Caring for the Dying at Home

Most people, when asked where they would wish to die, will say in their own home, supported by family and healthcare professionals known to them. At present, many instead die in hospital, and in Caring for the Dying at Home Keri Thomas shows how existing structures can be strengthened to allow more people to achieve their wish for a home death. Written in the main by a general practitioner, the book deals with three related areas in some depth. The middle section has contributions from a palliative care consultant and deals with key features of palliative care for patients with common cancers. This section is perhaps the weakest, not providing sufficient detail to answer practical questions that arise day-to-day in the care of the dying. The first part entitled ‘Palliative care at home: why is it important?’ explores the changing face of medicine and attitudes to death and dying. An overview of the palliative care movement and ways of integrating care of the dying involving specialist care in the context of the primary healthcare team provides the setting for the main thrust of the book, which is a description of the Macmillan Gold Standards Framework (GSF). This is a phased programme designed to raise the standard of end-of-life care in the community. Too often end-of-life care has been delivered in an uncoordinated fashion and not based on best evidence. This is not surprising considering the rising workload in primary care, the effect of an ageing population, the lack of resources at community level and the professional isolation experienced by many general practitioners. The GSF seeks to address problems of lack of coordination, poor communication and professional isolation by taking a primary care team through a stepwise process over a period of 6-12 months. The steps are referred to as the seven Cs—namely, communication; coordination; control of symptoms; continuity; continued learning; carer support; and care of the dying (terminal phase). Rather than just deliver yet another set of guidelines to an already beleaguered primary care profession, Macmillan have actually tested the GSF initiative and Keri Thomas is involved in qualitative and quantitative evaluation of the scheme. Practices registering for the GSF programme receive practical support from a local Macmillan facilitator, a toolkit, conferences relevant to the programme and the offer of evaluation of the practice's progress. Keri Thomas writes with conviction, her own life being touched by personal tragedy. The book is laced with quotations from participating health professionals and patients that help break up the text and bring alive the issues under debate. At times one feels that lecture notes are being too closely followed (with references to Maslow, needs/support matrices and Venn diagrams), but the section on bereavement and accompanying sources of help and words of wisdom I found moving and helpful for my future practice. So who needs to read/refer to this book? I think a practice team conscious of the need to improve and maintain end-of-life care, particularly with the destabilizing effect of opting out of 24-hour responsibility under the new GP contract, will do well to study the Gold Standard Framework. Primary care organizations (possibly through their cancer-lead) ought to consider the Macmillan GSF, particularly in the likely event of practices ceasing their 24-hour commitment. An adequately resourced initiative led by a primary care trust could confidently expect to improve care for those dying at home. Finally, the primary health-care professional wishing to develop an interest in end-of-life care would find the chapter on Evidence-based Care, with some ninety useful references, a good starting-point.