Even as we marvel at the latest advances in medical technology in this country, a dire and unacceptable consequence of these changes is already in plain sight -- the loss of the patient as person in the process of our fragmented and dysfunctional health care "system."
There are so many ways in which patients as persons get lost in the increasingly-chaotic landscape of today's health care environment. These are some of the trends that perpetuate and escalate this problem:
- A multi-payer financing system with some 1,300 private insurance companies that creates perverse incentives for physicians and other providers to deliver increased volume of inappropriate and unnecessary services to grow their revenues.
- Lack of price controls throughout the system.
- A largely for-profit private health insurance industry that profits by covering less care.
- A system driven by a business ethic more than a service ethic, with health care just another commodity for sale on an open market.
- A medical-industrial complex that has become solidly entrenched over the last 40 years with tremendous economic and political power.
- Reimbursement policies that favor procedures and specialized services over more time-intensive services typical of primary care, geriatrics and psychiatry.
- A physician workforce that has become dominated by non-primary care specialists with little knowledge of the patients as persons, as members of families and communities.
- A disconnect between ambulatory care and hospital care, with primary care physicians following their patients into the hospital now a rarity.
- Hospitalists trying to coordinate hospital care of patients with little knowledge of their prior care and often insufficient communication among multiple specialists.
- A growing use of electronic medical records, a necessary and welcome change but marred by competing systems that don't speak to each other and largely omit any information of patients as persons.
As a result of these changes, the present state of health care in this country to an increasing extent involves strangers caring for strangers, with patients' narratives and life stories no longer a key element guiding decisions about their own health care. This is a serious problem, not yet part of our national conversation, that has led to a growing gap between the care that patients need and deserve and what they receive.
Can the person be restored as the central object of health care in today's profit-driven system? The challenges are daunting and will require a long-term social, economic, political and cultural shift. In a broad view, we need a paradigm shift similar to that of the Copernican revolution, when the Renaissance astronomer conceived a heliocentric cosmology that displaced the Earth from the center of the universe. Such a shift in U.S. health care, that puts patients and families at the center of health care, is illustrated here.
As has already occurred in most advanced countries around the world, we need to turn around how we think about health care in this country in these kinds of ways:
- Shifting from a system based on ability to pay to one based on medical need.
- Moving from health care as a commodity to a basic human right and need.
- Moving from a dysfunctional, fragmented and exploitative private health insurance industry to a single-payer improved Medicare for All coupled with a private delivery system.
- Moving from political- and lobbyist-driven coverage policies toward those based on scientific evidence of efficacy and cost-effectiveness.
- Replacing today's unaccountable system with one that stewards limited health care resources for the benefit of all Americans in a single risk pool ("Everybody in, nobody out").
Many lines of reform would help to move present dynamics in health care toward a more patient-centered process. Financing and payment reforms would go a long way in that direction. Improved Medicare for All (H.R. 676) would establish universal access to health care for all Americans. It would also facilitate other enabling steps, such as achieving price controls on the supply side and encouraging growth of new approaches to primary care that are more person-centered.
The missing element in today's depersonalized health care is time -- listening and talking time between patients, their physicians and other health care professionals -- during which patients can relate their narratives that can then be integrated into plans for their care. We already know that trust between physicians and patients built over years improves medical outcomes and enhances healing.
As system problems of U.S. health care impact more ordinary Americans with diminished access to affordable care, and as growing millions forego essential care, we are now seeing a renewal of literature in the medical humanities as a counter trend to depersonalized care that too often does not meet patients' needs. Health Affairs, as the premier health policy journal, has had a regular feature for years dealing with patient narratives. The American Medical Student Association (AMSA) has established its Humanities Institute, now offering workshops exploring the art of medicine, including sessions on narrative medicine and writing for social justice. A number of books are charting new territory in this direction, including Norman Cousins' Anatomy of an Illness, Arthur Kleinman's The Illness Narratives, Howard Brody's Stories of Sickness, and Rita Charon's Narrative Medicine: Honoring the Stories of Illness. Copernicus Healthcare is adding to this promising trend with its forthcoming release of The Art of Medicine in Metaphors: A Collection of Poems and Narratives, edited by James Borton. This kind of writing builds on a rich earlier tradition of medical writing in this genre, including the poetry of Dr. William Carlos Williams in the last century.
As Dr. Charon notes in her 2006 book:
I hope that the frame of narrative medicine can gather new combinations of us -- from the humanities, from all the health professions, from the lay world, the business world, the political world -- and make new relations among us, so as to look with refreshed eyes at what is means to be sick and to help others get well. (1)
This hope gives us a vision toward better, more humane health care. Admittedly, it is a Herculean task to reverse well-entrenched trends in our dysfunctional market-based health care system, and paradigm shifts take a long time. But our present system is not sustainable, reforms are not impossible, and in order to progress, we first need this kind of vision.
(1) Charon, R. Narrative Medicine: Honoring the Stories of Illness, New York. Oxford University Press, 2006, p. xiii.
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