End of life care must be improved

Each year around half a million people die in England, three quarters of whom do so following a period of chronic illness, such as cancer or heart disease. Most deaths (58%) occur in NHS hospitals, with around 18% occurring at home, 17% in care homes, 4% in hospices and 3% elsewhere.1 However, the Department of Health (DH) has acknowledged that many patients do not receive a high standard of end of life care. Many patients experience unnecessary pain and do not die where they would choose to, while there are distressing reports of people not being treated with dignity and respect.1 To address these issues, the DH published its national end of life strategy last year to improve the care provided. The strategy centres on: • Improving the provision of community services by, for example, making rapid response community nursing services available in all areas 24 hours a day, seven days a week, and improving coordination of care between local authorities and PCTs. • Equipping health and social care staff at all levels with the necessary skills to communicate with, and deliver care to people approaching the end of life, and their carers. • Developing specialist palliative care outreach services by encouraging PCTs and hospices to work together to provide appropriate support to all adults in the community, regardless of their condition. The DH believes the strategy should reduce inappropriate admissions to hospital and enable more people approaching the end of their life to live and die in the place of their choice. Involving patients in decisions over their care will be key – the DH states that all people approaching the end of life should have their needs assessed, their wishes and preferences discussed, and an agreed set of actions reflecting the choices they make about their care recorded in a care plan. In some cases, people may want to make an advance decision to refuse treatment, should they lack capacity to make such a decision in the future. Others may want to set out more general wishes and preferences about how they are cared for, and where they would wish to die. These should be incorporated into the care plan. The care plan should be subject to review by a multidisciplinary team, the patient and carers, as and when a person’s condition or wishes change, and should be available to all those who have a legitimate reason to access it (e.g. out of hours and emergency services). Following the announcement of the strategy, the National Audit Office (NAO) produced a report investigating the state of end of life care and identified areas which need to be addressed in order to achieve the improvements sought by the DH.2 The NAO report found that the basic needs of many people approaching the end of their life are not being met, and many are not afforded the dignity and respect they deserve. Focus groups found that the standard of hospital care and social service provision was below what was expected and care plans for patients had not been drawn up and agreed. These issues had unnecessarily caused stress for people approaching the end of their life and those caring for them.

Training

The NAO also found that front line staff often lack training in delivering basic end of life care. While many healthcare professionals come into contact with people approaching the end of their life, the NAO’s surveys found that only 29% of doctors and 18% of nurses had received any pre-registration training in end of life care. Furthermore, only 39% of doctors and 15% of nurses had received preregistration training in communicating with patients approaching the end of their life. The report pointed out that positive experiences of care are often linked to being treated by staff who understand, appreciate and empathise with the end of life situation. It further identified room for improved coordination between health and social care services in the planning and delivery of end of life care, and said that information on peoples’ wishes is often not captured or shared. It pointed out that the majority of people approaching the end of their life wish to be cared for outside of hospital, but a lack of services to support patients at home can lead to unplanned and unwanted admissions to hospital. While the majority of people (between 56% and 74%) expressed a preference to die at home, mortality statistics for 2006 showed that only 35% of people die at home or in a care home. Fifty-eight per cent of all deaths occur in a hospital, although this figure varies from 46% to 77% between PCTs. It concluded that a lack of prompt access to services in the community leads to people approaching the end of their life being unnecessarily admitted to hospital, adding that the absence of 24-hour response services and timely access to advice and medication leads to unplanned admissions. In addition, information on patients is not always captured or shared effectively between the different agencies involved in delivering care. This can lead to “do not attempt resuscitation” orders not being known or recognised by providers such as out-of-hours GPs and the ambulance service, resulting in inappropriate admissions to hospitals. The NAO further commented that the proportion of care home residents who die in hospital could be reduced. A survey found that a quarter of care home resident deaths occur in a hospital. There were also wide variations between care homes in the number of residents who die in hospital, ranging from none to all residents. In one PCT, the proportion of residents dying in care homes could have been increased from 61% to 80% if greater support and advice had been provided. A detailed examination by the NAO of patient records in one PCT found that 40% of patients who died in hospital in October 2007 did not have medical needs which required them to be treated in hospital, and nearly a quarter of these had been in hospital for over a month. Local data suggested that, in many cases, home-based alternatives could have been provided.