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Background: Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits. Aim: This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context. Design: We examine 33 gratitude letters written by patients and relatives and 25 semi-structured interviews conducted as part of a pilot gratitude intervention study. We use a qualitative approach, thematic analysis, within a conceptual framework of discourse analysis. Settings/participants: Data were collected from 23 patients and 13 relatives recruited through three hospital palliative care services in French-speaking Switzerland. Results: Participants articulate gratitude in five ways: (1) appreciating others; (2) love; (3) need to reciprocate; (4) appreciating the little things; (5) solace amid serious illness. While some of these representations are sources of positive emotions and outlook, wellbeing and hope, others may confirm self-perceptions of powerlessness and burden. These results support a tridimensional conceptualisation of gratitude in palliative care as source of individual benefits, valuing closest relationships and moral obligation. Conclusion: Our study suggests that gratitude is a key to a good (end of) life, whilst highlighting potential negative effects. It could help healthcare professionals to better understand what gratitude means to patients and relatives, which may facilitate awareness and fostering of gratitude in palliative care. [ABSTRACT FROM AUTHOR]

Background: Forty-five percent of the world's population lives in rural areas, yet their access to palliative care is quite limited. Identifying the care elements rural populations with palliative care needs require is critical to improving care outcomes. Aim: To identify the key care elements that optimise palliative care for people in rural communities. Design and data sources: A systematic review of articles studying the impact of novel rural model of care interventions was undertaken in May 2022. This study is reported using the PRISMA Statement and was registered with Prospero (CRD42020154273). Three databases were searched, and the data analysed according to Popay's narrative synthesis, and elements classified using the WHO Innovative Care for Chronic Conditions (ICCC) Framework. Results: Of the 9508 identified papers, 15 met the inclusion criteria, reporting on 14 studies involving 1820 rural patients. Care received spanned 12/18 of the WHO ICCC Framework elements, with wide variability in how these elements were operationalised. The five elements that signal improved outcomes were: (1) Promote continuity and coordination; (2) Prepared, informed and motivated health care teams; (3) Prepared, informed and motivated patients and families; (4) Organise and equip health care teams and (5) Promote consistent financing. Conclusions: A well-coordinated multidisciplinary team approach, led by clinicians with specialist palliative care expertise, integrated across local health care settings, using information systems and care planning, is critical to optimising rural palliative care patient outcomes. Rural patients and their families require timely input from specialist palliative care clinicians and information to address their needs. Prospero registration ID: CRD42020154273 https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=154273 [ABSTRACT FROM AUTHOR]

Background: In order to provide responsive, individualised and personalised care, there is now greater engagement with patients, families and carers in designing health services. Out-of-hours care is an essential component of community palliative care. However, little is known about how patients, families and carers have been involved in the planning and design of these services. Aim: To systematically search and review the research literature that reports on how out-of-hours palliative care services are provided in the community and to identify the extent to which the principles of co-design have been used to inform the planning and design of these services. Design: Systematic literature search and review. Data sources: A systematic search for published research papers from seven databases was conducted in MEDLINE, PsycINFO, Embase, Emcare, PubMed, CINAHL and Web of Science, from January 2010 and December 2021. Reference list searches of included papers were undertaken to source additional relevant literature. A manifest content analysis was used to analyse the data. Results: A total of 77 papers were included. The majority of out-of-hours services in the community were provided by primary care services. The review found little evidence that patients, families or carers were involved in the planning or development of out-of-hours services. Conclusion: Incorporating patients, families and carers priorities and preferences in the planning and designing of out-of-hours palliative care service is needed for service providers to deliver care that is more patient-centred. Adopting the principles of co-design may improve how out-of-hours care scan be delivered. [ABSTRACT FROM AUTHOR]

Background: The SARS-Cov-2 (COVID-19) pandemic affected the delivery of health and social care services globally. However, little is known about how palliative care social work services were impacted. Aim: The aim of this study was to capture and analyse data from palliative care social workers who provided professional support in a range of settings across 21 countries during the COVID-19 pandemic. Design: A cross-sectional survey-based design was used for this empirical study and this paper primarily focuses on the quantitative responses. Setting/participants: Participants, palliative care social workers, were drawn internationally via members of the EAPC Social Work Task Force and the World Hospice Palliative Care Social Work network. Results: We received 362 survey responses from 21 countries. Most (79%) respondents worked with adults in in-patient units or hospitals. The number of referrals during COVID-19 increased more in non-European countries, compared to European countries. The full range of social work services could no longer be delivered, existing services changed and 65.3% of participants reported higher levels of pressure during the pandemic, which was linked to higher levels of staff absence and additional duties. For many respondents (40.8%), this included facilitating online communication between patients and their families. Conclusions: Our findings indicate that restrictions to limit the spread of COVID-19 resulted in adaptations to service delivery, increased pressure on staff and moral distress, like other health and social care professions. All members of the palliative team need support and supervision to ensure effective interdisciplinary working and team cohesion. [ABSTRACT FROM AUTHOR]

