The question is whether patients know that they have choices and really understand what the options are. There are often misperceptions that when a clinician brings up end-of-life care, it is because he or she has “given up on” the patient.
“People think when you talk about end-of-life care that means ‘We’re going to give you morphine until you go into oblivion, and then you die,’” says Debbie Miller-Saultz, DNP, FNP-BC, of the Department of Pain Medicine and Palliative Care at Beth-Israel Medical Center in New York City. “And people think the morphine is causing someone to die faster. But all of those myths are really quelled when you talk to people who have palliative care, because they are offered services in a way that is timely and that provides much more support. People aren’t distressed or living in pain.”
By way of evidence, Miller-Saultz cites a study published last August in the New England Journal of Medicine (2010;363:733-742). Researchers at Massachusetts General Hospital randomized patients with metastatic non–small cell lung cancer to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone.
Patients who received early palliative care showed significant improvements in quality of life and mood, compared to their counterparts. Furthermore, while fewer patients in the palliative care group underwent aggressive end-of-life care (eg, chemotherapy within 14 days of death), median survival was higher for them than for patients in the oncologic care–only group (11.6 months vs 8.9 months).
Temel and colleagues said their results “offer great promise for alleviating distress in patients with metastatic disease and addressing critical concerns regarding the use of health care services at the end of life.”
A Tough Talk to Have
Despite such positive findings, hospice remains an underutilized resource; the average length of stay is less than two weeks. “The reality is, the hospice literature shows that people get into hospice too late,” says Segal-Gidan.
In New York State, the average length of stay in hospice is 11 days. “People have end-of-life issues and disease longer than 11 days,” says Miller-Saultz. “So that’s a big part of the problem.”
Clearly, this is part of the impetus for legislative efforts such as those in California and New York. The implication of these laws is that, left to their own devices, clinicians are not providing terminally ill patients with essential information about the services available to them. Physicians in particular have often been criticized by advocates of palliative care and hospice for pushing aggressive treatments and dismissing the other options as “not real medicine.”
Nurses’ training may make them more receptive to alternatives. “We’re not schooled to ‘cure,’ that everything you do is driven to cure,” Miller-Saultz says. “You palliate. You do pain and symptom management. To me, it’s really no different from what we do anyway.”
That may change as medical schools try to incorporate more on end-of-life care into their curricula. But knowing you need to have these conversations—and in some cases being mandated to have them—does not make the discussion any easier.
Ayers considers herself fortunate to live and work in a relatively isolated area of California, centered around Eureka. The medical/nursing professionals are used to working together and do a lot of community outreach. When the local St. Joseph’s Hospital surveyed patients and providers, for example, they discovered that patients felt they weren’t getting information about the end of their lives, and clinicians said the hospital was not the right setting to deliver that information.
“It was just too late, it was too chaotic, and the patients were too upset,” Ayers explains. “It wasn’t the right time to be having that conversation.”
From this finding came the Physician Communication Initiative (it was named before the NPs got involved). The group held a series of dinners at a physician’s house “to talk about these issues, what is tough about it, how do you do it, how do you work it into the conversation,” Ayers says, “and how can we do it better.”
The Only Certainty Is …
While not everyone lives in that kind of community, Ayers suggests clinicians in other areas reach out to local medical and nursing groups, hospice services, or other community groups that may have an interest in educating people about what palliative care and end-of-life services are available locally. Major organizations also have resources on their Web sites that may help clinicians prepare for conversations with patients (see box).
A lot depends on context. Segal-Gidan works with patients who have Alzheimer’s disease, dementia, or other neurologic problems. “I’m able to bring up end-of-life care in the context of, say, ‘You’ve had a stroke, and you’re more likely to have another one. We hope not, but if so, let’s talk about what you would want to happen,’” she says. “When people are elderly and they have multiple chronic illnesses or a degenerative disease, people realize they’re coming to the end of their life. And in some ways, these discussions are more likely to happen.”