Swimming in a Sea of Death: A Son’s Memoir
by David Rieff
Published by Simon and Schuster
179 pages, 2008
Final Exam: A Surgeon’s Reflections on Mortality
by Pauline Chen
Published by Vintage Paperback
468 pages, 2008
Both Sides Now
Reviewed by Diane Leach
Reading two memoirs about death within two days, whilst bedridden from chronic illness arguably isn’t an effective method for rapid recuperation. The reader may instead extrapolate her readings to her own (momentarily) failing body, or find so much pain, both within and without, unbearable. But Rieff and Chen’s books are such fine contributions, so beautifully, movingly written, that they did what great books do best: they made me forget myself.
Rieff is Susan Sontag’s son. His memoir of her final battle with the cancer is eloquent, elegant and pained. Three years after the death of one of our great intellectuals, her son remains in a state of deep, guilty grief. His is not a year of magical thinking; it is a lifetime ration, and we can only hope writing this book gave him some solace.
Returning from a long, difficult trip to the Middle East, Rieff telephones his mother from Heathrow airport, learning she has had abnormal tests results. After successfully battling breast cancer and uterine sarcoma, Sontag attempts a breezy hopefulness. There have been so many tests over the years, so many false alarms. This is just another, mother and son agree over the telephone. But will David accompany her to the doctor tomorrow, for the final results? He does, and the news is the worst possible: myelodyplastic syndrome, a lethal blood cancer that will rapidly “convert” to acute myeloid leukemia. Treatment options are few: the drug 5-azacitidine, which can briefly prolong life, or a full bone marrow transplant, which, the doctor breezily announces “wasn’t a very promising avenue for a woman of seventy-one like my mother.”
The doctor’s parting advice is to do nothing until the disease converts, though he neglects to mention that AML’s sole outcome is rapid death.
The stunned pair drive back to Sontag’s apartment, each locked in their personal pain and shock. Internally Rieff is casting about desperately for something, anything, to do or say:
Once home, Sontag and Rieff rush to the Internet, where the information on offer is even bleaker. Sontag’s cancer is aggressively rapid. The term “palliative care” is repeatedly invoked. Yet Sontag refuses to accept her diagnosis. Had she not outwitted stage five metastatic breast cancer, back in the relative medical dark ages of 1975? Had she then, again, conquered uterine sarcoma? Somebody, her good friend Jerome Groopman tells her, must inhabit the tail end of the bell curve. Somebody, by dint of hard work and the willingness to endure extreme measures, outwits the death sentence. And that somebody, she is convinced, is Sontag herself.
So it is that a woman who reveres reason, science and their manifestations in the physicians treating her enters a state of deep denial. Always in need of company, she now finds solitude unbearable. Suffering understandable anxiety attacks, she is prescribed Ativan yet remains amazed she needs it.
Perhaps worst of all, she asks those around her to promulgate an endless message of hope. That somewhere out there is an experimental protocol, a drug regimen, a bone marrow transplant, that will buy her desperately needed writing time.
It is this disconnect -- his mother’s wish that he act dishonestly in the face of absolute reality -- that undoes Rieff. To this day he remains uncertain whether or not he acted correctly in lying to her. He wishes for Simone de Beauvior’s certainty, described in A Very Easy Death. In 1963, terminal diagnoses were withheld from patients. Told she had peritonitis, Françoise de Beauvior suffered, but believed she would recover: knowledge of her cancer lay with daughters Simone and Poupette.
Beneath Sontag’s denial is her terrible fear of death. In an early journal entry she writes of “...not even being able to imagine that one day I will no longer be alive.” To this end, death is a verboten topic. And Rieff, fearing for his mother’s mental heath, will not break that silence. Besides, she “was entitled to die her own death.”
Rieff is certain he could have acted better, more ably, done something more. But what? For we can only accompany the ill so far before standing up and walking away from the wheelchair, the bed, the burial site. We do what we can, until our turn comes.
Surprisingly few people of Sontag’s wide acquaintance appear in Rieff’s memoir: her assistant Anne Jump, her housekeeper Sookhee Chinkhan, who noticed Sontag’s multiple bruises with increasing worry, onetime companion and now dear friend Paulo Dilonardo. Annie Leibovitz is mentioned only twice, once as Sontag’s “on again, off again” longtime companion, and finally, blisteringly:
It’s certain the cognoscenti will jump on this, a sort of Britney debacle for the intellectual set, but these same cognoscenti weren’t there, rendering them unqualified judges. As a member of the unqualified party, I cannot help but notice Rieff’s own set of posthumous carnival images, that, if anything, expose his mother even more than her lover’s photographs. It is Rieff who tells us what Sontag thought and felt during her last days and in quotes from earlier diaries. He describes her decline -- this once brightest of intellectual lights, equally celebrated for her cerebral beauty -- suffering from “chemo brain,” too weak to roll over in bed, “covered in sores, incontinent, and half delirious...” carrying on to her final moments of life, which were blessedly peaceful.
