"Letting Go"

I know the subject I’m going to write about is grim and one of the reasons it is so grim is that until recently it is almost never talked about. One of the exceptions is Atul Gawande’s forceful essay, "Letting Go," in the August 2nd New Yorker. And in the Sunday Times Magazine a few weeks ago, Katy Butler wrote a heartbreaking account of what dementia did to her father and how the medical profession did nothing but prolong the agony of his life.

Again, in the Times last Tuesday, Roni Caryn Rabin described the dilemma faced by family members and caretakers of an Alzheimer’s patient near the end of life when faced with the choice of whether to provide nourishment or withholding it. Her daughter said, “I had this realization—wow—that no matter what we did, Mom was never going to get better. We were just prolonging the inevitable, and potentially causing more suffering."

With the rising costs and growing arsenal of medical interventions and the rapidly increasing number of elderly individuals, end-of-life care has become a critical issue. Butler reports almost a third of Americans over 85 have dementia. And Gawande writes that “Twenty-five percent of all Medicare spending is for the five percent of patients who are in their final year of life, and most of that money goes for care in the last couple of months which is of little apparent benefit.” The days of a quick catastrophic illness leading to death at a comparatively early old-age are over. Today most individuals die only “after long medical struggle with an incurable condition”

How should medical professionals respond when they can’t save your life? Almost all doctors are reluctant to come right out and tell you this. And yet all the evidence presented in the foregoing accounts indicates that medical interventions for people in the last stage of their life cause more harm and suffering than doing nothing. Gawande reports: “…terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had substantially worse quality of life in their last week than those who received no such interventions.”

Gawande also treats at some length the effects of hospice care for critically ill patients and says there is no difference in survival time between hospice and non-hospice individuals with breast cancer, prostate cancer, and colon cancer. Moreover, in a striking statement he says,“…hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson was almost Zen: you live longer only when you stop trying to live longer.”

What is the solution to this growing, nationwide dilemma? Gawande proposes a very simple one: It is essential for individuals to have a serious discussion with their physicians about how they want to spend their final days. An Advance Directive given to your doctor may not cover all the bases. Absent a comprehensive statement, the default choice for doctors is do all they can to save their patient’s life.

Thus, end-of life discussions with physicians and family members need to be detailed and explicit. What kind of care do you want under the following conditions?

• Your mental condition deteriorates to the point that you are unable to communicate verbally or in written form in a fully coherent fashion
• Your physical health becomes uncontrollably and severely painful and you loose control of your bodily processes
• You develop an incurable disease or illness, which is clearly terminal and for which there is no known cure.

To bolster the importance of this discussion Gawande cites some impressive studies: Two-thirds of the individuals in a Coping with Cancer project who did NOT have this kind of discussion with their doctors suffered far more than the one-third who did. He cites the city of La Crosse, Wisconsin that has unusually low end-of-life hospital costs and attributes this to the fact that 85% have had end-of-life discussions with their physicians.

He concludes there are no rules for conducting a discussion with people about their terminal illness wishes except trying to determine what is most important to them. These “Breakpoint Discussions” as puts it are “… the conversation that we all need to have when the chemotherapy stops working, when we start needing oxygen at home, when we face high risk surgery, when the liver failure keeps progression, when we become unable to dress ourselves.”

Medicine and Literature

John Updike once wrote, “Life is a very strange thing, in a way, compared to life in a novel. People in novels rather rarely eat; their health is not often of concern to them; earning money isn’t nearly as important to them as it is to those of us in the real world.”

Virginia Woolf also expresses this view in her well-known essay “Short of Breath” that has been reprinted as a slim volume On Being Ill. It begins with a memorable paragraph.

“Considering how common illness is, how tremendous, the spiritual change that is brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, …when we think of this, as we are so frequently forced to think of it, it becomes strange indeed, that illness has not taken its place with love and battle and jealousy among the prime themes of literature.”

Even though she spent most of her life battling depression and debilitating physical symptoms, she never wrote about them. She wonders why illness has not been as popular a subject for literature as love. Why has the “daily drama of the body” not been recognized by writers?

She admits it might simply be due to the poverty of language. “English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache.” Her essay was written in 1926; in the eighty-four years since then, much has changed.

