Recently, a close friend relayed a very difficult life event to me. His 95 year old father lived with him and had no cognitive issues. He had some health concerns— such as diabetes and high blood pressure— but he was semi-independent and very much a part of life.
Over a course of several days the father got very weak and very tired. Their family doctor of many years evaluated him and found internal bleeding, perhaps from an ulcer or some other cause.
The family doctor, a long time friend of the family, told my friend that he believed that the father would not survive surgery and that the best option was hospice care at home; death would occur within a day or two.
Instinctually my friend had concerns, but put his faith in the doctor's determination and agreed to hospice. Nine days later and after some notable pain and discomfort, the father finally died.
My friend believes that regret and looking back are not healthy responses; but there is big piece of him that believes his father would have survived the surgery and that he was therefore complicit in his death. But he says again and again: "but the doctor told us this was the best course to take."
"But the doctor said…."
How often is that the opening salvo of a description of deep remorse?
An error in medical care, not often part of our thinking about error per se, is paternalism. It is an instinctual reflex innate to too many physicians.
At the crossroads of medical care are the doctor's duty to reduce pain and suffering and protect the patient and family juxtaposed with the proportion of responsibility for decision making that rightly belongs to the patient and family.
The crossroads marks dangerous territory for the practicing doctor. It is easy enough to choose the wrong path, as the roads are rarely straight and almost never easy.
These complex doctor/patient interactions at the crossroads were first described by Michael Balint, a Hungarian psychotherapist living in England and working with groups of family doctors in the 1950's and 60's. He met regularly with these doctors in groups as they described the complicated patients in their care. His book, The Doctor, his Patient and the Illness (1957), is as pertinent and current today as when written more than a half century ago.
Two of his concepts are very germane to the topic of Paternalism. He coined the term, "doctor as drug" to highlight the huge impact that the doctor's relationship to the patient has in shaping the course and outcome for many illnesses and disabilities. Doctors must understand that this is the light in which their diagnoses and recommendations are experienced by the patient and families.
A second concept, he calls "the apostolic" function of the doctor, patient relationship. In Balint's words, "It was almost as if every doctor had revealed knowledge of what was right and what wrong for patients to expect and to endure, and further, as if he had a sacred duty to convert to his faith all the ignorant and unbelieving among his patients."
Balint noted that the doctor brings to every encounter his personal values and morality, his own notions of his role and elicits, whether im- or explicit, the kind of family response most compatible with his own views.
For most doctors, these internal views and biases are not transparent or recognized by the doctor. The physician believes he is doing everything that he can in the best interest of the patient. But the physician is rarely a detached scientist relaying evidence-based data and allowing the patient full freedom of choice. Pollsters know that asking or even ordering questions a certain way can lead to biased answers and adjust accordingly; doctors should know this as well, take it into account and adjust accordingly.
In 1847 the AMA ethical code stated "patient obedience to their physician should be prompt and complete." The same code in 1990 states, "the patient has the right to make decisions about his or her own health and may accept or refuse recommendations by the physician."
Pelligrino and Thomasma argue for "true beneficence," in which the physician has the responsibility to help the patient make decisions in accord with the patient’s own perspective and beliefs.
The role of the doctor is replete with paradox and multiple approaches. The focus in this essay addresses paternalism as one highly visible and often negative consequence of Balint's "apostolic function."
Physicians enter every encounter with their own preconceived notions of illness and suffering, their own values about their role and the role of the patient, their own emotional response to different types of patients. That these large issues are usually hidden and unrecognized is problematic. That they are also rarely addressed in discussion and instruction about the doctor-patient relationship is a lost opportunity to explore in the student and doctor-in-training the force of such beliefs in their role of doctoring.
My friend, in the midst of an emotional crisis about his father, deserved better counsel. He deserved that his family doctor take the time to explore the impact of his idea to move to hospice and to allow for other options to be fully considered. In short, he should have given the family enough information to weigh— without his godlike thumb on the scale.
By not doing so, he produced his own harm and suffering and may have ended a life much sooner than would have otherwise occurred. So many decisions take place in the secrecy of the doctor's office or the hospital room. These need to be safe places; too often they are not.
Paternalism is a patient safety issue. The apostolic aspect of physician interactions with patients cannot be covered in a lecture or even small group discussions. It demands that the doctor in training be in an environment that allows such discovery to take place. Balint groups are part of many family medicine training programs and provide the opportunity for students and doctors to explore their own personality and expectations within a group of peers.
These groups, Balint groups, should be part of the training at every medical school.
Steven Kairys, M.D., MPH, is Chairman of Pediatrics at the K. Hovnanian Children's Hospital at Hackensack Meridian Health, Jersey Shore University Medical Center and Founding Chair of the Department of Pediatrics at the Hackensack Meridian School of Medicine at Seton Hall University.
Categories: Health and Medicine