“The Progression of End-of-Life Wishes and Concordance with End-of-Life Care,” a brief report authored by Jennifer Hopping-Winn, LCSW, Juliette Mullin, MPH, MBA, Laurel March, MA, Michelle Caughey, MD, Melissa Stern, MBA, and Jill Jarvie, RN, MSN, was published in the Journal of Palliative Medicine (January 2018, ahead of print). Using in-depth chart reviews from patients who had participated in the Kaiser Permanente Northern California (KPNC) advance care planing program, the study found that 290 out of 293 (99%) patients were found to have received goal-concordant care if a POLST was completed up to 12 months before they died. In 7 of 300 cases, concordance could not be determined.
Since 2013, KPNC has used an advance care planning program to elicit, document and honor the care treatment preferences of patients near the end of life. This study aimed to determine whether patient wishes were actually respected at the end of life, with a hypothesis that patients’ wishes would be their ultimate care preferences if the conversation occurred within 12 months of their death and that the patient would receive care concordant with those POLST-documented care preferences ~95 to 98% of the time, an estimate based on two previous studies on the concordance rate of the Respecting Choices advance care planning program.
In this study, the research focused on patient who had participated in the KPNC’s Life Care Planning (LCP) Advanced Steps (AS) program, modeled on the Respecting Choices’s Last Steps program. Patients are referred to LCP AS if their physicians estimate they are in their last year of life. An AS facilitator helps the patient discuss their preferences in the presence of their designated decision maker (DDM) about the patient’s preferences for end-of-life care.
Three LCP experts at KPNC conducted the in-depth chart review to determine goal concordance per patient. Concordance was defined as documentation that care received in setting before death was either consistent with documented wishes on patient’s POLST form or inconsistent with POLST selections, but consistent with the DDM’s or patient’s verbal guidance. Study authors noted that a particular strength of this study was the researchers’ accessibility to a breadth of information in order to determine care preferences and the final care received, made possible by the Kaiser Permanente integrated health system’s electronic health record that includes records from a wide variety of clinical settings.
The researchers randomly selected 300 of the 3701 patient who had participated in the AS program and died in 2015. How close in time the conversation took place before death varied from one day to more than 2 years, with an average time of about 10 months. Among the 300, 253 had completed a POLST Form; among the 253 who had completed a POLST Form, 48 (19%) revised their care preferences at some point. Patients were more likely to change their preferences over time if the AS conversation was not recent or if they returned to the hospital for care. Most (85%) of the time, the patient of DDM opted for less intensive care when changing care preferences, and in most of these cases, the DDM made the change on behalf of the patient, generally when the patient’s condition deteriorated significantly and the patient could no longer speak for him or herself.
The study confirmed a very high level of respect for patients’ wishes across care settings. Only in three of the 293 cases were care decisions made by clinicians found to be in conflict with the patient’s wishes; one case occurred in a hospital emergency department, one in a community dialysis clinic, and one in a community skilled nursing facility. In each of these 3 cases, the DDM was not immediately available, leaving the decision to the clinician. The researchers noted that clinicians should not have to depend on the presence of a DDM in order to follow patient wishes; when accessible, the POLST Form should serve to help guide and communicate patient preferences when the patient or DDM is unable to do so.
“A skillful, facilitated advance care planning conversation is a worthwhile approach for eliciting patients’ wishes, and the POLST form is a valuable tool. When patients’ preferences about medical care are made known in this way, they overwhelmingly receive concordant care. However, our findings highlight the need for comprehensive, continuous conversations across all care settings, even after a POLST is completed. As the U.S. healthcare system continues to improve end-of-life care, more research on the documentation and progression of care preferences is needed to fully understand how healthcare providers can best identify and act on patients’ wishes, especially when a DDM is unavailable.”
Hopping-Winn J, J Mullin, L March, M Caughey, M Stern, J Jarvie (2018). The Progression of End-of-Life Wishes and Concordance with End-of-Life Care. Journal of Palliative Medicine. January 2018, ahead of print. http://doi.org/10.1089/jpm.2017.0317 (limited access).