That Leibovitz loved Sontag is beyond question; I find it difficult to accept that the photographs, however controversial, were a bid for celebrity. Leibovitz hardly needed it, and Sontag’s fame, though intense, is delimited by a society too shallow to revere intellectuals. I think Leibovitz was responding to Sontag’s death the only way she knew how -- by documenting it. Just as Rieff has in writing this very intimate, revealing book.
In dealing with the impossibility of his situation, Rieff quotes Didion’s infamous “we tell ourselves stories in order to live”. To which I would add, we tell ourselves stories in order to survive immeasurable, irreplaceable loss, a loss, in this case, that Rieff shares with Leibovitz, no matter his feelings.
Pauline Chen’s Final Exam: A Surgeon’s Reflections on Mortality shifts the perspective from family member to doctor. Like Rieff, Chen faces death uneasily, casting about for the right words, the right gestures, the right decisions. But where Rieff is unable to draw meaningful conclusions, Pauline Chen is more fortunate. A surgeon specializing in oncology and liver transplants, her memoir examines the ways the medical profession and its practitioners are taught to manage -- or not -- the lives and deaths of their patients.
Like all youthful medical students, Chen wanted to save lives. She envisioned a line of grateful patients, restored to glowing health beneath her competent hands. What she did not foresee were those who would die. Nor was she given much practical training in dealing with the suffering and death she encountered: “There is an essential paradox in medicine: a profession premised on caring for the ill also systematically depersonalizes dying.”
Final Exam opens in Chen’s human anatomy class, where, over the course of a semester, she and her classmates systematically dismantle their cadaver, a delicately built woman who died at 72.
Chen moves between medical terminology and lay language flawlessly. Tweezers are “forceps” or, for lovers of slang, “pickups.” Dissected muscles are released from the “epidermal cocoon.” The cadaver’s left hand, still bearing the paled skin from a wedding band, is pried apart into the “flexor pollicus longus, abductor pollicus brevis,” small muscles Chen imagines the woman using to brush her hair or hold her husband’s hand.
As the semester progresses, Chen will dwell on -- sometimes almost in -- this woman’s body until it imprints on her neural circuits: the woman’s small back, narrow arms, painted fingernails. She grows attached to this anonymous teacher whose generosity demonstrates the human mechanism’s inmost structures. Months pass: Chen and her lab mates encounter blackened lungs, learning the woman smoked. They open her abdominal cavity only to be flummoxed by tangled loops of bowel, studded with tumors. Chen’s nameless cadaver, who was married and painted her nails, whose lushly developed facial muscles indicate she smiled widely and often, died from metastatic ovarian cancer.
From the classroom Chen moves to hospital rotations, witnessing her first “code,” watching her colleagues muster blank expressions as all efforts at resuscitating a patient fail. It is utterly unlike television, loud, messy, the patient’s limbs flailing uncontrollably as his heart is unsuccessfully defibrillated.
An older resident teaches her how make a “death note:” no spontaneous heartbeats, no spontaneous breathing, no response to painful stimuli. Check clock. Note time. The flat impartiality shocks Chen. Surely there is more to death than three simple tests and an educated glance at the clock. But the demands of the sick -- the living -- demand constant, vigilant attention, an endless learning curve of complex tasks without room for error. Still:
Chen’s attitude would likely comfort Rieff, for the doctor who gave the myelodyplastic syndrome diagnosis was breathtakingly insensitive, speaking to Sontag and Rieff as if they were idiots, condescending to Sontag when she inquired what, if anything, might be done. Perhaps the doctor in question was indeed a bastard. It is also possible that, beneath his dismissive demeanor, he dreaded his task.
Chen also comes to dread speaking with patients about dying. Instead she slogs through medical residency, learning the art of “turfing” -- handing off a complex patient to the next specialist rather than accepting the burden of care. She listens as senior students discuss patients spending their final months in the hospital: the going advice is to keep the person alive until you move off rotation, lest you are stuck with the death note and final case write-up, sure to entail reams of notes. Thus patients and their families are reduced to scut: “Some Clinically Useful Tasks.”
