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"Good end of life care should mean that people are treated with dignity and respect and, where possible, in their preferred place of care. Some people receive high standards of care in their final weeks, days and hours, but others do not. Organisations responsible for the care of people approaching the end of their life need to improve the planning and delivery of services, particularly support in the community. There is scope to make these improvements by using both existing and planned additional resources more efficiently and effectively."

This was the succinct yet in-depth view espoused by Tim Burr, head of the National Audit Office (NAO – which is totally independent of Government), of the current state of end of life care in England, in unveiling the NAO End of Life Care report (NAO, 2008).

End of life care provision is at long last being properly addressed. The recent report from 26th November 2008 by the NAO will hopefully serve as major catalyst to promote and enhance the development of an area of healthcare that has been somewhat left behind in its evolution when compared to other areas of healthcare. This is an odd and paradoxical state of affairs given that end of life care is an intrinsic part of every day care provision in a variety of settings. This report is a very readable and important document. It examines the current provision of end of life care services in England and identifies the potential for improving their quality. It also highlights the issues that will need to be addressed in the implementation of the Department of Health’s End of Life Care Strategy (DH, 2008a).

End of life care overview
Life expectancies are increasing. In England 500,000 people die each year and of these two-thirds are over 75 years of age. The majority of these deaths occur in an acute hospital and usually following a period of chronic illness such as IHD, cancer, CVA, chronic respiratory disease, neurological conditions or dementia. Most people want to be cared for and die in their own home but the actual number of people who are able to do so varies with age, geographical area and most significantly by condition. Such an increase in longevity also brings with it increasing complex provision issues due to multiple conditions in older people – people require a combination of health and social care provided in acute and community hospitals, care homes or hospices.

End of life care is often delivered by a large number and wide variety of generalist staff, although the exact number involved is not known nationally. Around 5,500 staff work in specialist palliative care delivered by health and social care with specific training in the management of pain and other symptoms and the provision of psychological, social and spiritual support. The significant input of care being provided by informal carers such as family, friends or volunteers must not be either underestimated or forgotten. The report reflects this variety of care in its detailed preparation.

The Department of Health – more big business
End of life care is yet another billion pound industry. The DH estimates the overall annual cost to NHS and social care services is indeed measured in billions of pounds (in 2006-07 PCTs spent an estimated £245 million on specialist palliative care). The NAO estimates the cost of providing NHS and social care to cancer patients in the year prior to death (27% of total deaths) to be £1.8 billion.

The DH itself has acknowledged that relatively low priorty has been given to end of life care and has tried to increase its profile in recent years. In July 2008, following a 2-year consultation period, it published its End of Life Care Strategy. 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; and 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 envisages that implementation of the Strategy will reduce inappropriate admissions to hospital and be more empowering for people approaching the end of life to live and die in the place of their choice. To add emphasis to their vision the DH has pledged additional funding of £286 million for 2009-2011.

Place of care
The majority of people (between 56 – 74%) express the preference to die at home; this proportion may decline however as death becomes more imminent and people want for more extensive support such as hospice care. Statistics for 2006 demonstrate that 35% of people die at home or in a care home. 58% of all deaths occur in hospital (a figure that varies between 46-77% in different PCTs). The place of death varies by condition – cancer patients are more likely to die in at home or in a hospice; the majority of deaths from dementia occur in care homes; and the vast majority of deaths from heart and pulmonary disease occur in hospital.

The reason proposed for end of life care unnecessarily occurring in hospitals is because of a lack of prompt access to services in the community. The absence of 24 hour response services and timely access to advice and medication leads to unplanned admissions. The report suggests that DNR orders not being known by multiple agencies involved in care can result in inappropriate hospital admissions as well.

The report in particular opines that the proportion of care home residents who die in hospital could be reduced. A survey from the report found that 25% of care home resident deaths occur in hospital and there were wide variations between care homes in the number of residents who die in hospital, ranging from none to all residents. In one PCT this proportion of residents dying in the care home could have been increased from 61 to 80% if greater support and advice had been provided to the care homes involved.

