Begin End-of-Life Conversations When Diagnosing Metastatic Disease

Meg Barbor, MPH

March 2018, Vol 8, No 3 - Palliative Care


Discussions about prognosis, transitions to palliative care, and the end of life are—to say the least—challenging for patients and providers. But effective, honest, and supportive communications are keys to good clinical care and informed decision-­making, according to Dame Lesley Fallowfield, FMedSci, DPhil, Professor of Psycho Oncology, Sussex Health Outcomes Research & Education in Cancer, University of Sussex, Brighton, England.

“The end-of-life conversation should not be happening at the end of life. This is a conversation we should be building up to the moment that someone is diagnosed with metastatic disease,” she said at the 2017 ESMO International Consensus Conference for Advanced Breast Cancer in Lisbon, Portugal.

“If we’re going to give patients and their families sensible choices, we have to get much better at giving them information and, in particular, giving them the prognosis,” Dr Fallowfield said.

Why the Barriers to Open Disclosure?

Talking to patients and their family about the end of life is never easy, and it can be even more difficult when the patient and provider have built a relationship over the course of several lines of therapy. A lack of honesty about the therapeutic benefits of treatment early on in the relationship can compound this problem.

“I do believe that most healthcare professionals are far too nihilistic about the genuine benefits of good-quality supportive and palliative care,” Dr Fallowfield asserted.

Fear of distressing the patient, time pressures, and uncertainty about the patient’s disease trajectory can contribute to a lack of open disclosure about a prognosis. “But I think sometimes it’s because healthcare professionals feel they’re failing as doctors if they’re not offering a cure,” she suggested, citing a lack of communication skills training for physicians as a contributing factor.

Many of the novel treatments in metastatic breast cancer offer improved progression-free survival (PFS) and overall survival (OS) benefits, but many also come with unpleasant toxicities and serious side effects that are not always systematically and appropriately charted. The true benefits of some “miracle drugs” are often modest or uncertain as a result of limited follow-up studies.

“We have to focus on whether or not any lengthier survival time is worthwhile,” she said. “Indeed, how much survival benefit is needed for patients and their family to trade off the disadvantages and burdens associated with treatment?”

Much of the research suggesting that patients will accept high toxicity for minimal benefit is flawed; therefore, information regarding survival and quality of life, with and without anticancer treatment, is crucial and will undoubtedly influence patient preferences, she emphasized.

To alleviate time pressures, Dr Fallowfield recommends the use of communication aids in clinics. The “Help-Hurt Tool” clearly illustrates to a patient—on a scale of 1 to 5—where a certain therapy falls in terms of benefits and potential side effects.

Denial of Death in Western Culture

“Let’s get down to the nitty-gritty. In modern Western cultures, most of us have an inclination to deny death, and to instead celebrate new medical advances,” Dr Fallowfield said. “Therefore, healthcare professionals and patients often harbor quite unrealistic expectations about the likely therapeutic benefits of the potions and lotions being prescribed.”

A failure to prognosticate is not only about unpredictability. Studies have shown that the longer a physician has known a patient, the more likely he or she is to overestimate that patient’s survival. Therefore, “doing something” behaviors result, such as ordering a few extra scans or another line of chemotherapy, instead of those honest, painful, and necessary conversations: telling a patient that he or she has a limited time and that anticancer treatments are probably not going to help anymore.

Dr Fallowfield and colleagues studied whether drugs that offer PFS or modest OS benefits improve quality of life in patients with advanced cancer and what trade-offs patients who receive treatment would make for more time alive (Fallowfield L, et al. J Clin Oncol. 2017;35[5 suppl]:223).

Within 2 weeks of starting treatment, patients reported their most troublesome side effect and were then asked if the benefit of a drug—in terms of controlling cancer—was worth varying degrees of side-effect severity. The investigators found that as the severity of side effects increased, significantly fewer patients agreed that the benefit of treatment was worthwhile.

“And that’s just focusing on the side effect that bothered them the most, not on all of the other side effects they were experiencing,” Dr Fallowfield noted.

Why Is This Topic So Difficult?

Data show that early referral to palliative and supportive care services improves the patient’s psychological and physical well-being and benefits the caregiver. But physicians admit these discussions are difficult, especially if they have formed a close emotional bond with the patient. Some oncologists feel it is an admission of defeat and a personal failure as a doctor, and others are responding to the unrealistic hopes of the patient and family, who are looking for a miracle from additional treatment.

Dr Fallowfield urges vigilance in recognizing healthcare providers’ own motives. “Beware of the ‘folie à deux’ that exists when you’re thinking about further treatment,” she warned. “Patients need your help to define achievable goals rather than to embark on anticancer treatments with implausible outcomes.”

Failure to acknowledge the increasing evidence base for an earlier referral to supportive and palliative care is actually a dereliction of duty, she stated. And it results, to quote Dr Nicholas Christakis, “in patients dying deaths they deplore in locations that they despise.”