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Background: Speech and language therapists can improve the quality of life of people receiving palliative care through the management of communication and swallowing difficulties (dysphagia). However, their role in this domain is poorly defined and little is understood about the current international professional practice in this field. Aims: To examine how speech and language therapists perceive their role in the delivery of palliative care to clients, to discover current international speech and language therapist practices and to explore the similarities and differences in speech and language therapists’ practice in palliative care internationally. This will inform professional clinical guidelines and practice in this area.Design:Anonymous, non-experimental, cross-sectional survey design.Participants:Speech and language therapists working with adult and paediatric palliative care populations in Republic of Ireland, United Kingdom, United States, Canada, Australia and New Zealand where the speech and language therapist profession is well established. Method: Purposive and snowball sampling were used to recruit participants internationally using gatekeepers. An online survey was disseminated using Survey Monkey (http://www.surveymonkey.com). Results: A total of 322 speech and language therapists responded to the survey. Speech and language therapist practices in palliative care were similar across continents. Current speech and language therapist practices along with barriers and facilitators to practice were identified. The need for a speech and language therapist professional position paper on this topic was emphasised by respondents. Conclusion: Internationally, speech and language therapists believe they have a role in palliative care. The speech and language therapist respondents highlighted that this area of practice is under-resourced, under-acknowledged and poorly developed. They highlighted the need for additional research as well as specialist training and education for speech and language therapists and other multidisciplinary team members in the area of palliative care. [ABSTRACT FROM AUTHOR]

The article reports a study which examined literature evidence which exists on management of chronic cough in patients receiving palliative care. The review of the literature revealed 11 studies on management of chronic cough. Of these, only five provided levels of evidence of 2 or above; the remainder were case reports or case series. This indicates that there is very little evidence to support guidelines for the management of chronic cough in advanced, progressive disease.

The warm welcome for modern advances in the care of the dying should not exclude the past in which there is much to be learned from the skills of our ancestors. A bilingual two-year qualitative research project into traditions associated with dying and death was undertaken. Research began in the archives available in the internationally recognized university folklore departments of Ireland and Scotland. This was augmented by 40 indepth personal interviews with Gaelic- and English-speaking residents in rural communities of both countries, recalling local customs and practices in the care of the dying. This paper reports the Irish experience; the collection of data in Scotland continues. From this study, several main themes emerged. Death was seen and accepted as a natural continuation of life, simply a step into the spirit world. In view of people's oneness with nature and the spiritual world, death was not to be feared. Traditions were unique to each area even down to the precise number of candles used at the sickbed. People understood the signs and symptoms of dying and were skilled in alleviating the distress of both relatives and the dying; and, in this, language was important in capturing and expressing the philosophy of these people. The acceptance of death as the one truism of life was facilitated by the strong faith and prayer of people for whom, in the celebration of death, humour was never far away. In their grief, the community was supported by the loose formality of the wake (torramh), funeral procession, keening (caoineadh) and music. In all these, the men and women of the community and its leaders had distinct and respected roles to play. [ABSTRACT FROM AUTHOR]

Background: Palliative medicine physicians may be at higher risk of burnout due to increased stressors and compromised resilience during the COVID-19 pandemic. Burnout prevalence and factors influencing this among UK and Irish palliative medicine physicians is unknown. Aim: To determine the prevalence of burnout and the degree of resilience among UK and Irish palliative medicine physicians during the COVID-19 pandemic, and associated factors. Design: Online survey using validated assessment scales assessed burnout and resilience: The Maslach Burnout Inventory Human Services Survey for Medical Personnel [MBI-HSS (MP)] and the Connor-Davidson Resilience Scale (CD-RISC). Additional tools assessed depressive symptoms, alcohol use, and quality of life. Setting/participants: Association of Palliative Medicine of UK and Ireland members actively practising in hospital, hospice or community settings. Results: There were 544 respondents from the 815 eligible participants (66.8%), 462 provided complete MBI-HSS (MP) data and were analysed. Of those 181/462 (39.2%) met burnout criteria, based on high emotional exhaustion or depersonalisation subscales of the MBI-HSS (MP). A reduced odds of burnout was observed among physicians who worked ⩽20 h/week (vs 31–40 h/week, adjusted odds ratio (aOR) 0.03, 95% confidence interval (CI) 0.002–0.56) and who had a greater perceived level of clinical support (aOR 0.70, 95% CI 0.62–0.80). Physicians with higher levels of depressive symptoms had higher odds of burnout (aOR 18.32, 95% CI 6.75–49.73). Resilience, mean (SD) CD-RISC score, was lower in physicians who met burnout criteria compared to those who did not (62.6 (11.1) vs 70.0 (11.3); p < 0.001). Conclusions: Over one-third of palliative medicine physicians meet burnout criteria. The provision of enhanced organisational and colleague support is paramount in both the current and future pandemics. [ABSTRACT FROM AUTHOR]

