Talking about distress and prognosis at ASCO

Physician-patient communication needs improvement and attention, according to experts at the American Society of Clinical Oncology's annual meeting.

Although experts from around the world gathered at the annual meeting of the American Society of Clinical Oncology specifically to talk about cancer, a theme of their discussions was how difficult, and rare, such conversations are in practice.

Photo courtesy of the American Society of Clinical Oncology
Photo courtesy of the American Society of Clinical Oncology

“When oncologists have been recorded in the exam room, they miss about two-thirds of the empathic opportunities. The patient says, for example, ‘I'm worried about my disease and I'm scared,’ and a lot of times our response is something cognitive, about the scan or about the treatment,” said Thomas LeBlanc, MD, an oncologist and associate professor at Duke University in Durham, N.C.

Although there's a natural tendency to focus on the more clinical aspects of cancer care, physician-patient communication needs improvement and attention, the experts agreed. A variety of strategies to improve communication were offered during several sessions at the conference, which was held in Chicago in June.

“The purpose is to make sure that people get the cancer care that they deserve,” said Donald Rosenstein, MD, a psychiatrist and professor at the University of North Carolina (UNC) in Chapel Hill. “Fundamentally ask people, ‘Who are you, what's important to you, and how can we make things better?’”

Distress screening

Those three questions are at the heart of distress screening, experts explained during a session titled “Psychosocial Needs of Cancer Survivors and Best Practices for Distress Screening.”

Dr. Rosenstein began his talk by offering a definition of the concept. “Psychosocial distress is a multifactorial unpleasant experience of a psychological, social, spiritual and/or a physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment,” he said.

That specifically does not include the many psychological issues that may have distressed patients over the course of their lives.

“I'm a psychiatrist by training and we see a lot of patients with medical/surgical problems who have comorbid psychiatric problems, and we have a central mantra. The mantra is that we are in the business of making sure, if we can, that people receive the medical care that they are in the hospital for. It's not the time to try and repair things that went wrong early in life,” he said. “It may not even be the right time to finally get off that last little dose of that benzodiazepine.”

There are a number of screening tools available, but choosing one should not be a clinician's biggest concern. “It probably matters less which specific [distress screening] tool you use than what you do with the information once you get it,” said Dr. Rosenstein.

Handling a patient report of distress can be complicated. “When someone scores high on any kind of distress screen, you don't really know” whether the specific problem is that the patient has insomnia, is worried about finances or sexual function, or is “just enraged because it took them a while to find a parking spot or they had to pay for parking and they didn't expect to,” said Dr. Rosenstein.

With so many potential causes, positive results on distress screens are common. “Depending on which tools are used and when they're administered and so on, and which patient populations, you can have roughly 30% to 40% of all cancer patients who endorse significant psychosocial distress,” said Dr. Rosenstein

Although it seems natural to treat all identified problems, that won't always be needed or wanted. “This is the triage moment,” Dr. Rosenstein said. “You ask someone, ‘You've shared this information with us, would you like some help with this?’ You'd be surprised how many people say, ‘Actually not right now, thanks for asking.’ Or, ‘Under no circumstances will I ever want to be sent to see a psychiatrist.’”

Patient preferences should guide the response to distress screening, agreed Carole Mayer, PhD, director of research for the Supportive Care Oncology Research Unit at the Northeast Cancer Centre in Sudbury, Ontario.

“Where you may want to start as the most distressing symptom may not be where the patient wants to start. We encourage a conversation to ask the patient what's important for them,” she said.

Patients who don't want immediate treatment of their distress should be offered opportunities to seek it later as needed, she added. “If a patient is offered a referral to a psychosocial specialist and declines, we really encourage the teams to give them the information. Perhaps the patient needs to think about it and have resources they can call once they leave the clinic.”

Obviously, for patients who do want treatment, resources should be ready. “When we implemented distress screening programs in community oncology clinics, some nurses were reluctant to engage because they were concerned that they didn't know what to do with depression, they didn't know what to do with anxiety. We provided education on the various roles of supportive care and psychosocial oncology disciplines and created referral pathways,” said Dr. Mayer.

Clinicians may be surprised by how much help is available, whether the cause of a patient's distress is insomnia or worry about money, according to Mathew J. Loscalzo, MSW, executive director of the department of supportive care medicine at City of Hope in Duarte, Calif. “Most places who do not feel they have the resources have not done a resource inventory, and one should do one,” he said.


Physicians may also want to seek out resources to help them communicate with patients about prognosis.

