Some memories of losing our loved ones seem frozen in one key, in one set of grim colors. The end of my sister's life is such a memory.
The oncologist had no option but to tell her that her breast cancer had become terminal. Then, after a few strained moments of silence, he cleared his throat and said to all of us that her condition most likely would produce euphoria in the final hours. This stab at a consolation of sorts fell like pebbles into an immense canyon. I cannot remember if he said anything else or when he left the room.
Talking with patients and their families, one hears about similar experiences that have left them frustrated, confused and angry. Susan P. Halpern's "The Etiquette of Illness" and Arthur W. Frank's "The Renewal of Generosity" address how a caregiving system often creates alienation.
Both books seek to help us rethink our ideas about health care, either by pursuing positive small gestures as Halpern suggests or by making changes on a large scale as Frank imagines.
Where one feels frustration, Halpern counsels sympathy and understanding. Where a gesture seems clumsy, she illuminates it. "Doctors are trained to cure more than to help with dying," she writes in a chapter about doctor-patient relationships. "Many doctors are afraid to confront death. They call the nurse and leave the scene."
Halpern's wisdom arises from her own experience as a lymphoma patient. She has written an extremely sensitive, practical work, a gathering together of stories under various chapter titles ("Finding the Words," "Acts of Kindness") that suggest how we should be -- and how we really are -- around people with illnesses. The effect is cumulative, gradual, so that a group of anecdotes suddenly accretes an overall meaning or insight.
One of those stunning insights is how out of touch we are with illness and dying. We need books such as Halpern's to teach us how to be sick (make lists, she advises, as you would for a vacation or business trip) and how to embrace the positive qualities of death (it can be the ultimate reconciler in a long-standing strained relationship).
Frank's "The Renewal of Generosity" explains why we are so out of touch with illness and in need of books such as Halpern's: Our medical system has a dehumanizing effect traceable to its earliest days.
Helping the sick in hospitals, which Frank says started with a fourth-century Christian woman named Fabiola, had become so beset by financial needs and high demand by the 11th century that care was turned into a managed business. The result, he says, is "an absence of any moral vision of human obligation."
A professor of sociology at the University of Calgary in Alberta, Frank is the author of "The Wounded Storyteller," in which he shows how illness causes people to rethink the meaning of their lives and turns them into storytellers of their experiences.
"The Renewal of Generosity" continues his exploration of patient issues, moving into the area of doctor-patient and patient-family needs, pushing the ring of meditation further out.
What's needed? A new concept of how doctors and patients relate, Frank says, a concept of being "guests and hosts" to each other. Frank also calls for cultural perceptions of illness to be stripped of fear and negativity.
The book may be too theory-saturated for the general reader, but like Halpern's book, "The Renewal of Generosity" seeks to have patients seen less often as objects, to have their stories listened to and valued -- by everyone. Each patient, Frank says, is a "moral presence."
Such ideas are uplifting, especially when the reality is that some of the most caring professionals struggle under overwhelming, heavy caseloads. But one wants to believe that a total revolution in thought and compassion is possible, and Frank and Halpern are to be thanked for keeping our eyes on this goal.
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