Glenys Caswell

Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study

BackgroundThis paper focuses on communication between hospital staff and family carers of patients dying on acute hospital wards, with an emphasis on the family carers’ perspective. The age at which people in the UK die is increasing and many continue to die in the acute hospital setting. Concerns have been expressed about poor quality end of life care in hospitals, in particular regarding communication between staff and relatives. This research aimed to understand the factors and processes which affect the quality of care provided to frail older people who are dying in hospital and their family carers.MethodsThe study used mixed qualitative methods, involving non-participant observation, semi-structured interviews and a review of case notes. Four acute wards in an English University teaching hospital formed the setting: an admissions unit, two health care of older people wards and a specialist medical and mental health unit for older people. Thirty-two members of staff took part in interviews, five members of the palliative care team participated in a focus group and 13 bereaved family carers were interviewed. In all, 245 hours of observation were carried out including all days of the week and all hours of the day. Forty-two individual patient cases were constructed where the patient had died on the wards during the course of the study. Thirty three cases included direct observations of patient care. Interviews were completed with 12 bereaved family carers of ten patient cases.ResultsCarers’ experience of the end of life care of their relative was enhanced when mutual understanding was achieved with healthcare professionals. However, some carers reported communication to be ineffective. They felt unsure about what was happening with their relative and were distressed by the experience of their relative’s end of life care.ConclusionsEstablishing a concordant relationship, based on negotiated understanding of shared perspectives, can help to improve communication between healthcare professionals and family carers of their patients.

Personalisation in Scottish funerals: Individualised ritual or relational process?

Abstract While there is a wide variation in the ways in which the term personalisation is used in the funeral context, there are a number of common threads. For example, there is a broad consensus that a personalised funeral will feature references to the life and character of the deceased person and such a funeral will probably have been planned by the bereaved family, who may even participate in its conduct. However, academics working with the concept do not always use the term in precisely the same way. This paper suggests that while these ways of considering personalisation are useful, they do not include the complex processes by which a personalised funeral is planned and carried out. Using data from a study exploring Scottish funeral practices as illustration, the article proposes that the sociology ofpersonal life offers tools that may help to unpack the process of planning such a funeral. These tools are the concepts of memorialisation, biography, embeddedness and relationality. Together these concepts may help to explain the process by which a personalised funeral is planned, and the influences that impact upon the people doing the planning.

Lung cancer diagnosed following an emergency admission: Mixed methods study of the management, outcomes and needs and experiences of patients and carers

BACKGROUND In the UK, although 40% of patients with lung cancer are diagnosed following an emergency admission (EA), data is limited on their needs and experiences as they progress through diagnostic and treatment pathways. METHODS Prospective data collection using medical records, questionnaires and in-depth interviews. Multivariate logistic regression explored associations between diagnosis following EA and aspects of interest. Questionnaire responses with 95% confidence intervals were compared with local and national datasets. A grounded theory approach identified patient and carer themes. RESULTS Of 401 patients, 154 (38%) were diagnosed following EA; 37 patients and six carers completed questionnaires and 13 patients and 10 carers were interviewed. Compared to those diagnosed electively, EA patients adjusted results found no difference in treatment recommendation, treatment intent or place of death. Time to diagnosis, review, or treatment was 7-14 days quicker but fewer EA patients had a lung cancer nurse present at diagnosis (37% vs. 62%). Palliative care needs were high (median [IQR] 21 [13-25] distressing or bothersome symptoms/issues) and various information and support needs unmet. Interviews highlighted in particular, perceived delays in obtaining investigations/specialist referral and factors influencing success or failure of the cough campaign. CONCLUSIONS Presentation as an EA does not appear to confer any inherent disadvantage regarding progress through lung cancer diagnostic and treatment pathways. However, given the frequent combination of advanced disease, poor performance status and prognosis, together with the high level of need and reported short-fall in care, we suggest that a specialist palliative care assessment is routinely offered.