Late last year the first Wellcome Trust book prize was awarded for “outstanding works of fiction and non-fiction on the theme of health, illness or medicine.” The winning book was Keeper, Andrea Gillies memoir of caring for a relative with Alzheimer’s that apparently had not been publically reviewed. In writing about this award Chris Powers discusses other works of literature that treat medical themes.

He discusses Ken Kesey’s One Flew Over the Cuckoo’s Nest and Thomas Mann’s The Magic Mountain, Oliver Sacks The Man Who Mistook His Wife for a Hat, and Ian McEwan’s Saturday. He mentions writers who were trained as doctors—Chekhov, William Carlos Williams, Somerset Maugham, Walker Percy, a topic about which I have previously blogged.

I think of books I’ve read about individuals with Alzheimer’s, a topic that is being written about with increasing frequency these days. There is Still Alice by Lisa Genova a novel that describes the experience from the point of view of an individual diagnosed with early onset Alzheimer’s. Much earlier there was Elegy for Iris, John Bayley’s moving account his wife, Iris Murdock’s, descent into Alzheimer’s.

…Iris’s inability to summon the words she seemed to want. Her delivery had always been slow and thoughtful and a little hesitant, and at first I was not perturbed, sure that she would recover in a few minutes, when she got the feel of the gather. It was hard to say how conscious she was of her own difficulty, but the effect soon became paralyzing, for the listener as well as for her.

Alzheimer’s is, in fact, like an insidious fog, barely noticeable until everything around has disappeared. After that, it is no longer possible to believe that a world outside fog exists. First, we saw our own friendly, harassed GP, who asked Iris who the prime minister was. She had no idea but said to him with a smile that it surely didn’t matter.

More and more fiction and non-fiction books are being written about old age and the infirmities of growing old. I think of Jean-Dominique Bauby’s The Diving Bell and the Butterfly, a memoir that documents the author’s struggle to cope with the effects of a massive stroke that left him totally paralyzed with the exception of his left eye-lid that allowed him to communicate. I think David Rieff’s Swimming in a Sea of Death about his mother, Susan Sontag that portrays her persistent, but always painful, struggles to overcome three bouts of cancer. And then there are two recent works of Philip Roth, Everyman and Exist Ghost that depict in agonizing detail the “massacre” that is old age.

It is clearly no longer correct to say, as Virginia Woolf and John Updike did, that literature has ignored illness and matters of health. To the contrary, it now appears we are being inundated with more and more volumes of literary works that treat these issues in considerable detail. I sense we have only seen the beginning.

Imagine Chekhov as Your Doctor

Lapham’s Quarterly is a rather unique and to my mind a much needed periodical in that each issue is devoted to a single theme. It is usually explored by means of excerpts from a variety of contemporary and historical articles, books, essays, etc. The issue begins with an introductory essay and analysis by the editor Lewis Lapham. The Fall Quarterly issue was devoted to Medicine.

It includes selections from Virginia Woof’s essay On Being Ill, Susan Sontag’s Illness as Metaphor, Freud’s Introductory Lectures on Psychoanalysis, Atul Gawande’s recent essay in The New Yorker, The Cost Conundrum that President Obama apparently discussed at some length with his aides. Others include works by Ken Kesey, John Barth, Sinclair Lewis, Oliver Sacks and many more. It is a very rich collection.

In his Introduction (“Preamble,”) Lapham cites the following figures that are representative of comparable data we’ve heard so much about lately:

Medical error ranks as the country’s eighth leading cause of death, more deadly than breast cancer or highway accidents.

Americans in 2007 paid $7,421 per capita for healthcare as opposed to $2,840 paid by the Finns and $3,328 by the Swedes, but life expectancy in the United States is not as long as it is in thirty other countries…

The money allocated to healthcare in most other developed countries (in Canada and France as well as in Germany and Japan) provides medical insurance for entire citizenry…in America 46 million citizens (15% of the population) are uninsured.


To continue my posts on the relationship between Medicine and Literature, here are some of the most noteworthy passages I recorded in this of issue of Lapham’s Quarterly.