Background: Speech and language therapy in palliative care is a developing discipline of clinical practice. Research literature has highlighted that undergraduate palliative care education in speech and language therapy is inconsistent and inadequate. However, limited research has been carried out to date in relation to student speech and language therapists and palliative care. Aim: To explore the role of speech and language therapists in palliative care from the perspective of speech and language therapy students in Ireland. Design: A qualitative descriptive research study was conducted, involving focus group interviews. Setting/participants: Purposive sampling was used to recruit 12 student speech and language therapists from one university site for this study. Undergraduate second, third and fourth year students were eligible for inclusion. Results: This study revealed that undergraduate student speech and language therapists collectively agree that there is a role for speech and language therapy in palliative care. Although students acknowledged that speech and language therapists can make a positive difference to patients' lives, and academic lectures were positively received, insufficient exposure to palliative care has resulted in fear, uncertainty and a lack of confidence amongst student speech and language therapists. Conclusions: A greater emphasis on palliative care is needed in undergraduate speech and language therapy education to ensure confidence and competency development. An exploration of student speech and language therapists' experiences in a specialist palliative care unit would be advantageous to determine the appropriateness of this setting for clinical placements. [ABSTRACT FROM AUTHOR]

Background: In the pre-COVID-19 era, healthcare professionals experienced stress and burnout. The international literature confirms that COVID-19 placed significant additional burdens on healthcare workers. Aim: To describe and characterise the magnitude and variety of ways in which the COVID-19 pandemic affected the personal, social and professional lives of healthcare workers representing several multidisciplinary specialties in a fully-integrated palliative and elderly care service. Design: All staff were invited to complete an anonymised standardised questionnaire evaluating the impact of COVID-19 across a diverse range of domains. The study was conducted over a 6-week period commencing 11 September 2020. Setting: The setting incorporates two distinct but integrated services operating under a single management structure in Ireland: (i) Specialist palliative care across hospice (44 beds), community and hospitals and (ii) Elderly Care Service (long-term and respite care) delivered in a 63-bed inpatient unit. Results: 250 respondents (69.8%) completed the questionnaire. Nurses and healthcare assistants comprised the majority of respondents (60%) and other disciplines were represented proportionately. 230 participants (92%) agreed that their personal workload had changed significantly in response to COVID-19 and 182 (72.8%) agreed that their responsibilities had increased. 196 (78.4%) reported greater work-related stress. Highest-rated sources of stress included fear of contracting COVID-19 or transmitting it to friends/family, interacting with isolated frail/dying patients, changes to workplace protocols and reduced social interaction with colleagues. Conclusions: This study demonstrates the profound impact of COVID-19 on personal and professional wellbeing of staff. The greatest burden was carried by those providing prolonged, direct and intimate patient care. [ABSTRACT FROM AUTHOR]

