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CANCER study: Physicians and EOL discussions
Physicians don't discuss EOL within guidelines
Most physicians reported in a national survey that they would discuss end-of-life options with a terminally ill patient only when there were no more treatments to offer that patient — not when the patient was still feeling well, according to a study published online in CANCER, a peer-reviewed journal of the American Cancer Society, in January.1
Based on other studies that suggest cancer patients get a lot of aggressive care at the end of life — and through their own experiences treating cancer patients — the designers of the study were "suspicious that doctors might not be talking about end-of-life issues," Nancy L. Keating, MD, MPH, an author of the study, tells Medical Ethics Advisor.
Also, the researchers took a cue from other literature, which suggests that many patients really don't know how sick they are, she says.
"We were quite surprised to find such low rates of discussion of some of these end-of-life issues in patients [who] had a life expectancy of four to six months," Keating notes.
National end-of-life guidelines usually recommend that such end-of-life discussions take place when a patient has less than a year to live, she explains.
The researchers, Keating says, believe there are two possible explanations: One is that physicians aren't aware of these national guidelines; the other is that they are aware of the guidelines but disagree with them.
It is possible, she says, that physicians often decide on their own that their patients aren't ready to discuss the end of life, or they believe that patients won't take the prognosis or discussion well, and as a result they will lose hope and give up.
"I personally think that patients have a right to have these discussions early, when they're really able to and capable of [understanding]," Keating says. "But there aren't, and there haven't been, excellent studies randomizing people to hearing about [these matters] early or late to know what happens."
Difficult conversations are, well, difficult
Keating says another explanation for why physicians don't have end-of-life discussions with their patients is that these are difficult conversations to have.
"Unfortunately, we didn't know what our results would be to have follow-up questions on that, so we can't tell you anymore about that," Keating says. "We need more research to try to find out why doctors aren't having these discussions."
Keating suggests that the best guess for why they aren't having these discussions is that doctors tend to focus on treatment.
One finding from the survey was that 66% of physicians surveyed discussed prognosis early, or when the patient had four to six months to live.
"So, we said, are doctors using this as an opportunity to have other discussions about hospice and DNR status, etc.," she explains. "And in fact, there were no differences in the rates of doctors discussing these other things who did or did not discuss prognosis early, which leads us to think that the prognosis is a discussion that the doctors use as an opportunity to discuss treatment."
"They might say, 'Well, the average person might live for six months with your condition, but if we treat you with this drug, the average person will live for eight months," Keating says.
Since most of the doctors indicated they would not discuss end-of-life options with the patient unless there were no more treatments to offer, Keating takes issue with that approach.
"In patients with metastatic disease, what does it really mean that there are no more treatments to offer? I mean, none of the treatments are curative in the cancers that were studying, or pretty much none. So, most of these patients really do have relatively few options, and I think they may not be understanding that any treatment for them is not going to be curative."
Oftentimes, when these conversations are delayed, in her experience, Keating says, the patient gets chemotherapy, then the patient gets sick from chemotherapy and goes to the hospital, where he or she get intubated due to pneumonia.
Keating maintains that "if the patient really understood their prognosis, they might not want that."
Physicians are trained to treat
The real culprit for why these conversations occur later rather than sooner is that physicians in medical schools primarily are trained to treat rather than talk — but that appears to be changing.
"I think, by and large, doctors are trained to treat patients, and to make patients better — to cure patients. And we've traditionally had very little training and experience in focusing on improving the quality of death," Keating explains. "And I think a lot of doctors feel like they've failed, if they can't cure someone or can't continue treating someone."
Keating notes that about 20% of patients in the Medicare population are admitted to the ICU in the last month of life.
"I think there's lots of evidence out there that many patients get lots and lots of courses of chemotherapy at the end of life," she says. "Many patients are getting new chemotherapy within 30 days of death, and all of these things suggest that we really are possibly being too aggressive with the way that we're treating people."
An encouraging sign related to this issue is that many medical schools now have structured classes on communication covering topics such as end-of-life options. Also, the survey found that more recently trained doctors were more likely to have end-of-life discussions with their patients, Keating notes.
Timing is sensitive to patients
James A. Tulsky, MD, director of the Palliative Care Center at Duke University Medical Center, in Durham, NC, says end-of-life discussions can begin when someone is diagnosed with a life-limiting illness.
"Part of it is, it's very important to find out what the patient wants," Tulsky says. "You know, if you look at surveys of patients, they have very different preferences for when they want to talk about this. Some people say, 'As soon as I get diagnosed with metastatic disease, for example, I want to have a discussion about end of life.' Other people will say, 'Only when I am a few weeks away from death do I want to have a discussion about end of life.'"
Physicians are increasingly trained to ask patients questions — and to listen to their answers.
"One of the things that we train people to do is to ask patients and to say to somebody, 'One of the things I would like to talk with you about is decisions you would face in the future — concerns about the future. Is now a good time to talk about this? Would you like to hear about prognosis? Would you like to hear what we expect to happen with this illness — or would you rather not? People will [sometimes] say, 'I'm not ready to talk about that right now.' And then that's their choice," Tulsky says.