Such attitudes are dismaying, and Chen counters them with numerous studies and improved teaching models. More and more medical schools are adding death and palliative care in their curricula. But additional coursework does not equal bedside manner. Nor does it allay the pain of working with parents, spouses, and children, something Chen went to great lengths to avoid. She puts off seeing Bobby, a charming 30-year-old whose chronic ulcerative colitis turns the corner to cancer. She puts off seeing Bobby after he is moved into intensive care. She puts off seeing Bobby even after Lou, the sharpest nurse on the ward, asked her to discuss palliative care with him. When Bobby dies, Lou literally corners Chen:
Bobby haunts Chen, as does “Dutch,” a patient who died of post-surgery complications that, under stricter watch, might have been avoided.
Might-have-been: within that poor grammatical construction lay circumstances beyond Chen’s control. Her mentors and colleagues examine Dutch’s death in M and M: Mortality and Morbidity, the regular meeting investigating all hospital deaths. Chen is exonerated by her mentors and peers, but Dutch, like Bobby, becomes wan on kuei, a Taiwanese term for a wronged spirit or soul seeking “mollification for their untimely or dishonorable deaths.”
Doctors rely on ritual to cope: there are protocols for hand scrubbing, for the emergency room, the operating theatre, rounds. Chen writes:
Thus Chen is able to extract the liver of a toddler, killed when his six-year-old sister scooted into the driver’s seat of their mother’s car and rolled over her brother. Rushing the organ back to Los Angeles, where another toddler awaits transplant, Chen suddenly stops, taking took a hard look at the child’s body: he is barely more than an infant.
The impact of such moments cumulates; when a 35-year old brain-dead Asian woman is brought in for organ harvest, Chen, feeling she is seeing a version of herself on the table, steps back.
Sontag had a few gifted doctors able to both treat and comfort: Dr. Jerome Groopman and Dr. Stephen Nimer brought her great solace as she lay dying. They were able, Rieff writes, to “work what did seem like nothing short of magic and reel her back up from the black well into which she had fallen.”
They had, Rieff says, the words he did not. Yet neither man promised Sontag recovery. Rather, they managed, in a term both Rieff and Chen use, to “reframe” the question.
“Reframing hope,” however new-agey sounding, carries great import. To reframe hope is to maximize time left by moving beyond difficulties with family and other loved ones to a final peace. It means saying the unsaid, making wishes known, dying as comfortably as possible.
Reframing hope means abiding by the dying individual’s wishes. To this end, Nimer listened to Sontag, treating her cancer aggressively until she died.
Yet such desires are double-edged, as Rieff so painfully observes firsthand. Chen also writes of patients who needlessly suffer as doctors, families and patients refuse to abandon treatment despite its evident futility:
Sontag’s denial is something Chen encounters in her own practice, noting that ten per cent of advanced cancer patients are in “severe denial,” with another 18 per cent in “moderate levels of denial.” Case in point: “Margaret,” a woman who visits Chen only after her husband notices a smell. Chen’s examination reveals advanced inflammatory breast cancer with ulcerating tumors. Margaret attributes her condition to a history of lumpy breasts and an ill-fitting brassiere.
Aggressive as she was in pursuing any and all cancer treatments, Sontag would likely have cringed at such magical thinking, yet she shared Margaret’s certainty that death was for others.
As Chen brings Final Exam to a close, her attitude toward dying patients shifts. She grows increasingly able -- willing -- to ask patients and their families about their final. She is able to tell handsome Frank that he won’t be returning to their shared Connecticut hometown. She does this sitting on the edge of his bed, holding his hand. She visits him twice daily, every day, until his death. Arriving in the room moments after his passing, she asks his children if she might have a moment alone with him. Instead of pronouncing the death, Chen sits beside Frank, wishing for his grin, the grasp of his hand, the return to life. Months later, she receives a card from his daughter:
“My father was so fond of you, and it was your spirit that gave him the strength to be himself in the worst of situations.”
Chen, like Nimer and Groopman, has learned that good medicine doesn’t always mean health or even brute survival. Sometimes all one can do is be present. And only being present -- able to dismiss the plethora of medical options, to support a patient without judgment -- is nearly impossible. Precious few doctors are capable of it; precious few people are. For these reasons, Chen is the doctor we all wish for, Rieff, the son who should forgive himself. | January 2008