Background: Palliative care, a recognised component of care by the World Health Organization is poorly developed in low- and middle-income countries. Mobile phone technology, an effective way to increase access and sustainability of healthcare systems globally, has demonstrated benefits within palliative care service delivery, but is yet to be utilised in Ethiopia. Aim: To co-design, develop and evaluate a mobile phone based remote monitoring system for use by palliative care patients in Ethiopia Design: Two-phase co-design approach comprising multiple methods that is stakeholder interviews, focus groups, user-co-creation activities and healthcare worker prioritisation discussions 2019–2020. Phase-1 interviews (n = 40), Phase-2 focus groups (n = 3) and interviews (n = 10). Setting/Participants: Hospice Ethiopia and Yekatit 12 Medical College Hospital: healthcare workers, palliative care patients, family carers & software-developers. Results: Co-design activities lead to development of the prototype ' Ayzot ' application, which was well received and reported to be easy to use. Patients, and family caregivers saw provision of self-care information and symptom management as a key function of the App and expressed very positive attitudes towards such information being included. Healthcare workers found the App offered service benefits, in terms of time and cost-savings. Conclusion: This paper provides a detailed example of the development and design of a prototype remote monitoring system using mobile phone technology for palliative care use in Ethiopia. Further development and real-world testing are required, to not only understand how it acts within usual care to deliver anticipated benefits but also to explore its effectiveness and provide cost estimates for wider implementation. [ABSTRACT FROM AUTHOR]

Background: Deaths in the community are increasing. However, community palliative care out-of-hours is variable. We lack detailed understanding of how care is provided out-of-hours and the associated outcomes. Aim: To review systematically the components, outcomes and economic evaluation of community-based ‘out-of-hours’ care for patients near the end of life and their families. Design: Mixed method systematic narrative review. Narrative synthesis, development and application of a typology to categorise out-of-hours provision. Qualitative data were synthesised thematically and integrated at the level of interpretation and reporting. Data sources: Systematic review searching; MEDLINE, EMBASE, PsycINFO, CINAHL from January 1990 to 1st August 2022. Results: About 64 publications from 54 studies were synthesised (from 9259 retrieved). Two main themes were identified: (1) importance of being known to a service and (2) high-quality coordination of care. A typology of out-of-hours service provision was constructed using three overarching dimensions (service times, focus of team delivering the care and type of care delivered) resulting in 15 categories of care. Only nine papers were randomised control trials or controlled cohorts reporting outcomes. Evidence on effectiveness was apparent for providing 24/7 specialist palliative care with both hands-on clinical care and advisory care. Only nine publications reported economic evaluation. Conclusions: The typological framework allows models of out-of-hours care to be systematically defined and compared. We highlight the models of out-of-hours care which are linked with improvement of patient outcomes. There is a need for effectiveness and cost effectiveness studies which define and categorise out-of-hours care to allow thorough evaluation of services. [ABSTRACT FROM AUTHOR]

Comments on the increase in the number of submitted papers accepted for publication in "Palliative Medicine." Description of the editorial processes of the journal; Total number of manuscripts for external peer review; Factors contributing to the increase in the acceptance rate of manuscripts for publication.