The vital role of independent hospices was recognized in providing both inpatient and day care. Independent hospices provide about 2,150 inpatient beds, compared to 450 provided by NHS hospices. The proportion of non-cancer patients receiving hospice services remains low but is growing.

Meeting the needs of patients and carers
The report suggests that unfortunately the NHS and social care services are not meeting the basic needs of many people approaching the end of their life – they were not always afforded the dignity and respect they deserve. Despite all carers being entitled to an assessment of their health and social care needs a census of PCTS in the report found that only 29% provided such assessments as standard, and PCTs do not routinely record whether carers have received such an assessment. Only 24% of PCTs stated they offered respite care to all who need it.

Training of staff
Frontline staff often lack training in delivering basic end of life care. The report found that only 29% of doctors and 18% of nurses had received any pre-registration training in end of life care; and only 39% of doctors and 15% of nurses had received pre-registration training in communicating with patients approaching the end of life.

Another survey from the report found that 74% of ninety care homes stated they provided specific training on end of life care, but that in less than half of cases was such training compulsory. High staff turnover rates predictably suggest that care homes are training fewer staff than they lose on an annual basis.

Improving the delivery of end of life care
Fifty four per cent of general nurses and a third of doctors reported being trained in the use of at least one of the three NICE recommended approaches to end of life care (Gold Standards Framework, Liverpool Care Pathway or Preferred Priorities for Care). For palliative care specialists 91 per cent of nurses and 95 per cent of doctors had received such training. These approaches are well regarded by a range of users and both doctors and nurses reported that their use had improved their confidence in delivering end of life care. There has been little measurement of the benefits for patients of using these approaches and the direct benefit to patient care associated with their use has yet to be fully demonstrated. What research has been done has shown that their use can decrease unnecessary hospital utilisation and increase the likelihood of people dying in their preferred place of care.

Service commissioning needs to improve
The expenditure by PCTs on specialist palliative care services does not reflect the pattern of need. The PCT census in the report and data collected by the DH found large variations in the average amount spent on specialist palliative care services for individuals approaching the end of their life (£154 to £1,684 per death). There is also variation in the availability of palliative care beds, and in the number of staff within hospital and community specialist palliative care teams. The provision of care home places and hospice services is also in many cases not proportional to need.

Different funding streams hampers the coordination between health and social care services in relation to the planning, delivery and monitoring of end of life care which is in general poor. It can be difficult to determine what proportion of patients’ needs are medical and fall under the NHS budget, or non-medical (social care) and are funded, in part, by local authorities and by the patient based on a needs assessment.

In 2006-07, hospices provided inpatient services to more than 38,000 people and supported over 112,000 people in the community, but current contractual arrangements with PCTs limit their ability to plan and develop services e.g. 70% of hospices have only one year contracts with PCTs and, on average, independent hospices received 31% of their net expenditure (approximately £130 million) from PCTs.

The DH has not yet implemented a national tariff to underpin commissioning of palliative care for NHS and voluntary sector providers (in 2004, in response to the House of Commons Committee’s report on palliative care (HM Government, 2004) the DH stated it was on course to implement a national tariff which would allow full cost recovery by all palliative care providers by 2008-09). There is no specific timetable currently for such implementation.

Redistributing existing end of life care resources
Detailed examination of patient records in one PCT discovered that 40% of patients dying in hospital in October 2007 did not have medical needs which needed them to be treated in hospital, and that nearly a quarter had been in hospital for over a month. Such figures are probably not surprising for geriatricians all over the country. The report identified alternative places of care for these patients being split between home care and hospice care.

The report proposed that reducing the time people approaching the end of life spend in hospital could actually free up resources to provide better support for people to die in their preferred place of care (as well as freeing up acute beds for more appropriate patients). The NAO estimates that of the £1.8 billion needed to provide care for cancer patients in the last year of their lives, £104 million could be redistributed to meet people’s preferences for place of care by reducing emergency hospital admissions by 10% and average length of stay following admission by three days (which equates to about a 25% reduction in the current average length of stay).