Background: Dysphagia (swallowing impairments) is a well-recognised symptom of amyotrophic lateral sclerosis. Caring for a person with amyotrophic lateral sclerosis has been recognised as a complex and demanding task. No study to date investigated the impact of dysphagia on the lives of caregivers of people with amyotrophic lateral sclerosis. Aim: To investigate the experiences of dysphagia from the perspective of family caregivers of people diagnosed with amyotrophic lateral sclerosis. Design: Interpretative phenomenological analysis was employed. Individual interviews (n = 15) plus observations of mealtime preparation were conducted, where possible (seven or n). Setting/participants: Participants comprised family caregivers of people with amyotrophic lateral sclerosis and dysphagia living in the South West of Ireland (n = 10). Findings: Dysphagia transformed the mealtime experiences of the caregivers and changed their approaches to food. Frustration related to the inability to stabilise the weight of the person with amyotrophic lateral sclerosis and the fear of choking emerged strongly. The caregivers strived to ensure the safety of people with amyotrophic lateral sclerosis during meals by providing constant supervision. Despite the challenges precipitated by dysphagia and amyotrophic lateral sclerosis, the caregivers wished to maintain normality for as long as they perceived it to be possible. Conclusion: This study provides a unique contribution in advancing our understanding of the impact of dysphagia on the caregivers of people with amyotrophic lateral sclerosis. Professionals must explore and recognise the needs of the caregivers and provide them with appropriate support, especially how to manage choking. [ABSTRACT FROM AUTHOR]

Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. Design: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs. Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). Participants: Informal carers of decedents who had received palliative care participated in the study. Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent. [ABSTRACT FROM AUTHOR]

Background: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems. Aim: The aim is o identify and compare sources of financial support for family caregivers of people approaching the end of life, across six countries with similarly performing health care systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States). Design: A survey of financial support, welfare and benefits for end of life family caregivers was completed by 99 palliative care experts from the six countries. Grey literature searches and academic database searches were also conducted. Comparative analyses of all data sources documented financial support within and between each country. Results: Some form of financial support for family caregivers is available in all six countries; however the type, extent and reach of support vary. Financial support is administered by multiple agencies, eligibility criteria for receiving support are numerous and complex, and there is considerable inequity in the provision of support. Conclusion: Numerous barriers exist to the receipt of financial support, welfare and benefits. We identified several areas of concern, including a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Nonetheless, there is significant potential for policymakers to learn from other countries' experiences, particularly with regard to the scope and operationalisation of financial support. [ABSTRACT FROM AUTHOR]

Background: The use of quality-adjusted life years rests on the assertion that the objective of the health care system is to improve health. Aim: To elicit the views of expert stakeholders on the purpose and evaluation of supportive end of life care, and explore how different purposes of end of life care imply the need for different evaluative frameworks. Design: Semi-structured qualitative interviews, analysed through an economic lens using a constant comparative approach. Participants: Twenty professionals working in or visiting the United Kingdom or Republic of Ireland, with clinical experience and/or working as academics in health-related disciplines. Results: Four purposes of end of life care were identified from and are critiqued with the aid of the qualitative data: to improve health, to enable patients to die in their preferred place, to enable the patient to experience a good death, and to enable the patient to experience a good death, and those who are close to the patient to have an experience which is as free as possible from fear, stress and distress. Conclusion: Managing symptoms and reducing anxiety were considered to be core objectives of end of life care and fit with the wider health service objective of improving/maximising health. A single objective across the entire health system ensures consistency in the way that resource allocation is informed across that entire system. However, the purpose of care at the end of life is more complex, encompassing diverse and patient-centred objectives which we have interpreted as enabling the patient to experience a good death. [ABSTRACT FROM AUTHOR]

Background: While studies have evaluated caregiver outcomes in heart failure, the burden and support needs when caring for someone with advanced heart failure at the end of life have yet to be outlined. Aim: To identify psychosocial factors associated with caregiver burden and evaluate the support needs of caregivers in advanced heart failure. Design: A sequential mixed methods study comprising two phases: (1) postal survey with advanced heart failure patients and their caregivers and (2) interviews with current and bereaved caregivers. Correlation, chi-square, t test, regression and thematic analysis were undertaken on the data. Participants: Advanced heart failure patients (n = 112) and their caregivers (n = 84) were recruited from secondary care settings across the United Kingdom and Ireland. For phase 2 interviews, current caregivers (n = 20) were purposively recruited from phase 1, and bereaved caregivers (n = 10) were purposively recruited via voluntary organisation, social media and email. Results: More than half the caregivers (53%) had levels of distress associated with depression (Zarit Burden score >24). Caregiver depression score, preparedness for caregiving and patients' depression score predicted caregiver burden. Qualitative analysis identified an overarching theme of lack of future care planning and four subthemes: (1) seeking emotional support from someone who understands, (2) want information on prognostication, (3) lack of knowledge on how to and where to get support and (4) require knowledge on what to expect at the end of life. Conclusion: Caregivers have unmet needs and feel unprepared for the future. Implementation of future care planning by clinical teams should address patient and caregiver support needs and in turn alleviate caregiver burden. [ABSTRACT FROM AUTHOR]