Agency in the context of social death: dying alone at home

Each year, a number of bodies are found of people who have died alone at home and whose absence from daily life has not been noticed. Media reports tend to cast either these individuals as deviant, or wider society as having abandoned them to a lonely death. This paper proposes an alternative view, one in which some individuals choose to withdraw from society and enter a period of social death prior to their biological deaths. They may then be subject to a renewed social life after death, brought about through post-death social processes. The paper begins by laying out the background to the pilot study on which it draws, before discussing some of the methodological and ethical issues involved in carrying out such research. A case study is then presented as a focus for a discussion of the possible role of agency and choice within the context of social death.

Death as a Fateful Moment? The Reflexive Individual and Scottish Funeral Practices

Death is considered by some commentators to be problematic for the inhabitants of a late modern era, so that when individuals are confronted by death they revert to using traditional institutions and practices. This paper draws on sociological research exploring Scottish funeral practices to consider whether this is the case, or whether individuals are able to employ a process of self-reflexivity even when they are planning the funeral of someone about whom they cared. Two funerals are described in the article, and the suggestion is made that their organisers behaved some of the time as reflexive individuals as well as also making use of the traditional authorities of modernity, such as the family and church.

The costs, resource use and cost-effectiveness of Clinical Nurse Specialist–led interventions for patients with palliative care needs: A systematic review of international evidence:

Background: Patients with palliative care needs do not access specialist palliative care services according to their needs. Clinical Nurse Specialists working across a variety of fields are playing an increasingly important role in the care of such patients, but there is limited knowledge of the extent to which their interventions are cost-effective. Objectives: To present results from a systematic review of the international evidence on the costs, resource use and cost-effectiveness of Clinical Nurse Specialist–led interventions for patients with palliative care needs, defined as seriously ill patients and those with advanced disease or frailty who are unlikely to be cured, recover or stabilize. Design: Systematic review following PRISMA methodology. Data sources: Medline, Embase, CINAHL and Cochrane Library up to 2015. Studies focusing on the outcomes of Clinical Nurse Specialist interventions for patients with palliative care needs, and including at least one economic outcome, were considered. The quality of studies was assessed using tools from the Joanna Briggs Institute. Results: A total of 79 papers were included: 37 randomized controlled trials, 22 quasi-experimental studies, 7 service evaluations and other studies, and 13 economic analyses. The studies included a wide variety of interventions including clinical, support and education, as well as care coordination activities. The quality of the studies varied greatly. Conclusion: Clinical Nurse Specialist interventions may be effective in reducing specific resource use such as hospitalizations/re-hospitalizations/admissions, length of stay and health care costs. There is mixed evidence regarding their cost-effectiveness. Future studies should ensure that Clinical Nurse Specialists’ roles and activities are clearly described and evaluated.

‘I’ve no fear of dying alone’: exploring perspectives on living and dying alone

Abstract Dying alone is portrayed as undesirable in terms of policy, health and social care provision, the wishes of family and friends, and in popular culture. Despite this, people do often die alone, both in institutional and domestic settings. This paper reports findings from a study which explored ways of investigating individuals’ perspectives on dying alone at home. It tested methods of recruitment and data collection, gathered preliminary data and explored the ethical issues involved. Interviews with 11 older people living alone and 7 hospice at home nurses are reported here. For the older people, the idea of dying alone was less problematic than the idea of needing care and support from others, and the perceived loss of independence that this would entail. Participants reacted in differing ways to threats to their independence, but all utilised a form of relational reflexivity when considering the effect their actions might have on others. The nurses would prefer no one to die alone, but believed they had seen patients managing their own dying so that they could be alone at the moment of death. The paper suggests that dying alone may be a problem for survivors, rather than for the person who is dying.

Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

Background Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers. Objectives To produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers. Process of development Participatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers. Final training programme The outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers. The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator’s notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable. Conclusion The programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.