Patient Participation in Palliative Care: A voice for the voiceless by Barbara Monroe (Chief Executive, St Christopher's Hospice, Sydenham, London, UK)
Patient participation and user involvement are central to current thinking about the effective delivery of desired healthcare outcomes. Working with the person who lies behind every patient is core to palliative care. A voice can only become significant when it is listened to and acted upon. With palliative care increasingly addressing the needs of people with a variety of conditions in a range of settings, as well as with advances in research, technology, and information, the challenge to be 'a voice for the voiceless' is greater than ever. This book addresses key aspects in the provision of patient-centred palliative care and tracks significant developments in user involvement. It sets the philosophy within the cultural, social and political context of modern healthcare, particularly addressing issues of quality, standards, education and bereavement. A key component in the delivery of high quality palliative care is the multi-professional team. Following a discussion of teamwork, five core professions present a critical analysis of their working practices. The book concludes with a commentary from a palliative care user and a bereaved carer. It is often somewhat glibly asserted that the patient is, or should be, at the centre of care. There have been few attempts to examine how to keep him or her there without professional needs and protocols crowding him or her out. This book asks how we listen and why we listen. The book focuses on the challenges of how professionals can keep the needs of the patient central in clinical care and how the patient can influence the direction of that care.