Recommendations for the Department of Health
Through the national End of Life Care Programme the DH should support PCTs and strategic health authorities to develop protocols to capture, document and share accurate patient information on preferences. The report envisages ideally this should eventually be captured in the (not yet fully operational) Summary Care Record.

1. The DH in working with the relevant professional bodies, ensure that all trainee doctors, nurses and allied healthcare professionals, and registered social care staff receive appropriate training in the delivery of end of life care.
2. The DH should strengthen the existing standards against which care homes are assessed to include bolstered and improved training for staff with an emphasis on dignity and respect at the end of life.
3. Whilst it is accepted that the Gold Standards framework, Liverpool Care Pathway and Preferred Priorities for Care provide a framework for improving delivery of end of life care the report noted that little is known about direct patient benefits. The report advises the DH should commission clinical evaluations in this area of these pathways.
4. In recognising that commissioning end of life care is complex the report advises the DH should apply the World Class Commissioning Framework (WCCF – launched in December 2007) to improve commissioning of services. Furthermore the report is very precise in advocating its guidance in that the DH should assist PCTs in allocating resources ‘more efficiently and effectively by building on evidence from our work’.

Recommendations for PCTs as commissioners of end of life care services in implementing the Strategy

1. Encourage providers to develop and regularly review care plans, including advance plans, for those wishing to have one.
2. Commission effective coordination of end of life services via a single point of contact for patients and carers.
3. Develop 3-year contracts with independent hospices.
4. PCTs should use WCCF to commission end of life service from hospitals to meet the needs of patients and carers, and in particular obtain assurances that hospital staff have received sufficient and appropriate training; within the hospital there is suitable accommodation for end of life care and there are robust, timely and effective discharge planning arrangements.
5. PCTs should explore the possibility of commissioning more services from hospices to support patients with conditions other than cancer.

Summary
It has been suggested that how a society treats its dying patients is a litmus test for that society. In furthering development of end of life care this report produces clear directions for the Government and the DH. Whilst similar reports of this importance and stature can make for somewhat turgid reading this report does not. It is well written, punchy and clear in its aspirations and advice. Even the appendices provide valuable information that can be of use to everyday clinical practice and service development especially those on International comparisons and case examples.

The case examples concentrate on non-cancer end of life care. For the older person an increasingly important subsection of end of life care as a whole is that for people with dementia. This is an area of healthcare that is likely to become more prevalent as the proportion of people with dementia inevitably rises. This group provides equally complex health and social care planning, as non-dementia cases, even if the person dies from the effects of the dementia alone or develops a superadded physical condition contributing to their death (for a review of issues pertaining to end of life care in dementia in the continuing care setting see Curtice, 2008).

It is also very encouraging that the report has at its core a human rights based approach (as advocated by the DH, 2008b) by emphasising the importance of dignity and respect being central to providing end of life care. It is also clear that the DH needs to lead on the development of end of life care in a concerted fashion and to unequivocally follow the NAO guidance in the report.

Martin Curtice
Consultant Physician in Old Age Psychiatry
Birmingham

References

Curtice, M (2008) Supporting carers before,during and after a death. Journal of Dementia Care. 16(5) 24-25.

Department of Health (2008a) End of Life Care Strategy – Promoting high quality care for all adults at the end of life. TSO: London.

Department of Health (2008b) Human Rights in Healthcare: A framework for local action. Second edition. Gateway reference 10482. London: Department of Health.

HM Government (2004) Government Response to House of CommonsHealth Committee Report on Palliative Care
Fourth Report of Session 2003-04. Cm 6327. TSO: London.

National Audit Office (2008) End of Life Care. Report by the Comptroller and Auditor General.HC 1043 Session 2007-2008. TSO: London. Sourced at:
http://www.nao.org.uk/pn/07-08/07081043.htm

BGS Newsletter, March 2009
Issue 19 ISSN 1748-6343 20