Listening to the family's voice: evaluation of a tool to improve symptom control and communication.

BACKGROUND:: Acute hospitals provide a high proportion of end-of-life care but some families experience poor communication with clinical staff. AIM:: To evaluate the use of the Family's Voice diary communication tool across nine healthcare settings. METHODS:: A mixed method practice development approach was used incorporating: an audit of the usage of Family's Voice; collation and analysis of written comments; and collation of written feedback from the principal investigators at data collection sites. FINDINGS:: There were 112 completed diaries. Families rated pain and vomiting as well controlled, but agitation and breathlessness were difficult to control. Families were positive about care provided to the patients and themselves. Ten themes were identified from analysis of the families' written comments that echoed national concerns. CONCLUSION:: Evidence for the utility of the diary is building. Future work could focus on strategies for embedding the diary into routine care for all end-of-life patients.

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.