The Importance of a Comprehensive, Patient-Centered Approach to End-of-Life Care

Abstract

R elieving suffering of the dying patient is a core mission not only of palliative care providers, but of every clinician who participates in the care of seriously ill patients. Too often, patients and families suffer unnecessarily at the end of life because dying is not recognized, providers do not communicate about prognosis, and symptom management is inadequate. Several studies have documented unmet needs related to communication and symptom management for patients who die in the hospital in the United States. 1,2 This problem is multi-factorial. Despite the fact that early advance care planning discussions are associated with better patient and caregiver outcomes, 3,4 studies suggest that these discussions are often delayed 5 and quality measures in this domain are often not met. 6,7 There is, instead, a tendency to focus on diseasefocused rather than patient-centered treatments, which often leads to patients receiving care inconsistent with preferences or prognosis.Even when patients are identified to be at the end of life, they are often not treated using accepted standards for endof-life care. 8 This may be due to multiple issues, including continued invasive medical interventions, lack of knowledge about evidence-based comfort care approaches, and adverse attitudes toward and lack of knowledge about use of opioid medications at the end of life. The multi-site study by Bailey and colleagues in this issue of JGIM 9 has important implications for how to improve care provided to hospitalized patients at the end of life. It also highlights the importance of implementation science in the study of quality improvement interventions, which are challenging to evaluate with randomized controlled trials and often require customization to local environments in different health care settings. With a detailed, multi-pronged approach based on a successful single-institution pilot study including staff education, palliative care team involvement, an electronic medical record-based comfort order set, and adjustments in pharmacy and nursing policy, the study team was able to successfully change clinician behavior so that patients were more likely to have treatments available for distressful symptoms such as pain and delirium. There were also significant decreases in the rate of nasogastric tube use and increases in advance directive use and sublingual administration of medications.It is important to note that there was not a statistically significant change in receipt of opioid medications at the end of life and more than a third of patients did not receive opioids at the end of life, despite this intensive intervention. Whether this is due to lack of need is unknown, but a recent qualitative study of this intervention provides insights into the importance of the structural components of quality (i.e. ensuring hospital policies support best practices) 10 and how delays in implementation of updated policies and staff turnover may have limited the dose response for this intervention. This related qualitative work can be used...