Sheila A. Payne

Current demographic, policy and management changes are a challenge to hospices to develop their volunteering practices. The study upon which this paper is based aimed to explore good practice in volunteer involvement and identify ways of improving care through developing volunteering. The project consisted of a narrative literature review; a survey of volunteer managers; and organisational case studies selected through purposive diversity sampling criteria. A total of 205 staff, volunteers, patients and relatives were interviewed across 11 sites in England in 2012. This article focuses on one of the findings - the place that volunteers occupy between the hospice and the community beyond its walls. External changes and pressures in society were impacting on volunteer management, but were viewed as requiring a careful balancing act to retain the 'spirit' of the hospice philosophy. Honouring the developmental history of the hospice was vital to many respondents, but viewed less positively by those who wished to modernise. Hospices tend to be somewhat secluded organisations in Britain, and external links and networks were mostly within the end-of-life care arena, with few referring to the wider volunteering and community fields. Volunteers were seen as an informal and symbolic 'link' to the local community, both in terms of their 'normalising' roles in the hospice and as providing a two-way flow of information with the external environment where knowledge of hospice activities remains poor. The diversity of the community is not fully represented among hospice volunteers. A few hospices had deliberately tried to forge stronger interfaces with their localities, but these ventures were often controversial. The evidence suggests that there is substantial scope for hospices to develop the strategic aspects of volunteering through greater community engagement and involvement and by increasing diversity and exploiting volunteers' 'boundary' position more systematically to educate,…

Background: Volunteers are integral to the history of hospices and continue to play a vital role. However, economic, policy and demographic challenges in the twenty-first century raise questions about how best to manage this essential resource. Aim: This narrative review explores the recent literature on end-of-life care volunteering and reflects upon the issues pertinent to current organisational challenges and opportunities. Design: The parameters of the review were set deliberately wide in order to capture some of the nuances of contemporary volunteer practices. Articles reporting on research or evaluation of adult end-of-life care services (excluding prison services) that use volunteers and were published in English between 2000 and 2011 were included. Data sources: Seven electronic databases, key journals and grey literature databases. Results: Sixty-eight articles were included in the analysis. The articles were drawn from an international literature, while acknowledging that volunteer roles vary considerably by organisation and/or by country and over time. The majority of articles were small in scale and diverse in methodology, but the same topics repeatedly emerged from both the qualitative and quantitative data. The themes identified were individual volunteer factors (motivation, characteristics of volunteers, stress and coping, role boundaries and value) and organisational factors (recruiting for diversity, support and training and volunteers’ place in the system). Conclusions: The tensions involved in negotiating the boundary spaces that volunteers inhabit, informality and regulation, diversity issues and the cultural specificity of community models, are suggested as topics that merit further research and could contribute to the continuing development of the volunteer workforce.

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.

Background: The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation. Aim: The aim of this study was to describe the nature of implementation strategies and to identify facilitators and/or barriers to implementing palliative care interventions in long-term care facilities. Design: Scoping review with a thematic synthesis, following the ENTREQ guidelines. Data sources: Published literature was identified from electronic databases, including MEDLINE, EMBASE, PsycINFO and CINAHL. Controlled, non-controlled and qualitative studies and evaluations of interventions to improve palliative care in long-term care facilities were included. Studies that met the inclusion criteria were sourced and data extracted on the study characteristics, the implementati...

