Gary Bellamy

Older people's views about home as a place of care at the end of life

Objectives: To explore the attitudes of older people towards home as a place of care when dying. Design: A two-phase qualitative study using focus groups and semi-structured interviews. Participants: Eight focus group discussions were held with 32 participants recruited from six purposively selected community groups representing older people in Sheffield, UK. A further 16 men and 29 women participated in semi-structured interviews. Results: Participants identified that home was more than a physical location, representing familiarity, comfort and the presence of loved ones. While participants anticipated that home would be their ideal place of care during dying, practical and moral problems associated with it were recognised by many. Some had no informal carer. Others did not want to be a ‘burden’ to family and friends, or were worried about these witnessing their suffering. Those who had children did not wish them to deliver care that was unduly intimate. Concerns were expressed about the quality of care that could be delivered at home, particularly in relation to accommodating health technologies and providing adequate symptom relief. Worries were also expressed about those living in poor material circumstances. Mixed views were expressed about the presence of professional carers within the home. Although they were seen to provide much needed support for the informal carer, the presence of ‘strangers’ was regarded by some as intrusive and compromising the ideal of ‘home’. Discussion: Older people perceive factors they associate with ‘home’ as crucial to a good death, most notably presence of friends and family, but many anticipate that they would prefer to be cared for elsewhere when dying. These findings run counter to assumptions that the medicalised, institutional death cannot be a ‘good death’. It is important that dying in hospital is not demonized, but rather efforts made to examine how institutional deaths can take on a more meaningful quality.

‘That’s part of everybody’s job’: the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care

Background: the right for patients of all diagnoses to be in receipt of palliative care from an early point in the diagnosis of a life-limiting condition is now enshrined in policy in a number of countries and increased emphasis is placed upon the role of generalist palliative care. However, little is known as to how this policy is enacted on the ground. Aim: to explore understandings of, and perceived roles in relation to, palliative care provision amongst generalist and specialist health care providers in England and New Zealand. Design: qualitative data were collected via individual interviews and focus groups. Setting/participants: participants comprised generalist and specialist palliative care providers working in a variety of settings in England (nu2009=u200958) and New Zealand (nu2009=u200980). Results: the following issues with significant implications for this new phase of development for palliative care were identified: (1) difficulties with terminology and perceived roles/responsibilities; (2) problems of integrating palliative care into a generalist workload; (3) challenges in generalist/specialist partnership working; and (4) the potential negative consequences of specialization. Conclusions: these data indicate that, within England and New Zealand, the policy rhetoric of universal palliative care provision is not being straightforwardly translated into service delivery and individual clinical practice. Further research is required to explore and evaluate different models of organization and service provision that empower ‘generalists’ to provide palliative care, without resulting in deskilling. Finally, definitional clarity at an academic/policy level is also needed.

Exploring the impact of sexual orientation on experiences and concerns about end of life care and on bereavement for lesbian, gay and bisexual older people

This article explores how sexual orientation1 may impact on concerns about, and experiences of, end of life care and bereavement within same-sex relationships. We draw on exploratory data from four focus groups with lesbian and gay elders ( N = 15), which formed part of a larger project investigating a range of older people’s concerns about end of life care. We set the findings in the context of debates about broader changes to family forms within late modernity, alongside social change and demographic shifts. Our focus on end of life care and bereavement sheds light on a series of relatively neglected issues associated with lesbian, gay and bisexual (LGB) ageing and, more broadly, the topics of care and support within ‘non-traditional’ intimate relationships and personal networks. We point to the importance of further research into the lives of older lesbians and gay men facing issues of end of life care and bereavement.

Barriers and facilitators to the receipt of palliative care for people with dementia: The views of medical and nursing staff

Background: The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms of care, but evidence indicates that many fail to access such provision at the end of life. The role of the health care team is pivotal if people with dementia are to benefit from the transition to palliative care. Aim: This paper reports on qualitative research conducted in the UK that sought to explore the experiences of health care practitioners working in palliative care and sought to establish the issues relating to end-of-life care for people with dementia. Design: Eight focus groups and four individual interviews were held. Data were analysed using a thematic approach. Setting/participants: The study included palliative care practitioners (n = 58) including medical, nursing and allied health professionals. Participants were recruited from acute hospitals, general practice, hospices and specialist palliative care units in the UK. Results: Four themes were identified: Making the transition; Competence challenged; ‘The long view’ and Working together. Whilst there exists good practice in this area, the barriers to timely and appropriate transitions to palliative care for people with dementia and their families continue to exist. The paper concludes with recommendations for policy and practice development.

