Most people living in care homes will die there. This article reveals the factors influencing good-quality end-of-life care from the perspectives of residents, relatives and staff
In this article…
- Why end-of-life care in care homes is of growing importance
- How nursing and care home staff can improve their practice
- What makes a difference to residents and relatives
John Percival is research associate at the Centre for Academic Primary Care, School of Social and Community Medicine, University of Bristol; Malcolm Johnson is visiting professor of gerontology and end-of-life care at the Centre for Death and Society, University of Bath.
Percival J et al (2013) End-of-life care in nursing and care homes. Nursing Times; 109: 1/2, 20-22.
Background: More than 70,000 people die each year in nursing and residential care homes, yet comparatively little attention has been paid to end-of-life care practice and its challenges in this setting.
Method and results: We conducted interviews and group discussions in 12 homes, involving 73 residents, 97 members of staff and 16 relatives. These revealed that personalised care, dignity and respect, making time, talking about death, relatives’ roles, and staff support were priorities for all concerned.
Conclusions: Training is vital in helping staff to engage sensitively, respectfully and creatively with dying residents. Staffing levels must be sufficient so staff can sit with residents and care in a way that is attuned to their personality, life history and wishes. Supportive relationships between staff and relatives help to ensure a “civilised death”.
- This article has been double-blind peer reviewed
- Figures and tables can be seen in the attached print-friendly PDF file of the complete article in the ‘Files’ section of this page
5 key points
- The majority of people living in a nursing or care home will die there
- Better end-of-life care in homes is one of the National End of Life Care Programme’s critical success factors
- Good-quality end-of-life care involves an individualised approach and making time for residents
- Staff need to develop good working relationships with relatives
- Training is needed to help staff build confidence in this area of practice
Nursing and residential care homes play an important role in the care of older people at the end of life. Together, they provide final care for 16% of the population, rising to 30% of those aged over 85. Each year an average of 41,969 people die in a nursing home and 32,138 in a residential care home (National End of Life Care Intelligence Network, 2010).
Most residents living in care homes will die there. Until recently, however, there has been a lack of attention paid to the quality of care in homes, and the practice and training needs of nursing and support staff.
Our study aimed to explore the factors influencing good-quality end-of-life care in care homes, from the perspectives of staff, residents and relatives. It focused on key priorities that emerged during in-depth interviews and focus groups.
The development and support of end-of-life care in care homes is one of nine factors considered crucial by the NHS National End of Life Care Programme if more people are to exercise choice in where they die (NEoLCP, 2012a). Care homes are increasingly highlighted as significant places for end-of-life care, but only recently has the quality of practice in such settings been researched (Ingleton and Froggatt, 2009).
Care homes have adopted a range of practices to meet the challenges of caring for residents at the end of life. There has been excellent practice, with nursing and residential care homes doing their best to enable residents to die in the home, providing extra care, garnering support from the GP and domiciliary nurses, and working closely with relatives.
There has also been what we might term more basic practice, where care homes rely on GPs to hospitalise any but the most straightforward cases, sometimes causing distress to relatives, as their loved ones needlessly spend their final hours or days in hospital (Johnson, 2010).
Residents with dementia who need end-of-life care are particularly at risk of inappropriate hospital admission (Hennings et al, 2010) and some care home staff lack confidence and knowledge in end-of-life care (Froggatt et al, 2009).
In England, the End of Life Care Strategy (DH, 2008a) established the NHS National End of Life Care Programme. Three initiatives that subsequently emerged are the Liverpool Care Pathway (LCP), the Gold Standards Framework (GSF) and Preferred Priorities for Care (PPC).
The LCP is a best-practice model for good-quality care in the last hours and days of life. The GSF helps primary care staff work with patients and their families in the last year of life, and has recently been developed for care home use, where its success relies on teamwork, good staffing levels and management support (Hewison et al, 2009).
The PPC, designed and led by nurses and being piloted in care homes, is a person-held document, shared with main carers; it helps stimulate communication and the recording of end-of-life preferences, and also facilitates discussion of concerns and priorities that may not readily surface (NEoLCP, 2012b).
The NEoLCP has also instigated a care home workstream, with resources including quality assessment and guidance on organisational change and staff development.
However, good practice in care homes has a low public profile and has yet to make its mark at policy level. For example, we know little about how well homes meet individual needs (Seymour et al, 2005), how relatives’ views may be elicited (Hennings, et al, 2010), or the importance of care home cultures to end-of-life practice (NEoLCP, 2012a; Froggatt, 2000). Our study attempts to inform and develop this knowledge base.
After obtaining quantitative information via questionnaires from the managers of 135 nursing and residential care homes in England and Wales, we carried out qualitative, in-depth research in 12 homes.
This included individual face-to-face interviews with 33 residents aged 76-92, and 41 members of staff at all grades, 15 of whom were nurses and the remainder were HCAs or care workers/assistants. We also held eight focus groups with residents and 14 with staff, and conducted telephone interviews with 16 relatives of residents who had died in the preceding year.
