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An Existential Oncologist

From the Beth Israel Deaconess Medical Center, Brookline, MA.

Address reprint requests to Lidia Schapira, MD, Beth Israel Deaconess Medical Center, 33 Pond Ave, Suite B109, Brookline, MA 02445; email: lschapir{at}caregroup.harvard.edu.

IN THE days and weeks since September 11th, our society has become more open to emotion and reflection. Americans seem more "real" to me and more willing to examine long-held beliefs and question commonly held assumptions. I would like to take advantage of this opportunity and share my musings on the stresses and rewards of life as an oncologist.

About 15 years ago I heard a speaker at the American Society of Clinical Oncology say he felt his training had not adequately prepared him for the world of oncology practice. He was referring to the fact that the explosion of molecular biology and scientific knowledge had changed the landscape of therapeutic possibilities, stepping up the pressure to keep up to date. I have thought about that speech for many years and about the goals of our training. In my case, I found that training which focused on clinical competence did not prepare me well for real life because it failed to address the human and emotional aspect of caring for people with cancer. I also found myself unprepared to deal with the tremendous pressures and constraints imposed on us every single day by bureaucracies and agencies with power, but with agendas very different from our own.

Some of us were attracted to the field by the scientific challenge of cancer medicine. There was, and still is, a sense of optimism about the future and about our abilities to cure many patients and to transform cancer into a manageable chronic illness for many more. Others may have chosen the profession for the opportunity it affords us to care for people during times of heightened vulnerability, when doctoring is often at its finest. These themes of curing, treating, and accompanying form the basis of our shared professional heritage. A friend who is a medical anthropologist likened us to a tribe—linked not by family ties but by a shared philosophy and values.

Postgraduate medical training equipped us with the necessary knowledge and vocabulary to treat disease. An important initiation rite in our culture is the formal embracing of evidence-based medicine as the most important guiding principle in decision making. This is extremely useful to protect patients from the excesses of "anecdotal" medicine. However, we all recognize that knowing the most effective drug regimen for leukemia or breast cancer is not enough to meet the emotional needs of the patient and assist him or her in adapting to illness and choosing treatment. I think a more useful goal ought to be the integration of the "disease model," which we all recognize begins with a medical diagnosis and pathophysiologic explanation, with the "illness model," which begins with the patient’s world view and experience of illness. Training should be flexible and creative enough to allow us to weave these two perspectives into a unique narrative that completely captures the reality of each clinical encounter.

As we recognize the importance of listening to patients’ stories, we need to acknowledge the inescapable fact that our attitudes, histories, and beliefs have an impact on our professional recommendations. Our tribe is known for activism. We have been criticized for becoming so wrapped up in rescue fantasies that we don’t know when it is time to stop excessively toxic treatments. Trained to fix and prescribe, it is not easy to sit down to talk and listen; and if we do, who will pay for our time?

American oncologists continue to take part in the raging national debate on health care and reimbursement. Our colleagues in primary care have certainly felt the impact of lower fees and increased regulations for years, and it may be wise for us to prepare ourselves for similar situations in our practices. There remains little doubt that doctors are suffering from the burdens of too much paperwork, institutional overinterpretation of Centers for Medicare and Medicaid Services (Health Care Financing Administration) guidelines, and the fear of litigation. In my opinion, managed care stands alone as the greatest offender and threat to our culture. Insurance companies have so transformed our landscape and colonized our territory that we find ourselves using business terms to describe our work. By regulating fees at the lowest possible level, they have brought upon us an expected demand for greater volume. The obvious consequence is fuller schedules. The hidden cost is the effect it has had on physician and patient satisfaction. Everybody feels rushed and frustrated, tension mounts, and new conflicts are created. Our nursing colleagues have complained bitterly about these issues for years because it often falls to them to spend hours on the phone obtaining approvals for treatments. Together with less time for patient education and follow-up, this has changed, and threatens to fracture, much of what we value about our profession.

Adding to the stress of medical practice is the fear of litigation. Fear of malpractice suits has created a medical bureaucracy that thrives on forms and waivers, written in a language nobody understands that theoretically protects us from our patients. Informed consent forms are both wordy and obtuse and rarely are useful in aiding patients in making important medical decisions. Ironically, as the medical establishment tries to protect itself from litigation, we widen the gap between ourselves and our patients.

We are also faced with the unwelcome tension that emanates from accusatory legal language used to regulate our practices and workplaces. Federal rules that insert both civil and criminal penalties for failure to comply have resulted in doctors being treated as "potential" criminals. Regardless of practice site, we all share the burden of documentation, which exists only to justify our billing practices and has added a considerable number of hours to our schedules.

Lumped together, these practices distract us from our primary purpose of caring for patients and participating in research and education activities. They also have an impact on how we view ourselves as professionals and threaten to shift our loyalties away from direct patient care. Furthermore, we have collectively little or no training in negotiation, business, and law—areas that are becoming increasingly relevant to our survival as physicians. Is it time to redesign the curriculum? The stresses of practice and the systems within which we work often make it difficult for us to connect with our own sense of vocation. Yet that is exactly what we need to accomplish in order to shape policies, programs, and curricula.

A powerful memoir of illness, written by Oliver Sacks,¹ has influenced my clinical approach. A brilliant and articulate neurologist, Sacks found himself on the other side of the bed when, as a result of a hiking accident, he tore his quadriceps tendon. Although surgical repair was successful, he was unable to recognize the injured leg as his own. Frustrated by his useless leg, Sacks tried to engage his medical team in a conversation. His doctors dismissed his account, his ideas, and his description of symptoms. His struggle led him to question prevailing neurologic theories of denervation. Through his experience he realized there needed to be a different way of "being" with patients. He found solace in philosophy and defined his new credo as "existential neurology": "a neurology of the self, in dissolution and creation."

In that vein, I consider myself an "existential oncologist." I find each encounter with a patient shapes not just the patient’s reality but also mine. To provide a therapeutic presence, I need to give not just a technical opinion but also give of myself. I shape and am shaped by events, and this constant molding defines me not just as a doctor but also as a person. The self is constantly in dissolution and creation; my identity is defined by my actions and choices. I find this model authentic in capturing the reality of the doctor–patient relationship because it views the doctor as an active participant. It acknowledges the vitality of each relationship and with it the power of human connection. Almost two decades in the "trenches" has taught me that beyond empathy lies engagement, that the road to self-awareness is bumpy and admits no return traffic, and that our patients are our best teachers.

Enumerating the challenges and difficulties of practice serves only to help frame my personal narrative. Each one of us has a distinct perspective informed by beliefs, interests, and experience. I propose that we expand the educational model to recognize the need for training in areas that better prepare us to meet the challenges of practice, that we talk more openly about the limitations of treatment, and that we encourage our fellows and colleagues to share thoughts and not just facts.

	REFERENCE

TOP REFERENCE

 
1. Sacks O: A Leg to Stand On. New York, NY, Touchstone, Simon and Schuster, 1984

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This Article Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Rights & Permissions Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Schapira, L. Search for Related Content PubMed PubMed Citation Articles by Schapira, L. Social Bookmarking                            What's this?