Katherine Froggatt

The rapidly changing location of death in Canada, 1994-2004.

This 2008 study assessed location-of-death changes in Canada during 1994-2004, after previous research had identified a continuing increase to 1994 in hospital deaths. The most recent (1994-2004) complete population and individual-level Statistics Canada mortality data were analyzed, involving 1,806,318 decedents of all Canadian provinces and territories except Quebec. A substantial and continuing decline in hospitalized deaths was found (77.7%-60.6%). This decline was universal among decedents regardless of age, gender, marital status, whether they were born in Canada or not, across urban and rural provinces, and for all but two (infrequent) causes of death. This shift occurred in the absence of policy or purposive healthcare planning to shift death or dying out of hospital. In the developed world, recent changing patterns in the place of death, as well as the location and type of care provided near death appear to be occurring, making location-of-death trends an important topic of investigation. Canada is an important case study for highlighting the significance of location-of-death trends, and suggesting important underlying causal relationships and implications for end-of-life policies and practices.

Palliative care and nursing homes: where next?

Specialist palliative care providers are seeking to transfer the principles of palliative care to more general care settings in order to meet the needs of people with diseases other than cancer. To prepare nursing home staff to provide palliative care increasing numbers of educational initiatives are now being offered. This paper explores some of the assumptions that underpin these initiatives. Recommendations are made that recognize the expertise already held within nursing homes and propose a collaborative approach to promote the appropriate integration of palliative care with nursing home practice.

End of life care for community dwelling older people with dementia: an integrated review

To review the evidence for end‐of‐life care for community dwelling older people with dementia (including those resident in care homes).

Do nursing homes for older people have the support they need to provide end-of-life care? A mixed methods enquiry in England

Nursing homes are a common site of death, but older residents receive variable quality of end-of-life care. We used a mixed methods design to identify external influences on the quality of end-of-life care in nursing homes. Two qualitative case studies were conducted and a postal survey of 180 nursing homes surrounding the case study sites. In the case studies, qualitative interviews were held with seven members of nursing home staff and 10 external staff. Problems in accessing support for end-of-life care reported in the survey included variable support by general practitioners (GPs), reluctance among GPs to prescribe appropriate medication, lack of support from other agencies, lack of out of hours support, cost of syringe drivers and lack of access to training. Most care homes were implementing a care pathway. Those that were not rated their end-of-life care as in need of improvement or as average. The case studies suggest that critical factors in improving end-of-life care in nursing homes include developing clinical leadership, developing relationships with GPs, the support of ‘key’ external advocates and leverage of additional resources by adoption of care pathway tools.

Loss of weight and loss of appetite in advanced cancer: a problem for the patient, the carer, or the health professional?

This paper aims to examine the loss of weight and loss of appetite as ‘problems’ experienced by patients with advanced cancer and those that care for them. It reports the results of a systematic search of the literature and presents the findings as a narrative review. Research to date has focused upon charting the prevalence and incidence of these symptoms, but little empirical work has been conducted to investigate how patients and carers experience these problems. There is some evidence to suggest that anorexia may be more distressing for those caring for the patient than the person suffering from the symptom itself. Understanding the reason for this anguish requires an appreciation of the meaning of food refusal and constitutes the first step towards informing the development of effective interventions. Such exploratory work is mandatory if health professionals wish to move beyond speculation and deliver interventions that provide meaningful benefits for the cancer patient and their family.

Approaching the end of life and dying with dementia in care homes : the accounts of family carers.

Research into end of life and dying with dementia in care homes from the family carers perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.

Advance care planning in care homes for older people: an English perspective.

Advance care planning (ACP) as a process of discussing and recording wishes for future care and treatment is increasingly being promoted and discussed in the UK, reflecting recent changes in legislation. This study describes current ACP practice in care homes for older people drawing on data from a questionnaire survey (n = 213) of, and interviews (n = 15) with, care home managers. Whilst consultation about general care is taking place in the majority of homes surveyed using both formal and informal processes, the number of residents that have completed any ACP processes varies. Managers face intrinsic and extrinsic challenges related to the ascertaining of, and the implementing of wishes as they address ACP in the care home context. Until these wider contextual factors are addressed it will be difficult for staff in care homes to effectively undertake and implement ACP in care homes.

Life and death in English nursing homes : sequestration or transition?

Nursing homes as care institutions seek to offer a home where people can live until their death. A potential conflict, therefore, exists as nursing homes are both a place where life is lived and where death is regularly encountered. It has been proposed that within residential care homes for older people, dying individuals are separated from living people. Drawing on fieldwork undertaken in four English nursing homes the management of the dying process and the relationship between life and death is explored. There is much uncertainty inherent in the boundary between life and death for many residents in nursing homes. The relationship between life and death for these residents is less about the sequestration of dying people from living people, but rather the creation of transitional states between these two polarities.

Values associated with public involvement in health and social care research: a narrative review

Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI.

Review: what evidence is there about the specific environmental needs of older people who are near the end of life and are cared for in hospices or similar institutions? A literature review.

Relatively little is known about the type of physical environment which is needed and preferred by patients aged 65 and over, with a prognosis of 1 year or less, who are receiving care in hospitals, care homes and hospices, and their families and staff. A narrative literature review was conducted to identify and analyse evidence on this issue, with twenty-nine papers meeting the inclusion criteria. The patients were found to have a wide range of views on their environment, but there was some variation between the views of patients and those of their families and staff. Four main themes emerged: the physical environment should be ‘homely’; it should support patients’ need for social interaction and privacy; it should support the caring activities of staff, family members and patients; and it should allow opportunities for spiritual expression. It is evident that the physical environment contributes significantly to the quality of life of older people with a life-limiting illness, and there is a need for more research in this area. Regular assessment of patients’ environmental needs should form part of care planning.