The Left Atrium · De l'Oreille Gauche

CMAJ 1999;161:174-7

• Culture collision
• One thousand words
• When death is no longer the enemy
• In a hospital garden

Lia Lee was three months old when the spirit first caught her. Her sister slammed a door, and then Lia rolled her eyes and went into an epileptic fit. Her family had no doubt that the door-slamming provoked an evil spirit, a dab, to cause the fit, and that the fit made Lia special as well as ill. Lia's parents took her to hospital. Born in Laos, Lia's parents are Hmong, members of a once-remote Indochinese hill tribe with a distinct culture that, despite persecution and repeated migrations, has been kept intact for more than 4000 years. Like most Hmong refugees in the United States, they neither spoke nor understood English. There were no interpreters at the hospital, and the fit was over by the time they arrived.

Lia's family is among the more than 10 000 Hmong who have settled in the unlikely town of Merced, a community of 61 000 in California's Central Valley that boasts the Yosemite Dental Society Smile Contest and the Romp 'n Stompers Square Dance. The cultural mismatch is apparent in all aspects of their lives, not least with respect to medical care. Health care workers have found the Hmong problematic because of communication difficulties, their lack of compliance (that awful word for an even worse concept) in taking medications and keeping follow-up appointments, and their custom of being visited in hospital by numerous wailing, chanting, gong-banging, chicken-sacrificing relatives.

When Lia was examined her lungs were found to be congested, and she was sent home with a prescription for antibiotics. In the next three months she had at least 20 more fits, and she was still fitting the third time she was seen in hospital. On that occasion she was examined by Dr. Dan Murphy, a family practice resident who was interested in Hmong culture. He did a full work-up, which meant that Lia's parents had to consent to procedures they could not have understood. She was discharged with three prescriptions. Despite an "explanation" in sign language, her parents had no idea what the medicine was for, how much to give, or when. Lia's mother, who had learned to write her name to satisfy what she viewed as a strange American penchant for signing forms, had signed a piece of paper saying she would bring Lia for follow-up. Not having understood why she should bring Lia back, she didn't. Thus began a tragedy that reached Shakespearian proportions.

During the next three years, Lia's seizing grew far worse. She showed increasing signs of developmental delay. Tests showed that she was not being given her medications. The two pediatricians in charge of the department, Peggy Philp and Neil Ernst, became increasingly desperate. They were, Fadiman writes, two of the most dedicated doctors you could find anywhere. Every time Lia was admitted, even at three o'clock in the morning, one of them would drive to the hospital to see her. They wanted to ensure that a language barrier would not stand in the way of Lia's care. But the problem was not just that Lia's parents did not understand English or understand the doctors. The doctors did not understand their patient or her culture.

In those three years Lia's drug regimen was changed 22 times. Lia's parents found that many of the drugs made her worse, and when that happened they discontinued them. The droves of social workers who visited their home were met with polite stone-walling. Most eventually went into burn-out. Philp and Ernst, convinced that Lia was sliding downhill because she was not being given her medication, had her taken into care. Thus Lia's parents discovered that in the land of the free doctors can take your children away. Lia continued to get worse. While she was in care, with a wonderful family who followed doctors' orders to the letter, she still got worse. Meanwhile, social workers and newly-recruited translators worked hard to make the Lees understand the need for giving the drugs correctly. Nearly a year later, when the Lees were deemed ready, Lia was returned home. And still she got worse, even when tests showed that she was receiving the proper doses of medication.

Three months later, at a respite care centre, Lia fell off a swing and went into the worst status epilepticus her doctors had ever seen. No one knows whether she was fitting because she fell, or whether she fell because she fitted. She developed a Pseudomonas aeruginosa bacteremia and sank into a vegetative state. Her fits had stopped forever. She was quadriplegic, incontinent and brain dead. The doctors sent her home to die in the arms of her adoring family.

That was in 1986. Lia is still alive. Her family removed the hated nasogastric tube when she was brought home, and so they no longer qualify for free formula. Her doctors keep her supplied with free samples instead. Lia's mother spoons formula down her throat and is adept at getting her to swallow it without gagging. She grows special herbs for Lia. She has the shaman in, and sacrifices pigs and chickens on auspicious occasions. She chews food in her own mouth and then feeds it, like a mother bird, to Lia. Fadiman writes that she has seen other children in persistent vegetative states in institutions. They have pallid skin, are a bag of bones, and smell faintly of urine. In contrast, Lia looks beautiful and smells delicious.

