Managing end of life care in Care Homes

Principle investigator: Professor Malcolm Johnson
Senior research assistant: Dr John Percival
Administrator: Alice Ekrek

Contact details:
Email:a.ekrek@bath.ac.uk
Telephone: +44 (0)1225 384612
(Office staffed most Thursdays and Fridays, in emergency contact CDAS at
+44 (0)1225 386949, cdas@bath.ac.uk)

Background

Over the past decade, the dependency levels and age structure of older people living in care homes have changed markedly. Due to public policies to support ‘independent’ living for as long as possible and to ration entry into long term care settings, those who now live in care homes are characteristically frail (physically and/or mentally) and long lived. The average age of residents is now 90. Moreover, because of the emphasis on homecare, lengths of stay have become considerably shorter. In residential homes the period is down to about 30 months and in nursing homes about 19 months.

It is, therefore, now quite proper to describe care homes as end of life services. Almost all residents will die in or from the home. Dealing with death well is an extremely important part of the service to residents and their relatives. Yet, until recently, the subject has received little attention from policy makers, practitioners or researchers.

A neglected feature of the demographic explosion which gathered pace throughout the twentieth century is the huge reduction in premature deaths, which, along with increases in longevity, have radically changed the time honoured pattern of deaths.  Today, 80% of all deaths are of people over 65 and, of these, 21% take place in care homes (Office of National Statistics, 2000). In the UK, there are 620,000 deaths year. This means there are in excess of 105,000 deaths in care homes each year.

In the absence of other than the most rudimentary guidance, care homes have adopted a wide range of practices. Subsequent enquiries have revealed good and sometimes excellent practice. A select few have done their best to enable residents to die in the home; providing extra care, soliciting support from the GP and domiciliary nurses and nurturing relatives. Others have been more pragmatic and basic in their approach, relying on the GP to hospitalise any but the most straightforward cases. Regulators rarely took issue with these minimal approaches, despite sound principles existing in key documents such as Home Life (1984) and sections on ‘Terminal Care’ and ‘End of Life Care’ in the CSCI Inspection protocol. Consequently, there is much anecdotal evidence of distressing deaths, angry relatives and many needless transfers to spend disagreeable last hours and days in hospital wards.

Whilst there have been valuable developments of good care home practice, they have not made significant impact on the generality of homes. The hospice movement has long held wide public and professional respect for its care for the dying. But it has focused almost exclusively on children and those of working age with cancers. Older people and especially those in care homes have been virtually excluded, nor was the hospice model offered to others who care for dying people.  So, many have died less well because their carers were untaught.

In very recent times, the Department of Health has entered the arena, highlighted the need for better end of life care and set up first the End of Life Care Programme (2004) and, in June 2006, the Minister of State, Rosie Winterton, announced the development of an End of Life Care Strategy, to be led jointly by the National Clinical Directors for Cancer and for Older People, Professors Mike Richards and Ian Philp. In 2005, CSCI carried out a consultation on ending the Terminal Illness category.

These initiatives were largely targeted at dying in hospitals. As over half of all deaths take place there, this was an important arena of activity. Curiously, the schemes which received support and then official sanction were then advocated for use in the care home sector. In particular, the Liverpool Care Pathways (LCP) and the Gold Standards Framework approaches have been commended to care homes. The take up has been modest, (a) because LCP is a hospital based model and the Gold Standards is primarily a medical protocol, designed for the terminal stages of a life threatening illness – whereas care home residents are already well known to their staff and require a developmental, progressive (not an ‘emergency’) model; (b) The training is too expensive in time and money for care homes; (c) The schemes do not reflect the culture and practices which apply where people are dying in ‘my home’.

Whilst the recognition of better care for dying people in government circles and public policy is most welcome, it is not well fashioned for care homes. Models from acute clinical settings are a less than good fit. Good practice developed within the sector has yet to make its mark at the policy level. Nor is there a good knowledge base from which to analyse need; there is no database of causes of death, the professional actions taken to address the needs of the dying person, nor reliable empirical evidence about current practices and their acceptability to residents and their families.