Background: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff. Aim: To synthesise the evidence regarding the ethical challenges which specialist palliative care practitioners encounter during clinical practice. Design: Systematic review with narrative synthesis (PROSPERO registration CRD42018105365). Quality was dual-assessed using the Mixed-Methods Appraisal Tool. Tabulation, textural description, concept mapping and thematic synthesis were used to develop and present the narrative. Data sources: Seven databases (MEDLINE, Philosopher's Index, EMBASE, PsycINFO, LILACS, Web of Science and CINAHL) were searched from inception to December 2019 without language limits. Eligible papers reported original research using inductive methods to describe practitioner-reported ethical challenges. Results: A total of 8074 records were screened. Thirteen studies from nine countries were included. Challenges were organised into six themes: application of ethical principles; delivering clinical care; working with families; engaging with institutional structures and values; navigating societal values and expectations; philosophy of palliative care. Challenges related to specific scenarios/contexts rather than the application of general ethical principles, and occurred at all levels (bedside, institution, society, policy). Conclusion: Palliative care practitioners encounter a broad range of contextual ethical challenges, many of which are not represented in palliative care ethics training resources, for example, navigating institutional policies, resource allocation and inter-professional conflict. Findings have implications for supporting ethical practice and training practitioners. The lack of low- and middle- income country data needs addressing. [ABSTRACT FROM AUTHOR]

Background: Access to community palliative care 'out-of-hours' – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution. Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care. Design: Scoping review Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement. Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient's and family's physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home. Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers. [ABSTRACT FROM AUTHOR]

Background: Transfers from hospital or 'hospice palliative care units' to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals. Aim: To understand the experiences of patients discharged to care homes for end-of-life care. Design: Systematic review and narrative synthesis of the UK literature concerning inpatient transfer from a hospital or hospice palliative care unit to a care home for end-of-life care. Results: The published literature is very limited: only three papers and one conference abstract were identified, all of low quality using Gough's weight of evidence assessment. No papers examined transfer from hospital: all were of transfers from hospices and were retrospective case note reviews. Many patients were reported to have been negative or ambivalent about moving and experienced feelings of anxiety or abandonment when transferred. Relatives were often either vehemently opposed or ambivalent. Although some came to accept transfer, others reported the transfer to have seriously affected their loved one's quality of life and that the process of finding a care home had been traumatic. No studies investigated patients' views prospectively, the views of staff or the processes of decision-making. Conclusion: The UK literature is very limited, despite such transfers being an increasingly common part of clinical practice and a source of concern to patients, relatives and staff alike. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views. [ABSTRACT FROM AUTHOR]

Background: Despite a fast-paced environment, the emergency clinician has a duty to meet the palliative patient's needs. Despite suggested models and interventions, this remains challenging in practice. Aim: To raise awareness of these challenges by exploring the experience of palliative care patients and their families and informal carers attending the emergency department, and of the clinicians caring for them. Design: Qualitative systematic literature review and thematic synthesis. Search terms related to the population (palliative care patients, family carers, clinicians), exposure (the emergency department) and outcome (experience). The search was international but restricted to English and used a qualitative filter. Title, abstracts and, where retrieved, full texts were reviewed independently by two reviewers against predefined inclusion criteria arbitrated by a third reviewer. Studies were appraised for quality but not excluded on that basis. Data sources: MEDLINE [1946-], Embase[1947-], CINAHL [1981-] and PsycINFO [1987-] with a bibliography search. Results: 19 papers of 16 studies were included from Australia (n = 5), the United Kingdom (n = 5), and United States (n = 9) representing 482 clinical staff involved in the emergency department (doctors, nurses, paramedics, social workers, technicians), 61 patients and 36 carers. Nine descriptive themes formed three analytic themes: 'Environment and Purpose', 'Systems of Care and Interdisciplinary Working' and 'Education and Training'. Conclusion: In the included studies, provision of emergency palliative care is a necessary purpose of the emergency department. Failure to recognise this, gain the necessary skills or change to systems better suited to its delivery perpetuates poor implementation of palliative care in this environment. [ABSTRACT FROM AUTHOR]

The Palliative Care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS) are outcome measures assessing quality of care in palliative care patients. This review aims to appraise their use in clinical care and research. Five electronic databases were searched (February 2010) for original papers describing the validation or use of POS and/or STAS. Of the 83 papers included, 43 studies were on POS, 39 on STAS and one study using both. Eight STAS studies validated the original version, four an adaptation; 20 studies applied the STAS in another culture and 19 in other languages. POS papers reported included: 14 adapted POS versions, 12 translations of the POS and 15 studies of use in different cultures. Both measures have been used in cancer, HIV/AIDS and in mixed groups. POS has also been applied in neurological, kidney, pulmonary and heart disease. Both tools were used in different areas such as the evaluation of care or interventions, description of symptom prevalence and implementation of outcome measures in clinical practice. Overall, they seem to be well accepted tools for outcome measurement in palliative care, both in clinical care and research. [ABSTRACT FROM PUBLISHER]

