Living and dying: responsibility for end‐of‐life care in care homes without on‐site nursing provision ‐ a prospective study

The aim of the study was to describe the expectations and experiences of end‐of‐life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed‐method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill‐health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; ‘talking about dying’ and ‘integrating living and dying’. All participants stated that they were committed to providing end‐of‐life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end‐of‐life care, doubts from care home and primary healthcare staff about their capacity to work together when residents’ trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.     

A survey of end-of-life care in care homes: issues of definition and practice

Care homes throughout the UK provide long-term care for frail older people. Whilst care homes are a home for life, many of the older people living in this setting also die there. There is increased interest in improving the care that older people receive in care homes towards the end of life. One way to achieve this has been through links with specialist palliative care services. The knowledge held in care homes by staff, residents and their family carers has yet to be fully integrated into this work. Consequently, a postal survey of care home managers in one English county was undertaken to examine the characteristics of end-of-life care for older people in these care homes. We sought to establish the managers' understanding of end-of-life care; the extent to which dying and death is present in this setting; the attributes of the resident population living in these care homes; and the availability of resources to support the provision of end-of-life care in this setting. The survey identified that managers held diverse understandings regarding the meaning of end-of-life care. The features of the residents' conditions and the dying that they experience requires a different way to conceptualise end-of-life care. A longer-term perspective is offered here that encompasses the whole period of a person's residence in a care home.     

Access to health care in nursing homes: a survey in one English Health Authority

The objective of the study was to establish the arrangements for provision of general practitioner (GP), nursing advice, chiropody, physiotherapy and speech and language services to nursing homes and to establish the charging policies for those services. To this end a telephone survey of the managers of the 51 nursing homes registered with one English health authority, Merton, Sutton and Wandsworth Health Authority, was undertaken. Forty-nine homes (96%) with 1541 residents responded. Twenty per cent of homes had no regular GP visits and half the homes had no planned medication reviews. One in five homes (27% of residents) had access to all health-care services. Eight homes (10% of residents) did not have access to therapy services or nursing advice. Thirty-three homes used private or both private and NHS chiropody services and 16 homes used the NHS service only. Seventeen homes used private or both private and NHS physiotherapy services with 10 homes receiving a regular private service. Twenty homes used the NHS service and 12 homes (15% of residents) had used no physiotherapy service. None used private speech and language services. Twenty-four of the 33 homes using private chiropody charged extra for this service compared with two of 10 homes using regular private physiotherapy. The findings suggest that there are inequalities in access to health care services in nursing homes. Moreover, there has been a deterioration in access to and levels of provision of NHS nursing and physiotherapy services since the national survey undertaken by the Office Population Censuses and Surveys (OPCS) in Great Britain in the mid-1980s. The new regulatory framework for older people must include systems for monitoring the provision of health services.     

Long-term care. Unknown quantities

A small study of nursing home owners, managers, residents and relatives found effective management depended on strong leadership skills, high bed occupancy, enthusiastic staff and low staff turnover. Funding problems were a key issue for homes, creating massive insecurity for residents, relatives and staff. There was a feeling that nursing homes could be used more effectively by the NHS, but there were concerns about capacity and competence. The viability of homes would be improved by annual block booking by the NHS. This would also facilitate the development of intermediate care. A national development programme for nursing home managers is needed.     

Residential care for older people: job satisfaction and psychological health in care staff

Staff in local authority residential homes for older people care for dependent and demanding residents. Recent research has linked resident aggression to psychological disturbance in these staff. Despite this, little is known about the experiences of staff, many of whom are facing significant changes in the residents they care for. This paper examines psychological well-being, perceptions of the work environment and job satisfaction in 48 members of staff from two local authority homes. Results indicate that these staff experience equivalent stress to professional nurses in an NHS setting. Moderate levels of emotional exhaustion are associated with poor clarity about the job they are now required to perform. There is also a poor sense of personal accomplishment. Differences in the needs of staff, and the implications for staff development programs within individual homes are discussed. Given reports of high illness figures for care staff in public sector homes for older people, we argue that carefully targeted staff development programs have the potential for reducing burnout and days lost through illness. Such programs can also improve ‘therapeutic reciprocity’ which in turn might enhance psychological well-being in care staff, and the quality of life for residents.     

