Oliver Sacks’ memoir: That good doctoring requires

In reviewing Oliver Sacks’ memoir, On the Move:  A Life, book reviewer Andrew Solomon captured the spirit of narrative medicine.  I once saw a carpenter at work, tapping a nail once to set it, and then with a decisive second stroke, driving it all the way home.  Solomon hit the nail on the head just like that:

“The emergent field of narrative medicine, in which a patient’s life story is elicited in order that his immediate health crisis may be addressed, in many ways reflects Sacks’ belief that a patient may know more about his condition than those treating him do, and that doctors’ ability to listen can therefore outrank technical erudition.  Common standards of physician neutrality are in Sacks’ view cold and unforgiving – a trespass not merely against a patient’s wish for loving care, but also against efficacy.  Sacks has insisted for decades that symptoms are often not what they seem, and that while specialization allows the refinement of expertise, it should never replace the generalism that connects the dots, nor thwart the tenderness that good doctoring requires.” 

In Awakenings and The Man Who Mistook His Wife for a Hat, among other books, Sacks describes how he acts as an ally with patients.  He doesn’t cure them, but as a caring thought partner with them, he finds ways to free them from the most imprisoning limitations of their plights.

Advice:   Let’s read Oliver Sacks’ memoir.

Read an example of the use of narrative medicine.  Thanks to Andrew Solomon for his book review in The New York Times of May 17.

Skype psychotherapy and pets: It brings us closer

Joseph Burgo’s story:

I’ve been a clinical psychologist for over 30 years. Trained in the psychoanalytic method, I spent most of my career in an office seated behind clients who lay on a couch. Then, three years ago, after several followers of my blog asked if I would be willing to work with them by Skype, I started practicing face-to-face video psychotherapy with clients all over the world. Usually I “meet” them in their homes.

Often, I meet their pets as well.

Noelle, a 42-year-old woman living in the Australian outback, reached out to me for help coping with a midlife crisis. She had recently learned she would never be able to bear children and was in profound grief. She usually spoke with me from her bedroom, where she would sit cross-legged on the bed. Often I heard her dogs, three Shelties, barking in the background. One day when they seemed especially obstreperous, she gathered them onto the bed with her. I will never forget the agonized expression on her face as she told me, “These are my children.”

As she wept, she held one of them close and buried her face in his fur. My chest ached and tears came to my eyes. Rather than the existential loneliness of weeping on a couch, staring up at a blank ceiling, hers was a grief shared with her animals. Although across the world and thousands of miles away from her, I shared it, too. We were together, all five of us, in the pain.

After all my years in practice, I’ve come to understand that the greatest influence on the healing process in psychotherapy, at least the way I practice it, is the love I feel for my clients and the love they come to feel for me. As a professional, I’m uneasy speaking this truth aloud, and my clients often don’t feel entirely comfortable with it either. The love we feel for our pets helps ease the way. I witness the affection they feel for their pets, they see mine for Alice, and it brings us closer.

Although Sigmund Freud’s psychoanalytic method encourages the analyst to present a blank screen, concealing all details of his personal life, thoughts and feelings, Freud himself practiced from his home and included Jo-Fi, his favorite Chow Chow, in many of his sessions. Freud supposedly relied on his pet’s reaction to a client for help in assessing the person’s character. He also felt that a dog’s presence helped to calm his clients.

I’m sure that if my teachers and supervisors from analytic training were to hear about the work I now do and my views on the healing power of love, they would shake their heads in disapproval, concerned that I had gone to the dogs.

Read another post about the therapeutic power of love. 

Thanks to Joseph Burgo, whose New York Times article and Opinionator blog post are excerpted here.  He is the author of the forthcoming book The Narcissist You Know: Defending Yourself Against Extreme Narcissists in an All-About-Me World.

For many years: Crying by doctors

Dr. Amina Hassan Abdeldaim's letter to the Editor:

"A Mantra: No Crying in the CAT Scanner" on Feb. 1, Dr. Ellen Feld's exquisite telling of her experiences during her own treatment for breast cancer, finally allowed me to let go of the tears I have been blinking back for many years.

