Some issues in the provision of adult bereavement support by UK hospices

Abstract

This paper considers some issues in the provision of adult bereavement support in UK hospices. The paper is based on the findings of a multi-method study conducted in two phases over 30 months (2003–2005) to examine the nature and quality of adult bereavement support in UK hospices from the perspectives of bereaved people and professional and volunteer bereavement workers [Field, Reid, Payne, & Relf (2005). Adult Bereavement Support in Five Hospices in England. Sheffield, UK: Palliative and End-of-Life Care Research Group, University of Sheffield. (Available from Professor Payne)]. It discusses the importance of continuity between pre-bereavement and bereavement support, the integration of bereavement services within hospices and the involvement of volunteers in bereavement support. It then discusses the engagement of UK hospices in the broader development of bereavement support. Although hospices have developed expertise in supporting bereaved people, our research suggests that they have not had a major impact on other health service providers, such as general practitioners and distinct nurses and staff in acute hospital trusts, in this area.

Introduction

Historically, UK health services have contributed little to bereavement support, with the exception of psychiatric treatment for those with complicated grief reactions. One exception has been the modern hospice movement which, from its origins in the 1960s, has recognised the continuing needs of bereaved relatives. Hospices in the UK have now become integral to national plans and policies for the delivery of palliative care services within a regulated market of health and social care, ‘needs led’ approaches to service planning, and the quality assurance of service delivery. With the issuance of the National Institute of Clinical Excellence (NICE) guidelines on Supportive and Palliative Care for Adults with Cancer (2004), bereavement support services in England and Wales are likely to become similarly regulated.¹ However, although organisations such as Help the Hospices have been involved at the national level, many individual hospices do not seem to have become involved with other local organisations in discussions about the development of bereavement support within their communities.

In the UK, bereavement has traditionally been regarded as a private affair to be dealt with by individuals and their close family and friends, and for many this remains the case. However, there is some evidence that social changes within society, such as smaller family size, greater geographical mobility and secularisation, have reduced the availability of social support and decreased the willingness of people to confide in close family and friends. These social changes may have influenced the development of community bereavement support activities and the increasing use of primary care providers (Birtwistle, Payne, Smith, & Kendrik, 2002; Foster, 2000; Wiles, Jarrett, Payne, & Field, 2002). Formal bereavement support activities in the UK have historically been provided largely by faith groups, self help groups and national charities such as Cruse Bereavement Care.

In National Health Service (NHS) hospitals, provision for bereavement support has been largely confined to the activities of hospital chaplains and the care provided by nursing and medical staff immediately after a death. Bereavement services associated with hospitals are unusual, the exception being a few Accident and Emergency Departments and some Obstetric Units. At the start of this century, following public inquiries into organ retention by pathology departments in NHS hospitals (e.g., The Kennedy Report, 2002), the Department of Health (2005) made recommendations to acute hospital trusts that they should provide bereavement services.

UK hospices provide care predominantly for those dying of cancer and emphasise continuing care after the death for their relatives. Unlike those in the USA, they are usually centred around an in-patient unit, although most UK hospices also provide support to terminally ill people in their homes. Bereavement support in UK hospices is also primarily based within the hospice, although home visiting and group meetings at other places also occur.

Most UK hospices regard the provision of bereavement support as integral to their services, although there is less consensus about the nature of the services that should be provided and how they should be delivered or allocated. However, two recent surveys suggest there are similar elements of hospice bereavement support in the UK and USA (Demmer, 2003; Field, Reid, Payne, & Relf, 2004). Bereavement support may include a broad range of activities such as social evenings, social visits in the home by volunteers (‘befriending’), counselling and support groups. Such support may be provided by professionals and/or by trained volunteers. The involvement of bereavement support volunteers in hospices is common in the UK (Field et al., 2004) and in New Zealand (Payne, 2001). Two studies have demonstrated the effectiveness of volunteers in the provision of bereavement support (Parkes, 1981; Relf, 2001).

There are few methodologically rigorous evaluations of general bereavement support (Davies & Higginson, 2004; Forte, Hill, Pazder, & Feudtner, 2004; Stroebe, Schut, & Stroebe, 2005) and even fewer in relation to hospices (Parkes, 1996). Little is known about the nature and quality of bereavement support provided by hospices and whether (let alone how) it impacts on preventing morbidity in bereaved people. While claims are made that pre-death hospice care facilitates better outcomes for families during bereavement, the evidence is contradictory (Grande, Farquhar, Barclay, & Todd, 2004). A review of the literature on assumptions about facilitating emotional disclosure, grief work and counselling interventions which underpin much bereavement support reached ambiguous conclusions (Stroebe et al., 2005). Our research aimed to provide information about the nature and functioning of adult bereavement services in the UK.