Professor Sheila Payne, the Director of the International Observatory on End of Life Care at Lancaster University and President of the European Association for Palliative Care, working with Research Associate Dr Hazel Morbey were engaged by the Commission for the Future of Hospice Care.

“There has been a history of policy changes designed to benefit carers but, sadly, the experiences of family carers of those approaching the end of life appears to be largely unchanged and continues to be unnecessarily challenging,” said Professor Payne.

“The question is why? In our view, the culture of hospice care needs to truly include family carers as central in their relationship with patients and as worthy beneficiaries of support both during and after the death of the patient.”

Professor Payne presented her findings and recommendations at the Help the Hospices Conference in Bournemouth.

The aims of the study were to draw together existing knowledge about hospice care relating to family carers of those facing the end of life and to provide recommendations to address gaps in service for them.

The report draws on published and grey literature and evidence from empirical research predominantly from studies of support services in the UK, Australia and Canada.

The report flagged up:

• The ‘dual experience’ where carers are faced with competing demands to look after their own health while at the same time supporting the cared-for person
• The implications of an ageing population means that carers have significant health needs of their own that require   services and support. Carers and their family members can often have multiple health conditions and mutual, fluctuating care giving/receiving relationships
• More people are living into old age, including centenarians, which are the fastest growing demographic group, with a doubling in population size every decade. Yet only two per cent of those over 100 die in hospices and many are cared for by equally old carers.

The study shows carers often experience considerable physical, psychological, social and financial challenges for which they are largely unprepared. They also perceive they have little choice in decision-making about their role and the nature of care provision. And little is known about the full economic cost for individuals in providing end of life care.

Changes to employment patterns with more female workers, delayed pension entitlement and more part-time working are likely to mean people will have to combine paid employment with care provision.

 And the diversity of family ‘constellations’ now require complex care arrangements, especially for divorced, step and single carers. Multi-generational caring roles are becoming more commonplace with a ‘sandwich’ generation in middle age providing care to those older and younger than themselves.

The study flagged up evidence that many health care professionals often feel unprepared for supporting and understanding carers’ experiences. Many hospice staff are intrinsically motivated to help family carers but systems and work patterns consistently place barriers in how carers are recognised and supported.

The report recommends:

• Family carers require respectful and compassionate care and access to up-dated knowledge about how to provide care. They should be offered regular assessment of their needs and a ‘menu’ of support services which are timely, accessible, affordable and appropriate.
• Hospices should explore opportunities for greater involvement of volunteers in direct support to family carers and regular assessment of family carers needs should be embedded in routine hospice care rather than a reaction to a crisis or problem. The report also suggests quality leadership is needed in hospices to boost and value carer support.
• National organisations associated with hospice care should agree a minimum provision of support across all hospices, give greater attention to integrated procedures and practices across health and social care, adopt new methods to map, quantify and recognise the ‘hidden’ networks of actual and virtual care which would then reveal carers’ contributions and needs and to ‘test drive’ imaginative use of health and communication technologies to offer hospices ways to support family carers.

National Clinical Lead at Help the Hospices Heather Richardson said: “This is a timely reminder of the huge contribution that family carers make to people who have a life-limiting condition and how they need to be better recognised and supported by hospices.

“While hospice staff have a genuine desire to work well with family carers, there are still barriers that prevent them from doing so and their needs are often overlooked as a consequence.

“This report will act as a catalyst for hospices, and the organisations which support them, to help increase overall awareness of carers’ needs and develop new ways of working to help support them better.”

Help the Hospices (www.helpthehospices.org.uk), the UK’s leading charity for hospice care which supports and champions the work of more than 200 hospices, set up the Commission, chaired by Dame Claire Tickle, a year ago. The aim of the overall study was to examine the future of hospice care and identify major concerns on the future of research related to hospice care and provide recommendations to inform work of the Commission relating to research and research capacity building. All Lancaster University’s research recommendations have been included in the Commission document.