Importance High-quality evidence on how to improve palliative care in nursing homes is lacking. Objective To investigate the effect of the Palliative Care for Older People (PACE) Steps to Success Program on resident and staff outcomes. Design, Setting, and Participants A cluster-randomized clinical trial (2015-2017) in 78 nursing homes in 7 countries comparing PACE Steps to Success Program (intervention) with usual care (control). Randomization was stratified by country and median number of beds in each country in a 1:1 ratio. Interventions The PACE Steps to Success Program is a multicomponent intervention to integrate basic nonspecialist palliative care in nursing homes. Using a train-the-trainer approach, an external trainer supports staff in nursing homes to introduce a palliative care approach over the course of 1 year following a 6-steps program. The steps are (1) advance care planning with residents and family, (2) assessment, care planning, and review of needs and problems, (3) coordination of care via monthly multidisciplinary review meetings, (4) delivery of high-quality care focusing on pain and depression, (5) care in the last days of life, and (6) care after death. Main Outcomes and Measures The primary resident outcome was comfort in the last week of life measured after death by staff using the End-of-Life in Dementia Scale Comfort Assessment While Dying (EOLD-CAD; range, 14-42). The primary staff outcome was knowledge of palliative care reported by staff using the Palliative Care Survey (PCS; range, 0-1). Results Concerning deceased residents, we collected 551 of 610 questionnaires from staff at baseline and 984 of 1178 postintervention in 37 intervention and 36 control homes. Mean (SD) age at time of death ranged between 85.22 (9.13) and 85.91 (8.57) years, and between 60.6% (160/264) and 70.6% (190/269) of residents were women across the different groups. Residents' comfort in the last week of life did not differ between intervention and control groups (baseline-adjusted mean difference, -0.55; 95% CI, -1.71 to 0.61; P = .35). Concerning staff, we collected 2680 of 3638 questionnaires at baseline and 2437 of 3510 postintervention in 37 intervention and 38 control homes. Mean (SD) age of staff ranged between 42.3 (12.1) and 44.1 (11.7) years, and between 87.2% (1092/1253) and 89% (1224/1375) of staff were women across the different groups. Staff in the intervention group had statistically significantly better knowledge of palliative care than staff in the control group, but the clinical difference was minimal (baseline-adjusted mean difference, 0.04; 95% CI, 0.02-0.05; P < .001). Data analyses began on April 20, 2018. Conclusions and Relevance Residents' comfort in the last week of life did not improve after introducing the PACE Steps to Success Program. Improvements in staff knowledge of palliative care were clinically not important. Trial Registration ISRCTN Identifier: ISRCTN14741671.

Background: While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed. Aim: To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care planning factors and receipt and timing of palliative care. Design: Cross-sectional after-death survey regarding care provided to long-term care residents in Belgium, England, Finland, Italy, the Netherlands and Poland. Generalized estimating equations were used for analyses. Setting/participants: Nurses or care assistants who are most involved in care for the resident. Results: We included 1298 residents in 300 facilities, of whom a majority received palliative care in most countries (England: 72.6%–Belgium: 77.9%), except in Poland (14.0%) and Italy (32.1%). Palliative care typically started within 2 weeks before death and was often provi...

This paper describes a postal survey of palliative care services and teams which were identified in the 1992 Directory of Hospice Services in the UK and Ireland. Its aims were to investigate how units assess the need for bereavement follow-up, and to determine the nature and extent of services provided for bereaved adults. We sent out 397 questionnaires, of which 187 were returned, a response rate of 47%. Results indicate that 156 respondents (84%) provided follow-up and a further 13 (7%) were planning bereavement services. Only 48 (25%) units undertook formal standardized risk assessment procedures to allocate appropriate services; in 41 units (85%) this was done by a nurse. Of the remaining 125 units, 58 (46%) reported basing their decisions on clinical impressions. Content analysis of the formal assessment instruments revealed 39 subcategories, which were broadly grouped into three areas: circumstantial factors at or near to the time of death, personal factors and social factors....

AbstractThis is a two-part paper: Part 1 provides the background and context of the challenges facing family carers of dying patients, Part 2 makes some recommendations for improving support and services to carers. The purpose of this European Association for Palliative Care (EAPC) White Paper is to highlight the contribution of family carers to the care of patients in the palliative phase of illness. It is written for clinicians, managers, educators and policy-makers working in, or responsible for, palliative care and hospice services in Europe. The information presented in this White Paper is the result of a scoping of the literature that focused on the situation of, and issues faced by, carers in palliative care settings internationally. It offers an integrative review of the most relevant, significant and oftcited papers from the palliative care literature published between 2004 and 2009 by recognised researchers.

Purpose This study aims to explore the prevalence of CRC survivorship issues and their impact on survivors’ quality of life (QoL). Methods This study utilised a mixed methods sequential explanatory design. Adult CRC survivors between 6- and 60-months post-diagnosis (n = 304) were purposively recruited from three hospitals and twenty-one cancer support centres in Ireland. QoL was evaluated using the EuroQol and FACT-C questionnaires and results compared to population norms. 22 survey participants took part in semi-structured interviews exploring the impact of survivorship issues on their daily lives. Results While CRC survivors reported QoL outcomes comparable to or better than normative populations, 54% were dissatisfied with their QoL. The most common survivorship issues reported included negative body image (74%), fatigue (68%), sexual dysfunction (66%) and sleep disturbance (59%). Thematic analysis of the qualitative data illustrated survivors’ attempts to live with the impact of...