Background: Recruitment challenges contribute to the paucity of palliative care research with advanced chronic heart failure patients. Aim: To describe the challenges and outline strategies of recruiting advanced chronic heart failure patients. Design: A feasibility study using a pre-post uncontrolled design. Setting: Advanced chronic heart failure patients were recruited at two nurse-led chronic heart failure disease management clinics in Ireland. Results: Of 372 patients screened, 81 were approached, 38 were recruited (46.9% conversion to consent) and 25 completed the intervention. To identify the desired population, a modified version of the European Society of Cardiology definition was used together with modified New York Heart Association inclusion criteria to address inter-study site New York Heart Association classification subjectivity. These modifications substantially increased median monthly numbers of eligible patients approached (from 8 to 20) and median monthly numbers recruited (from 4 to 9). Analysis using a mortality risk calculator demonstrated that recruited patients had a median 1-year mortality risk of 22.7 and confirmed that the modified eligibility criteria successfully identified the population of interest. A statistically significant difference in New York Heart Association classification was found in recruited patients between study sites, but no statistically significant difference was found in selected clinical parameters between these patients. Conclusion: Clinically relevant modifications to the European Society of Cardiology definition and strategies to address New York Heart Association subjectivity may help to improve advanced chronic heart failure patient recruitment in clinical settings, thereby helping to address the paucity of palliative care research this population. [ABSTRACT FROM AUTHOR]

Background: Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views of people with Parkinson’s disease and their carers about palliative care. Aim: (1) To explore the palliative care and related issues most affecting people with Parkinson’s disease and their families and (2) to examine perceptions about/understanding of palliative care. Design: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis. Setting/participants: A total of 31 people participated, both people with Parkinson’s disease (n = 19) and carers (n = 12), across three Movement Disorder Clinics in the Republic of Ireland. Results: People with Parkinson’s disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs. Conclusion: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson’s disease and their carers, and people with Parkinson’s disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson’s disease. [ABSTRACT FROM AUTHOR]

Background: Economic evaluation of palliative care has been slow to develop and the evidence base remains small. Aim: This article estimates formal and informal care costs in the last year of life for a sample of patients who received specialist palliative care in three different areas in Ireland. Design: Formal care costs are calculated for community, specialist palliative care, acute hospital and other services. Where possible, a bottom-up approach is used, multiplying service utilisation by unit cost. Informal care is valued at the replacement cost of care. Setting/participants: Data on utilisation were collected during 215 'after death' telephone interviews with a person centrally involved in the care in the last year of life of decedents who received specialist palliative care in three areas in Ireland with varying levels of specialist palliative care. Results: Mean total formal and informal costs in the last year of life do not vary significantly across the three areas. The components of formal costs, however, do vary across areas, particularly for hospital and specialist palliative care in the last 3 months of life. Conclusion: Costs in the last year of life for patients in receipt of specialist palliative care are considerable. Where inpatient hospice care is available, there are potential savings in hospital costs to offset specialist palliative care inpatient costs. Informal care accounts for a high proportion of costs during the last year of life in each area, underlining the important role of informal caregivers in palliative care. [ABSTRACT FROM AUTHOR]

The article presents abstracts from the EAPC2016 conference on palliative care which include palliative care services in the U.S. Health Care System, cancer-related fatigue, and the analgesic role of bisphosphonates.

