Jane Seymour

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.

Identity in the fourth age: perseverance, adaptation and maintaining dignity

ABSTRACT The fourth age remains a poorly understood phenomenon and there is a lack of understanding of the perceptions of those who might be considered to be living in it. This article draws on findings from a study of dignity in later life which examined the day-to-day experiences of participants who were in need of support and care because of failing health. It discusses their accounts of the changes to their sense of self and their identity that came about as a result of their ageing and health problems and looks also at the ways in which the support and care they received helped to shape their adjustment to those changes. The accounts given by participants reveal a great deal about the physical, mental and emotional effort entailed in maintaining a sense of self and highlight the essential role played by social relationships in the maintenance of identity. These findings are analysed by reference to emerging theories of the fourth age.

‘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 (n = 58) and New Zealand (n = 80). 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.

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.

Clinical nurse specialists in palliative care. Part 1. A description of the Macmillan Nurse caseload

Macmillan Nurses play a significant role in specialist palliative care services in the UK, providing direct and indirect services to patients with complex palliative care needs and to their families. Existing literature shows a developing understanding of the role; however, little detailed data exist regarding the clinical work that they undertake. This paper provides evidence from a major evaluation study, commissioned by Macmillan Cancer Relief. It reports the methods of data collection for the study and then goes on to use data from the evaluation to describe the caseload of Macmillan Nurses. Between September 1998 and October 1999, a team of researchers worked alongside 12 Macmillan teams for a period of 8 weeks with each team. Prospective data were gathered on all new referrals to the services within the 8-week period. This included demographic details, timing of referral, the nature and purpose of contacts, and interventions, recorded from case notes and Macmillan Nurse records. Where possible, a date of death was obtained for all patients. A total of 814 new patients were referred during the study period (range 45– 114 per site). The most common reasons for referral were emotional care for the patient (57%), pain control (27%), and other physical symptoms (33%). Thirteen per cent of the patients referred to the services died within 1 week of referral while 40% died within 6 weeks; thus, a significant proportion of patient work is focused on care at the end of life. It is also noteworthy that one-third of patients were still alive, indicating that some patients are being cared for earlier in the illness trajectory. On average, each new patient referral received two or more ‘face-to-face’ visits and two follow-up phone calls within the 8-week period. It would appear that Macmillan Nurse teams have been successful in getting access to relevant patients. As with any service that provides a complex set of interventions, the Macmillan teams have to adapt and develop the services in each setting. Whilst it is clearly important for the development of a Macmillan service to be tailored to the local conditions, the evidence on diversity suggests that in some cases, stronger guidance, in partnership with both Macmillan Cancer Relief and core providers, may be justified.

Extent of palliative care need in the acute hospital setting: A survey of two acute hospitals in the UK:

Background: In common with international health policy, The End of Life Care Strategy for England has highlighted the delivery of high quality palliative care in the acute hospital setting as an area of priority. Aim: The aim of this study was to explore the extent of palliative care need in the acute hospital setting, and to explore agreement between different sources in the identification of patients with palliative care need. Design: A cross-sectional survey of palliative care need was undertaken in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to Gold Standards Framework (GSF) prognostic indicator criteria. Medical and nursing staff were asked to identify patients with palliative care needs. Patients (or consultees) completed assessments of palliative care need. Participants: Of a total in-patient population of 1359, complete datasets were collected for 514 patients/consultees. Results: 36.0% of patients were identified as having palliative care needs according to GSF criteria. Medical staff identified 15.5% of patients as having palliative care needs, and nursing staff 17.4% of patients. Patient self-report data indicated that 83.2% of patients meeting GSF criteria had palliative care needs. Conclusion: The results reveal that according to the GSF prognostic guide, over a third of hospital in-patients meet the criteria for palliative care need. Consensus between medical staff, nursing staff and the GSF was poor regarding the identification of patients with palliative care needs. This has significant implications for patient care, and draws into question the utility of the GSF in the hospital setting.

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.

After you: conversations between patients and healthcare professionals in planning for end of life care

BackgroundThis study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients’ preferences for place of care (and death) were facilitated and documented.MethodsThe study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N = 18; 10 men; 8 women; median age 75); nominated relatives (N = 11; 7 women; 4 men; median age 65) and healthcare professionals (N = 15) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study.ResultsPatients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions.ConclusionsThis study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.

Clinical nurse specialists in palliative care. Part 3. Issues for the Macmillan Nurse role.

The remit and boundaries of the Macmillan Nursing role in the UK have been called into question recently by a number of policy-driven changes. The rapid appointment of tumour site-specific nurses and the development of posts for palliative medicine, stemming originally from the Calman Hine recommendations for reorganizing cancer services, have created unparalleled challenges of adaptation to new working practices and procedures. The extent to which Macmillan Nurses are adapting to these new demands was addressed as part of a major evaluation study of UK Macmillan Nursing in 12 sites commissioned by the UK charity Macmillan Cancer Relief. This paper draws upon semi-structured interviews with Macmillan Nurses (n = 44) and their key colleagues (n = 47). We found that differences of expectation between Macmillan Nurses and their managers about the appropriate focus of their work lead to problems of role ambiguity and role conflict; that Macmillan Nurses lack resources with which to develop an educative and consultative role and yet substitute for inadequacies in skills and knowledge of other health care staff; and that problems are associated in co-working with newly appointed cancer site-specific nurses and palliative medicine colleagues. Macmillan Nursing has a crucial role to play in meeting the objectives in the NHS Cancer Plan. However, in order to ensure that their expertise is used efficiently and effectively, there is an urgent need to clarify the nature and scope of the Macmillan Nurse role, to attend to issues of team working and to improve the skills of nonspecialist staff in palliative care.

How to communicate with patients about future illness progression and end of life: a systematic review

Background Conversation and discourse analytic research has yielded important evidence about skills needed for effective, sensitive communication with patients about illness progression and end of life. Objectives To: ▸ Locate and synthesise observational evidence about how people communicate about sensitive future matters; ▸ Inform practice and policy on how to provide opportunities for talk about these matters; ▸ Identify evidence gaps. Design Systematic review of conversation/discourse analytic studies of recorded interactions in English, using a bespoke appraisal approach and aggregative synthesis. Results 19 publications met the inclusion criteria. We summarised findings in terms of eight practices: ‘fishing questions’—open questions seeking patients’ perspectives (5/19); indirect references to difficult topics (6/19); linking to what a patient has already said—or noticeably not said (7/19); hypothetical questions (12/19); framing difficult matters as universal or general (4/19); conveying sensitivity via means other than words, for example, hesitancy, touch (4/19); encouraging further talk using means other than words, for example, long silences (2/19); and steering talk from difficult/negative to more optimistic aspects (3/19). Conclusions Practices vary in how strongly they encourage patients to engage in talk about matters such as illness progression and dying. Fishing questions and indirect talk make it particularly easy to avoid engaging—this may be appropriate in some circumstances. Hypothetical questions are more effective in encouraging on-topic talk, as is linking questions to patients’ cues. Shifting towards more ‘optimistic’ aspects helps maintain hope but closes off further talk about difficulties: practitioners may want to delay doing so. There are substantial gaps in evidence.