A strategy for end of life care in the UK

Around 500 000 people die in England each year, and this number is predicted to rise to around 530 000 by 2030. Death affects every person, family, and community, and every culture and creed has its own way of dealing with it. We should all have an interest in good end of life care, yet death is not culturally acceptable, and it is a taboo subject to the public and the medical profession. In a recent BBC survey, only 34% of the general public reported that they had discussed their wishes for how they would like to die. Many healthcare professionals consider it a failure when patients die. In April 2008, the Heath Commission reported that no less than 54% of complaints related in some way to end of life care.

Last week the Department of Health published its strategy for dealing with end of life care in the United Kingdom.1 Producing such a strategy is challenging because it incorporates health care, social care, spiritual care, and all possible sensitivities, as well as homeless people, prisoners, and mentally disabled people. More than 300 stakeholders were consulted. We need to consider how end of life care should change, how the strategy will facilitate this, and how we can measure success.

Most people say they would prefer to die at home, yet the reality is that most deaths (58%) occur in NHS hospitals, with only 18% occurring at home, 17% in care homes, 4% in hospices, and 3% elsewhere.1 Where patients die is influenced by many factors.2 The complexities of planning end of life care services are enormous. It is difficult to define exactly when end of life care starts and even more so to predict prognosis accurately.3 4

The strategy outlines a six step end of life care pathway, which begins with honest communication between clinician, patient, and carer, and the identification of a trigger for discussion. Three themes underlie the six steps and continue throughout the pathway—support for carers and families, information, and spiritual services. However, the pathway is silent on the subject of psychological support, which is surely a key factor throughout the journey.

The report describes many examples of good practice and suggestions of care, but data to support the recommendations are limited, and at present there are no minimum standards.5 It does acknowledge the lack of good evidence and recommends that clinicians start pooling data, auditing practice, and developing metrics. It is only then that research will be able to evaluate the effects of new models on quality of care.

Assessments of the economics of care packages must include measures of quality of life, family satisfaction, and burden on the carer. Medical professionals like to think that they give patients control, but this impression is countered by evidence that patients do not die where they would prefer to.1 We must be able to test whether or not strategies are successful by including metrics, such as preferred place of care and preferred place of death, into patients’ recorded outcome measures. When these metrics have been determined they should also be made available to the palliative care team (perhaps on “personal dashboards,” which show in real time what is happening in terms of performance, as advocated by Professor Sir Bruce Keogh, NHS medical director). The natural competitiveness of clinicians might encourage them to improve their performance if the metrics show that their peers are doing better than they are.

High quality communication should be the essence of delivering the service, with the patient’s wishes and care plan available at every contact with the service. Whenever an intervention of any sort occurs in primary care, secondary care, community services, or social services the patient’s exact wishes must be known and complied with. The new strategy could make this happen by providing a contemporaneous document, and it is a challenge to the National Program for IT to show how such pathways can be enabled by electronically sharable documentation and plans.

Communication and training in symptom control must be part of the core medical curriculum because the specialist palliative care workforce is relatively small.6 Almost all healthcare professionals will at some time care for dying patients, and they should have the skills to do it well.

The main aims of this end of life care strategy are the delivery of high quality care, a change in culture, and better communication, and this is reflected in the proposed division of funds. A central Department of Health fund will support the necessary change in culture, linking public opinion and professional involvement. The government is committed to spending an additional £286m (€360m; $570m) from 2009 to 2011, and it is refreshing to note that most of the funding will go to primary care trusts, making real the policy of devolution of responsibility and resources to the front line. Trusts will be key players in devising and implementing new ways of working.

Niall Dickson, chief executive of the Kings Fund, said of Lord Darzi’s reforms that “real cultural change will be needed in the health service if the vision is to be translated into a reality.”7 This applies in particular to this end of life care strategy. Dying has to become part of living, and we need to talk about it, plan for it, and encompass it. Dame Cicely Saunders’s generation of palliative care professionals were pioneers of the specialty. They built the hospices and the infrastructure. This pioneering spirit must not be lost, and the emphasis should change to embrace new technologies and ways of working. With communication and collaboration the ultimate goal, a dignified death can be achieved for everyone, irrespective of culture, creed, or diagnosis. The vision will then be the reality.