Expectations and reality
How we care for people at the end of their lives is a defining characteristic of a society. Approximately 500,000 people will die this year in England, and many of these will need health and social care input. Although the majority of the English population express a wish to die at home, surrounded by familiar objects and people, only approximately 20% will have this wish fulfilled. Over half of people die in hospital, many alone, and often experience conditions and care very different from what they expected. However altruistic an individual or an organisation may be, the pressures exerted on an overloaded care system can compromise best practice and limit patient choice.
Table 1: Care Settings for all Deaths in England
| Care Setting | % of all deaths |
| Home | 20% |
| Care home | 20% |
| Acute hospital | less than 50% |
| Hospice | 4% |
Source: Presented by Eve Richardson, CE of National Council of Palliative Care 12 July 2007
The government has recognised the need to increase investment in EOLC, and the End of Life Care Programme set up in 2006 is due to deliver a national strategy in June 2008 to coincide with Lord Darzi’s NHS Next Stage Review.
The Reform Challenge
So what else is missing? What are the pieces of the puzzle that are not present that would allow PCT commissioners to drive forward reform in EOLC?
Communication, user empowerment, and expectations
Despite years of talking about user empowerment, there is still little evidence of real engagement with users and carers in the planning of services. The Picker Institute’s 2007 report ‘Is the NHS Becoming More Patient Centred’ found little evidence that users are pro-actively engaged in decision making. There is a need for a national set of standards to measure the impact of consultation on decisions; depending on a list of events where users and carers were invited to make comment is inadequate. As it is now, it is difficult to evaluate organisations on their response to the wishes and needs of their population.
An important consideration is how to provide information to individuals and their families at appropriate times. A project looking at the inpatient care for older people published ‘Quality of Inpatient Care for Older People in Acute Trusts’, which found that the majority of people wanted to know what was happening to them, and did not necessarily want information given to their families first.
There is also the key issue of patient and carer expectations with regard to EOLC, which can vary widely. Differing expectations and general uncertainty are not helped by a lack of timely information about the most appropriate care for different EOLC conditions, and what choices are available within the NHS and without.
New models, market opportunities and robust contracts
The essential purpose of commissioning is to ensure the right services are available at the right time to meet the needs of a population. EOLC provision is a rich mixture of NHS, Local Authority, Independent sector and third sector partners. Transformation to user-centred services rather than maintenance of existing organisation-focused provision is at the heart of the government’s aspirations for commissioners for health and social care. However, current EOLC access arrangements are inconsistent; most providers measure the ‘start’ of an EOLC package differently and the menu of care services they are prepared to supply also varies widely. At a strategic planning level, the options for provision are often not even fully known, never mind consistently quantified and communicated.
There is a need for commissioners to become more skilled at influencing service provision, for example:
The ‘Gold Standard Framework’ for EOLC recommends the creation of a register of those people likely to need services, yet the criteria for inclusion is ill-defined and will not necessarily impact on those who have a significant medical event that transforms their life expectancy in a day. An enormous amount of data is now collected in health care, but this is not always transformed into usable information. Predictive modelling, ratio analysis, statistical analysis, social modelling and scenario planning are in their infancy, and the majority of PCT commissioners will not have access to this type of expertise.
Conclusion
End of life care is a vast and sensitive field that will eventually touch all of us. There is already a wealth of material provision out there; it needs strong and committed commissioners to weave it into the strong tapestry of care that this service and its users deserve. World class commissioning of EOLC will enable England to move towards community-based provision that allows the majority to die in dignity in familiar surroundings.