Our research indicates the importance of six key priorities:
- Personalised care;
- Dignity and respect;
- Making time;
- Talking about end-of-life issues;
- Relatives’ roles and collaboration;
- Staff training and support.
Care home staff may or may not be aware of policy guidelines such as those around personalisation (DH, 2008b), but many know instinctively the importance of individualised care.
Pam, a nursing home care assistant, said she took time to sit with dying residents and to make sure they were wearing favourite clothing, had valued items at hand, and had the right ambience in their room, perhaps enhanced by much-loved music.
Vicky, a residential care home manager, said good-quality end-of-life care included using the relationship between a resident and staff member to help maintain the resident’s motivation.
This was the case with James, who wanted to die but accepted Vicky’s advice to show staff how to care for him. During the remainder of his life, James was less withdrawn, and engaged positively with staff. Staff can get very close to residents and go the extra mile to meet their needs.
Barbara, a care home resident, said attention to the individual and building informal relationships made staff seem approachable, which could be reassuring for those “who are on their way out”.
Dignity and respect
The words “dignity” and “respect” were raised regularly in interviews. Staff helped residents maintain dignity by paying attention, for example, to cleanliness and presentation, which could include giving manicures and pedicures, helping with hair dressing, or trimming chin whiskers.
Respect could involve putting residents at ease while carrying out intimate personal care tasks, using phrases such as “excuse my hand” to alert a resident to a possible sensation and also by informing the resident of the task and its purpose.
Respect was also shown by acknowledging and attending to cultural differences. Razia, a nursing home deputy manager, read the Bible to one resident, at his request, at the time of his death. Razia, a Hindu who had not picked up a Bible before, put aside her own faith and feelings to fulfil this resident’s last wishes. She is a good example of what Holloway (2007) refers to as “maintaining the spirit”, work that involves staff “giving of themselves”.
According to relatives, dignity and respect are shown when staff are solicitous and thoughtful, for example by using music to stimulate non-communicative residents.
Busy schedules rarely allow spare time, although staff recognise the emotional and practical importance of sitting with and listening to residents at the end of life. Making time to sit and hold a resident’s hand or stroke their face was mentioned a number of times and is important given that touch is one of the last senses retained in life (Taylor, 2009).
Patience and time are vital when working with residents who cannot easily communicate. We found that staff help by sharing the general workload so those who feel close to a particular resident can spend more time with them. According to many staff we spoke to, sitting and talking with residents should be a priority as it can help lay the groundwork for discussion and planning on end-of-life care issues, and allow careful explanation of the nature and reasons behind medical procedures.
Making time to listen also offers opportunity for creative intervention, such as helping a resident take up a valued hobby or tuning in to a desire to make a final phone call to an old friend - a good example of “getting in step” with dying patients (Holloway, 2007). Such moments provide value, enjoyment and shape positive memories for staff, and help residents and relatives attend to loose ends.
Talking about death
Talking to residents about needs and preparations at the end of life can be difficult, for personal and professional reasons.
Staff comments included that “we don’t think about these things”, and “it frightens me”; others said they never spoke of death because of the need to “protect” residents so as not to cause “upset”. This “silencing” of death has been noted in a recent study (Österlind et al, 2011), and opening up discussion with residents and families is a key challenge in care homes (NEoLC, 2010).
Staff do see the benefits of more open discussions about end-of-life care, especially when no relatives are available to provide information and act as intermediaries. A case was cited of a resident who had recorded her end-of-life preferences in a diary, which she had never discussed and of which staff were unaware of until after her death.
A minority of residents preferred not to talk to staff about end-of-life issues, saying they lived day by day and did not wish to dwell on mortality. Most, however, felt able to talk naturally on a subject that is not a foreign or distant concept. As one said, “at our age we have come across death before”.
Some residents said they were reluctant to talk about end-of-life matters with staff before talking with relatives, particularly about practical affairs, although some admitted that their children were reluctant to discuss death, so the subject lay dormant.
Mary, who lived in a residential home, said she did not want to discuss death and dying with staff but then reflected that staff were unaware of her interest in having a particular clergyman officiate at her funeral. This led her to admit that talking with staff about some practical aspects of end-of-life care would be useful.
In the context of homes as communal places, residents often voiced concern at the information vacuum that can surround the deaths of fellow residents, when they are given no information about how their life concluded nor the care they received.
Relatives’ roles and collaboration
Relatives often said their collaboration with staff reassured residents, and many residents and staff agreed. Relatives of residents who had died commonly told us they had stayed overnight at the home and been given meals and refreshments.
Relatives were sometimes encouraged to be involved and do something practical, such as washing or shaving the resident. Collaboration also appears to include staff adopting a confidential or educative role, helping relatives express anxieties about death and ask about the realities of dying.
Staff liaise with relatives about choosing where end-of-life care takes place when residents lack capacity to make this decision and, by clearly and supportively discussing medication and prognosis, help them make an informed decision.
