Hospice at Home: Optimising Care and Enabling Home Death

Abstract

BackgroundThe Cambridgeshire Hospice at Home (H@H) service provides specialist community care for people approaching the end of their lives, enabling them to be cared for and to die at home if that is their wish. An independent evaluation is underway that is both shaping the evolving service and providing commissioners with detailed information needed to ensure continuing NHS funding.MethodsA multifaceted approach has employed:a) Detailed case-note review of all 450 patients referred to the service between January 2012 and August 2013, from referral through to post bereavement follow-up. Data includes each patient/family assessment, multidisciplinary visit, telephone call and night care episode, collated to capture the range of holistic care. Analysis is descriptive.b) Interviews with individuals clustered around 17 deceased patients, including bereaved carer, H@H staff member most involved in the case, the referring healthcare professional (HCP) and other professionals significantly involved. Carer interviews generate understanding of the patient and carer in their environment, background to the illness, care provided, service related issues and experience since the death. Interviews with H@H staff and HCPs address the experience of being a H@H Nurse, involvement with the patient, communication and service related issues. Analysis uses constant comparative methods.Results/findingsData collection is still underway and ends in October. Of the 207 deaths analysed to date, 166 (80.1%) died at home, 38 (18.8%) in hospice and 3 (1.4%) in hospital; 196 (94.7%) died in their preferred place. Description of the complete quantitative dataset will be presented, alongside analysis of the qualitative interviews (by group–carer/staff/other HCP and by cluster.

Understanding what works, why and in what circumstances in hospice at home services for end-of-life care: Applying a realist logic of analysis to a systematically searched literature review

“…25 GPs were important in enabling access to the service, if they deemed that a patient could be cared for at home, 39 and if a family required psychological support and needed practical help for symptom control. 35,36 Referrals were also being appropriately triaged by the senior nurse at the hospice at home service using a RAG rating on the severity of clinical need of the patient and family. In terms of monitoring the criteria for service admission, the main tool used for reporting was whether patients died in their preferred place.…”

“…In terms of monitoring the criteria for service admission, the main tool used for reporting was whether patients died in their preferred place. 35 "Knowledge and Skills of Care Providers"…”

“…Where papers reported one study, these were grouped together into one set. 23,24,[34][35][36][37] Seven papers where consensus could not be reached were reviewed by a fourth researcher (P.W. ), independent of the reviewing team to act as an adjudicator, who made the final decision.…”

Where Children Die

“…10 Rationale for parental preference for home death include families feeling more supported at home, with less disruptions and more normalcy. 17 Multiple studies have shown improved psychological functioning and adjustment in parents whose child died at home. 14 Parents also perceive improvement in their child's quality of life and happiness at home.…”

“…16 These data parallel findings in adults (and their families) with similar chronic conditions who also prefer home death if feasible. 17 Multiple studies have shown improved psychological functioning and adjustment in parents whose child died at home. 14,18,19 A study of parents whose children had died either at home or in the hospital of a cancer diagnosis showed significantly higher depression ratings in parents of hospital deaths.…”