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Silence can be harmful to patients, their loved ones, and doctors within the contexts of illness and bereavement. I draw from my experience with my son's illness and death to discuss five forms of silence--the silence around the experience of critical illness; the silence between life and death; the silence of doctors; the silence of the dead, and the silence of the ill--and of speech that may emerge in response to these silences.
Some time ago I wrote an essay inspired by a lack of contact from my son's doctors after his death on a paediatric intensive care unit. I wrote about how silence can destroy trust between surviving family members and doctors and can lead to lawsuits or the contemplation of lawsuits. (1) (The author has already told part of Jesse's story in Medical Humanities, as well as in other literature he mentions. (2)) After finishing that essay I reflected further on the theme of silence in regard to patients, family members or other loved ones, and doctors. Since my reflections here come by way of my experience with my son, I will start with him.
Jesse Harlan-Rowe was born in 1975. As an infant he had hydrocephalus, a condition in which the ventricles, spaces in the brain that produce and house cerebrospinal fluid and that cushion the brain from the otherwise violent motions of standing up, turning, and walking, do not drain off their excess fluid into the blood but, instead, become engorged. Symptoms of hydrocephalus include an enlarged head, lethargy, and vomiting. The standard treatment for this condition is a metal shunt through the skull at the back of the head connected to a tube, inserted under the skin, that drains excess fluid into the abdominal cavity. Without such treatment the head becomes even more enlarged as the swollen ventricles squeeze the brain, and the child may die at an early age.
Jesse had three operations for hydrocephalus in the first year and a half of his life and was in remission for the rest of it, although we, his parents, worried and watched and held our breaths during his annual check ups with his neurosurgeon. In 1991 Jesse was diagnosed with ulcerative colitis. In 1992 he was diagnosed with a mild case of sclerosing cholangitis, a scarring and narrowing of the bile ducts going into the liver. In 1993 an arteriogram performed before a forthcoming operation for colitis revealed early stage cirrhosis of the liver. In 1994 he was put on a waiting list for a liver transplant at a hospital in New York City, and in early May 1995 Jesse received his transplant. Four days later he was taken back into surgery with a fever and excruciating abdominal pain. His surgeons discovered a perforation in his intestine inadvertently caused during transplant surgery by the difficult task of cutting through adhesions, or scar tissue, that had built up after his colitis surgery two years earlier. Peritonitis had set in, to be followed swiftly by sepsis and multi-organ failure. To his doctor's amazement, Jesse rallied and received a second transplant, but another perforation, this time a result of his weakened condition, and another bout of sepsis, followed. He rallied again and there was talk of a third transplant until a sudden downturn, with another bout of sepsis, occurred. He died in August 1995 after a total of thirteen operations, including two liver transplants and a splenectomy.
Jesse was a talented artist. He worked with the rudest of equipment--a dull pencil and the blank side of a used sheet of typing paper--and under the most casual of conditions--sitting at the kitchen table, propping a few sheets of paper on his lap in bed, or sitting in a chair on our deck off the kitchen. He was quiet, but had a quick wit when he did talk and an amazing facility for instantaneously milking a phrase for any pun or double entendre it could possibly yield. And he had a shy vulnerability that moved many people to be protective of him. The flip side of this vulnerability was his refusal or inability, with rare exceptions, to talk about himself and his hopes and fears. But Jesse had a quiet strength, too, and a great courage that, I think, he hammered out in the furnace of a great fear about whether his body would carry him safely into adulthood. His loyalties to his friends and those he admired, including athletes whose bodies did not betray them, were fierce. And he had a high threshold for pain. (3)
My further thoughts about silence and modern medicine started with Jesse and his unruly body. There were Jesse's characteristic silence as an individual, the enforced silence of intubation and then tracheotomy during his 1995 hospitalisation, and the baffling metaphorical …