Using focus groups to explore older people's attitudes to end of life care

This paper reports on the methodological and ethical issues that were encountered when using focus groups to explore older peoples knowledge, beliefs and risk perceptions about the use of innovative health technologies in end of life care. Older people drawn from community organisations in Sheffield, England, took part in discussions about the application of ‘life prolonging’ and ‘comfort care’ technologies during serious illness and impending death. The paper offers a reflective account of the management of recruitment and informed consent, and of the issues that arose when facilitating group discussions of potentially distressing material. It concludes with a brief account of the steps that were taken to enhance the ‘credibility’ of the data.

A study to define: profound and multiple learning disabilities (PMLD).

This study aimed to define the term ‘profound and multiple learning disabilities’ (PMLD). A shared understanding of terminology or diagnostic terms describing groups of individuals is important for the purposes of strategic development, service planning, and the provision and equity of service delivery. A literature review provided different definitions and meanings associated with the term. The meaning attributed to the definitions was explored in focus groups and individual interviews (face to face and telephone) with service managers, commissioners, practitioners, frontline healthcare staff and family carers who provide services, support and care for people with PMLD. Further iterative discussions were held with a smaller group over the precise wording of the chosen definition to ensure there was a shared and common understanding. Personal characteristics for the purpose of this study are defined as diagnoses, disabilities, impairments, activity restrictions and other characteristics which represent a person with PMLD.

What are the priorities for developing culturally appropriate palliative and end-of-life care for older people? The views of healthcare staff working in New Zealand

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, Pacific Island and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end-of-life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, Pacific Island and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide hands-on care. The role of family in decision-making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in hands-on palliative care and decision-making requires care staff to relinquish their role as expert provider. Counter to the prioritisation of autonomy in Western health-care, collective decision-making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end-of-life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision.

Good deaths, bad deaths: older people's assessments of the risks and benefits of morphine and terminal sedation in end-of-life care

Little is known about end-of-life preferences or how risks are assessed surrounding doctor-patient or doctor-family relationships during end-of-life decision making. Older people are often excluded from end-of-life care research although there is some evidence that most would express preferences for comfort care rather than life-sustaining interventions if facing terminal illness. This paper draws on data from focus group discussions with older people to illuminate how interpersonal and bodily aspects of the dying process are associated with shifting evaluations of two core techniques of palliative care: morphine administration and terminal sedation. Participants understood an idealised death to be that in which morphine administration and terminal sedation serve to provide dying people with an easy, comfortable and quiet death. In this, bodily symptoms of distress are discreetly controlled and death occurs at an appropriate time and place. At the same time the role of medicine in procuring an idealised death is linked to profound concerns about new risks that flow from the intermarriage of medical science with the basic human obligation of providing compassionate care to those who are dying.

‘It's my pleasure?’: the views of palliative care patients about being asked to participate in research

Abstract Background There is a paucity of studies which explore palliative care patients’ involvement in research. The involvement of patients with a life-limiting illness in research raises numerous ethical concerns for researchers keen to take account of their views and experiences of service provision. Assumptions are readily made about whether participation is appropriate for this patient group due to their perceived vulnerability. Aim To explore the views of hospice users regarding their motivations for taking part in a study, designed to inform the delivery of care, and ensure ongoing service improvement. Methods Based on a larger pilot study to examine patients’ satisfaction with hospice care, and using a qualitative interview approach, twenty-one patients under the care of three hospices in the Auckland region of New Zealand took part. Interviews were recorded and transcribed verbatim. Data were analysed using a thematic analysis technique. Results The involvement of hospice users in research is important and has the capacity to produce a diverse, but significant impact on those involved. Not only does their involvement demonstrate the potential to shape service provision, it also reveals the therapeutic benefits to individuals with a life-limiting illness of simply taking part. Of particular importance is the view that participation enables a sense of personhood to be maintained circumventing the potential of a ‘social death’. Unless they are unable to consent, palliative care patients should be regarded as autonomous individuals and given the opportunity to participate in research.

Contemporary women's understandings of female sexuality: findings from an in-depth interview study

Based upon the findings of a qualitative in-depth interview study with 23 women aged 23–72 years recruited from members of the general public and a psychosexual clinic, this paper explores participants understandings of the term “sexuality”. The findings are set within the context of historical, prevailing and often contradictory perceptions of the term. Data were analysed thematically using the conventions of template analysis within a material discursive framework. This paper questions the assumption that sexuality is an altogether powerful and naturally occurring phenomenon. The ability to isolate and give credence to a definitive meaning of the term is, both for participants and academics alike, an arduous undertaking. Rather than focusing primarily on the material body, the extent to which ideology, culture and power intersect with the former indicate its multidimensional, constructed nature. Given the whole host of meanings evoked by the term, the paper asserts that it is more fitting to talk of multiple understandings of sexuality rather than a singular authoritative one whilst also contingent on social and historical practices. The findings have implications that should be considered when evaluating previous sexological research and conducting future research where this term is used throughout as a focus of academic enquiry.