Earlier Palliative Care for Oncology Patients: Walking a Fine Line

I recently attended an academic community hospital's institutional review board meeting for a palliative care focused clinical trial. As a full disclosure of my own conflicts of interest, I am the principal investigator on the aforementioned clinical trial and I come to the table with bias. The research focuses on improving primary palliative care in the oncologic setting. We had an enthusiastic and engaged response from the cancer center where the research would take place. Yet the IRB was decidedly less receptive. In their formal review they expressed concern that the emphasis on a palliative versus a curative approach might not be appropriate for many of the patients with Stage 3 and 4 cancers we planned to recruit. I attempted to respond, asking if it might be helpful to clarify the difference between palliative and hospice care, how palliative care integrated early on with curative care can improve patient outcomes. No one at the table embraced the opportunity for a teachable moment. This is unfortunate, for the early integration of palliative care in the oncology setting, as we now know, can lead to improved symptom management, quality of life, and survival. ¹

In this month's issue we have a detailed look at the self-perceived roles of palliative care clinicians in these early integrated oncology consultations. ² The palliative care clinicians who participated in this qualitative study, all of whom were involved in Temel's groundbreaking randomized controlled trial (RCT) of early palliative care intervention, reported their roles focused on three main activities: symptom management, emotional support and coping, and interpreting communication between oncologists and patients. These findings were consistent with the qualitative analysis of the actual patient encounters. ³ Early visits focused on building rapport through symptom management and emotional support. Visits later in the trajectory of cancer care concentrated on decision making and end-of-life planning. The authors draw a distinct dichotomy between the pace of the early integrated palliative care consults and the inpatient consultation. It was pronounced enough that they suggest that trainees need to unlearn the inpatient strategies of pressured decision focused consultation. I think palliative care providers will need both sets of skills and strategies for the foreseeable future. As a case in point, my meeting with the IRB felt far more like one of these intense inpatient consults with little time or opportunity to develop a trusting rapport.

Back in the IRB meeting, the discussion continued. One member expressed his discomfort with the language of our brochure: the use of words like “advanced cancer.” He went on to state that it would be problematic if patients learned they had an advanced cancer through the brochure. At times during intense palliative care family meetings, when sides have become entrenched, it is often helpful to bring the room back together with a universal truth. Something along the lines of, “Yes, I think we can all agree that it is really a problem if a patient is learning for the first time that they have advanced cancer from the research brochure.” However, the brochure is not the problem and learning the truth about their stage of illness is not the problem. A communication breakdown of this magnitude is the problem. We know that research has shown that the majority of patients with advanced, metastatic, incurable lung and colon cancer believed the chemotherapy might cure their cancer. ⁴ Communication breakdowns occur frequently. It is enlightening to see that early-integrated palliative care physicians saw interpreting between patient and oncologist one of three activities from their intervention. The interpreting and communication flowed both ways, helping the patient communicate preferences to their oncologist and helping oncologists communicate bad news to patients.

Our study is in the final stages of review with an approval expected in the upcoming days. It has given me the opportunity to reflect and appreciate the robust body of evidence that the field of palliative care is building. The science is one vital component to facilitate the paradigm shift that modern medicine needs. The data supporting early integration of palliative care in the oncology setting is strong and has led to inclusion in National Comprehensive Cancer Network and American Society of Clinical Oncology guidelines, and the recent Institute of Medicine report on cancer care.^5–7 However, the knowledge and science alone will be insufficient. We, as the palliative care providers and researchers in the field, must continue to work on building relationships, establishing rapport, and engaging and fostering trust, not just with our patients but with our colleagues. We will need to employ both the strategies of inpatient consultation and early integrated palliative care as we work within the ever changing medical landscape. First, we will need the inpatient consultation skills that are forced by time and circumstance to push for decisions and drive change at a faster pace than all parties would prefer or are comfortable with. We must also continue to hone and cultivate the skills and strategies of early integrated palliative care, serving as interpreters between the patients and providers and the medical system as a whole.