SAN FRANCISCO—A new study questions whether doctors providing end-of-life care are “prolonging life, or are we prolonging the dying process,” said lead researcher V.J. Periyakoil, MD, who directs Stanford Medical School’s Palliative Care Education and Training program.
The study, titled “Do Unto Others,” reveals that even though an overwhelming majority of physicians Stanford surveyed (88.3 percent) would reject unnecessarily invasive treatment for themselves and opt instead for comfort care, patients in the United States continue to spend their last days receiving high-intensity care that is often ineffective and sometimes ordered contrary to patients’ wishes.
The nearly 1,100 doctors who participated—over half of them women physicians and nearly half of them from immigrant and minority communities—were also highly supportive of patients filling out advance directives that state whether they’d prefer intensive treatment or palliative comfort care, if they become incapacitated at life’s end.
Doctors, patients want the same care
The Stanford study, published last week in the respected journal PLOS One, cites research showing that most Americans want the same care doctors do for themselves: “More than 80 percent of patients say that they wish to avoid hospitalizations and high-intensity care at the end-of-life, but their wishes are often overridden.”
Despite that knowledge, says the Stanford report, high-tech treatments have increased dramatically in recent years. Medical data show a 12 percent jump just from 2003 to 2007, in the number of Medicare patients who saw 10 or more doctors in their last six months of life—mainly medical specialists—and spent more days in intensive care units.
Not only is most high-tech care unwanted, says the Stanford study; it’s enormously costly. Medicare spends a quarter of its budget on services in the last year of life. And 40 percent of that expense is on patients within the last 30 days of life.
In fact, said Periyakoil, those receiving high-intensity care in the last six months of life do not survive longer on average than people who get lower-intensity care. Instead, her study reports, starting palliative care sooner after a diagnosis of serious or terminal illness helps patients get control of their pain and their families to reduce unpredictable emergencies.
More ethnic and women doctors
Stanford’s study, the largest of its kind, included physicians at two California academic medical centers. Unlike a similar smaller 1989 study that surveyed mostly white physicians, it included enough women doctors and physicians from different backgrounds for the researchers to be able to compare results across racial and ethnic demographics.
Periyakoil said in an interview, “Ethnic doctors are in a unique position to be able to advocate for excellent palliative care and early access to it for their patients. And also to be able to explain within their community that high-intensity treatments can become ineffective.”
There were significant, but modest differences among those in the Stanford sample. African-American and white physicians expressed equal strong support for their patients’ use of written advance directives stating their treatment preferences.
Somewhat less supportive of advance care planning documents were Asian medical practitioners, followed by Latino doctors’ stronger resistance to such documents.
Periyakoil emphasized, though, that “almost everyone was positive towards advance directives.”
Also, women tended to be more favorable toward use of advance directives than men. And doctors in more general or primary care areas, such as pediatrics or gynecology, were more positive toward the written plans than surgeons and other medical specialists.
The study adds that doctors who were less supportive of advance directives were more likely to opt for “full-code” intensive treatment for themselves and were less likely to opt for organ donation.
“Tipping point” when treatment causes harm
Although patients and family members may worry they won’t receive every treatment that might restore their health, Periyakoil, a geriatric doctor, said, “The truth is completely the opposite. Doctors tend to do too much.” A primary reason doctors forge ahead too far is that they are trained “to be optimistic” about finding a cure.
Severe disease, she explained, often reaches “a tipping point where the treatment becomes more burdensome than the illness itself.” Medical education needs to train doctors to recognize such tipping points and coach patients and improve patients’ understanding “that we are not withholding helpful treatments – but harmful, burdensome treatments.”
That physicians select do-not-prolong-life orders for themselves is unsurprising, says the Stanford study, because so may medical practitioners “recurrently witness the tremendous suffering their terminally ill patients experience as they undergo ineffective, high-intensity treatments at the end of life.”
Yet, says the study, a key factor causing many doctors to override their patients’ stated preference—a factor that can overtake a physician’s own ethnic or cultural values—is the culture of “biomedicine with its default set to maximal interventions for all patients, irrespective of the effectiveness of doing so.”
Periyakoil noted, “The culture of medicine is so intense and powerful that it mutes the effect that your own ethnicity might have. The more you’re in training, the more acculturated you are to biomedicine, you may stop thinking [of other things], because the culture is so automated, you react to numbers.”
System rewards high-tech care
Another major factor perpetuating the disparity between what doctors wish for themselves and chose for their patients, says the study, is that the “current fiscal system rewards hospitals and doctors for medical procedures and providing high-intensity care to terminally ill persons.”
“This is a big puzzle to me,” stated Periyakoil. “We don’t train doctors to talk to patients and we don’t reward them for doing so, meaning there’s no reimbursement. We train them to do treatments that are high intensity, and we reward doctors for doing procedures. But we say we want them to talk to patients?”
She went on, “There are all kinds of studies showing that doctors don’t let patients talk, that they are not good listeners. We didn’t train them to do any of that.”
One provision of the 2009 Affordable Care Act would have reimbursed physicians for discussing a patient’s end-of-life treatment preferences every five years, if the person chose to have that conversation. But that provision was excised from the bill when critics labeled it a pathway to “death panels.”
The Stanford findings highlight the need for educational and policy changes to improve doctors’ attitudes towards advance directives. Periyakoil stressed, “I’d like there to be more self-reflection and awareness about how we’ve been raised, who we are, and how that influences how we think.”
“First, do not abandon” patients
As a palliative care physician dedicated to easing pain in severely ill patients, Periyakoil asserted that while doctors are famously taught, “First, do no harm, to her “the most important thing is: First, do not abandon.”
She explained that physicians need to stay with the process of healing, “even if it’s suboptimal, even if you don’t agree with your patient, or your patient doesn’t agree with you.”
Periyakoil said, she always begins by discussing every possible treatment option a patient or family members could consider, but then separately states her opinion of the better choice.
“So if the patient [or family] opts for high-intensity treatment anyway, I don’t try to impose my will on them,” she said. Instead she will tell them that she doesn’t think they’ve made the best choice, but make it clear that, “I’m still here and I will still support you.”
Periyakoil tells her medical students, “What matters to patients is an important question. So ask people to think about what matters to them, what makes life meaningful to them at any given point.” That talk can guide both doctors and patients to the best outcome at life’s most difficult moment.
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