Winter, 2006
By Sharon R. Kaufman
Scribner, New York, 2005, 400 pages
Review by Howard Spiro, MD
Professor Emeritus of Medicine
Yale University School of Medicine
Sharon Kaufman has uniquely prepared for her new contribution, subtitled How American Hospitals Shape the End of Life, by spending two years at three community hospitals in California. There, "embedded" with the physicians, nurses, social workers and the other experts caring for people in crisis, she talked with more than 100 critically ill patients and their families. A medical anthropologist who has written extensively about the medical profession, she is well-equipped to advise medical/ nursing personnel about dying in hospitals, where so many of us will take our last breath or, rather, have our lungs inflated for the last time.
Her book is divided into three sections: Part I, The Predicament, circles around the success of medical science in maintaining life, even if prolonging dying. Part II, The Hospital System, develops the theme that hospitals control physicians and patients. Part III,
The Politics and Rhetoric of the Patient's Condition, sustains more than a few case studies under the rubrics of "Suffering," "Dignity," and the "Quality of Life." Among many keen observations, Kaufmann emphasizes the pressures of the hospital budget, but equally important, the pressures of time. Readers may come away saddened at how ravenous hospitals have become looking for a healthy bottom line.
Hospitals shape what doctors do by organizing and controlling life-saving technology. The past 60 years have seen a sea change in the relationship between doctors and hospitals. In the 1940s hospitals were run for the convenience of physicians whose workplace they provided. But hospitals also represented a generous assumption of civic responsibility by citizens who wanted to contribute to the welfare of their fellows. The local hospital fulfilled a community goal, caring for patients regardless of cost, and they represented the local citizenry, who supported them by taxes, by gifts and by volunteer activities.
Hospitals used to be a destination, not just a clearinghouse. I am old enough to recall the days when patients were allowed weeks or even months to die in the hospital, before time pressures to get patients out of the hospital restricted such kind charity. Then hospitals truly were places of refuge where comfort was as important as care. That world has been lost-for many understandable reasons that include weakening of the 1930s commitment to "the social contract," along with the vast advances in what medical science can do and how much more those cures cost.
Nowadays the physicians and other "healthcare workers" serve the hospital. Where the hospital director in the 1940s was simply the superintendent, often a physician, meandering around the wards to make sure that everything was shipshape, today hospitals are medical centers that employ more workers than any other game in town, and their CEOs are usually MBAs paid in the seven-figure range. Hospitals are money-making conglomerates that may be labeled "not-for-profit," even when their very metaphors betray their business spirit.
Kaufman finds an urgency about everything in the modern hospital. The hospital's primary task, she observes, is "to move things along" tracks of diagnosis and treatment, propelled by attention to hospital budgets, reimbursement and the other economic priorities of managed care. Sadly, young physicians trained in these circumstances do not bemoan, let alone recognize, these pressures. Kaufman does not put all the blame on hospitals or staff, for she recognizes the ambivalence of families, who hope to help the patient yet are fearful to speed the process of dying. Kaufman vividly depicts the dilemmas at the end of life by recording in detail the conversations that have troubled most every physician and nurse.
Hospital care has now become so complex that specialists called "hospitalists" are needed to provide proper care, and that is good for everyone. They have a far more urgent responsibility than their office colleagues, and they are comfortable with the machinery of care and, for some, with the jargon of death and dying. The words that physicians and nurses use in talking with patients are commonplace to us but far more portentous for the critically ill and their families. The author examines this secret language that hospital caretakers share, despite the ignorance of patients and their families about those last days in hospitals that have a budget to flesh out and technologies to finance.
Hospital pathology conferences usually feature discussions around why a patient died and what could have been done differently, but few ever raise the possibility that, sometimes, it might have been just the right time to die, as far as the patient was concerned. That we physicians see death as our opponent and aging as a disease someday to be overcome is widely lamented in medicine, but dying people still get more than they ask for in those last days. This is illustrated in a letter from a patient's daughter:
"My mother, Georgia Hansot, died recently in the ICU of a major hospital... She was 87 years old... I am astounded I had so little inkling of how hard it would be to help my mother have the death she wanted... She was attached to a respirator and had a feeding tube inserted down her throat. What had happened? Exactly the opposite of what she had wished... I found I was dealing with a bewildering array of medical specialists trained to prolong lives, not to let patients die. My mother's wishes...were now subject to the approval of strangers... None of these specialists knew my mother and they all had their own convictions how to do best by her... My stress built over the ensuing 5 days as mother's distress was palpable. An attempt to remove my mother from the ventilator failed... The hospital came to feel like alien territory...full of medical strangers intent on maintaining my mother's vital signs at all costs. My sense of being trapped in a nightmare intensified."
That old age leads to disease and disease to death is almost an article of faith. Too rarely is old age regarded as much like the rusting out of a bridge, the wearing out of parts. The idea, for some over 80, that sudden death in good health, however "premature," is preferable to a slow death in decline much later, is considered too morose for discussion. You have only to pass 80 years to find subspecialists goodheartedly eager to return your organ system to its youthful state, regardless of any accompanying general decline.
Kaufman does not spare our feelings. She describes the harrowing waits in the Limbo, really the Purgatory, that many families find themselves now that dying has turned from an event into a process. Equally important, physicians are now strangers to the patients they treat, even if we do not know whether physicians who are friends with their patients do any better. Nor does she spare us the battles between physicians and patients, between the heroic measures that doctors are so good at and the palliative care that brings peace.
In the end, of course, even this perceptive account leaves us with questions. Our country has become so wonderfully diverse; people have different opinions, different wants, and different beliefs. Although modern medicine acts as if we are all modules, modular patients and modular doctors, physicians need to read books like this one to ponder the dilemmas - to talk about them with others - and to recognize that our science cannot provide all the answers.
