Palliative care is a well-established specialty of medicine with several decades of research to guide its implementation in a variety of contexts. Palliative care for surgical patients, however, remains understudied, according to a work group convened by the National Institutes of Health and the National Palliative Care Research Center. The work group, comprising palliative specialists from a range of medical institutions, reviewed the existing literature on palliative surgical care to identify areas in which research is needed to support palliative programs and clinicians.
Despite the 2003 call to action by the American College of Surgeons’ Palliative Care Workgroup for research in seven priority areas of palliative care (surgical, patient-oriented, and end-of-life decision making; symptom management; communications; processes of care; and surgical education on palliative care), few studies have been conducted specifically targeting surgical palliative care. The empirical basis for implementation in the surgical context remains thin, according to the work group, which argues that when it comes to palliative care – and the research to support it – the needs of surgical and nonsurgical patients differ significantly.
The report, published in the Annals of Surgery (2017 May 3. doi: 10.1097/SLA.0000000000002253), outlines an ambitious agenda of recommended research priorities in the areas of outcomes, communication, and delivery aimed at filling the gap.
Measuring outcomes
The report pointed to two areas of outcomes research that are understudied. One is defining outcomes that are meaningful to patients. Surgical research frequently defines outcomes in terms of survival, 30-day readmission, and morbidity, but patients accessing palliative surgical care may not prioritize these outcomes. “Measures of functional independence, disability-free survival, days spent at home, or freedom from pain after surgery provide information on outcomes that are both clinically meaningful and important to patients,” the study authors wrote.
In addition, measures of timely and appropriate delivery of high-quality palliative care in surgery are in scant supply for surgeons and institutions looking to identify targets for improvement. Surgeons searching for studies on effective documentation of advance directives, and quality indicators for care at the end of life, such as hospice enrollment and death on life-sustaining treatments, will find the research cupboard nearly bare.
Communication and decision making
Decision making and communication with patients, family, and surgical team members are made especially challenging by the short time frames and crisis situations in which palliative surgical care typically occurs. For many of these patients, the “trade-offs between cure and quality of life (that is, impaired functional status and prolonged pain and suffering) are typically value sensitive.” But surgeons who want to communicate information about these trade-offs “are severely hampered by the paucity of data comparing longer-term survival, quality of life, and function ... the lack of data hinders the consideration of palliative care as an adjunct or alternative to surgery,” the study authors wrote.
Surgeons have few studies and little evidence to guide them on issues such as advance care planning conversations with surrogates in the crisis-prone surgical ICU setting. Future studies are needed to develop communication tools for in-the-moment crises in which patients, surrogates, and surgeons must choose a course of action that is both clinically sound and in accordance with patient values or wishes.
Delivery of palliative care to surgical patients
The work group reviewed the scanty literature on integrating palliative care principles into routine surgical practice and concluded that much work remains to be done in this area. “Studies of physician- and systems-targeted interventions are needed to redirect treatment options so that surgery is not the default modality for patients known to have extremely poor survival due to baseline serious illness or acute surgical conditions.” Optimal timing of palliative care, patient selection, development of scalable models of palliative care in different settings, and residency training models are all understudied, according to the report. And yet, the demand for evidence and data on these issues continues to rise.
The work group concluded, “As the population ages and technical innovation advances, surgical patients will become increasingly complex as surgeons and patients navigate the blurred boundaries between technically feasible, clinically appropriate, and value-concordant care.”
The study was supported by the National Institute on Aging, a division of NIH, and the National Palliative Care Research Center. The authors report no disclosures relevant to this study.