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Information about several papers discussed during the 7th Palliative Care Congress in Glasgow, Scotland on April 29-May 1, 2008 is presented. Topics include the big lottery fund palliative care initiative, widening access to people with conditions other than cancer, specialist palliative care for HIV in the HAART era, a qualitative study of HIV and palliative medicine physicians and the use of sedative drugs at the end of life in UK hospice.

There is a lack of evidence-based research in the use of Telehealth within palliative care in the UK, particularly in Scotland. The aim of this project was to evaluate the current use of Telehealth applications within palliative care across Scotland, and how these and future applications are perceived by patients, carers and professionals. This paper reports on the qualitative findings from focus groups with patients and carers in three geographical areas in Scotland, and individual interviews with key stakeholders from across Scotland, who currently work within areas of high and low Telehealth activity. The key findings indicated that Telehealth initiatives are welcomed by patients and carers but that these should be an adjunct to clinical care rather than an alternative. The stakeholder interviews revealed several notable differences between those working within areas of high and low Telehealth activity. Principally, areas of high Telehealth activity appear to be driven by national and local policy and seem to benefit from a greater level of investment in Telehealth equipment and facilities than in the more central, and hence accessible, parts of Scotland. [ABSTRACT FROM PUBLISHER]

In economically developed countries there is a rapidly increasing number of older people living and dying in care homes. The relative isolation of nursing care homes from the development of palliative care, the poor retention and recruitment of staff, and the lack of medical cover, hinder the provision of quality end-of-life care. End-of-life care strategies internationally highlight the benefit of using tools to help improve end-of-life care in care homes. All seven private nursing care homes within one district in Scotland undertook to implement, as a package, two end-of-life care tools, namely, the Gold Standards Framework for Care Homes (GSFCH) and an adapted Liverpool Care Pathway for Care Homes (LCP). A model of high facilitation, visiting the homes every 10—14 days with significant in-house staff training, was used to implement the 18-month programme. The notes of 228 residents who had died prior to and during the project were examined, alongside a staff audit looking at the effect that the project had on practice. A nurse researcher undertook qualitative interviews of bereaved relatives, pre-/post-implementation. This paper reports the results of an in-depth evaluation of professional practices and residents outcomes. There was a highly statistically significant increase in use of Do Not Attempt Resuscitation (DNAR) documentation, advance care planning and use of the LCP. An apparent reduction in unnecessary hospital admissions and a reduction in hospital deaths from 15% deaths pre-study to 8% deaths post-study were also found. Further work is needed to assess the optimum input required for successful implementation. [ABSTRACT FROM PUBLISHER]

The research base of palliative care is growing rapidly, but despite methodological advances, some of the practical challenges of working with people at the end of life will persist. This means that analysis of routine data is arguably more important in studying palliative care than it is in other aspects of health services research. End-of-life researchers have been using the high-quality linked data from cancer registries for many years. This paper explores the value of a less well-known resource for palliative care research: linked mortality and hospital activity data. Two case studies are presented using information from Scotland (population 5.1 million) and the former Oxford region of England (population 2.5 million). The advantages and limitations of linked hospital and mortality data for research and service planning in palliative care are drawn out through analyses investigating hospital bed utilisation by people with cancer and heart failure and the influence of social deprivation on the use of hospital services in the last year of life. The use of such data deserves a higher profile. [ABSTRACT FROM AUTHOR]

Background: Palliative care professionals have had to adapt to rapidly changing COVID-19 restrictions with personal protective equipment and physical distancing measures impacting face-to-face communication with patients and relatives. Aim: To explore the narratives of palliative care doctors working during the pandemic to understand their experiences at a personal and professional level. Design: In-depth narrative interviews were carried out via video call. Interviews were transcribed verbatim and analysed using a joint paradigmatic and narrative approach to elucidate common themes and closely explore individual narratives. Setting/participants: Eight palliative care doctors who had worked on a hospice inpatient unit in the UK before and during the pandemic were recruited from two hospices in Scotland. Results: Three intersecting themes are described, the most significant being moral distress. Participants articulated a struggle to reconcile their moral convictions with the restrictions enforced, for example, wanting to provide support to patients through physical proximity but being unable to. To differing degrees, this resulted in internal conflict and emotional distress. Two further themes arose: the first concerned a loss of humanity in interaction and a striving to re-humanise communication through alternative means; the second being a change in staff morale as the pandemic progressed. Conclusions: Restrictions had a considerable impact on palliative care doctors' ability to communicate with and comfort patients which led to moral distress and contributed to decreasing morale. Future research could explore moral distress in palliative care settings internationally during the pandemic with a view to compare the factors affecting how moral distress was experienced. [ABSTRACT FROM AUTHOR]

Background: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. Aim: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. Design: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. Setting: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. Results: People who died in Scotland in 2016 (n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. Conclusion: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness. [ABSTRACT FROM AUTHOR]

Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients' symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. Design: Cross-sectional national online survey. Setting/participants: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings: 61 completed responses (England, n = 55; Scotland, n = 4; Wales, n = 1; and Northern Ireland, n = 1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. Conclusion: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care. [ABSTRACT FROM AUTHOR]

