Many Doctors Delay End-of-Life Talks With Terminal Cancer Patients -- Could a Video Help?

Zosia Chustecka

January 20, 2010

January 20, 2009 — Many physicians caring for terminally ill cancer patients find it difficult to discuss end-of-life issues with such patients, and a recent survey has found that most delay these discussions.

"Most physicians report that they would not discuss end-of-life options with terminally ill patients who are feeling well, instead waiting for symptoms or until there are no more treatments to offer." This conclusion, from a survey of 4074 physicians caring for cancer patients across the United States, was reported online January 11 in Cancer.

"It was surprising that so few doctors said they would have this discussion when faced with a patient who had 4 to 6 months to live," said lead researcher Nancy Keating, MD, MPH, from the Department of Health Policy at Harvard Medical School in Boston, Massachusetts. It suggests that they are not following national guidelines, which recommend having such discussions with patients who have a life expectancy of 1 year or less, she added.

"While we didn't question these doctors as to why they would delay this discussion, there are several possible explanations," she said in an interview with Medscape Oncology. Either they disagree with the guidelines, which are based on expert opinion rather than evidence, or they are not comfortable following these guidelines, she said. "Maybe they feel that they don't need to have this discussion right now, that it can wait, or that having this discussion too early could be harmful, with patients losing hope and having worse outcomes, even though there is no evidence to support this."

It does appear that doctors find these discussions difficult.

"It does appear that doctors find these discussions difficult," she continued, suggesting that more education or training would be useful, as would any tools that could help in this process.

One such tool could be a video, as reported in a small study published in the January 10 issue of Journal of Clinical Oncology. A team headed by Angelo Volandes, MD, MPH, from the Massachusetts General Hospital in Boston, used a video to facilitate advanced-care planning in a cohort of patients with malignant glioma, and found that it dramatically influenced patients' choices about less aggressive end-of-life care, compared with verbal discussion alone.

"Using video images to educate patients on various end-of-life interventions and outcomes . . . leads to more informed decision making, and may potentially lead to higher-quality end-of-life care," Dr. Volandes and colleagues conclude.

The study using a video to help with end-of-life discussions is "terrific," said Dr. Keating, and "strategies like this might be really useful in helping with these discussions, assuming of course that physicians are willing to use them."

Survey Responses

The survey carried out by Dr. Keating and colleagues came out of the Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium, which involved more than 10,000 patients diagnosed with lung or colorectal cancer between 2003 and 2005. These patients were treated at large health-maintenance organizations or Veterans Health Administration sites at 5 different sites across the United States, and they were asked to identify physicians who played a key role in their care.

A total of 4074 physicians were surveyed, but the statistical analysis excluded 114 who did not respond to all 4 questions. Approximately 22% were surgeons, 13% were medical oncologists, 6% were radiation oncologists, and 59% were noncancer specialists. Most of the doctors were male (82%), and the mean age was 50 years.

Physicians were asked to assume they were caring for a patient newly diagnosed with metastatic cancer with an estimated 4 to 6 months to live who is currently feeling well. They were asked when, in the course of the patient's illness, they were most likely to bring up subjects such as prognosis, do-not-resuscitate instructions, hospices, and preferred site of death (e.g., home or hospice).

The survey found that:

  • 65% of physicians said they would discuss prognosis "now," whereas 15% said they would have this discussion only if patients or relatives brought it up

  • 44% said they would discuss do-not-resuscitate instructions now, whereas 18% would wait until the patient had symptoms and 26% would wait until there were no more nonpalliative treatments

  • 26% would discuss hospice now, whereas 16% would wait for symptoms and 49% would wait until there were no more nonpalliative treatments

  • 21% would discuss the preferred site of death now, whereas 24% would have this discussion only if the patient brought it up.

The responses show that fewer than half of the physicians would discuss most of these topics now, rather than later, and that a "significant minority" would have these discussions only when the patient or a relative brought the subject up, the researchers note.

A multivariate analysis showed that surgeons and medical oncologists were significantly more likely than noncancer specialists to report discussing prognosis now, but the noncancer specialists were more likely to discuss the other 3 topics now. In addition, younger physicians and those with greater numbers of terminally ill patients were more likely to discuss these topics now, rather than later. "This suggests that doctors who were more recently qualified had better training in this subject, which was hardly discussed when I was at medical school 15 years ago," Dr. Keating said.

Just more than half of the physicians surveyed (55%) said they felt knowledgeable enough to discuss end-of-life options with their terminally ill patients; these were also the physicians who were more likely to report that they would have these discussions now, rather than later. "This shows that many doctors do not feel knowledgeable, and so probably feel uncomfortable discussing these issues," she said.

"More research, both quantitative and qualitative, is needed to understand physicians' reasons for the timing of their discussions," the team concludes. Education and institutional interventions might be needed, they add.

Video Helped With Advanced-Care Planning

The video shown to be useful in these end-of-life discussions was produced by the researchers themselves. Dr. Volandes and colleagues developed the video after input from other experts, including oncologists, critical care intensivists, palliative-care physicians, and medical-ethics experts.

The 6-minute program showed images of what could be expected in 3 different levels of care:

  • life-prolonging care showed images of an intensive care unit with a ventilated patient, clinicians simulating cardiopulmonary resuscitation and intubation, and intravenous medications administered with a venous catheter

  • basic medical care showed images of antibiotics administered by a peripheral venous catheter and a patient wearing a nasal cannula

  • comfort care showed images of a patient in home hospice care receiving pain medications and a patient with a nasal cannula using oxygen at home.