Multiple studies have found that many cancer patients have a poor understanding of their prognosis, while others have shown that they would like to have that information, said Jennifer S. Temel, MD, an oncologist and professor at Harvard Medical School in Boston, during a session titled “How Much Time Do I Have, Doc? Communicating Prognosis in the Era of Exceptional Responders.”

She cited a study of patients with metastatic cancer, published in the Journal of Clinical Oncology in 2004. “The overwhelming majority said they wanted to know the chances of treatment shrinking their cancer, the factors that made their prognosis better or worse than average, the longest time they might live, and the average time they might live.”

In addition to conforming to patient wishes, accurate prognostic communication carries clinical benefit. “Several studies show that there's a clear association between prognostic understanding and actual outcomes, especially at the end of life. Patients who overestimate their prognosis are far more likely to pursue very aggressive care, and that may be because they don't understand that that care isn't likely to change the outcome and isn't likely to yield meaningful benefits,” said Dr. LeBlanc.

They are other reasons to share this information, added Dr. Temel. “Prognostic awareness enables patients to make informed decisions about how they want to spend their time. Do they want to retire from their job and spend time with their family? If patients don't know that they probably aren't going to live until next summer, they're not going to move up that family vacation.”

While the evidence is clear about the current gaps in prognostic communication, its causes are less well established. To some extent, patients may have trouble understanding or accepting prognostic information, Dr. LeBlanc said. But a lot of the problem lies with what physicians say, the experts agreed.

“It has been estimated in a couple of different places that we as oncologists in the course of our careers will have between 10 and 30,000 episodes of bad news disclosure,” said Paul R. Helft, MD, an oncologist and professor at Indiana University in Indianapolis. “You feel the wear and tear of that. We worry that we will destroy hopefulness. We worry that we'll be viewed less favorably if we always talk about death.”

Studies have found that this concern is unfounded. “Evidence shows that there is not any harm to patients' emotional well-being and there isn't harm to the patient-doctor relationship. If anything, maybe there's enhancement if you're open and honest,” said Dr. LeBlanc.

There are three main steps to explaining prognosis and treatment choices to patients in a shared decision-making model, Dr. LeBlanc said. “First, it involves a discussion of the fact that there is a choice. Sometimes we don't do this in practice, but the idea is that we need to explicitly say, ‘Hey, there is a choice to make here. I can't tell you what to do because I'm not you and I don't know what you value and prefer in life.’”

The second step is explaining the risks and benefits of the patient's options. “Then, lastly, and perhaps the most often overlooked aspect of truly shared decision making—which again is something the [Institute of Medicine] has been saying we should be doing for over a decade, but most of us haven't actually been trained to do—is that we must also solicit and consider the individual values, goals, and preferences of the patient,” said Dr. LeBlanc.

Physicians can then use their understanding of patients' perspectives to provide individualized recommendations. “That's part of how shared decision making differs from just informed decision making, where maybe we're exchanging information about risks and benefits but then just asking the patient which option they want. [Informed decision making] is really for the lower level of decision making, and we should be aspiring to more,” said Dr. LeBlanc.

These conversations should involve a lot of open-ended conversations and a minimum of jargon, he advised. “That means practicing it, figuring out how to deliver this news in a supportive way, so we're not just talking at people,” Dr. LeBlanc said. “We all struggle with this. It's incredibly difficult.”

Some physicians struggle more than others, though, according to Dr. Helft, who offered his theory that oncologists can be divided into three groups stratified by their skill at having difficult conversations with patients. “If you don't believe me about this, walk up to your inpatient unit, and ask the nurses which oncologists don't talk to their patients and they'll tell you,” he said.

He noted that there are many existing training programs for communication skills, and that some have proven to improve patient satisfaction over at least the short term. “I suspect, although I don't have any proof of this, that the moderately skilled group is the group that's going to be most likely to benefit from skills training,” Dr. Helft said.

Physicians who are highly skilled communicators could be encouraged to help their peers. “What we really need to do for them is both provide organizational support, let's say time or incentive to have these conversations, or allow them to mentor others within the group,” he said.

For those with the least advanced skills in this area, the solution might be to find someone else to participate in the conversation. “It's not clear from the literature that we can, merely through skills training, whether it's 12 hours or 20 hours or three days, help them through this particular part of their practice,” said Dr. Helft. “But we can do other things. We can provide palliative care consultation, nurses in dyads; there are models in care management programs, other models.”

Accepting, and dealing with, this issue could lead to overall improvements in cancer care, he speculated. “I think this lack of facility and comfort that some of us feel with managing reactions to bad news is a big part of this sentinel problem, the downstream effects of which are that patients receive value-discordant care and overly aggressive therapy at the end of life. If we did a better job earlier in the trajectory, then we'd do a better job with outcomes,” said Dr. Helft.