Many physicians who care for patients with cancer do not discuss end-of-life issues with those who are terminally ill but still free of symptoms, despite guidelines that recommend doing so as soon as possible.
That was the conclusion of a study led by Nancy L. Keating, MD, MPH, Associate Professor of Medicine and of Health Care Policy at Harvard Medical School and Associate Physician at Brigham and Women's Hospital, published in the journal Cancer.
In the nationwide survey, physicians were asked about the timing of their discussions of prognosis, do-not-resuscitate (DNR) status, hospice, and preferred site of death with patients estimated to have only four to six months to live.
Among 4,074 respondents, 65%, reported that they would discuss prognosis with their patients immediately. Many fewer physicians reported that they would discuss the other aspects of end-of-life care right away: DNR status (44%), hospice (26%), and preferred site of death (21%).
Most physicians reported that they would wait for patients to show symptoms or until all treatment options had been exhausted.
Younger Physicians More Likely to Have Such Discussions
The study also found that younger physicians were more likely to discuss prognosis, DNR status, hospice, and preferred site of death. Surgeons and oncologists were more likely than other specialists to discuss prognosis immediately, and those who specialized in areas other than oncology were more likely to discuss the other end-of-life issues right away.
However, even among those who would discuss prognosis immediately, only half reported they would also discuss DNR status “now,” and only one-third would discuss hospice or preferred site of death “now.”
According to the investigators, this finding “suggests that discussions of prognosis are not synonymous with advance care planning. Physicians may instead be using discussions of prognosis to initiate discussions about potential treatments.”
The physicians who participated in the survey were drawn from those who had treated patients enrolled in a large multiregional study conducted by the Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium. The population-based cohort included more than 10,000 patients diagnosed with lung or colorectal cancer between 2003 and 2005, who lived in Northern California, Los Angeles County, North Carolina, Iowa, or Alabama, or who received care in one of five large health maintenance organizations or 15 Veterans Health Administration sites.
The physicians had filled one or more key roles in the patients' care, including providing surgery, chemotherapy, or radiation therapy (or discussing these treatments for patients who were not treated); referring patients to these key providers; helping to make treatment decisions; or knowing if the patient had symptoms related to their cancer or its treatment.
Physician data were collected in 2005 and 2006.
In a telephone interview, Dr. Keating said her previous research had examined a broad range of issues related to the delivery of care to cancer patients, often with a focus on how patients and physicians communicate or on how patients' and physicians' beliefs influence treatment decisions.
“Recently, I've had a growing interest in understanding factors that influence variations in end-of-life care, and based on the literature, I have an underlying belief that many patients don't learn about options or don't talk about end-of-life issues until it's very late,” she said.
Dr. Keating noted that many patients who continue to get treatment after treatment for metastatic cancer have unrealistic expectations—“hoping and thinking that they might beat the cancer, whereas in the vast majority of these cases, they're just getting another round of palliative chemotherapy that might prolong their life for a limited time but is not going to alter the course of the disease.”
Researchers Were Surprised by the Results
Dr. Keating said she and her colleagues conducted the study because data on physician characteristics that may influence the timing of discussions of end-of-life care were lacking.
Of the study's findings, she said, “We were surprised that so few doctors were talking about these things up front with terminally ill patients,” especially because existing guidelines say that conversations about end-of-life care options should take place early in the patient's treatment.
“This suggests to me that physicians don't agree with these guidelines or, if they agree with them, they still put the discussions off because they find them difficult.”
She also noted that, given how few physicians reported that they would discuss end-of-life care options immediately, she doubted that the physicians' responses were strongly determined by “social desirability bias”—i.e., the tendency among survey participants to give the answer they assume is the “right” one, rather than reporting what they actually do.
Highlighting the finding that younger doctors are more likely to initiate conversations about end-of-life care options immediately, Dr. Keating said that this may reflect more discussion about palliative care issues earlier in their training—“Such training didn't exist 10 to 15 years ago. I never learned about this kind of issue in medical school. Now medical schools are trying to address these issues, so that may be influencing the younger generation of doctors.”
The study also found that discussions of all treatment options were most common in the Veterans Health Administration and the HMO sites, which may suggest a less-intensive approach to end-of-life care than is usually found outside managed-care settings, she said, adding that this finding may also reflect the ability of integrated organizations to influence behavioral norms of their physicians.
Dr. Keating also noted that, in another study, she and her colleagues are now in the process of linking physician data to patient data, to test whether patients who are treated by physicians who report discussing end-of-life care options earlier have better experiences as they approach the end of life.
‘The Deeper Issue is Hope’
Although aggressive chemotherapy treatments at the end of life are becoming more common, substantially increasing the cost of care and newer chemotherapeutic agents are less toxic, reducing the risks of repeated treatment, the reality is that they may improve quality of life somewhat but still not prolong life, she said.
The questions her research findings raise—for example, “How does the physician decide that there are no more treatment options? When do they decide enough is enough?”—are important to discuss in the context of the larger debate about health care reform, she said.
