Q&A: Federica Raia and life with a new heart
Forty years ago, it was unthinkable to live a life with an artificial heart, with someone else’s transplanted heart or with an assist-heart pump. Today, the technological advances of modern medicine make this possible. But how does that change a human being’s life? And how can doctors help their patients adapt to living with a machine implanted in their bodies? That’s the territory that Federica Raia, assistant professor and researcher in the UCLA Graduate School of Education and Information Studies and the David Geffen School of Medicine, has explored for the last five years in collaboration with cardiologist Dr. Mario Deng, director of the UCLA Integrated Advanced Heart Failure-Mechanical Support-Heart Transplant Program. Together, they’ve written a book, “Relational Medicine: Personalizing Modern Healthcare — The Practice of High-Tech Medicine as a RelationalAct” (Imperial College Press & World Scientific Publishing Co., 2014). Raia spoke recently with Joanie Harmon, editor of Ampersand, the online magazine of the graduate school.
What does a patient with advanced heart failure experience when they get an artificial heart or a heart transplant?
When you have your heart taken out and replaced with somebody else’s heart, or with a mechanical one, your life, as you knew it, is gone. To accept that you have a replaced organ, you are forced to think of yourself as made of replaceable parts; but there is no re-assembly of the person from parts, machines and organs. This is not a motor exchange process as is done with our cars.
For someone waking up after surgery, attached to the machine that is now part of their body, the act of getting out of bed, standing, walking or sitting in a chair is completely new. This equipment has no connection to anything they know and it breaks their familiarity within their world.
Patients refer to the mechanical heart pump as “it.” They are afraid of it. At home, you have to learn to live with a machine that is partly inside, partly outside of you. You must change its battery every two to eight hours. At night, you plug yourself in, like a TV set. Who are you then?
How can doctors help a patient adapt to life with a mechanical circulatory support device, an artificial heart or a heart transplant?
In high-tech modern medical encounters, doctors zoom in from the person-level to the organ, tissue, cell and molecular gene levels, and then zoom out again, back to the whole person level. One uninterrupted movement is necessary for making diagnostic and therapeutic recommendations for this particular person. The starting point and returning point is this patient in his/her life. Only within this framework does evidence-based medicine make sense.
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, for the patient and the health care professionals as well. It doesn’t divide the person from the body or the experience of illness from that of the disease.
In order to help a patient through the complex journey of integrating personhood, body, science and technology, doctors should relate to the patients as persons, growing particularly attuned to the need of this integration because they understand that a patient has to own the situation or does not survive. It is this patient’s heart; it is this patient’s life.
How do doctors and patients achieve this?
With a breakdown of familiarity, seemingly ordinary things become important in a conversation between a doctor and a patient. The role of health care professionals is to help this person own his/her life with high-tech. In this process, a transforming identity becomes recognizable to the patient. Together, patient and doctor create a safe space where it is possible for the patient – and their family – to reconstitute the relational web that binds people, physical things, the machines, the body, the illness experience and the disease into a meaningful whole.
While in our contemporary Western culture of replacement and substitutability when we tend to put and analyze things in boxes, our research results about 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. The imperative to care for this patient, who is on a very complex journey of her/his life, replaces the concept of mere compliance, i.e. unilateral patient adherence to a prescribed therapeutic plan.
Physicians are faced with a new way of understanding their profession, where caring takes a central position in the normatives regulating their work. Caring is not just to support a patient in decision-making, but in every moment of the routine medical encounter, helping the patient develop ownership over specific critical health/life decisions as a process, a journey.
Did the patients you studied think that the experience of adapting to a machine was worth it?
If you or I were asked if we would get a heart transplant or get attached to a mechanical pump 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 that your body is made up of substitutable parts can you make choices like this. The decision to live with a device must be considered a process that continues long after the medical option is selected. In Relational Medicine, doctors must be attuned to the person they are caring for. They really, really listen.
It’s hard for everybody. Some patients wanted the machine removed and to just die. Living attached to a machine is terrifying for them. Cared for by family and health care professionals, they take one step, then a second, then make it to the door of the hospital room, in the corridor, and outside in the sun.
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.”
Read the complete Q&A in Ampersand.