The care of dying people in nursing homes and intensive care units: a qualitative mixed-methods study

Abstract

BackgroundIn England and Wales the two most likely places of death are hospitals (52%) and nursing homes (22%). The Department of Health published its National End of Life Care Strategy in July 2008 (Department of Health.End of Life Care Strategy: Promoting High Quality Care For All Adults at the End of Life. London: Department of Health; 2008) to improve the provision of care, recommending the use of the Liverpool Care Pathway for the Dying Patient (LCP).AimThe original aim was to assess the impact of the LCP on care in two settings: nursing homes and intensive care units (ICUs).DesignQualitative, matched case study.MethodsData were collected from 12 ICUs and 11 nursing homes in England: (1) documentary analysis of provider end-of-life care policy documents; (2) retrospective analysis of 10 deaths in each location using written case notes; (3) interviews with staff about end-of-life care; (4) observation of the care of dying patients; (5) analysis of the case notes pertaining to the observed patient’s death; (6) interview with a member of staff providing care during the observed period; (7) interview with a bereaved relative present during the observation; (8) economic analysis focused on the observed patients; and (9) strict inclusion and selection criteria for nursing homes and ICUs applied to match sites on LCP use/non-LCP use.ResultsIt was not possible to meet the stated aims of the study. Although 23 sites were recruited, observations were conducted in only 12 sites (eight using the LCP). A robust comparison on the basis of LCP use could not, therefore, take place. Although nurses in both settings reported that the LCP supported good care, the LCP was interpreted and used differently across sites, with the greatest variation in ICUs. Although not able to address the original research question, this study provides an unprecedented insight into care at the end of life in two different settings. The majority of nursing homes had implemented some kind of ‘pathway’ for dying patients and most homes participating in the observational stage were using the LCP. However, training in care of the dying was variable and specific issues were identified relating to general practitioner involvement, the use of anticipatory drugs and the assessment of consciousness and the swallowing reflex. In ICUs, end-of-life care was inextricably linked with the withdrawal of active treatment and controlling the pace of death. The data highlight how the decision to withdraw was made and, importantly, how relatives were involved in this process. The fact that most patients died soon after the withdrawal of interventions was reported to limit the appropriateness of the LCP in this setting.LimitationsAlthough the recruitment of matched sites was achieved, variable site participation resulted in a skewed sample. Issues with the sample size and a blurring of LCP use and non-use limit the extent to which the ambitious aims of the study were achieved.ConclusionsThis study makes a unique contribution to understanding the complexity of care at the end of life in two very different settings. More research is needed into the ways in which an organisational culture can be created within which the principles of good end-of-life care become translated into practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.