Translational Symptom Science: The Need Is Now

I was in my early 30s in 1987 when I made a career transition from adult critical care clinical nurse specialist to adult hospital-based palliative care nurse practitioner. I learned very quickly about the importance of treating distressing symptoms at the end of life. I view the domains of meeting patient needs in a hierarchical fashion much like Maslow's. At the wide base of the pyramid the emphasis is on treating distressing physical symptoms such as pain and dyspnea to name two. Above that the next most important aspect of care is addressing the psychological symptoms such as depression, fear, and anxiety. Existential needs are at the top. I justify this prioritization with the rationale that patients with severe pain or air hunger are so preoccupied with physical distress and need for relief that other problems become secondary or tertiary. During that time, the '80s, there were a number of gaps in our symptom evidence particularly for the nonpain symptoms and for patients with nonmalignant conditions. I used to joke that I did this challenging work of palliative care so that when my time comes we will have standardized symptom management and I won't have to be “lucky” to receive optimal palliative care.

I'm now in my early 60s, closer to the end of my life, and no longer in clinical practice. I am a symptom scientist with a full-time research academic appointment and I study dyspnea at the end of life across diagnoses and settings of care. I'm hopeful for many more years of health but remain fearful about the continuing gaps in our symptom evidence and my own care (it's all about me) when the time comes. Are we conducting enough research in this domain of palliative care? Further, are we ensuring translation into practice in a timely manner?

Support for my argument can be found in this issue of JPM. Authors Smith and Kamell report about the overuse of benzodiazepines for conditions for which benzodiazepines lack an evidence base and may in fact be harmful. The authors found the numbers of positive responses to misuse of benzodiazepines “striking.” ¹ I found the numbers to be disheartening, particularly since a greater proportion of nurses favored benzodiazepines across symptoms for which there is no evidence of benefit and some evidence of harm. In one of my recent studies I also found overuse of benzodiazepines in patients undergoing terminal ventilator withdrawal who are at risk for dyspnea. The patients in the control arm of my pilot study who received more lorazepam than morphine had more distress than patients in the intervention arm who received more morphine than lorazepam. ²

In another study in this issue investigators found that when community dwelling patients have unrelieved symptoms there is a greater likelihood of transfer to hospital and death in a nonpreferred setting as reported by Okamoto et al. Patients were more likely to die in the hospital when pain and dyspnea were present. ³

I am just home from the AAHPM/HPNA annual assembly in Chicago. As always it was a terrific meeting for the opportunity to spend time with colleagues and reinvest enthusiasm for my work. That said, the number of symptom-focused sessions was disproportionately small compared to other domains of palliative care importance. Of 319 concurrent sessions and research papers, only 27 (8%) addressed symptoms; 14 (4%) covered pain; 4 (1%) addressed dyspnea; 2 (<1%) were about constipation; with fatigue, depression, dysphagia, nausea, and delirium addressed only once each. If symptom management is the bread and butter of palliative care then I would argue that the largest proportion of content at our annual assembly should be about symptoms and the rapid translation of important evidence into practice. I urge my colleagues on the 2017 program planning committees to give high priority to well-designed studies and practice implementation work related to symptoms that cause distress for our patients who will include us some day.