The challenges associated with patient-based research in palliative care are well documented. This paper focuses on the ethical challenges and discusses them in the context of a pilot study to explore the palliative-care needs of patients with moderate and severe chronic obstructive pulmonary disease. The main ethical challenge encountered related to problems surrounding the use of terminology, specifically the terms 'palliative care' and 'chronic obstructive pulmonary disease'. The approving ethics committee specified that these terms be removed from all patient materials in order to protect patients from undue distress. The impact of this ethical advice on patients' ability to give fully informed consent is discussed. This paper highlights a requirement for appropriately resourced and well-managed studies in palliative care, and identifies a need for the development of appropriate strategies in order to ensure the informed participation of patients with non-cancer diagnoses in palliative-care research. [ABSTRACT FROM AUTHOR]

This paper is a secondary observation of a larger pilot study. The Assessing Caregivers for Team Intervention via Video Encounters intervention project enabled caregiver participation in hospice interdisciplinary team meetings. This paper used the team observation scale to assess the impact of caregiver involvement on team structure, process, and outcome. Comparisons were made between traditional team meetings and the team meetings that involved caregivers by using videotapes of both. Analysis found that team meetings with participating caregivers had better team outcomes, with more patient-centered goals, increased discussion of biopsychosocial problems, and the development of interdisciplinary care plans occurring more often than in the traditional hospice team meetings. Findings from this study show benefits for inclusion of caregivers in hospice team meetings. [ABSTRACT FROM AUTHOR]

Evaluating interventions in palliative care using randomized controlled trials (RCTs) has helped advance the specialty and create an evidence base for the delivery of care. RCTs, however, are notoriously difficult to conduct in palliative care, raising a variety of practical, ethical and moral dilemmas. Mixed-methods research, which combines qualitative research and RCTs, offers a potential solution to these problems. This paper begins by examining the theoretical basis for combining the two approaches, before reviewing the specific role qualitative research could play in planning, conducting and implementing trials. The paper then goes on to explore how palliative care research currently uses the mixed-methods approach, by searching the trials included in six Cochrane Systematic Reviews (n = 146) on the incorporation of qualitative research. Only one trial undertook qualitative research. These findings reflect some of the challenges facing mixed-methods research, which include lack of experience in a research team, the problems of obtaining funding and difficulties in publishing. The paper concludes that while combining qualitative and quantitative research is not a panacea for methodological problems in palliative care research, with careful planning and integration, the approach may enhance the clinical and ethical utility of trial findings, which in turn will improve patient care. [ABSTRACT FROM AUTHOR]

Objectives: To determine the problems and issues of accessing specialist palliative care by patients, informal carers and health and social care professionals involved in their care in primary and secondary care settings. Data sources: Eleven electronic databases (medical, health-related and social science) were searched from the beginning of 1997 to October 2003. Palliative Medicine (January 1997 - October 2003) was also hand-searched. Study selection: Systematic search for studies, reports and policy papers written in English. Data extraction: Included papers were data-extracted and the quality of each included study was assessed using 10 questions on a 40-point scale. Results: The search resulted in 9921 hits. Two hundred and seven papers were directly concerned with symptoms or issues of access, referral or barriers and obstacles to receiving palliative care. Only 40 (19%) papers met the inclusion criteria. Several barriers to access and referral to palliative care were identified including lack of knowledge and education amongst health and social care professionals, and a lack of standardized referral criteria. Some groups of people failed to receive timely referrals e. g., those from minority ethnic communities, older people and patients with nonmalignant conditions as well as people that are socially excluded e. g., homeless people. Conclusions: There is a need to improve education and knowledge about specialist palliative care and hospice care amongst health and social care professionals, patients and carers. Standardized referral criteria need to be developed. Further work is also needed to assess the needs of those not currently accessing palliative care services. [ABSTRACT FROM AUTHOR]