As a physician at a cancer hospital, I am in awe of the patients' stoicism and strength. If my patient cries, may I cry too? Will it help or hurt the patient to know I may have a dose of "unprofessional sympathy"?

Advice to doctors: Your compassion and empathy are much appreciated. I hope you can find some way to show that, maybe by letting yourself cry.

Read another story about compassionate physicians. Thanks to Dr. Abdeldaim and the editor of the New York Times, where her letter was published today.

She has found such a source of strength: Empathy for SMA type-1 sufferers

Q. My cousin and I are in our late 20s and quite close. This past year, her newborn son was diagnosed with a condition called SMA type-1. It is a form of muscular dystrophy and is terminal. Babies born this way are missing a gene needed to build and maintain muscle. There is no cure, and babies rarely survive their first year.

I am in awe of my cousin's strength. She has developed a large network of friends on the Internet, who all have, or have lost, a child to this illness. Every time we talk on the phone or see each other, she updates me on all the babies who have passed away since the last time we spoke. Talking about these things helps her cope and prepares her for what is coming.

My problem is that I'm empathetic by nature and am becoming increasingly overwhelmed hearing about all these babies passing away. How do I curb what I am feeling so that I can keep listening for as long as she needs me? Signed, Overwhelmed

A: She doesn't need to talk with you about these deaths because she has this large support network. I would tell her it's become too much for you to hear of all this loss, and that you are grateful she has her support group, all of whom are experiencing the same thing. You are not really part of their "club" and must ask to be left out of the loop of updates. That said, tell her you will do anything you can for her, and you love her as always. You might add that it's wonderful she's found such a source of strength in fellow sufferers.

Read another story about empathy for a medical condition. Thanks to columnist Margo for the source story in today's Boston Globe.

They regarded me as a rare pelt: Prostate cancer treatment

Dana Jennings's story:
I have prostate cancer, but it sometimes seems as if…the cold intent of many people was to translate me into an abstraction, to deny my damaged and tiresome flesh-and-bloodness.

My insurer did not want to hear that my radical open prostatectomy last July would demand a higher level of care because previous abdominal surgery had created a tortuous internal topography of scar tissue and adhesions. My insurer, despite the insight and strong protests of my doctors, kept insisting that any knife would do. Was Sweeney Todd available?

And some doctors I spoke with before my surgery – not my current team at the Cancer Institute of New Jersey – seemed to regard me as a rare pelt, a fascinating wrinkle in their volume business in prostates.

Cancer is a crucible in which we patients are somehow, we hope, reborn. It's a rite of passage as resonant as any other – a graduation, a baptism, a wedding – and should be treated that way. Some days, maybe because I'm still undergoing treatment, I don't want to hear about another stat, another study, another hare-brained cure. How about a smile, a kind word, and a hug?

The bewilderment, shame and fear often stun men into a passive and depressed silence. Nurses and doctors say that many men barely speak during treatment and office visits, letting their wives, partners or children do the talking. They are quiet waiting room wraiths, perfecting their thousand-yard stares. And if they speak, it's in murmurs, as if cancer required whispers. No one scratches you behind the ears and says "Good boy" for being mute.

Because I had surgery at a teaching hospital, I woke up each morning to the rustle and jostle of a gang of residents. Young crows with bright and clever eyes, they flapped into my room – almost like Keystone Kops in white coats – to take a poke at the old crow.

I don't want to be too tough on them, because they're only kids, and they have so much to learn in such a short time. But to most of them, I suspect, I was just a case, one of each morning's many medical exhibits.

I preferred the humane, morphine-woozy middle-of-the-night conversations with the aides who took care of me. The guy who talked about superhero movies after checking out the Iron Man figurine my sons had given me. And the guy who, as he gently drained my ileostomy pouch – not related to my cancer – told me how he'd had to wear a temporary pouch after he'd been shot when he was young and stupid.