Background: Older adults in prison have complex healthcare needs, and many will need palliative care before their sentence ends. Compared with prison-based hospices, little is known about the role played by community-based hospices in providing palliative care to people in prison Aim: To describe the roles Scottish hospices have adopted to support prisons to provide palliative care, and to discuss the international relevance of these findings in addressing the knowledge gap around community hospices supporting people in prison. Design: A qualitative descriptive study using semi-structured telephone interviews. Setting/participants: Representatives from all Scottish adult hospices were invited to take part in a short telephone interview and all (N = 17) participated. Results: Four roles were identified: caring, sharing, preparing and declaring. Most hospices employed different combinations of roles. Five (30%) hospices were engaged in caring (providing direct care at the prison or the hospice). Eleven (65%) hospices were engaged in sharing (supporting the prison by sharing knowledge and expertise). Eleven (65%) hospices were engaged in preparing (making preparations to support prisons). All seventeen hospices were described as declaring (expressing a willingness to engage with prisons to provide care). Conclusions: There are differences and similarities in the way countries provide palliative care to people in prison: many are similar to Scotland in that they do not operate prison-based hospices. Variations exist in the level of support hospices provide. Ensuring that all people in prison have equitable access to palliative care will require close collaboration between prisons and hospices on a national level. [ABSTRACT FROM AUTHOR]

Background: Surveys suggest most people would prefer to die in their own home. Aim: To examine predictors of place of death over an 11-year period between 2000 and 2010 in Dumfries and Galloway, south west Scotland. Design: Retrospective cohort study. Setting/Participants: 19,697 Dumfries and Galloway residents who died in the region or elsewhere in Scotland. We explored the relation between age, gender, cause of death (cancer, respiratory, ischaemic heart disease, stroke and dementia) and place of death (acute hospital, cottage hospital, residential care and home) using regression models to show differences and trends. The main acute hospital in the region had a specialist palliative care unit. Results: Fewer people died in their own homes (23.2% vs 29.6%) in 2010 than in 2000. Between 2007 and 2010, men were more likely to die at home than women (p < 0.001), while both sexes were less likely to die at home as they became older (p < 0.001) and in successive calendar years (p < 0.003). Older people with dementia as the cause of death were particularly unlikely to die in an acute hospital and very likely to die in a residential home (p < 0.001). Between 2007 and 2010, an increasing proportion of acute hospital deaths occurred in the specialist palliative care unit (6% vs 11% of all deaths in the study). Conclusion: The proportion of people dying at home fell during our survey. Place of death was strongly associated with age, calendar year and cause of death. A mismatch remains between stated preference for place of death and where death occurs. [ABSTRACT FROM AUTHOR]

The article presents several abstracts related to palliative care which include death anxiety among medical students, interventions for haematology patients and value of attendance at palliative day care.

The article reports on intrathecal drug delivery (ITDD) for patients with difficult-to-control cancer pain. Topics discussed include interventional clinic assessment, inpatient insertion of ITDD system, and oncological treatments and ITDD. Also being discussed is IT dosing of levobupivacaine and preservative-free (PF) morphine.

Background: A prospective, longitudinal audit of pain management in patients with cancer was conducted in an unselected community population in Lanarkshire, Scotland. Methods: Using a modified Delphi technique, a recording form was developed and a dedicated project manager was appointed to oversee the development and implementation of the audit. Community staff recorded pain level and analgesic prescribing on consecutive home visits to patients with cancer-related pain. Areas of good and poor prescribing were assessed using standards previously developed for the Scottish Cancer Pain Audit. These results were fed back to prescribers in a variety of ways and used as a focus for a programme of primary care-based education. Results: Five hundred and forty-one patients have been entered in the audit between May 1999 and end October 2002. A total of 3259 visits have been recorded and 88% of general practices in Lanarkshire submitted forms during this period. Pain scores were recorded in 90% of visits. Specific gaps in prescribing practice were identified. Conclusion: The audit demonstrated that it is possible to engage primary care teams in a continuing audit of cancer pain management, which is achievable within the context of normal care. It provided a means to collect and analyse serial data on pain level and pain management and to identify areas of prescribing in need of improvement. Concerted efforts to establish the legitimacy and relevance of the project in the eyes of key stakeholders proved fundamental to encouraging longer-term behavioural change in the management of cancer pain. [ABSTRACT FROM AUTHOR]

The objective of this study was to compare the performance of the Hospital Anxiety and Depression Scale (HADS) with the 12-item General Health Questionnaire (GHQ-12) as a screening instrument for the detection of psychiatric disorders in a palliative care inpatient setting. The results from the HADS and GHQ were compared to diagnoses generated from a semistructured psychiatric interview (Revised Clinical Interview Schedule) using standard receiver operating characteristic analysis. The study was conducted at the Marie Curie Centre, Edinburgh, a 37-bedded palliative care inpatient facility. Out of a total of 282 admissions during the study period, 79 took part in the study. The remainder of patients either refused (69) or were too unwell to participate (134). The HADS was found to be an effective screening tool for identifying depression, with an area under the receiver operating characteristic curve of 0.92. A suggested cut-off of 20 would have a sensitivity of 0.77, a specificity of 0.85 and a positive predictive value (PPV) of 0.48. There was no significant difference between the two subscales in their ability to detect depressive illnesses, although there was a trend for the anxiety subscale to perform better (P < 0.15). The GHQ did not perform as well as the HADS in this type of population. In view of this, it can be concluded that the HADS is a valid screening tool for psychiatric disorders, particularly depression, in a palliative care setting. [ABSTRACT FROM AUTHOR]