Addressing the nutritional needs of older people in residential care homes

In the UK and Europe, malnutrition in older people is a significant and continuing problem. Malnutrition predisposes to disease, impedes recovery from illness, increases mortality and is costly to society. Despite the high number of older people potentially at risk, malnutrition in care homes has been under explored. There is concern that national guidelines regarding the nutritional care of older people in residential care homes are not always implemented. This qualitative study explored the factors that influence the nutritional care provided to residents in two different types of local authority residential care homes (providing personal care) in Wales. One home had communal dining rooms; the other had eight bedded units with their own kitchen and dining facilities. The sample of 45 participants, comprised 19 staff (managers, care and catering staff), 16 residents and 10 residents' relatives. Data were collected using semi-structured interviews, focus groups, observation and documentary review between August 2009 and January 2010. This paper focuses on how staff assessed and addressed residents' nutritional needs. In both care homes, staff strove to be responsive to residents' dietary preferences, provided person-centred care and worked in partnership with residents and their families to provide nutritious food in a homely environment. Neither home conducted nutritional screening to identify those at risk of malnutrition, contrary to national guidelines, but relied on ad hoc observation and monitoring. The staff's knowledge of special dietary needs was limited. A need for further training for care home staff regarding the importance of nutrition in maintaining health in older people, use of nutritional screening and special dietary needs was identified. Shared nutrition training between health and social care staff needs expansion and policy implications in terms of an enhanced regulatory focus on maintaining nutritional needs in care homes are proposed.     

A systematic review of integrated working between care homes and health care services

Background

In the UK there are almost three times as many beds in care homes as in National Health Service (NHS) hospitals. Care homes rely on primary health care for access to medical care and specialist services. Repeated policy documents and government reviews register concern about how health care works with independent providers, and the need to increase the equity, continuity and quality of medical care for care homes. Despite multiple initiatives, it is not known if some approaches to service delivery are more effective in promoting integrated working between the NHS and care homes. This study aims to evaluate the different integrated approaches to health care services supporting older people in care homes, and identify barriers and facilitators to integrated working.

Methods

A systematic review was conducted using Medline (PubMed), CINAHL, BNI, EMBASE, PsycInfo, DH Data, Kings Fund, Web of Science (WoS incl. SCI, SSCI, HCI) and the Cochrane Library incl. DARE. Studies were included if they evaluated the effectiveness of integrated working between primary health care professionals and care homes, or identified barriers and facilitators to integrated working. Studies were quality assessed; data was extracted on health, service use, cost and process related outcomes. A modified narrative synthesis approach was used to compare and contrast integration using the principles of framework analysis.

Results

Seventeen studies were included; 10 quantitative studies, two process evaluations, one mixed methods study and four qualitative. The majority were carried out in nursing homes. They were characterised by heterogeneity of topic, interventions, methodology and outcomes. Most quantitative studies reported limited effects of the intervention; there was insufficient information to evaluate cost. Facilitators to integrated working included care home managers' support and protected time for staff training. Studies with the potential for integrated working were longer in duration.

Conclusions

Despite evidence about what inhibits and facilitates integrated working there was limited evidence about what the outcomes of different approaches to integrated care between health service and care homes might be. The majority of studies only achieved integrated working at the patient level of care and the focus on health service defined problems and outcome measures did not incorporate the priorities of residents or acknowledge the skills of care home staff. There is a need for more research to understand how integrated working is achieved and to test the effect of different approaches on cost, staff satisfaction and resident outcomes.

     

The use of acute hospital services by elderly residents of nursing and residential care homes

The objective of this study was to compare hospitalisation rates by cause of admission, hospital death rates and length of stay for residents from nursing and residential care homes with those in the community. This is a retrospective study of acute hospital emergency admissions in one health district, Merton, Sutton and Wandsworth between April 1996 and March 1997. Data linkage and manual look up were used to derive emergency hospital admissions for residents of care homes aged 65 and over. Admission rates were calculated for cause, length of stay and hospital death for residents of care homes and in the community with relative risks. The relative risk of emergency admission from a care home compared with the community was 1.39 for all diagnoses, 2.68 for all injuries, and 3.96 for fracture of neck of femur. The relative risk of dying in hospital for care home residents was 2.58 overall, and 3.64 in the first 48 hours of a hospital stay (all P-values <0.0001). Admission rates were higher from residential than from nursing homes. There was some increase in admissions from homes during holiday periods and over Christmas. In conclusion, there are major difficulties in monitoring admissions from nursing and residential care homes due to poor quality recording and inaccuracies in NHS coding. This was compounded by an absence of data on the age and sex profile and healthcare needs of the resident population in care homes. Prospective studies are required to ascertain when admission is avoidable and when it is appropriate. The information strategy needs to ensure that routine data sources are capable of monitoring the use of hospital services by residents of care homes.     

