One cancer patient calls them "MIA doctors" — doctors who go missing in action when their patients are about to die. Doctors, even with patients...
One cancer patient calls them “MIA doctors” — doctors who go missing in action when their patients are about to die.
Doctors, even with patients they’ve known for years, often avoid saying goodbye, says Dr. Anthony Back, a cancer specialist who teaches young doctors communication skills. And their inability to say those little words often leaves patients feeling perplexed and abandoned at an especially vulnerable time.
Back, who wrote about the problem in last month’s issue of the Annals of Internal Medicine, said he was stunned when he asked his students, all cancer specialists in their last stages of training, if they acknowledge to patients about to die that they won’t be seeing them again.
“They gasped and said, ‘Oh! I don’t think I could do that!’ ” recalled Back, who works at the Seattle Cancer Care Alliance.
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The doctors’ answers were particularly troubling to Back because these specialists, completing a fellowship, were seeing many terminally ill cancer patients. Although most of them probably had a patient die every week, he said, they were unable to have that final conversation acknowledging the end.
“You and I would think it’s a basic kind of courtesy, a basic kind of respect for a person you’re treating — respect for them as an individual,” Back said. “Somehow, that’s just gotten lost in medical training. … They’ve never seen anybody do it.”
This year, Back introduced a new section in the communications course he’s taught for four years: He’s helping the doctors learn how to say goodbye, suggesting approaches and asking his doctor-students to practice with actors who play the role of patients.
Studies show that dying patients say one element of a “good death” is the feeling they’ve been “contributing to others,” Back tells the doctors.
So, he suggests, how about telling their patients how their time together has contributed to the doctor’s learning and ability to better care for patients in the future?
Doctors give a variety of reasons for avoiding goodbyes, said Back, who has a research grant to teach the workshop on communication as part of a fellowship program for cancer specialists from around the country.
“They’re afraid they’re going to cry,” Back said. Or feel that they’ve failed. Or that the patient will cry. Or that maybe it’s not really goodbye, and that if there’s another post-goodbye round of treatment, it might be awkward.
Mostly, it’s medical culture, which is a strong force, even for younger doctors. “We’re kind of programmed to think that if the person dies, we’ve failed,” Back said. “But it turns out a lot of the time we can’t cure people.”
For patients, having their doctor go MIA at the end of their lives is “a horrible thing to have happen,” says Jeanne Sather, a cancer patient who has interviewed others for a book she’s writing. “It feels like a desertion. … It’s very painful. They feel abandoned.”
One family she talked to described how a family member’s doctor, who had cared for her for 25 years, went MIA when his patient died. “Just nothing. No acknowledgment, no note to the family, no nothing,” Sather said. “It’s been several years, and they’re still upset about it.”
Sather said she’s heard all the reasons why doctors shy away from the conversation, but she’s not inclined to let them off the hook. “My point of view on this is: Tough luck! I deserve better than a doctor who walks away from me.”
While doctors sometimes say they worry that dying patients will blame them, Sather said: “For me, as a cancer patient, I want an opportunity to say thank you to my doctor when I’m at the end of my life. I want the opportunity to say, ‘I don’t think this is a failure; I appreciate what you’ve done for me.’ ”
Doctors also worry that they’ll get “too emotional,” Back said. He recalls one oncology “fellow” who got a “little teary” talking to a terminal-cancer patient. She was embarrassed and excused herself, Back recalled, believing that her behavior wasn’t “professional.”
“Actually, the patient was incredibly touched that she cared enough about him to be teary. He said to the nurse later, ‘Gosh, she really cared a lot about me.’ It was an incredible gift to him,” Back said.
“Most families are eager to have a little connection with this person they’ve worked with for a long time. I think it’s important to have this closure, for the patient and the physician as well.”
There is very little research about what doctors do or don’t do — or why, Back said. For the most part, he’s collected his information as anecdotes from doctors and patients, and from his experiences teaching young doctors.
In his article, Back recounts a story told by Alan Shapiro, who watched as the doctor visited his sister, who was dying of breast cancer. As the sister watched, the doctor checked the morphine pump. “Very good,” the doctor said.
“Then he checked her chart and after another moment said, ‘So.’ Then more silence. Then his beeper went off. … ” Shapiro recounted, and the doctor said he had to go, that he’d be back in a day or so to see how she was doing.
“He never so much as looked at me as he walked out. That was the last time we would see him.”
In the paper, co-written with three other experts in end-of-life communication, Back suggests a seven-step process for “saying goodbye” to help doctors, many of whom seem more comfortable interpreting the numbers on a lab report than a patient’s mood. The step-by-step guide starts with choosing an appropriate time and place, and ends with advising them to reflect on their work with the patient.
Many doctors’ training created the expectation that deaths aren’t discussed much, Back and the others wrote, “that physicians cope by being silent and strong, and that avoiding death is part of self-preservation.”
But such responses may not be good for a doctor’s professional or personal growth, Back said.
Once doctors start having these end-of-life conversations, he predicted, they’ll realize it’s not only helpful for patients but “tremendously gratifying” for themselves, as well.
“There’s something quite renewing about making this contact with a family member or the patient,” Back said. “It’s these connections you remember. … I have this whole collection of these little wonderful memories about people, and that’s renewing for me.”
Carol M. Ostrom: 206-464-2249 or firstname.lastname@example.org