Dana's Advice: To keep from being reduced to a cipher, a mere "case," you need to be conscious and verbal. As a patient, when you don't speak, when you try to take on the cool and detached manner of a doctor, all you become is "meat," quiet meat.

Read a story about compassionate doctors.

Thanks to Dana Jennings for his source article in the December 16 issue of the New York Times.

Abruptly changing the subject: Empathy from doctors

The man diagnosed with lung cancer sounded dispirited when talking about what cigarettes had done to him.

"I was always told I had a good strong heart and lungs. But the lungs couldn't withstand all [those] cigarettes…asbestos and pollution and secondhand smoke and all these other things, I guess," he said.

"Do you have glaucoma?" the doctor responded, abruptly changing the subject.

In her recent study in the Archives of Internal Medicine, Dr. Diane Morse recorded physicians’' appointments, and noted 384 times when patients mentioned concerns or emotions about mortality. Doctors responded with empathy only 10% of the time.

Advice: Find a doctor with both empathy and excellent technical skills.

Read a story on compassion.

Thanks to Will Dunham for the source article in the Boston Globe of Sept. 23.

Kernels of corn in their shoes: A simulation of life after age 85

They put on distorting glasses to blur their vision, and stuffed cotton balls in their ears to reduce hearing, and in their noses to dampen the sense of smell. They put on rubber gloves with bands around the knuckles to interfere with their manual dexterity. And they put kernels of corn in their shoes to mimic the feel of feet that have lost some cushioning fatty tissue – all to simulate what it can feel like to be age 85 or older.

Then to work: unfolding and reading a map with tiny type, blurred by the glasses, in order to plot a driving route. And buttoning a shirt, finding a number in the phone book, dialing the tiny buttons on a cellphone, fishing change from a zippered wallet.

Dr. Vicki Rosebrook developed this set of exercises, called Xtreme Aging, to teach middle-aged and young people sensitivity to the humbling difficulties that seniors can experience. As the Executive Director of the Macklin Intergenerational Institute in Findlay, Ohio, she teaches the program to people in schools, churches, and workplaces.

She started the company three years ago, after a teenage clerk at a hotel joked about her husband being a member of AARP. “We all started sharing experiences and realizing [the] discrimination.”

Advice to people in contact with elderly patients: Walk a mile in their shoes.

Read an example of compassionate care.

Thanks to Jim Leland for the source article in Sunday's New York Times.

As if they were old friends: Compassionate physicians' cancer care

Four years ago, my sister found out she had two types of cancer at the same time. It was like being hit by lightning twice.

She needed chemotherapy and radiation, a huge operation, more chemotherapy and then a smaller operation. All on all, the treatment took about a year. Thin to begin with, she lost 30 pounds. The chemo caused cracks in her fingers, dry eyes, anemia and mouth sores so painful they kept her awake at night. A lot of her hair fell out. The radiation burned her skin. Bony, red-eyed, weak and frightfully pale, she tied scarves on her head, plastered her fingers with Band-Aids and somehow toughed it out.

She saw two doctors quite often. The radiation oncologist would sling her arm around my sister's frail shoulders and walk her down the corridor as if they were old friends. The medical oncologist kept a close watch on the side effects, suggested remedies, reminded my sister she had good odds of beating the cancer and reassured her that the hair would grow back. (It did.)

People in my family aren’t huggy-kissy types, but my sister greatly appreciated the warmth and concern of those two women. She trusted them completely, and their advice. Now healthy, she says their compassion played a big part in helping her get through a difficult and frightening time.

Bedside manner can go a long way toward helping people with cancer understand their treatment, stick with it, cope better and maybe even fare better medically.

Advice: Find a doctor whose skill set includes compassion.

Browse for related stories in the index at the very bottom of this page, or read a story on the role of compassion in healing.

Thanks to Denise Grady for the source story in the NY Times of Jan. 8.

