Tuesday, January 26, 2010

Pain and dying are explored by doctors in new books

Pain and dying are explored by doctors in new books

By Perri Klass
Tuesday, January 26, 2010; HE04 

Pain and death are the physician's familiars, reminders always of the limits of medical capacity and the parameters of human mortality. The desire to prevent or at least alleviate pain and to evade or at least postpone death guide medical practice, yet doctors have often been accused of failing to take pain seriously and treat it effectively. And when it comes to taking care of patients at the end of their lives, once again doctors don't always do well, either at discussing the realities with their patients or at administering treatment at that critical juncture.

It is this need for proper care at the end of life that has given rise to David J. Casarett's specialty: He is a palliative-care specialist and the director of research and education for the University of Pennsylvania's hospice, and so he consults on a range of dying patients. "Last Acts: Discovering Possibility and Opportunity at the End of Life" is his rogues' gallery of last-act stories and his attempt to make sense of the variety of ways in which human beings react to the knowledge that death is near.

David Biro, author of "The Language of Pain: Finding Words, Compassion, and Relief," sees the subject of pain not only as a physician but also as a patient: After finishing his residency training, he developed a blood disorder that ultimately put him in the hospital for a bone marrow transplant. "At its most intense, the pain literally strangled my vocal cords," he writes. Recalling Edvard Munch's painting "The Scream," he continues, "Silenced, I felt just like Munch's sufferer: wanting to scream as loudly as I could but unable to make a sound." His book is a journey through art and literature as well as medical experience, seeking ways of understanding, articulating and relieving pain.

Casarett sorts his stories of patients into a set of fascinating conundrums: "Maybe there is an overarching organizational structure -- a taxonomy -- of the last acts that people pursue near the end of life." Thus, his book is organized by category, each defined by a signature story: Danny, who faced his advanced cancer with a round of wild partying and high living; Marie, who wanted to disinherit her family; Tom, who buried himself in the budgets and spreadsheets of his office job.

Many of these stories are not heroic; these are patients who are refusing to die what might be called a "good death" by literary conventions, which demand heartwarming family tenderness or nobility at the gates of eternity. Further, as the author notes, these patients often reject the more modern medical ideal of a "good death" that has given rise to the hospice movement of which Casarett is a part. His medical team is profoundly troubled when Jacob, rapidly dying of leukemia, insists that he wants to be placed on a ventilator, even though it will prolong his life for only a few hours and rob him of the possibility of spending his final moments awake with his family. When Tom focuses only on his work, the team wants to know why: "This was a patient, they thought, who should be saying goodbye to his family. So why was he filling out evaluations of assembly-line employees and estimating his department's computer budget for the coming year?"

The gradual journey toward understanding this highly unsatisfactory patient is detailed with self-awareness and humor. As he drives back from visiting Tom, Casarett begins to see himself in the patient's place, facing imminent death and "finishing a last paper or two. And wrapping up the data analysis for a study so a colleague could write it up." This sense of identification brings him into some conflict with his team, when he tries to argue against the idea of work as denial. And as he pursues Tom's story, and stories of other patients who fill their last days with their regular jobs, he finds himself wondering about the different functions that work may serve: Is it a distraction? A comforting habit? A source of identity? ("So what sort of person would be compelled by his sense of his identity to continue working . . . . Such a person would be a writer, a researcher, a thinker, naturally. It would be someone, I thought -- untroubled by modesty -- like me.") The author's willingness to analyze himself and his colleagues and to confess his many false starts gives his narrative an appealing quality. There is no omniscience here, just experienced and well-meaning people attempting to understand and help.

The stories in "Last Acts" are unexpected and often quirky. Casarett's taxonomy includes Lacy, who was desperate to write a novel and leave it as her legacy, and Ladislaw, who wanted only to enroll in a clinical trial so his illness could be useful. And there is Jerry, a hospital employee "widely known for a combination of laziness and boorish behavior that made him widely feared and universally hated," whose refusal to apologize, even when seriously ill, prompts an examination of why the dying may or may not seek to make amends.

At times, the team of hospice experts are shocked at what seems selfish or irresponsible or unappealing behavior by the patients. But in fact, this is a big part of Casarett's point: that our collective sense of the "good" death can prevent us from seeing the individual realities of people's lives. It's a lesson he learns as a doctor, over and over, delineating the stubbornly individual imperatives that drive people who know they are close to death.

Biro, on the other hand, sees a unifying experience in the complexity of pain. In his erudite and ambitious book, he writes about the ways that artists, poets and novelists have described pain; he considers physical pain and psychological pain and argues that the isolation that comes with pain, especially when it cannot be described, contributes to the agony. He invokes philosophical reflections on pain by Elaine Scarry and Susan Sontag, along with personal accounts by writers ranging from Fanny Burney, who underwent surgery for breast cancer in the days before anesthesia, to Virginia Woolf and William Styron on illness and depression, to James Joyce describing Stephen Dedalus's ear infection to fictional characters suffering and dying beside Mount Kilimanjaro (Hemingway) or in the wilds of the far north (Jack London). "The Language of Pain" investigates not one single vocabulary but a complex syntax of suffering.

In a wonderful chapter called "The Weapon," he takes us from a teenage boy in the emergency room who compares his abdominal pain to a knife, to a larger discussion of disease viewed through the metaphor of war and combat: "We feel as if there must be an agent moving against (and threatening) the body: Burney's poniards, Daudet's pen-knife, Price's eel, John's knife, Rachel's volcano, Mr. H's fire. Or, more elaborately . . . an enemy or alien force marches against and attacks the body's interior, like the advance of the secondaries in Solzenitsyn's novel, tearing the cancer patient's defenses to pieces as if they were tanks."

Considering pain in terms of agency, he continues, offers a kind of answer to the helpless question: Why is this happening to me?

Eventually he turns to the consideration of "good pain, " the pain in a Jack London story that reassures the character that he is in fact still alive and intact, and to the philosophical, metaphorical and even clinical implications of describing and expressing pain: "Pain is not an aberration in human experience but a routine, inescapable part of life . . . . It affects us all at one point or another. How, then, can we let it pass without trying to share it? How can we keep silent?"

Biro brings an extraordinary range of voices into this silence and moves through a huge variety of experience and narrative, without straying too far from the bedside.

Both books draw strength from this, from the sense that these are real, everyday situations that nevertheless require responses outside the traditional pharmacopeia. Both these books resonate not only with the common certainties of pain and death but also with the infinite individuality of human life and human voice.

Klass, the author of "The Mercy Rule: A Novel," is a professor of journalism and pediatrics at New York University.