Lately, there have been a bevy of articles steeped in irony, addressing the health hazards of health care to one’s health and well-being. Two articles by Roni Caryn Rabin in the April 29th, 2013 edition of the Washington Post (“Hospitalized Patients Too Often Have No Single Physician in Charge of Their Care;” and “Hospitalized Patients Need an Advocate by their Side to Avoid Medical Errors”) highlighted such concerns. While it is easy to categorize such anecdotal journalistic complaints as, well, journalistic rhetoric, the picture painted deserves attention for what it reveals about how care is perceived by those on the receiving end and the impact it is having on the physician-patient relationship.
The picture? A sick and vulnerable patient; a fragmented,uncoordinated system; dozens of faces flitting in and out of the room; inconsistent information; conflicting management plans; lack of communication; and all of this compounded by failure of the patient to improve, or worse yet, to further deteriorate. No one is seemingly in control; no one seemingly “cares.” It is an apt illustration of the old cliché, “too many cooks spoil the broth.” Even the hospitalist quoted in the article confirmed (confessed?) that he only spends minutes in the (patient’s) room. His job, as he perceives it, is bridging the gap between the plethora of specialists and the patient. But by Rabin’s account, it is largely unsuccessful.
Rabin’s solution to this malady? A patient advocate; a friend or family member who remains at the bedside to ensure proper care and intercept errors, one who comes supplied with note pad, pens, and all relevant health, medical and insurance information, as well as antibacterial wipes to clean the surfaces of the entire room. Anyone with a vested interest in the profession cannot help but be saddened by the elements of truth that reside in this rendition. For what the article illustrates is not just loss of communication, command, and integrity, but loss of care—and with that loss of care, loss of trust, the interpersonal trust that is the foundation of the fiduciary physician-patient relationship.
An article in the April 11, 2013 edition of NEJM by Dr. Arthur Kleinman, provides the conceptual tools needed to diagnose the malady in Rabin’s anecdotes. In the article, Dr. Arthur Kleinman uses the personal experience of being a caregiver for his cognitively impaired wife to narrate the distinction between illness (the experience of the patient) and disease (as diagnosed, treated, and understood by the physician). Indeed, this is the unnamed chasm between provider and patient that has not been bridged in Rabin’s anecdotes, because it has been ignored by means of reductive objectification. The patient’s illness has been reduced to biological disease process that can be objectified and quantified. It is this personal context and experience of the disease process that has been forgotten in our technological pursuit of the objective cure.
Medical care as a moral encounter involves a healing touch (both literal and figurative—we” touch” the lives of others by our care andconcern) and a healing presence . Indeed, much unquantifiable healing occurs in the personal encounter between physician and patient, in the moments of touching, valuing, and being present to the suffering patient. But it is healing that does not fit into the current commodified paradigm of medical “care,” with its “outcomes analysis” and calculations of productivity. There is no place in EHR diagnostic templates for such subjective factors as the personal experience of disease; for challenges of life with the disorder, or for the effect of those challenges on the disease itself.
It has been said that the “eyes are the window to the soul;” but there is little opportunity in the current system to gaze into the life and soul of the ill, for EHR is a jealous lover–the computer screen demanding all of one’s attention, and preventing the eye contact necessary for establishing personal relationship.
We are complex, integrated, bio-psycho-social beings who live in a tightly integrated world where an impact or change in one area has powerful effects in all others. To truly care we must return to a more holistic, less fragmented and reductionistic paradigm of medical care. The “medical home” focused as it is on data gathering for population health is not the answer. We must not let the care for the ill be swallowed up by the pursuit of the cure of the disease.