Special Series: Palliative Care
DOI: 10.1200/JOP.2017.026492 Journal of Oncology Practice - published online before print August 16, 2017
What Enables Oncologists to Discuss Goals of Care With Their Patients? Practical Ways Toward a Culture of Kindness, Transparency, and Responsibility
In this issue of Journal of Oncology Practice, two articles illuminate new aspects of communication between oncologists and patients about goals of care. The culture of oncology is undergoing a tectonic shift. When I was a medical oncology fellow, there was no term for what oncologists did when they talked to patients about the end of life. The literature talked about the art of oncology and terminal disease. My fellowship training did not include anything about communication or dying. Palliative care did not exist as a specialty. Fast forward to 2017. We now have a robust evidence base of randomized trials supporting the early integration of palliative care; oncology fellowships are required to include communication; and ASCO endorses concurrent early palliative care for every patient with advanced cancer.1 The culture is shifting, but despite this, oncologist involvement in communication about goals of care is still a work in progress. What is this discrepancy about?
The use of early palliative care for patients with cancer can be viewed, from a sociologic lens, as an innovation spreading through the culture of oncology. This theory, developed by Everett Rogers as diffusion of innovation,2 describes how new ideas and technologies spread, and the lessons are readily applicable to oncologist communication about goals of care. One of Rogers’ most applicable insights was in the way he characterized individuals who adopt new ideas and technologies. Individuals that he called early adopters are more willing to beta test, are more willing to speak to others, and emphasize the value of innovation. Individuals that he called later adopters are more cautious about adopting new ideas, are more skeptical that the new ideas will work for them, and tend to emphasize the value of tradition. What can we learn from applying this to conversations about goals of care? One big lesson is that the exciting possibilities that fueled early adopters probably will not work for later adopters.
What happens when oncologists hesitate to discuss goals of care now, in 2017? The evidence showing patient benefit from these discussions is clear, and the communication skills are defined, but the context has changed. Many oncologists now have some access to palliative care specialists. The unintended consequence of this change is that it is now possible for them to outsource the goals of care conversation. That is what Calabrese and Case3 describe in their account of a new pattern of hesitation, when oncologists stick to a role as “good cop.” From the diffusion of innovation perspective, taking on the good cop role is one way of exercising caution about taking on goals of care communication and sticking to a traditional role. Unlike early adopters, these later adopters may need to have their caution and skepticism addressed more directly. For example, oncologists with less direct experience with communication training are more likely to use a coping strategy based on distancing. However, these oncologists can change with mentorship, so one way to address their caution is through a joint visit that enables them to see how a different approach that takes on goals of care explicitly and directly can work to a patient’s benefit.
A diffusion of innovation perspective is useful in a different way to understand the surprising results of the study conducted by Sivendran et al.4 This study involved 208 patients at a community-based cancer institute and unexpectedly found that patients with stage I to III disease were more likely to report their stage inaccurately than patients with stage IV disease. Are oncologists starting to view communication with patients with metastatic disease differently? One speculation would be that in this institution, where oncologists work with embedded palliative care clinicians, goals of care conversations have become the norm for patients with metastatic disease but not for patients with nonmetastatic disease. Clearly, there is still room for improvement, but these results are markedly different from a national survey of patients with metastatic disease. In this institution, accelerating diffusion for later adopters might be encouraged by showing these oncologists data that compare them to their peers, for example, in timeliness of palliative care referrals or hospice referrals or use of chemotherapy at the end of life. Later adopters do not like seeing themselves as laggards.
A complementary framework for enabling oncologists to discuss goals of care is the behavior change framework developed by B.J. Fogg. This behavior change is designed to create new habits and involves identifying a specific behavior, making the behavior easy to do, and creating a trigger for the behavior. This method might seem counterintuitive for clinical educators who are accustomed to orienting physicians to big goals, focusing on motivation, and presenting lots of information. The nonprofit VitalTalk has used this framework to design learning methods that have demonstrated behavior change5 and that have been used in a recent randomized trial to improve patient outcomes.6 For example, a specific behavior for goals of care is to use the REMAP framework (reframe, expect emotion, map out patient goals, align with goals, and propose a plan)7; a five-step talking map makes the behavior easier to do, and a trigger for the behavior might be for the oncologist to use REMAP with every patient for whom the oncologist would not be surprised if the patient died within a year. A more elaborate version of patient identification, triggering, scripting, and reminding was used by Lakin et al8 to improve serious illness conversations in a primary care setting. However, it is important to start by simplifying the entry point to the desired behavior.
A final approach to enable oncologists is to make it clear when they do not have to move forward. The principle here is that a later adopter may feel more willing to try something risky if there is an escape hatch available. In this case, the escape hatch is a consult from a palliative care clinician or other communication specialist if the oncologist sees a red flag that signals a conversation that is going awry. Potential red flags include the following: the oncologist feels that the patient does not understand the medical situation at a second conversation to discuss it; the oncologist finds the patient unwilling to discuss the medical situation; or the oncologist observes anger or sadness or other emotion such that further conversation seems likely to worsen their relationship. The oncologist could say to the patient, “It seems like we’ve discussed a lot today, and this is a tough situation. Let’s continue later, and I’ll involve one of my colleagues.” The following joint visit could be designed with a few minutes of postvisit debriefing between the oncologist and palliative care clinician, which could allow for a time-efficient, supportive debriefing that instills and reinforces effective communication skills.
Perhaps the most important point is that communication skills, more than content knowledge about anticancer therapy, require a different model of learning. The usual model of learning in oncology is a conduit model—knowledge is a kind of object that is transferred from teacher to student.9 Many educational oncology meetings provide knowledge that can be readily transferred through presentations, for example. However, this model fails when used for communication; you cannot say the same phrase to every patient and expect it to work.
A more useful model of learning for goals of care conversations is to think of communication skills in levels, as follows9: a foundation level, where the physician can use specific questions and phrases; a representation level, where the physician responds to information and emotion cues intentionally to create a mental representation of the patient’s world; and an abstraction level, where the physician can use the conversation data to characterize a patient’s values, wishes, and stories that could guide a physician to make a recommendation about a situation the patient never imagined would happen. Mandating physicians who are hesitant to discuss goals of care by asking them to start at the abstraction level runs the risk of making a bad situation worse; the physician may push through the conversation without knowing the patient’s values, may make recommendation that do not make sense to the patient, and may find that the patient rejects the recommendation—and the oncologist.
We can use the empirical findings about learning to teach oncologists practical ways into these conversations, starting with the foundation level, followed with accessible ways to build higher-level skills, so that they can experience for themselves the power of their own ability to heal.Copyright © 2017 by American Society of Clinical Oncology
The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/journal/jop/site/misc/ifc.xhtml.
No relationship to disclose
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