Read this book. It is superbly written, utterly fair-minded, impeccably researched and has the pace of a literary novel. Among the enthusiastic endorsements posted on the Amazon Web site is the following comment by Dan Murphy: "Never have I felt so fairly treated in defeat, and never have I felt so much respect for an author's skilful distillation of a tragically murky confrontation of cultures."

Caroline Richmond
Freelance writer
London, England.

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Bathers in High Park Sanitarium, Toronto, Ont., July 26, 1914. The sign in the background advertises "Battle Creek Sanitarium methods in the treatment of Rheumatism, [?] Anemia, [word illegible], Diabetes, Goitre, Constipation and diseases of the Heart, Kidneys and Nervous System." Founded by Adventists, the sanitarium at Battle Creek, Michigan, promoted hydrotherapy, exercise and a vegetarian diet. In 1894 its chief physician, John Harvey Kellogg, and his brother William Keith Kellogg invented corn flakes as a dietary substitute for bread.

John Boyd collection / National Archives of Canada / PA-061177

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It wasn't a typical family medicine call: an 80-year-old man with terminal rectal cancer who had slashed his wrists earlier that morning. The woman on the other end of the line confided that she wasn't sure if she should be asking for help. Her friend didn't want to go to hospital. He had used a razor blade repeatedly on his arms and wrists, but was too weak to cut deeply enough. He had climbed into a hot bath, intending to die. When he did not succeed, he had decided to call his friend.

Her voice was calm and apologetic. She explained that although she disapproved of suicide she knew this man as only a friend of many years could. She told me about his cancer and his frustration with a colostomy, and how he was an educated man with a interesting history who had little quality of life left. Then she paused. She felt she must tell me, she finally said, that although her friend was "completely of sound mind" I would likely find him naked if I came to his apartment. He could not cope with the summer heat, she explained.

I concluded that she must be as strange as her friend. And that the whole matter was quite straightforward. I would go to the apartment, dress the man's wounds, do a mental status exam, declare him incompetent and have him brought in to be assessed by psychiatry.

I was met at the door by the patient's soft-spoken friend. Despite her warning, I was startled to see a frail and emaciated man sitting at the kitchen table, completely naked, puffing on a cigar. This won't take long, I thought. I asked him how I could help him and if he knew the date and where he was. With an air of tragic dignity, he smiled at me and replied, "I know that I am a naked old man sitting in front of a young lady doctor. I may look stupid but I assure you I'm not."

He continued to smoke his cigar while he answered my questions accurately and without hesitation. He understood his predicament very well, he said. He was ready to die and was disappointed that his suicide attempt had failed. He emphasized that he was not in any physical pain but had simply had enough. Could I give him a "little tablet" so he could just "go to sleep"? He was not depressed, he explained, but he had outlived his family, could no longer enjoy life and wanted to die with dignity. All of his affairs were in order, he added.

Art Explosion

At that point his friend asked me to see the rest of the apartment. "You'll understand what kind of person he is," she said. I followed her into the living room: two walls lined with shelves held hundreds of books — Russian literature, Japanese history, volumes and volumes of art, the classics of the past 200 years, all categorized by subject and author. On the walls were prints of the Great Masters and framed travel posters. She led me into two more rooms filled with books, sculpture and an extensive music collection. "It has been an education just knowing him," she said.

On a shelf beside his computer a woman smiled from a framed photograph, placed so that the person sitting at the desk could not help but look into her warm brown eyes and be captured by her lively, animated grin. It was the face of a woman made beautiful by a great love.

"That was his wife," his friend said quietly. "He looked after her while she was dying of cancer."

She reached over the desk and picked up a small cloth-bound portfolio tied with a ribbon. In it, insurance policies, tax receipts and legal documents and been meticulously laid out, along with instructions about which of his books would go to charities and which to a few special friends.

I began to feel more uncomfortable with my task. He was a suicidal old man who would probably try to kill himself again. Death is supposed to be the enemy. My responsibility was to protect him from harming himself. But could it be either kind or just to take him from his home during his last days and force him to embrace the indignities of his illness as only hospital care can do?