Project aims

This project aims to develop a detailed account, from multiple perspectives, of the causes of death, the place of death, the care regime provided and the view of staff and relatives of what individual older people experienced in the final stages of their lives. How well they felt the actuality matched the resident's preferences and whether it was 'a good death'. In addition, a detailed picture of the end of life policies, practices and perspectives will be gained from the managers and staff of Homes. As a result it should be possible to analyse the way the care system (within and beyond the Homes) has treated dying people, what principles were in operation and what lessons can be learned for better practice.

Methods and ethics

The project will look at a random sample of 12 residential and nursing homes, The average care home has 45/50 beds and about one in three residents die each year, although this figure is higher in Nursing than Residential Homes. This project will look only at residents who are recently deceased (preceding 12 months), resulting in data being sought in relation to 240 people. Given the nature of the study, it is estimated that we will be able to proceed in around 180 cases.

The project will assemble as full an account as possible of the provisions that were made in and by the home, to deliver appropriate healthcare, social wellbeing and spiritual support. This will involve:

• Plotting the course of the illness(es) which lead to death, using the Resident Record (Care Plans etc) retained by the Homes and accounts of key workers who attended the persons who died.
• Acquiring and examining the Death Certificates for the official cause of death to assess how suitable the treatment and support regimes were.
• Examining the GP and Care Home records concerning the treatment regimes and decisions about the place of death. Access to GP records for deceased persons, which are now held by PCTs and GPs themselves, may not be available to researchers, even with family authorisation, as there are as yet no precedents under the current law. Preliminary enquiries reveal that all the agencies are willing to allow access, so long as it is not otherwise prohibited.
• Gaining accounts from relatives/significant others and from staff as to what was done for the deceased resident. This will be by extended qualitative interviews conducted either by selected professionals with experience of bereavement counselling, or by the two investigators.
• Interviews with the 12 Home Managers and key worker staff to establish the care home's approach to end of life care. The research team will elicit (a) the written protocols relating to end of life care which are required by CSCI Inspectors (b) staff accounts of how residents are treated in practice. The discussions and interviews will solicit examples of what they value about the home's approach and examples of good and bad practice.
• Comparing the experiences and practices in both homes. In this process, particular attention will be given to the differences which have resulted from staff having received training in end of life care.
• Work within the homes will only commence with the full permission and agreement of the Owners/proprietors and Managers of the individual homes.
• Once a list of deceased residents and their close kin/significant others has been supplied by the Homes, these relatives will be approached by letter by the Principal Investigator to explain the project and to invite them to be interviewed. At this point, a preliminary request will be made for access to medical and care home records. Should agreement be given, a formal Agreement for access to records will subsequently be presented for endorsement.
• All participants and Homes will be assured of complete confidentiality with respect to identity for themselves and the person who has died. No names or other signifiers will be used in published material which would link data or statements to any individual.

Further information

At the centre of the whole exercise is the phsyical, social and spiritual wellbeing of residents in the final stages of their lives. Prior experience has shown that well created changes in end of life care upgrades the whole culture of the home, making it more open and more caring. There are approaching half a million residents in care homes at any one time that can benefit from these improvements.

Exisitng research has demonstrated the positive effects of a more open approach to death amongst close kin and other relatives when unspoken thoughts and feelings are shared. Homes which act as careful enablers can serve to reduce the guilt and greif and therefore the length of bereavement. In the case of people with dementia the impact is especially beneficial. The study will gather a considerable body of personal accounts and opinion from relatives. This in turn will become an evidence base for training and skills development.

Updates

02.10.08

The End of Life Care in Care Homes Project is proceeding according to schedule. A 4% national survey of current end of life care practices in care homes has now been completed and is in the early stages of analysis. The researchers are now engaged in a period of active fieldwork examining in detail the policies, protocols and practices in 12 care homes in England and Wales, including scrutinising the trajectory towards death of all those who died in these homes in 2007. The homes involved are as widely distributed as Leeds, South Wales, Home Counties, Birmingham and the Southwest.