It is the duty of a doctor to prolong life. It is not his duty to prolong the act of dying.
Lord Thomas Horder

The doctor occupies a seat in the front row of the stalls of the human drama, and is constantly watching and even intervening in the tragedies, comedies, and tragicomedies which form the raw material of the literary art. W. Russell Brain

You can’t find the soul with a scalpel. Gustave Flaubert

Because the newer methods of treatment are good, it does not follow that the old ones were bad: for if our honorable and worshipful ancestors had not recovered from their ailments, you and I would not be here today. Confucius

It strikes me as absurd and rather obscene, this whole cosmetic and medical industry based on lust for youth, age fear, death terror. Who the hell wants to live forever? Most of us, apparently; but it’s idiotic. After all, there is such a thing as life saturation: the point when everything is pure effort and total repetition. Truman Capote.

There must be quite a few things a hot bath won’t cure, but I don’t know many of them. Sylvia Plath

If my doctor told me I had only six minutes to live, I wouldn’t brood. I’d type a little faster. Isaac Asimov

Imagine having Chekhov, who was a doctor, for your doctor. Imagine having William Carlos Williams, who was a poet, or Walker Percy, who’s a novelist, for your doctor. Anatole Broyard

We have to ask ourselves whether medicine is to remain a humanitarian and respected profession or a new but depersonalized science in the service of prolonging life rather than diminishing human suffering. Elisabeth Kubler-Ross

I find an irresistible desire to make jokes. When you’re lying in the hospital with a catheter and IV in your arm, you have two choices, self-pity or irony. Anatole Broyard

Doctors as Writers

I am often surprised to learn that a writer whose work I admire had been trained as a physician. I think of Somerset Maugham, Anton Chekhov, and Walker Percy. I’ll never forget reading Percy’s Moviegoer and then enjoying it just a much a few years ago when I read it again.

There are also more contemporary novelists like Ethan Canin, Rivka Galachen and Daniel Mason all of whom studied in medical school. Similarly, several well-known non-fiction writers such as Robert Coles, Oliver Sachs, and Theodore Dalrymple were trained as doctors.

Among my favorite New Yorker short story writers was Auturo Vivante whose romantic stories of Italian life entranced me in my earlier New Yorker days. One day I wrote him a letter to that effect and he even had the courtesy to reply.

And if you had the good fortune of reading Annals of Medicine who can ever forget the epidemiological “mysteries” that Berton Rouche wove? Although Rouche never formally studied medicine, you’d never know it from reading his memorable accounts.

And now the New Yorker has two eminent doctors—Dr. Jerome Groopman and Dr. Atul Gawande--on their staff who write brilliant essays about their medical experiences and recent advances in their science. Groopman recently wrote a deservedly popular and important book about medical decision-making titled How Doctors Think that I very much enjoyed and Gawade has also written two volumes that I’ve not yet read—Complications and Better: A Surgeon’s Notes on Performance.

Why do so many doctors write so well? When asked a similar question, William Carlos Williams, who practiced medicine and wrote poetry throughout his life, replied:

"When they ask me, as of late they frequently do, how I have for so many years continued an equal interest in medicine and the poem, I reply that they amount for me to nearly the same thing."

When I think about this question I realize both medicine and literature are concerned with the individual, not generalizations that apply across a large number. Both disciplines focus on the individual in intimate detail—suffering, illness, personal crisis, birth and dying.

Kathryn Montgomery, a professor of literature, is quoted in a May 15th article in the Times as saying: “Doctors are storytellers. They spend all day long listening to stories and telling stories.”

Perhaps that is why there are so few, if any clinical psychologists who write novels. While they listen all day to stories, it is rare for them to tell one in return.

In a letter written in 1899 to a fellow physician in Moscow, Chekhov wrote: “I have no doubt that my involvement in medical science has had a strong influence on my literary activities; it significantly enlarged the scope of my observations and enriched me with knowledge whose true worth to a writer can be evaluated only by somebody who is himself a doctor…”

Finally, Theodore Dalrymple recently passed along the following advice to a group of resident doctors:

“I had only three pieces of advice to give: firstly, that they should continue in the hospital for a few more years, because human nature was concentrated and distilled there as if for the express purpose of training writers; secondly, that on no account should they consort with academics of the humanities departments of any university, for to do so was the primrose path to stylistic perdition; and finally, that they should read a great deal.”

“Read a great deal.” Good advice for anyone, regardless of the “primrose path” they have taken.