Risks to home care workers: Professional perspectives

Care at home is fundamental to community care policy, but the simultaneous growth of health and safety regulation has implications for home care services because of the duty of employers towards home care workers. This grounded theory study set in Northern Ireland used data from 19 focus groups and nine semi-structured interviews with a range of health and social services professionals and managers to explore perspectives on planning long term care for older people. Home care workers faced a wide range of hazards in the homes of clients, who themselves were faced with adapting their living habits due to their changing health and care needs and ‘risks.’ Creative approaches were used to ensure the health and safety of home care workers and simultaneously to meet the choices of clients. Staff experienced feelings of conflict when they judged it necessary to impose their way of providing home care and thus impose their values on clients to create a safe working environment. There was variation between and within organizations in terms of the staff focus on client needs or on their employer responsibility towards home care workers. The planning of home care services must take account of both the choices of clients and the hazards facing home care staff.     

The continuing care guidelines and primary and community health services

The confirmation of NHS responsibilities for continuing health care has important implications for primary and community health services. In early 1996, during the period of consultation on draft local policies and eligibility criteria, exploratory interviews were carried out with general practitioners (GPs), community nursing managers, primary care development officers and social services purchasers in three health authority areas. The interviews indicated that few GPs had responded to local consultation and were only slowly becoming aware of the implications for the provision and purchasing of primary and community health services. Moreover, local continuing care policies had apparently not addressed two issues which GPs and community nursing staff indicated were currently highly problematic: their responsibilities in relation to independent sector residential and nursing home patients; and the consequences for primary health and community nursing services of hospital discharge decisions. The need for purchasers and commissioners of health services, whether health authorities or GPs, to begin collecting information on patients' potential needs for continuing care services was widely recognised as an urgent priority.     

Work satisfaction,stress, quality of care and morale of older people in a nursing home

The aim in the present study, which was carried out in one nursing home for older people, was to determine the feasibility of working with care workers and very frail service users to investigate links between the levels of work satisfaction and stress of the staff, and the quality of care and morale of the residents. Most of the 44 care staff (70%) and 22 cognitively intact residents (82%) participated willingly in completing rating scales through self-completion questionnaire or by interview. Well-validated scales were used to measure job satisfaction, work stress, organisational commitment, perceived quality of care, and morale and mental health. The findings revealed a staff group with a fairly high level of job dissatisfaction and stress, who were, nevertheless, very committed to the nursing home. The morale of the residents was good although the residents rated the home atmosphere lower than the staff did. Significant correlations emerged, in the expected direction, between satisfaction, commitment, stress and quality of care perceived by staff. The correlations between home atmosphere perceived by residents, and their morale and mental health were low; further investigation is needed with a larger sample. This feasibility study supports the need for further research using a case-study approach in a small number of homes because of the labour-intensive nature of the data collection and the importance of triangulating data from many sources.     

Spiritual care. Soul survivors

The importance of meeting spiritual needs when caring for older people is increasingly acknowledged. A survey of nursing and residential homes in the Trent region showed managers interpreted spiritual care very broadly, according favourite television programmes and countryside visits some spiritual significance. Most thought all home staff had a responsibility for residents' spiritual care.     

Carers' reflections on nursing home and NHS long-stay care for elderly patients

The aim of this study was to compare the perceptions of carers of elderly long-stay care patients who are now in nursing homes in three health districts in a former Regional Health Authority and in remaining long-stay geriatric National Health Service (NHS) wards. One hundred and ninety-eight nursing home carers (78%) and 128 NHS carers (83%) were interviewed by telephone, using a semi-structured questionnaire and open questions. The impact of caring at home was shown to be greater on NHS than on nursing home carers. Most were satisfied with the care, staff and atmosphere of the nursing home or hospital. Nursing homes were perceived to offer better ‘hotel’ facilities and a more pleasant environment. They were seen as better at respecting patients' privacy. The NHS was regarded as superior in offering clinical and rehabilitative services. Most participants thought the institution was the right place for their relative, although in general, it was thought to be better to care for elderly people at home. ‘Care in the community’ was supported, but carers were realistic about alternatives when informal care ceased to be a reasonable option. There was little ‘choice’ between public and private sector care. For many patients, entry into the institution followed directly from an acute hospital admission. The only choice was between care in a long-stay facility or remaining at home, with the patient becoming increasingly dependent and the carer becoming increasingly unable to cope. The formal aspect of community care should be to be organized rationally and accepted as a valid response to the needs of some dependent elderly patients and their carers.     

Using older home care user experiences in performance monitoring

Home care services play a fundamental role in England in supporting older and disabled people in their own homes. In order to identify and monitor the degree to which these services are providing good quality services, in 2003 the government required all councils with social services responsibilities (CSSR) to undertake user experience surveys among older service users. The questionnaire was required to include four questions, two of which were designed to be used as Best Value Performance Indicators (BVPI) reflecting the quality of home care of older people. Thirty‐four local authorities participated in an extension study providing data from 21 350 home care users. The aim of the study was to answer three questions: (1) Do the performance indicators reflect home care quality? (2) Are the performance indicators using the most appropriate cut‐off points? (3) What are the underlying constructs of home care quality? Evidence was found to support the use of two of the performance indicators and the current cut‐off point being used for the satisfaction indicator. Factor analysis identified indicators of important dimensions of quality that were associated with overall satisfaction.     