Background. The involvement of patients in decision making about their healthcare plans is being emphasized. In the context of palliative sedation, it is unclear how these decisions are made and who are involved in. The aim of the study is to understand how this decision-making is taken. Method. Information from a systematic review on clinical aspects of palliative sedation prospective studies were included. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014–December 2019). Data extraction and analysis regarded: (a) When and by whom the decision-making process is initiated; (b) patient involvement; (c) family involvement and (d) healthcare involvement. Results. Data about decision making were reported in 8/10 included articles. Palliative sedation was reported in 1137 patients (only 16 of them were non-cancer). Palliative sedation was introduced by the palliative care team during the disease process, at admission, or when patients experienced refractory sympto...

Background Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. Methods and findings To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015–2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0–3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of li...

Long term care facilities (LTCFs) are increasingly a place of care at end of life in Europe. Longer residence in an LTCF prior to death has been associated with higher indicators of end of life care; however, the relationship has not been fully explored. The purpose of this analysis is to explore associations between length of stay and end of life care. The analysis used data collected in the Palliative Care for Older People in care and nursing homes in Europe (PACE) study, a cross-sectional mortality follow-back survey of LTCF residents who died within a retrospective 3-month period, conducted in Belgium, England, Finland, Italy, the Netherlands and Poland. Primary outcomes were quality of care in the last month of life, comfort in the last week of life, contact with health services in the last month of life, presence of advance directives and consensus in care. Longer lengths of stay were associated with higher scores of quality of care in the last month of life and comfort in the...

Background: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people. Methods: A multiple exploratory qualitative case study research strategy. Cases were 3 sites providing a new end-oflife service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at 2 time points, focus group interviews with staff and local stakeholders, nonparticipant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysi...

Background The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar. Methods The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognis...

Treatment escalation plans (TEPs) are vital in communicating a ceiling of care. However, many patients still deteriorate and die without a pre-established ceiling of care for attending clinicians to rely on. We aimed to increase the proportion of suitable patients that have TEPs in place in a rural district general hospital. We undertook three 'Plan-Do-Study-Act' (PDSA) cycles between 1 December 2016 and 9 June 2017. These cycles aimed to assess the problem, implement a solution and monitor its sustainability. We sampled all acute medical admissions at different time points, focusing on the acute medical unit. We identified patients requiring TEP forms using SupportiveandPalliative Care Indicators Tool. Stakeholders were surveyed during the project, and a process communication map was developed to understand the human interfaces that occur when producing a TEP. We sampled a total of 323 patients (PDSA 1, n=128; PDSA 2, n=95; PDSA 3, n=100). Following implementation of a &#39...

There is a notable inequity in access to palliative care (PC) services between cancer and Chronic Heart Failure (CHF)/Chronic Obstructive Pulmonary Disease (COPD) patients which also translates into discrepancies in the level of integration of PC. By cross-examining the levels of PC integration in published guidelines/pathways for CHF/COPD and cancer in Europe, this study examines whether these discrepancies may be attributed to the content of the guidelines. A quantitative evaluation was made between integrated PC in published guidelines for cancer and CHF/COPD in Europe. The content of integrated PC in guidelines/pathways was measured using an 11 point integrated PC criteria tool (IPC criteria). A statistical analysis was carried out to detect similarities and differences in the level of integrated PC between the two groups. The levels of integration between CHF/COPD and cancer guidelines/pathways have been shown to be statistically similar. Moreover, the quality of evidence utili...

Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers' every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project "Patient-centred palliative care pathways in advanced cancer and chronic disease" (InS...

The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care. To systematically examine the application of the Delphi technique for the development of best practice guidelines in palliative care. A methodological systematic review was undertaken using the databases PubMed, CINAHL, Web of Science, Academic Search Complete and EMBASE. Original articles (English language) were included when reporting on empirical studies that had used the Delphi technique to develop guidance for good clinical practice in palliative care. Data extraction included a quality appraisal on the rigour in conduct of the studies and the quality of reporting. A total of 30 empirical studies (1997-2015) were considered for full-text analysis. Considerable differences were identified regarding the rigour of the design and the reporting of essential process and outcome parameters. Furthermore, discrepancies regarding the use of t...

