Title

Patient and family experiences of care in the UK : a systematic review of research evidence between 1997 and 2010 on patient and family experiences of information disclosure, communication and decision-making involvement

Document Type

Presentation

Source Publication

The 12th Congress of the European Association for Palliative Care : Palliative Care Reaching Out

Publication Date

5-19-2011

Publisher

European Association for Palliative Care

Abstract

Aims: Ensuring that patients have a positive experience of care has been identified as one of the five high-level outcome domains for the NHS in England. To provide baseline data on contemporary experiences of UK end of life care, a systematic review was performed to identify all literature on end of life care experiences between 1997 and 2010 in the UK. Results relating to information disclosure, communication and decision-making involvement in end of life care are presented here.

Method: Six databases - AMED, EMBASE, OVID MEDLINE, CINAHL, PsyInfo, BNI (1997-2007) were searched. Inclusion criteria were primary UK studies on patients’ and/or carers’ perspectives; published between 1997 and 2010; concerned with experiences of health and social care services in end of life, palliative, terminal or hospice care by adult patients; findings relate to information disclosure, communication and decision-making.

Results: 25 of 4558 citations met inclusion criteria. Patients and carers were often given inaccurate information and had limited understanding of their or their relatives’ illness. They also reported inadequate information disclosure and poor access to information. Most patients and carers had had an end of life discussion. Though the discussion was helpful in death preparation, not all patients and carers welcomed it. Open, honest communication and staff with positive personal attributes were identified as two factors facilitating end of life discussion. Involvement in end of life care planning was low but patients varied greatly in their desire to be involved in planning their care.

Conclusions: Findings suggest room for improvement in communication with patients and families in UK end of life care. Patients and carers varied in their preference for information delivery, amount of information disclosure, emotional response to end of life discussion and degree of involvement in care planning. This study is funded by the Cancer Experiences Collaborative.

Recommended Citation

Hui V. K.-Y., Bailey C., & Addington-Hall, J. (2011, May). Patient and family experiences of care in the UK: A systematic review of research evidence between 1997 and 2010 on patient and family experiences of information disclosure, communication and decision-making involvement. Paper presented at the 12th Congress of the European Association for Palliative Care: Palliative Care Reaching Out, Lisbon, Portugal.

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