Facilitating choice and control for older people in long-term care

The community care reforms enabled some older people with severe disabilities to remain at home with domiciliary care services, as an alternative to institutional admission. This paper explores the extent to which the reforms actually enabled older people receiving domiciliary care to have greater choice and control in their daily lives than older people living in institutions. Findings are reported from a comparative study carried out in Greater Belfast, Northern Ireland, that determined the extent to which the subjective quality of life of older people – particularly autonomy – varied according to the type of setting. The older people were interviewed using a structured interview schedule and subjective autonomy was assessed using a measure of perceived choice. The measure consisted of 33 activities relating to aspects of everyday life such as what time to get up, when to see visitors or friends, and how much privacy was available. Qualitative data were also recorded which informed on the older people's perspectives on their own lives, particularly the extent to which they exercised choice on a daily basis. Two‐hundred and fourteen residents in 45 residential and nursing homes were interviewed, as were 44 older people receiving domiciliary care in private households. The study found that older people living in institutions perceived themselves to have greater decisional autonomy in their everyday lives than did older people receiving domiciliary care. Indeed, it was clear that living at home did not ensure that one's decisional autonomy would be supported. However, living alone may facilitate exercising a relatively higher degree of autonomy when living at home. Whilst the community care reforms have provided some older people who have severe disabilities with the option of receiving care at home, this has not necessarily enabled them to have greater choice and control in their everyday lives than older people admitted to institutions.     

Why are some care homes better than others? An empirical study of the factors associated with quality of care for older people in residential homes in Surrey,England

This paper reports an empirical study that investigated associations between the quality of care received by older people in residential settings and features of the care homes in which they live. Data were gathered from the first announced inspection reports (2002–2003) of all 258 care homes for older people in one county of England (Surrey). The number of inspected standards failed in each home was used as the main indicator of quality of care. Independent variables (for each home) were: size, type, specialist registration, on‐site nursing, ownership, year registered, location, maximum fee, vacancies, resident dependency, whether the home took publicly funded residents, care staff qualifications and managerial quality. Quality of care was modelled using a Poisson count maximum likelihood method based on 245 (91%) of the inspected homes for which relevant data were available. The results showed that quality of care (as defined by failures on national standards) was statistically associated with features of care homes and their residents. A higher probability of failing a standard was significantly associated with being a home that: was a for‐profit small business (adjusted risk ratio (RR) = 1.17); was registered before 2000 (adj. RR = 1.22), accommodated publicly funded residents (adj. RR = 1.12); was registered to provide nursing care (adj. RR = 1.12). Fewer failures were associated with homes that were corporate for‐profit (adj. RR = 0.82); held a specialist registration (adj. RR = 0.91); charged higher maximum fees (adj. RR = 0.98 per 100 pound sterling unit). A secondary analysis revealed a stronger model: higher scores on managerial standards correlated with fewer failures on other standards (r = 0.65, P < 0.001). The results of this study may help inform future policy. They are discussed in the context of alternative approaches to measuring quality of residential care, and in terms of their generalisability.     

Staff perceptions of end-of-life care in long-term care

OBJECTIVE: Although residential care/assisted living facilities and nursing homes have increasingly become a significant site of death for older Americans, little is known about staff perceptions of end-of-life care, perceived need for improvement in care, and differences by type of setting. DESIGN, SETTING, AND PARTICIPANTS: Ninety-nine staff provided their perceptions of end-of-life care for 99 decedents from 74 residential care/assisted living facilities and nursing homes in four states as part of a larger cohort study. Staff were interviewed retrospectively regarding care provided during residents' last month of life. MEASUREMENTS: Staff reported on 11 areas of end-of-life care, describing the importance of each area and the level of improvement they felt was indicated. Weighted "need for change" scores were calculated as the product of perceived importance and need for improvement. RESULTS: Both residential care/assisted living and nursing home staff reported a need for more staff education and nursing assistant time, as well as more use of volunteers. The two lowest ranked items for both facility types were involvement of hospice and encouragement for staff to attend funeral services. Nursing home staff perceived a greater need for improvement than residential care/assisted living staff in all 11 areas. CONCLUSION: Results underscore the staffing demands of end-of-life care across facility types, and staff desires to be able to provide quality care throughout the dying process.