|01-11-2013 - Traces, n. 10
The utmost care
On its five-year anniversary, Traces revisits the workings of the annual MedConference to explore its origins and goals, and the people behind it–revealing that medical treatment which participates in the patient’s desire for happiness “works.”
by Giacomo Maniscalco
Who are these incredible people who give up a weekend of their time, with no compensation, to present their stories and converse with other health care professionals working toward a more human approach to care giving? And why do they do it? In trying to find an answer to this question, you can read the extended bios of the speakers for the 2013 MedConference on the website. There, for example, you learn that Dr. Lodovico Balducci edited five textbooks on geriatric oncology and two books on geriatric hematology, and was 2013 winner of the prestigious ACCC award for Outstanding Achievement in Clinical Research. And there are many more accolades described in the bios of the invited speakers, past and present.
If it’s not a life characterized by professional medical achievement per se that impresses you, read about how Alpha Cattaneo and her wonderful family, through the running of Casa Monte Cassino, are devoting their lives to care for children from all over the world who come to Boston for the treatment of cancer, blindness, burns, and various other health issues.
But actually being among these people brings home the impact of a human embrace not possible when you read a website. And this, in fact, is the generation point of this event and the mode of working espoused by all present: eye-to-eye human contact; being truly in touch with others–colleagues and patients alike. The above-noted professionals and many others spent the weekend of October 18th in Florham Park, NJ, at the 5th annual MedConference, to discuss the overarching topic of patient care, taking their cue from the title of the conference: “Following the Patient: The Key to Medical Care.”
The straightforwardness of these talks proved to be enlightening; in fact, it was truly striking. When asked to write about the MedConference in terms that “lay people” can understand, I thought I was facing a monumental task. Yet, the main thought trumping every occasional technical term used in any given talk was that life is a promise of happiness, and this and only this approach to a patient is the true starting point for health care professionals. It became quickly apparent to me that we should all go to the MedConference, or we should, at the very least, want our doctors to attend.
The origins. Dr. Elvira Parravicini is the original founder of the MedConference, although she’ll scold anyone who calls her a “founder,” saying, “In reality, we didn’t found anything; it arose from reality.” And within this reality, Dr. Parravicini is hardly exempt from the impressive list of important medical personalities present every year. A neonatologist at Columbia University in New York, Elvira established an innovative medical and nursing treatment for terminal newborns called Comfort Care (see Traces, Vol. 14, No. 6 [June], 2012, p. 39).
In the face of her humility, I press for reasons: “Doctors seem to naturally take on a sort of ‘super-hero status,’ and people believe, consciously or subconsciously, that once you’re a doctor, you’ve made it in life. Instead, you seem to be always looking for more answers, for help, for company on the road. What drives this desire?” She responds, “I’ve personally never felt like a ‘super-hero doctor.’ My decision to go into medicine, and into neonatology in particular, was to support the desire for happiness that is part of a newborn baby. If he/she is sick, I can, through my medical treatment, participate in the fulfillment of the promise of freedom and happiness that is generated at the birth of a human being.” It is this same humanity she recognizes–and practices–that gave rise to the MedConference. In 2001, when Elvira became an attending physician at Columbia, after her residency and fellowship, she felt alone: “I was looking for people with a vision of medicine similar to mine, so I kept looking and looking...” Then, she happened upon an article, one among many stacked up on her desk, by Dr. Daniel Sulmasy, clinician and bioethicist. In it, Sulmasy spoke about how it is impossible to speak the word “hope” to a terminal patient if not in conjunction with the name “Jesus.” With the sort of openness and simplicity that characterizes Elvira and would later come to define the MedConference as a whole, she wrote to Dr. Sulmasy, who at the time was working at St. Vincent’s Hospital in New York, to arrange a meeting with him. Joined by Federica, Veronica, and Monica, Elvira’s “crew” of young pre-med students who in her saw a model to emulate in their future careers in medicine, they sat down with Dr. Sulmasy. “At the end of that three-hour meeting, he said that things could not just end there, that this was the beginning of something new,” said Elvira. The two doctors began to organize monthly dinners to which they invited colleagues, students, and just about anyone interested in “person-oriented medical care.” These dinners continued from 2002 to 2006, evenings where they would discuss challenging medical topics and read interesting articles together, giving birth to many new friendships.
After a few years, they decided to take another step, the idea being to become more public, in order to share this vision with more professionals. Elvira described the proposal: “In medical care, we deal with persons, with human beings, so we decided to organize a course of seven lessons about the ultimate nature of the person, defined as the ‘religious sense.’ Our working hypothesis was that, by learning better who we are and who our patients are, we could provide better medical care.” This lesson series focused on the deepest aspect of the human being, the heart, the religious sense of man, as the starting point for the relationship between doctors and patients, “which is the medical act,” said Elvira. Classes were held at Columbia University and drew a crowd of about 50 interested health care professionals. The following year, they proposed a similar course at St. Vincent’s Hospital, working closely with Dr. Sulmasy. What resulted was an organic growth and a network of professionals and students spread all over the U.S. and Canada, among whom it was difficult to maintain steady contact. So the MedConference was proposed, offering the possibility to spend a weekend, at least once a year, to share questions and challenges, and, moreover, beautiful experiences in work.
But how does one face such an undertaking as ambitious as putting the MedConference together? Elvira explains: “During the year, I look around, keeping my eyes and ears open. The speakers I invite are people that have struck me for their humanity in accompanying their patients. I also look for those who, through an affectionate gaze on their patients, have invented new techniques or cures. I sometimes meet these people in my hospital; one I read about in a New York Times article; one I heard speak at a conference; another was introduced to me by a friend... and so it goes.”
Elvira is naturally not alone in all this. With the help of a nine-member planning committee, the MedConference has grown over the past five years, with the most concrete result being the founding of The American Association of Medicine and the Person (AAMP), a New York (501)(c)(3) not-for-profit public benefit corporation whose main goal is the establishment of person-oriented medical care. Year by year, the speakers and guests find that this idea of patient care is a resounding one and has concrete results in the real medical world.
Facing the person. Dr. Federica Fromm, current board member and one of the three pre-med students who started this adventure with Elvira in 2001, expressed her fascination with the work of the AAMP. Dr. Fromm was moderator of Saturday’s student session, “Teaching Ethics in Perinatal Medicine Residency.” This was a presentation of Dr. Emanuela Ferretti and Dr. Thierry Daboval, presenting their work with their innovative Neonatal Ethics Teaching Program and parent-physician communication skills for NICU fellows, essentially a new course designed and taught by these two doctors to help young residents learn to face the crucial aspect of dealing with patients’ families in a way that encapsulates the human desire for the utmost care for the patient that is so integral to the meaning of the MedConference. Dr. Fromm’s closing remarks spoke of her gratitude for being a part of the association which has shaped her greatly in her medical career. She gave an example of facing a family of a dying patient without fear or avoidance, attributing this to her time spent with the doctors involved in the MedConference.
The AAMP represents a dramatic change in approach that encourages facing not just the illness but first the person and all of his or her aspects (personality, interests, desires, family, friends...)–a truly novel outlook in the realm of medicine that makes a world of difference in care and cure. As Dr. Fromm asserts, “It works, because it is human.”
(For more about the MedConference, see: www.medicalconference.us; for more on the AAMP, see: www.theAAMP.org.)