Staff sometimes talked of having a “bond” with a relative, which may involve sharing life histories. This relationship can mean a lot to staff in terms of support and professional endorsement. Such a bond also means relatives are more likely to share information about end-of-life care needs.
Staff support and training
Staff readily admitted they required support to deal with the emotional effects of end-of-life care, and many valued a hug from a colleague or a shoulder to cry on.
More formal support tended to centre on on-to-one sessions with a more senior member of staff. Counselling seemed less available and there was some indication staff would welcome it. Some homes allowed staff to receive comfort and express feelings by attending funerals and/or arranging memorials, perhaps through the use of photographs, flowers, a book of remembrance or a tree planting, especially if they are unable to attend the funeral.
Training was seen to help staff, of all grades, improve practice. Dawn, a nursing home senior care worker, highlighted the importance of updates on procedures and medications. Some staff said they would like training that addressed the potential emotional effects of end-of-life care work.
Our research has provided a rare insight into the perceptions and experiences of end-of-life care among care home staff and residents.
A major finding is that, even though many members of staff had received little or no training in end-of-life care, they would like to do so to develop confidence and professional practice. This reinforces the view that care homes are learning environments, where people can be helped more easily to talk about death, dying and loss (Help the Aged, 2007).
Those who had received training said it had helped them engage more sensitively, respectfully and creatively with dying residents, in turn creating opportunities for residents to think through their end-of-life preferences. Care should be taken, however, not to undermine existing skills, and to take into account existing knowledge and experience when designing training (Sidell, 2003).
Our findings emphasise the relevance of a holistic approach that recognises the significance of personally meaningful end-of-life care interventions and interactions. For this to flourish, staffing levels have to be sufficient to allow time to sit with residents and care in a way that is attuned to their personality, life history and final wishes.
Supportive, purposeful working relationships between staff and relatives are mutually beneficial, improve morale at a difficult time, and help ensure what a number of relatives referred to as a “civilised death”. Our study also highlights relatives’ preparedness to work with care home staff, not only while a resident is receiving care but also after death; relatives were positive about funeral and post-funeral services in homes, and valued staff attending funerals outside the home. Fellow residents told us that post-funeral services offered valuable opportunities to say goodbye to those recently deceased.
Residents often said that they would prefer to die in their care home than in hospital, citing its relative homeliness, privacy in having their own room and the scope for relatives to be comfortable when visiting.
For staff, there are personal and professional challenges, as well as opportunities for developing dialogue with residents and collaboration with relatives. There are also support, training and resource implications involved when reaching out to dying residents as human beings with common but also individual needs.
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Department of Health (2008a) End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life. London: DH.
Department of Health (2008b) Transforming Adult Social Care. London: DH.
Froggatt K et al (2009) Advance care planning in care homes for older people: an English perspective. Palliative Medicine; 23: 4, 332-338.
Froggatt K (2000) Palliative Care Education in Nursing Homes. London: Macmillan Cancer Relief.
Help the Aged (2007) My Home Life: Quality of Life in Care Homes. London: Help the Aged.
Hennings J et al (2010) Approaching the end of life and dying with dementia in care homes: the accounts of family carers. Reviews in Clinical Gerontology; 20: 2, 114-127.
Hewison A et al (2009) Delivering ‘Gold Standards’ in end-of-life care in care homes: a question of teamwork? Journal of Clinical Nursing; 18: 12, 1756-1765.
Holloway M (2007) Negotiating Death in Contemporary Health and Social Care. Bristol: Policy Press
Ingleton C, Froggatt K (2009) Commentary on Hewison, Badger, Clifford, Thomas “Delivering ‘Gold Standards’ in end-of-life care in care homes: a question of teamwork?”. Journal of Clinical Nursing; 18, 12: 1812-1815.
Johnson M (2010) Learning and unlearning for end of life care in care homes. International Journal of Education and Ageing; 1: 1, 45-58.
National End of Life Care Intelligence Network (2010) Variations in Place of Death in England: Inequalities or Appropriate Consequences of Age, Gender and Cause of Death? Leicester: NEoLCIN.
National End of Life Care Programme (2012a) Critical Success Factors That Enable Individuals to Die in Their Preferred Place of Death. Leicester: NEoLCP.
National End of Life Care Programme (2012b) Preferred Priorities of Care. Leicester: NEoLCP.
National End of Life Care Programme (2010) The Route to Success in End of Life Care - Achieving Quality in Care Homes. Leicester: NEoLCP.
Österlind J et al (2011) A discourse of silence: professional carers reasoning about death and dying in nursing homes. Aging & Society; 31: 4, 529-544.
Seymour J et al (2005) End-Of-Life Care: Promoting Comfort, Choice and Wellbeing for Older People at the End of Their Lives. Bristol: Policy Press.
Sidell M (2003) The training needs of carers. In: Katz J, Peace S (eds) End of Life in Care Homes: a Palliative Care Approach. Oxford: Oxford University Press.
Taylor D (2009) A good ending.The Guardian. G2 Supplement. 9 June.