In their study, Dr. Volandes and colleagues tested the video on a group of 23 patients and compared their responses to a matched group of 27 patients who received the same information verbally, without the use of any imagery. All of the patients had malignant glioma, which has an overall poor prognosis, and they were asked to choose which end-of-life care they would prefer when their cancer progressed further.

There were significant differences between the 2 groups (P < .0001). None of the patients who watched the video preferred life-prolonging care, only 4.4% opted for basic medical care, and 91.3% preferred comfort care; the remaining 4.4% were undecided. Among the patients who received a verbal explanation, 25.9% opted for life-pronging care, 51.9% for basic medical care, and 22.2% for comfort care.

"This work succeeds in showing the efficacy of approach in patients with advanced cancer," the researchers note. The results are also consistent with those of several other studies of advanced-care planning in cancer patients, which suggest that "when patients have a better understanding of their goals-of-care options and the likely outcomes, they tend to opt for less aggressive medical care at the end of life."

One of the limitations of the study is that it involved only a small number of patients (n = 50), and that most were white, well educated, and treated at a single teaching hospital. "Thus, our findings are not generalizable to minority groups, less-educated patients, patients in other geographical areas, and patients with other cancers," they write. Further work should include large randomized trials in different patient populations with various cancers and various levels of prognostic uncertainty, and a determination of the optimal timing for when patients should watch such a video, they suggest.

Timing of These Discussions

The question of when to have an end-of-life discussion with terminally ill patients seems to be a crucial one. The discrepancy between what is recommended in guidelines and how doctors really act, as revealed in the survey, "was rather surprising," Dr. Keating said.

"Our findings suggest that different types of physicians have very different views regarding the appropriate timing of these discussions," her team concludes.

Many physicians said they would wait until there are no more nonpalliative treatments available before having these discussions, but at that point it could be too late for patient preferences and values to be addressed, the researchers note.

"Given that the use of chemotherapy at the end of life is increasing, even for cancer generally considered unresponsive to chemotherapy, excessive treatment might delay discussions of end-of-life issues unnecessarily," they say.

This issue was touched upon recently in a study published in the Annals of Oncology (2009;20:1555-1559), which investigated the continuation of chemotherapy even when it was futile at the end of life. One possible explanation is that recommending a new course of chemotherapy to patients is often "an easier option" than discussing the transition to palliative care with patients and their caregivers, the researchers explain. "It is ironic that in both the United States and Australia oncologists receive financial reimbursement for chemotherapy delivery but little or no reimbursement for the time-consuming and emotionally difficult process of family conferences or end-of-life discussions," they add.

Senior author of that paper, Diane Adams, MD, from the Macarthur Cancer Therapy Center in Campbelltown, New South Wales, Australia, was approached by Medscape Oncology for an independent comment. She noted that this lack of financial rebate was not raised by Dr. Keating and colleagues in their discussion, but it can be very relevant for "busy oncologists, depending on how they bill." These end-of-life discussions are time consuming, and "it is sad to say that for some it is quicker to see the patient, and see more patients, without raising these issues when the patient is asymptomatic," she told Medscape Oncology.

But apart from this 1 point, the discussion by Dr. Keating and colleagues "is fabulous and covers so many surrounding areas," and their study is "outstanding," Dr. Adams said. "It's a huge study with a great response rate," she added.

Dr. Adams said "the concept [of a video depicting advanced care] is good, but how to extrapolate that to other tumor groups needs more research." The study was small and was conducted in an unusual cancer patient population, she said, adding that these patients were described as highly educated, so they might not be representative on that front either.

In her interview with Medscape Oncology, Dr. Keating agreed that the lack of remuneration for end-of-life discussions is an important point, but said that this is an emotionally charged subject. When the issue was discussed recently during healthcare reform talks in the United States, it provoked lurid headlines about "doctor death panels."

Dr. Keating also noted that for physicians, the decisions to stop nonpalliative treatment might feel like an admission of failure — that the cancer cannot be cured — and discussing death might feel instinctively uncomfortable to a doctor trained to heal the sick. "Maybe they feel it is not their role to discuss death and dying," she added.

There is also a misconception among cancer patients who often want to "try everything to beat the cancer," without realizing that aggressive treatment could slow tumor growth but not have much impact on the eventual outcome, Dr. Keating added. Maybe there is a need for both parties to reflect on the fact that most advanced cancers are still terminal illnesses, and so the end-of-life scenario does need to be addressed.

More general advice on how to approach end-of-life discussions, although not specifically with cancer patients, is outlined in a paper published in Family Practice Management (2008;15:18-22), as reported by Medscape Medical News. Jerry Old, MD, clinical assistant professor at the University of Kansas School of Medicine in Kansas City, writes: "Knowing when to stop aggressive therapies and embrace symptom management, end-of-life support, and education is noble."

"End-of-life care means reaching patients in their most personal and vulnerable times. When a patient knows death is near, it is a time of tremendous personal growth," Dr. Old writes. "Helping patients during this journey can be one of the most rewarding things physicians do in medicine."

The researchers have disclosed no relevant financial relationships.

Cancer. Published online January 11, 2010. Abstract
J Clin Oncol. 2010;28:305-310. Abstract

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