Background: Bisphosphonates are the treatment of choice for hypercalcaemia of malignancy (HCM) but there is no consensus regarding which drug or dose should be given. We designed a systematic review to investigate the efficacy of bisphosphonates in the treatment of HCM. Methods: We identified randomized controlled trials (RCTs) by searching electronic databases, scanning of reference lists, and consultation with experts and pharmaceutical companies. Foreign papers were translated. Inclusion criteria were RCTs, confirmed malignant disease and measurement of serum calcium (ionized or corrected for albumin) postrehydration. The primary outcome was number of patients achieving normocalcaemia. Secondary outcomes were time to normocalcaemia, time to relapse and toxicity. Results: Twenty-seven papers and two abstracts, using intravenous bisphosphonates, fulfilled the inclusion criteria. Data from 26 studies were used in analyses. Due to the heterogeneity of studies, meta-analysis could not be performed. Pamidronate was more effective than placebo, mithramycin, etidronate (7.5 mg/kg) and low-dose clodronate (600 mg), but equal to higher dose clodronate (1500 mg). Clodronate and etidronate were superior to placebo; incadronate was superior to elcatonin; gallium nitrate was superior to etidronate. No difference was seen between alendronate and clodronate. Three dose finding studies showed no difference between 30-90 mg of pamidronate, but one well designed study showed increasing efficacy with increasing dose. Studies using increasing doses of ibandronate (0.6-4 mg), alendronate (2.5-15 mg), and incadronate (2.5-10 mg), showed a dose response. Duration of administration of pamidronate did not affect efficacy (six studies). Conclusion: Bisphosphonates normalize calcium in < 70% patients with minimal side effects. Aminobisphosphonates are most effective at maintaining normocalcaemia and should be given in high dose irrespective of baseline serum calcium. [ABSTRACT FROM AUTHOR]

Since the journal 'Palliative Medicine' cannot possibly do justice to all commentators by giving detailed feedback to each and every one, it has instead chosen to focus on eight particular issues, of which all or most are touched on by many authors in one way or other since they all play a significant role in important portions of the paper. Several authors point to the fact that on some topics, the illustration is quite brief and so they miss a more comprehensive treatment of these topics. Furthermore, particular topics that some would expect to see addressed in a paper like this are missing completely. The periodical did originally produce a much longer document that considers many topics in great detail. Opponents and proponents alike often make compelling and passionate arguments against or in support of euthanasia or physician-assisted suicide.

Background: Action research is beginning to be utilized within palliative care research to address questions concerned with practice and organizational change. An understanding of appropriate evaluation practices is required in order to ensure that high-quality action research is conducted.Aim: The aim of this paper is to present an account of participatory action research and illustrate the way in which evaluation approaches are integrated within this methodology.Design: Participatory action research will be described identifying its origins, principles and its relationship with evaluation frameworks. The key features of the evaluation process in regard to participatory research are outlined.Setting: Two studies are presented which illustrate the integration of evaluation within a participatory action research framework. The first approach uses a before–after summative evaluation approach in a study undertaken to develop palliative care practice within a UK nursing home context. The evaluation focused upon the impact of the intervention. The second study utilized similar methods and addressed the process of the action research using the Äldreväst Sjuhärad (ÄVS) model to evaluate participation in a peer education programme for advance care planning amongst older adults.Results: These examples of evaluation within action research illustrate how diverse methods can be used. The use of a specific participatory evaluation model ensures the process reflects the underlying participatory principle of action research.Conclusions: Evaluation processes are integral to action research approaches. The specific evaluative methods adopted will reflect the nature and focus of the evaluation being undertaken. [ABSTRACT FROM PUBLISHER]

This study aimed to evaluate health professionals’ views about palliative care provision in prisons in the counties of Cumbria and Lancashire in the North West of England. Seventeen prison healthcare staff and nine specialist palliative care staff participated in semi-structured interviews and 16 prison healthcare staff completed a questionnaire designed to measure knowledge, skills and confidence in relation to palliative care. The findings highlighted tensions between the philosophies of care and custody, and the many challenges in providing palliative care in a custodial setting. This paper presents two illustrative case study examples, and suggests ways in which some of these challenges can be overcome in practice. [ABSTRACT FROM PUBLISHER]

Since October 2007 staff across health and social care services in England and Wales have been guided by the Mental Capacity Act (2005) in the provision of care for those who may lack capacity to make some decisions for themselves. This paper reports on the findings from a study with 26 staff members working in three palliative and three neurological care centres. Semistructured interviews were used to gain an understanding of their knowledge of the Mental Capacity Act, the issue of capacity itself and the documentation processes associated with the introduction of the Act and in line with advance care planning. Within this setting advance care planning is a key part of care provision and the mental capacity of service users is a regular issue. Findings show that staff generally had a good understanding of issues around capacity but felt unclear about some of the terminology related to the Mental Capacity Act, impacting on their confidence to discuss issues with service users and complete the documentation. Many felt the Act and its associated documentation had aided record-keeping in an area staff already delivered well in practice. Advance care planning in the context of the Mental Capacity Act is not as well embedded in practice as providers would like and consideration needs to be given to how and when staff should approach these issues with service users. [ABSTRACT FROM AUTHOR]

