The characteristics of patients who discontinue their dying process – an observational study at a single university hospital centre

BACKGROUND: End-of-life integrated care plans are used as structuring tools for the care of the dying. A widely adopted example is the Liverpool Care Pathway for the Dying Patient (LCP). Recently, several concerns were raised about LCP care, such as a worry that diagnosis of dying might be leading to a self-fulfilling trajectory, including hastening of death. However, data on rates of discontinuation of LCP care are lacking. In an observational study, we therefore investigated the incidence, features and trajectory of patients who were discontinued from the LCP. We hypothesised that (1) it is common to discontinue patients from the LCP, (2) quality of life does not decrease for discontinued LCP patients, and (3) discontinued patients live longer than patients who remain within LCP care. METHODS: All adult patients who were diagnosed as dying in a German university hospital specialized palliative care unit were included in 2013 and 2014. Actuarial estimation of survival prognostication tools and a number of quality of life indicators were used for data collection. Survival time was analysed using Kaplan-Meier estimates. Group differences in quality of life were tested using multivariate analysis of variance. RESULTS: 159 patients were included in a digital version of the LCP. 15 patients (9.4 %) were discontinued later. Quality of life did not decrease for discontinued patients during LCP care (p = 0.16). LCP discontinued patients lived significantly longer than the remaining LCP subgroup (difference of means 296 hours, 95 % confidence interval 105.5 to 451.5 hours; difference of survival function estimates p < 0.0001). CONCLUSIONS: When patients are diagnosed as dying, death is not the inevitable outcome of an end-of-life integrated care plan such as the LCP. Instead, it is common to discontinue the LCP care. Regular careful interprofessional assessments are important for identifying those patients who need to be discontinued from their end-of-life care plan. In this study, we found no evidence for harm by the LCP. We conclude that a correctly applied integrated care plan can be useful to provide good and safe care for the dying. TRIAL REGISTRATION: Internal Clinical Trial Register of the Medical Faculty, Heinrich Heine University Düsseldorf, No. 2015053680 (22 May 2015).