“At what cost should we, as a society, be giving yet another round of treatment? One side of the argument is, ‘If we can improve quality of life so that the limited amount of time patients have left is better, it's worth anything.’ And then other people say, ‘Wouldn't we be better off getting better basic diabetes care to our patients rather than spending extraordinary amounts of money on people who have only a few more months to live?' People don't all come down on one side of that argument.”
Dr. Keating and others also question the assumption that to do anything less than fight the cancer aggressively to the very end is to abandon the patient, an assumption many physicians seem to share.
Janet Abrahm, MD, Associate Professor of Medicine at Harvard Medical School and the Director of the Pain and Palliative Care Program at Dana-Farber Cancer Institute, explained that aggressive treatment is not the only way to provide care and support. “The deeper issue is hope,” she said.
Trained as an oncologist before specializing in palliative care, Dr. Abrahm, who was not involved in the study, explained in an interview that she sees the problems of communicating about end-of-life care from both the physician's perspective and the patient's. She said she was not surprised by the study's findings.
“Physicians should realize that patients and families have a lot of work to do when they know that time is short. They may have people they need to say goodbye to, or to forgive. They may have an album they want to finish or a trip they want to take. If the physician could only say, ‘Understanding you and what your hopes are, and knowing that we've been through many treatments together, I know the burden of another round of chemotherapy will be much greater than the benefit. You need energy for the things you still want to accomplish. Let me help you with that.’”
She added that physicians “need to be there so that patients don't feel that they failed the doctor,” noting that this feeling of “letting the doctor down” often affects patients who are considering foregoing further treatment and can complicate communication about end-of-life care.
More Education about Open Communication
Dr. Abrahm said that the study by Keating and colleagues underscores the need for “better education on the benefit of open communication with your patients on end-of-life issues, and the benefit of having palliative care colleagues in your institution to help train young doctors and partner with older doctors who haven't been trained in communicating about these issues.
“Palliative care specialists should be available to the oncologist and can even be there with the oncologist for the tough talks. We can make this better for patients and families if we're able to share our expertise and collaborate.”
A Way Out of a Paradox
Asked for his opinion, R. Sean Morrison, MD, Director of the National Palliative Care Research Center and the Hermann Merkin Professor of Palliative Care at Mount Sinai School of Medicine in New York City, agreed that discussions about end-of-life care are difficult and that, until recently, physicians haven't been trained in how to conduct them.
In a telephone interview, Dr. Morrison remarked on a “paradox” that also complicates discussions of end-of-life care: “Patients and families often want to have these conversations but feel that, if the discussions were important, the physician would bring them up; physicians, on the other hand, also say these conversations are important, but say that they're waiting for patients and families to bring them up.”
He said that his feeling is that as a doctor, it's his role to help patients and their families through the course of a difficult illness, so it's his responsibility to raise issues not only around treatment but also around the goals of care and patients' wishes.
“That may include hospice and has to include an understanding of prognosis, because you can't make informed decisions unless you have that understanding. And it means raising even more difficult issues, such as, if the treatment doesn't go the way that we hoped, we want to help patients plan for the worst, which might also mean planning for the way they'd like to die.”
Citing the finding that younger physicians were more likely to discuss end-of-life care immediately, Dr. Morrison said, “What's encouraging about this study is that it reflects changes in medical education and increasing awareness of palliative care. Just as I've had to go back and learn about new developments in chemotherapy that didn't exist when I was a medical student, physicians have to go back and learn communication skills. These skills can be taught. You can't dismiss the importance of learning new communication skills.”
Good Model: EPEC-O
At the end of their article, Dr. Keating and colleagues pointed to programs such as the Education for Physicians on End-of-Life Care—Oncology as providing a promising model for influencing behavior change. The EPEC Project at Northwestern University's Feinberg School of Medicine developed this curriculum, with funding from the National Cancer Institute and the Lance Armstrong Foundation.
The American Society of Clinical Oncology and the Oncology Nursing Society are partners in disseminating the EPEC-O curriculum, and more information is available at www.cancer.gov/aboutnci/epeco.
Many Strong Threads
To illustrate the role of palliative care at the end of life, Janet Abrahm, MD, Director of the Pain and Palliative Care Program at Dana-Farber Cancer Institute, commissioned an artist to develop a set of visual representations of the relationship between physician and patient.
In the first series, a thick red rope connects the two, symbolizing the hope of a cure through aggressive treatment. As treatment begins, physician and patient are on level ground with the red rope between them; as chemotherapy becomes less effective, the patient stands on a progressively steeper slope and the tension on the rope increases. Eventually, as treatment fails, the patient or physician has to let go of the rope—or the rope snaps and the physician is left holding loose strands.
In a second series, the rope between patient and physician has multicolored strands, representing the different ways that the physician can offer the patient the hope of a better quality of life without aggressive treatment.
“The patient is better supported emotionally and psychologically when the doctor knows that there are so many other strong threads in that rope between them,” she said.