Background: Hospice staff and volunteers frequently hear the sound of death rattle and offer explanations and reassurance to relatives and other patients. This paper describes our study into the impact of hearing the sound of death rattle on hospice staff and volunteers, part of our wider investigation into death rattle. Methods: Seven focus group meetings were held, involving a total of 41 participants from medical, nursing, chaplaincy, housekeeping and volunteer backgrounds. Meetings were audio-taped and the transcripts analysed using thematic analysis. Results: Most participants expressed negative feelings about hearing the sound of death rattle and felt that relatives were also distressed by it. Medical and nursing participants reported diverse views on why they intervene. Some acknowledged the influence of their own emotional response to the sound. Others felt that intervention was part of their professional role or that the existence of a therapeutic option made it necessary to intervene. Conclusion: Death rattle has a negative impact on staff and volunteers who work with dying patients. This effect may influence their decision to intervene when death rattle occurs. Doctors and nurses need to consider why, when and how they intervene and the consequences of that intervention. [ABSTRACT FROM AUTHOR]

In the context of an increased national policy focus on the development of palliative and end of life care services the post of a GP with a special interest in palliative medicine (GPSI) was introduced in one region of the UK to fortify its current palliative care provision. This paper presents findings from an evaluation of the first 2 years of the GPSI post. A mixed method evaluation design was adopted incorporating qualitative interviews, a satisfaction survey and an activity log. As a concept, the GPSI was welcomed as a suitable and imaginative way to provide much needed medical input. At baseline interviews stakeholders saw the role as an added resource both clinically and educationally, placing highest value on the clinical element of the role. There were concerns related to referral practices (referral was via a GP only) as well as the low profile of the new role. At the final stage of the evaluation, almost 2 years since the role began, stakeholders noted that the use of the GPSI for informal advice and support was highly valued, but also noted that more had been expected, particularly in relation to increased clinical input. The evaluation contained important lessons both for the continuation of this GPSI post and for other regions considering appointing a GPSI in this speciality. [ABSTRACT FROM AUTHOR]

Setting goals and assessing outcomes are essential elements in palliative care. This paper describes a multiprofessional project, conducted under the auspices of clinical audit, which attempted to evaluate important outcomes of care. Over a six-month period there were 123 consecutive admissions to the hospice. These patients and their carers, as well as the staff, were encouraged to set explicit goals for, and evaluate outcomes of, their care. As anticipated, we encountered many difficulties in this, but there were benefits. We were able to record goals of admission from the patient in 97 cases (79%), their main carer in 74 cases (63%) and from hospice staff in 120 cases (98%). Patient and carer goals were often more functional and specific whereas the staff goals tended to be more problem or symptom focused. The achievement of these goals was evaluated by patients, carers and staff at discharge or death (where possible) with the majority being fully or partially met. Only 15 patients and 9 carers thought that some or all of their goals had not been achieved with just 4 recording that their goals had changed. Overall, it was a worthwhile (although time-consuming) exercise and, as a result of the 'audit', clear goals and outcomes from patient, carer and staff perspectives are now routinely recorded for all admissions to the hospice and are used to focus multiprofessional patient review. Having analysed the process as well as the results of the 'audit', we would encourage others not to be daunted from undertaking similar projects. [ABSTRACT FROM AUTHOR]

In the UK, researchers' access to study populations and control over selection of participants is becoming increasingly constrained by data protection and research governance legislation. Intervening stages placed between researchers and the population they wish to study can have serious effects on recruitment and ultimately on the validity of studies. In this paper we describe our experiences of gaining access to patients for a study of palliative care in primary care. Despite considerable time and resources dedicated to recruitment, a smaller than anticipated study sample was achieved. We found that gatekeeping by ethics committees and practitioner control over sample selection were significant hurdles in accessing patients for the study. Gatekeeping responsibilities represent considerable challenges for researchers seeking to obtain a representative study sample, not just in palliative care, but for research in general in health care. [ABSTRACT FROM AUTHOR]