Few things are harder than watching your spouse die, especially when he’s in the prime of life. That sad situation was made worse for one woman because her husband’s doctors never spoke frankly about his prognosis.
Nora Zamichow began her heartfelt essay in the Los Angeles Times simply and directly:
“There is one word most doctors hate to say: dying.
“Many of them will go to great lengths – even subterfuge – to avoid it.
“Sure, nobody likes to deliver bad news. But shouldn’t physicians have mastered that?”
Of course they should. The practice of medicine is – or should be – as much about taking care of the whole person as it is about the body part. Communication is key to connection, and without connecting you can’t treat someone fully.
Zamichow’s essay referred to a recent study of doctors whose patients were dying; only 11 in 100 of those caregivers said they personally spoke with their patients about their chance of dying.
End-of-life care should be just as excellent as the delivery of a new life. Good medicine is good medicine. (See Patrick’s newsletter, “Dying in America: A Necessary Conversation.”)
Zamichow’s husband, Mark, died at 58 from an inoperable brain tumor. None of his doctors ever told him that he was going to die. But they did tell him, early on, that he might live another five years.
That was before they clearly saw the handwriting on the wall, and instead of reading it to the couple, they offered euphemisms that, as Zamichow wrote, “even I, a former medical reporter, couldn’t decipher. Or they hinted, saying, ‘Treatment isn’t going our way,’ without ruling out the possibility that it might go ‘our way.’ Finally, toward the end, doctors said, ‘Soon consider hospice.'”
Zamichow understood that predicting a window of death is difficult. She got that caregivers don’t want to extinguish hope in a patient or his loved ones. And, like everyone familiar with U.S. health care these days, she knows that doctors often don’t have time “for the kind of conversation that must occur when they forecast death.”
Zamichow pointed to the technological advancements that have changed the art of diagnosis so significantly. “Doctors no longer count on in-depth conversations with patients eliciting intimate details about symptoms,” she observed. “Instead, they consult a battery of test results and scans.”
They type notes into an electronic device during discussions with patients, prompting one doctor Zamichow spoke with to comment, “Intangible things get lost, like talking to patients.”
Zamichow told her husband herself that he was dying, without any professional support, without anyone on hand to answer questions he might have that his wife wouldn’t be able to answer.
That’s just wrong.
Zamichow had learned that her husband was “failing to thrive” only when she attended a meeting in an intensive care conference room with five doctors, only one of whom she had met, briefly. The purpose of the meeting, she learned, was the treatment plan for Mark.
His tumor had been diagnosed weeks earlier, when the discussion had been about radiation and chemotherapy in an effort to buy him more time. But in the ICU conference room, Zamichow recalled, “no one actually used the word ‘dying.’ They said they could no longer help him. One doctor advised hospice. I felt like the air had been knocked out of my lungs. No one had hinted previously that my husband’s situation was so dire. Instead, we had been told about people who managed to live years with a brain tumor.”
How does someone in this situation not feel sandbagged by the very people she’s supposed to trust?
Just two days earlier, the oncologist had been optimistic, mentioning several treatment options, then cheerily telling Zamichow that he was going on vacation and would see them when he returned.
That’s when she called their family doctor, who told her, “Your oncologist has not leveled with you.”
“Those are words, Zamichow wrote, “no one should have to hear.”
The family wondered why they didn’t know Mark was dying until a bunch of strangers in a conference room told Zamichow.
“Was it our obstinate desire to cling to every shred of hope in spite of evidence to the contrary?
“I don’t think so.”
Zamichow’s research yielded the shocking fact that the average four-year medical school program devotes only 17 hours of instruction on death and dying; that in 2013, only three of 49 accredited schools of public health offered a course on end-of-life care.
“Students do not learn more about dying,” Zamichow summarized one report, because death is considered “a medical failure.”
“In effect,” she acknowledged, “we have created a medical system that treats death as a separate event having nothing to do with life.”