitoring requires active participation of the patient and family caregiver as discussants in the regulation of immunosuppressants. The explicit relationship between three system levels is new: gene, organ, and the person’s level are taken all into consideration at the same time, by both the patient and health care professional.
&: What are the parallels between Relational Medicine and teaching and learning?
FR: Certain things are very similar in the relationship between teachers and students. They appear less dramatic, but the concepts of Relational Medicine are important here too. In these interactions there are asymmetrical and complex dynamics of power and knowledge distribution and claim. Within these complexities, students can develop and take ownership of their own learning.
As I said before, students are often taught in a deficit learning framework that is expressed at least in two forms. One form considers that a person’s capacity to learn is at a lower or normal level, and the second considers what knowledge is needed to learn to reach a certain level of knowledge. But if you understand the existential phenomenology behind Relational Medicine, you understand that it is not about teaching students to go from Point A to Point B, nor to consider a person’s capacity as higher, lower, or at a normal level. When I enter a classroom, I learn how students incorporate what we discuss in class; they develop their own way of understanding it. That shows that they are learning as I do from and with them.
If you look at learning in the context of Relational Medicine, this is exactly what these healthcare professionals do. When they bring medicine to such a personal level, it means that all these things have to make sense for each patient, and that each patient has his or her own way to develop their learning, their own life, their own identity as a person with advanced heart failure.
Relational practices are therefore of fundamental importance, not only for future health care professionals but also to our students in UCLA’s Department of Education. Based on this, I am designing a course based on this research, in which our book will be the required text). This coming fall, I will be teaching with Dr. Deng “Educational Perspectives of Relational Practices in Modern Medicine”, which is very exciting.
&: What are some of the factors that have taken personhood out of medicine?
FR: In our contemporary Western culture of replacement and substitutability, when a part of a car is broken, we throw it away and buy a new part, or a new car altogether.
So, in 1967, when the first heart transplantation was performed, the question arose: “Is the ‘motor exchange’ that is successfully practiced with our cars possible in human beings moving mankind one step closer to immortality?”
This requires an understanding not only of a human asa collection of separate components to be assembled together in a human being, but being is then understood to be constituted by a sum of single experiences and identities. We tend to put and analyze things in boxes, but the experiences in high-tech modern medicine are pointing to a different direction.
The higher the technological advances used in medical practice, the more relevant the value of human relations. Physicians are faced with a new way of understanding their profession where care takes a central position in the normatives regulating their work. This means that a central stance is not just supporting a patient in decision making but support a patient integrating medical science and technological advancements in this person’s life, so as to develop a new sense of self and ownership over specific critical health decisions, and with the specific physiological manifestation and course of action.
&: Did the patients you studied think that the experience of adapting to a machine was worth it?
FR: If you or I were asked if we would get a heart transplant or get attached to a left ventricular assist device right now, most likely, we’d say no. But when one faces that situation in reality, the dimensions are completely different. You are dying.
As we described in the book, only when you can consider your body made of substitutable parts can you make choices like this. But then, your sense of self is lost. And when you wake up from surgery, you’ve done it. A patient has to live with their device, and it will change their life completely. That’s why in order to help them make that decision the decision must be considered a process that continues after the medical option is selected. That is why I think it’s very important what the doctors do. In Relational Medicine, they have to attune to the person they are caring for. They really, really have to listen.
At the beginning, it’s hard for everybody. Some patients wanted to have the machine removed and just die. They always describe the beginning of living with their machine or artificial heart as one of the most horrifying things in their life. But then, slowly, they get attuned to it. It’s a really major life journey.
The way the heart beats is different when you have a transplant or a device. The machine makes noise – click-clack, click-clack. After a while, they get used to it. They know that sound means, “I’m alive.”
Above: Courtesy of Federica Raia