The greatest Christmas present ever: Empathetic active listening in diagnosis

Anne Dodge had lost count of all the doctors she had seen over the past
15 years. She guessed it was close to 30 of them.

Anne is in her thirties, with sandy brown hair and soft blue eyes. She grew up in a small town in Massachusetts, one of four sisters. No one had had an illness like hers. Around age 20, she found that food did not agree with her. . Anne lost her appetite and had to force herself to eat; then she'd feel sick and quietly retreat to the bathroom to regurgitate. Anne's health continued to deteriorate, and the past 12 months had been the most miserable of her life. There were also signs that her immune system was failing; she suffered a series of infections, including meningitis. She was hospitalized four times in 2004 in a mental health facility so she could try to gain weight under supervision.

By December, Anne's weight dropped to 82 pounds. Although she said she was forcing down close to 3,000 calories, her internist and her psychiatrist took the steady loss of weight as a sure sign that Anne was not telling the truth.

That day Anne was seeing Dr. Myron Falchuk, a gastroenterologist. He began to question, and listen, and observe, and then to think differently about Anne's case. And by doing so, he saved her life, because for 15 years a key aspect of her illness had been missed.

He had said, at the beginning, with a gentle smile, "let's go back to the beginning. Tell me about when you first didn’t feel good. I want to hear your story, in your own words. She told him the whole story. As she spoke, Dr. Falchuk would nod or interject short phrases: "Uhhuh," "I'm with you," "Go on."

Dr. Falchuk had begun their conversation with a general, open-ended question about when she first began to feel ill. "The goal of a physician is to get to the story, and to do so he has to understand the patient's emotions," Dr. Roter said. Dr. Falchuk immediately discerned emotions in Anne that would inhibit her from telling her tale. He tried to put her at ease by responding sympathetically to her history. He engaged her by indicating that he was listening actively, that he wanted to hear more. His simple interjections — "uh-huh, I'm with you, go on”"— implied to Anne Dodge that what she was saying was important to him.

A month later, she said he'd given her the greatest Christmas present ever – an accurate diagnosis. She had gained nearly 12 pounds. And she dared to think that maybe one day she would be, as she put it, "whole" again.

His questions, exam, and tests had revealed that she had celiac disease. This is an autoimmune disorder, in essence an allergy to gluten, a primary component of many grains. Once believed to be rare, the malady, also called celiac sprue, is now recognized more frequently thanks to sophisticated diagnostic tests.

Advice to people with puzzling symptoms: Find a doctor who will hear your whole story.

Read another diagnostician’s active listening story, or read the source, Dr. Jerome Groopman's newest book, How Doctors Think.

Suck it up: A simulator of Multiple Sclerosis

The woman in the booth puts on headphones, and hears a woman’s voice and the sounds of everyday life. At the store, she opens her wallet and the screen suddenly goes blurry, from a Multiple Sclerosis attack that prevents her from distinguishing between her $20 bills and $1 bills. She tries to pick up a cup, but it falls out of her hand, with the drop simulating the sudden loss of coordination that MS can cause. Her fingertips vibrate and tingle insistently.

With a video, headphones, and two wobbly treadmill tracks, the machine mimics an MS attack. The RJO Group designed the simulator, which was funded by Biogen and Elan Pharmaceuticals.

Art Mellor, an MS patient who runs the Accelerated Cure Project for Multiple Sclerosis, went through the simulator on Monday, at a conference of the American Academy of Neurology. “That’s what it’s like,” he said. MS patients often don’t have outwardly detectable symptoms and must depend on doctors believing their descriptions. Some patients, he said, get “the equivalent of ‘Suck it up,’ or ‘Oh come on, it’s not that bad.’”

The marketing theory behind the simulator: Doctors will be more empathic—and will treat the disease more aggressively – and that’s spelled m-o-r-e d-r-u-g-$.

Advice to MS patients and their advocates: Ask your neurologist if he or she has experienced the simulator, which is now touring conferences.

Read another MS story, or read Stephen Heuser’s source story in the May 2 issue of the Boston Globe.