This paper reports on the experiences of a nursing-led research group, ‘The Palliative and End of Life Care Research Group’, within the School of Nursing and Midwifery at the University of Sheffield. There is a long tradition of research in palliative care in which nurses have played an important role and currently opportunities to conduct research in palliative care are expanding. Nurses face a number of ethical and methodological challenges in conducting palliative care research, many of which extend beyond individual research conduct. Drawing on practical examples in each case, this paper explores the following themes: issues involved in raising participation and recruitment to studies of palliative care; how the topics of palliative and end-of-life care are introduced and explored with participants; what ‘special’ needs participants have in palliative care research; interpersonal issues in conducting palliative care research; and providing support and supervision to researchers.

number: 1 Presentation type: Invited Lecturer Methodology of Research in Cachexia Syndrome Fearon, KCH, Edinburgh University, UK Cachexia is a syndrome and therefore does not have a specific definition. Patients are characterised by the presence of anorexia, early satiety, weight loss, weakness, anaemia and oedema. These features occur to a variable extent in different patients and may change in severity during the course of a patient’s illness. The multifactorial origin of cachexia precludes a uniform pathophysiological definition. Taken together these factors have hindered clinical studies both at a fundamental level and in terms of the introduction of effective therapy. The advent of novel therapeutic targets (e.g. ubiquitinproteasome pathway) and biological response modifiers has opened possibilities for new clinical trials in cachexia. It must be recognised that new treatments need to be tested against a background of best supportive care which will often involve a multidisciplinary combination therapeutic approach. Regulatory authorities feel it is important not only to demonstrate efficacy in terms of patients F2,2 nutritional status (e.g. lean body mass) but also functional status (e.g. performance status). Current methods to assess the latter include physician assessment (e.g. Karnofsky score), patient assessment (e.g. physical activity of quality of life questionnaire) and objective measures (e.g. grip strength, treadmill testing, physical activity level). The aim of this lecture is to discuss: +Methodology to assess common mechanisms in cachexia and how these can inform trial design +Methodology for the assessment of entry criteria and end-points in clinical studies. Abstract number: 2 Presentation type: Invited Lecturernumber: 2 Presentation type: Invited Lecturer Beyond Symptom Control: Psychosocial and existential issues in palliative care Breitbart, William, Memorial Sloan-Kettering Cancer Center, New York, USA Concepts of adequate palliative care must be expanded in their focus beyond pain and physical symptom control to include psychiatric, psychosocial, existential and spiritual aspects of palliative care. The growth of interest and appreciation of the importance of these aspects of palliative care, highlights the need for more sophisticated clinical research in these areas. Research in the epidemiology, assessment and treatment of psychiatric, psychosocial and existential issues in end of life care is needed in order for the entire field of palliative medicine to move forward. In this plenary lecture, a research agenda for the psychiatric, psychosocial and existential aspects of palliative care will be presented. In addition a review of some of the recent developments in assessment of these issues will be presented. Finally, several examples of intervention trials in psychiatric and existential issues in palliative care will be presented. Abstract number: 3 Presentation type: Invited Lecturernumber: 3 Presentation type: Invited Lecturer Agitated and confused ¡/ what do we mean? Loge, Jon Haavard, Dept. Behavioural Sciences in Medicine, University of Oslo, Norway Agitation and confusion are commonly used as rather imprecise descriptors of patients’ behaviors. However, they commonly co-occur and they denote specific behaviors associated with several different underlying conditions, some of whom are treatable. In most situations they represent behavioral emergencies. Confusion is defined as disturbed orientation in respect to time, place or person. Orientation is a complex phenomenon reflecting short-term memory, consciousness and perceptual abilities. Agitation represents excessive motor activity which is most commonly fluctuating. Observed behaviours are motor restlessness, irritability and heightened responsivity to stimuli, inappropriate verbal and/or motor activity and decreased sleep. The distinction towards other terms such as hyperactivity, restlessness and fidgetiness is unclear. Several different conditions may present with confusion and agitation. Most commonly is confusion associated with dementia, delirium (hyperactive, hypoactive and mixed types) or other medical conditions involving/effecting upon the CNS. Agitation can be associated with a primary psychiatric disorder (anxiety (panic), depression, psychosis (mania) or personality disorders), neuropsychiatric disorders (dementia and hyperactive delirium), substance abuse (intoxication or substance withdrawal) and several medical conditions (e.g. hyperthyroidism). In palliative patients the behaviours commonly co-occur as part of a delirium. The epidemiology of confused and/or agitated behaviour in palliative patients is uncertain but the behaviours are probably common. At the end of life most of the patients are confused, and 30¡/40% of delirious patients display agitation. Delirious patients commonly display both behaviours. While doctors and nurses easily recognize agitated behaviour, confusion without agitation is probably…

The End of Life Care Strategy (Department of Health, 2008) for England encourages the use of three tools — the Gold Standards Framework (GSF), Preferred Priorities for Care (PPC), Liverpool Care Pathway for the Dying Patient (LCP) — to improve the quality of end-of-life care in all care settings. While some evidence is available about the use of these …