It was difficult not to remember that across the street from the old man's apartment, where death was perceived as a comfort, lived a family in my practice who had recently lost their 11-year-old son to cancer.

I did not call psychiatry. I consulted with the palliative care team and a chaplain and offered the old man more support and home care, which he accepted with resignation. As I shook his hand, I knew from his penetrating gaze that we understood one another. And then I walked out into the sunshine, feeling at peace with my decision but troubled by my inability to do more.

The old man died of his cancer a few days later, in his own apartment, comforted by his friend and surrounded by the treasures of his life.

Sharon McCutcheon, MD
Sussex, New Brunswick

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What ailed Vincent van Gogh? Explanations of his mental illness have covered the ground from syphilis and heavy metal poisoning to schizophrenia, bipolar disorder, Ménière's disease and epilepsy, where the balance of opinion now seems to rest. Epilepsy was the judgement of Dr. Théophile Peyron, the director of the mental asylum housed in a monastery in Saint-Rémy, Provence, where van Gogh was admitted in May 1889. Four months earlier had occurred his disastrous quarrel with Gauguin and the infamous ear-cutting incident. His rapid recovery at the hospital at Arles surprised everyone, but the townspeople did not want him among them. Nor did van Gogh feel equal to coping on his own; he described himself and his fellow patients at Saint-Rémy as "too thoroughly shattered for life outside."¹ Nonetheless, within days of his arrival he was able to report that he was painting again.

Van Gogh described the asylum's director as "a gouty little man — several years a widower, with very dark spectacles" who "seems to get no great amusement out of his job."¹ Although van Gogh had admitted himself voluntarily, his brother Theo was clearly regarded as the competent decision-maker: "The director mentioned that he had had a letter from you and had written to you; he tells me nothing and I ask him nothing, which is the simplest."¹ The treatment was also simple, consisting of rest and long soaks in stone tubs of water. The food was bad: "It tastes a bit musty, of course, as in a cockroach-infested restaurant in Paris, or in a boarding house. The poor wretches here, having absolutely nothing to do ... have no other daily distraction than to stuff themselves with chick peas, haricot beans, lentils and other groceries and colonial produce, in set amounts and at stated hours. ... [T]he digestion of these foodstuffs offers certain difficulties."² Van Gogh preferred to subsist on soup and bread.

He was sometimes worn down by the difficulty of getting along with his fellow patients, but even more oppressive was the religious atmosphere: "[W]hat annoys me is to keep on seeing these good women [the nuns] who believe in the Virgin of Lourdes and make up things like that, and to think that I am a prisoner under a management of that sort, which very willingly fosters these sickly religious aberrations, when the proper thing would be to cure them."¹

Van Gogh took a view of mental illness that patient advocates have trouble putting across even today: "What comforts me is that I am beginning to look upon madness as a disease like any other and to treat it as such."² His acceptance of the fact that attacks would recur only spurred him to take every opportunity to work, before "a more violent attack [destroys] forever my ability to paint."¹ Despite this fortitude, he accused himself of "cowardice" and wrote that "I know well that healing comes — if one is brave — from within."¹

Long Grass with Butterflies was painted near the end of van Gogh's year at Saint-Rémy, soon after he had suffered another prolonged attack. He reported that when he was able to return to painting in the garden his "lucidity for work returned" and "the brushstrokes [came] like clockwork."³ Yet he longed for the kinder atmosphere and gentler sun of the north. By early summer he was under the care of Dr. Paul Gachet in the countryside of Auvers, which would prove to be the setting of his last paintings and of his death by a self-inflicted bullet wound in July 1890.

Vincent van Gogh, Long Grass with Butterflies, May 1890. Oil on canvas, 64.5 × 81 cm. National Gallery, London (UK)

Long Grass with Butterflies is part of a small, highly focused exhibition entitled Van Gogh's Irises: Masterpiece in Focus on view until September 19 at the National Gallery in Ottawa.

Anne Marie Todkill
Editor, The Left Atrium

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1. Roskill M, editor. The letters of Vincent van Gogh. New York: Atheneum; 1963. p. 317-8.
2. de Leeuw R, editor. The letters of Vincent van Gogh. London: Allen Lane; 1996. p. 443.
3. Bailey CB. Van Gogh's irises: masterpiece in focus. Ottawa: National Gallery of Canada; 1999.

© 1999 Canadian Medical Association