Involving families in end of life care.

The authors outline the benefits of an initiative piloted at North Tees and Hartlepool NHS Foundation Trust. Family members of people at the end of their lives are asked to fill in diaries to provide feedback about care, and the information is used to address issues raised. The data and comments are collated, audited and fed back to clinical staff and managers across the trust to benchmark patient-reported outcome measures and quality markers for achieving a 'good death'. The term 'family' refers here to family, friends, carers and significant others who are present at the bedside of patients who are dying in hospital and who are on the Liverpool Care Pathway.

Communication diary to aid care at the end of life.

This study describes how clinical staff at an acute hospital developed and introduced a diary tool that improved communication with the relatives (or carers) of patients receiving end-of-life care. The "Relatives'/carers' diary" was given to relatives of patients on the Liverpool Care Pathway. The diary enables relatives to be more meaningfully engaged in end-of-life care. It also enables nurses to monitor the quality of their care and respond quickly to any concerns.

Use of the proportion of patients dying on an End of Life Pathway as a quality marker: considerations for interpretation.

The Department of Health as part of its End of Life Care Strategy has developed a set of markers as a quality of care proxy for adults at the end of life. 'The number/proportion of patients dying with the Liverpool Care Pathway (or equivalent) in place' is suggested as a quality metric for all care providers. A retrospective audit of uptake of use of the Liverpool Care Pathway (LCP) in an NHS hospital in the North of England showed that 39% of all patients who died had been placed on the LCP. Overall 58% of patients who died were judged to meet the criteria for LCP use. This represented 81% of patients dying with cancer as a primary cause compared to 51% of patients dying with non-cancer. This difference was statistically very significant. In the Trust under study, 67% of dying patients who fulfilled the LCP criteria were placed on the pathway. The results of this study suggest that a simple percentage of deaths on the pathway is an unsophisticated statistic which needs to be interpreted with care. In particular it will be influenced by the proportion of people dying with cancer or non-cancer. This should be considered particularly when presenting the results to the public and to healthcare stakeholders or when making comparisons between provider organizations.

Offering spiritual support to dying patients and their families through a chaplaincy service.

Despite its importance in end of life care, spiritual care is poorly addressed. This article presents the results of an innovative service in which nurses notify hospital chaplains of all patients placed on the Liverpool Care Pathway and the chaplains then visit to offer spiritual support to both patients and their carers. Nurses reported that the service was valuable not only for patients and their families but also for themselves and the whole clinical team. All nurses said they wanted the service to continue.

Home away from home? A case study of bedside objects in a hospice.

This is a descriptive case study employing a photographic survey of the numerous objects that patients and their social networks bring to a hospice setting. Photographs were taken of all objects kept by the bedside by 31 inpatients in a hospice in the UK county of Durham. These objects ranged from assorted food and drink, greetings cards and magazines, to more specific personal items such as family photos, children's drawings, and religious icons. A total of 176 objects were analysed. There were two principle findings. First, patients appeared to bring objects to a hospice setting that reflected their desire to partially recreate their home settings or functions, however modestly. Second, despite a major diversity of objects, and the fact that most objects underlined desires for distraction, entertainment and social contact, almost every individual patient harboured at least one personally unique object. These two observations--creating some semblance of 'home' and the existence of uniqueness amid a plethora of expected patient paraphernalia--suggest important reconsideration of both hospice settings and the possibility of new ways to engage patients about meaning, illness and loss.

Audit of pain and sleep during sleeping hours.

This joint audit between nursing and medical staff examines the quality of sleep experienced during the night and the degree to which pain is controlled in a specialist palliative care unit. Patients and nurses independently completed short questionnaires incorporating categorical rating scales for pain and sleep. Patients' perceptions were directly sought. Nurses were good at assessing whether patients slept well and also whether they were pain free. However assessment was less accurate in judging the degree of pain when present or quality of sleep when poor. Areas to improve pain control and sleep were identified. This audit methodology has the potential to provide outcome measures of quality of palliative care not only for the individual palliative care provider but also wider purchaser and provider bodies.