Background: Little is known about the impact of methicillin-resistant Staphylococcus aureus in palliative care settings. To date, the clinical impact of methicillin-resistant Staphylococcus aureus in palliative care is unknown. Aim: To determine prevalence and incidence of methicillin-resistant Staphylococcus aureus colonisation in a specialist palliative care setting, to identify risk factors for methicillin-resistant Staphylococcus aureus colonisation, to determine the eradication success rate and to determine the impact of methicillin-resistant Staphylococcus aureus on survival. Design: Prospective cohort study. Setting/participants: Data were collected for consecutive admissions to an inpatient palliative care service. Patients were screened for methicillin-resistant Staphylococcus aureus colonisation on admission and 1 week post admission. Methicillin-resistant Staphylococcus aureus eradication was attempted in methicillin-resistant Staphylococcus aureus positive patients. Results: Data were collected from 609 admissions for 466 individual patients. Admission screening data were available in 95.5%. Prevalence of methicillin-resistant Staphylococcus aureus colonisation was 11.59% (54 patients). One week incidence of methicillin-resistant Staphylococcus aureus colonisation was 1.2%. Risk factors for methicillin-resistant Staphylococcus aureus colonisation were determined using Chi-Squared test and included high Waterlow score (p < 0.01), high palliative performance scale score (p < 0.01), methicillin-resistant Staphylococcus aureus status prior to admission (p < 0.01), admission from hospital (p < 0.05), presence of urinary catheter or percutaneous endoscopic gastrostomy tube (p < 0.05) and poor dietary intake (p < 0.05). Regression analysis did not identify independent risk factors. Methicillin-resistant Staphylococcus aureus was eradicated in 8.1% of admissions, while 46 patients commenced on the protocol (62.2%) died before completing it. Methicillin-resistant Staphylococcus aureus did not significantly impact survival but was significantly associated with having infection episodes and longer length of stay. Conclusion: This study identified risk factors for methicillin-resistant Staphylococcus aureus colonisation in palliative care patients. Methicillin-resistant Staphylococcus aureus was eradicated in 8.1% of patients. Hence, restricting methicillin-resistant Staphylococcus aureus screening to high-risk palliative care patients may be prudent. [ABSTRACT FROM AUTHOR]

Research suggests that shortcomings exist in the provision of palliative care to people with intellectual disabilities. This mixed-methods study aimed to describe the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. The sample was drawn from the population of one Health Service Executive area in Ireland. Staff from intellectual disability and palliative care services completed surveys and participated in focus group discussions. Three hundred and eighty-nine questionnaires were distributed and 16 focus groups were held. Fiftynine per cent of palliative care staff and 67% of intellectual disability services staff had cared for someone with intellectual disability who had died but level of experience was low. Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived 'differences' and 'difficulties' in the provision of care. They endorsed a partnership approach to care but focus group discussions revealed that a shared desire to cooperate was insufficient to guarantee effective collaboration. [ABSTRACT FROM AUTHOR]

Background: Specialist palliative care (SPC) services in Ireland are well developed by international standards. However, standardized information on all patients of SPC services is not collected so the proportion of patients seen with a noncancer diagnosis is just an estimate at 5%. Aims: To describe Irish SPC services' provision for, and attitudes to noncancer patients. Method: Postal questionnaire of clinical managers of all SPC services listed in the directory of SPC services in Ireland, September 2005. Results: Sixty-five questionnaires were returned representing a 100% response rate. Twenty four percent (n = 15) of services limited availability for noncancer patients in some way. Of those services available for noncancer patients, the type of care provided to them was the same as for cancer patients in 81% of services (n = 50). The percentage of all patients seen in 2004 who had a noncancer diagnosis was 7.21%. Only 68% (n = 42) of services had a written referral policy. The top three perceived barriers by SPC service providers were the unpredictable noncancer disease trajectory (mean intensity = 6.77), the resultant difficulties with developing referral criteria (mean intensity = 6.38) and the lack of noncancer disease specific expertise (mean intensity = 5.96). Discussion: There is a mismatch between availability of palliative care services for noncancer patients and uptake. The noncancer disease trajectory continues to be considered a barrier to care. Imaginative models of care need to be developed that are not prognosis based. [ABSTRACT FROM AUTHOR]

An interview study of 55 lay carers of people who died from cancer in the Southern Board of Northern Ireland was undertaken using a combination of closed-format and open-ended questions. The aim of the study was to evaluate palliative care services delivered in the last six months of their lives to cancer patients who died either at home or in hospital. Two-thirds of the deaths (36) occurred in the domestic home, 45 of the deceased were admitted as hospital inpatients, and the great majority were in receipt of community nursing (53) and general practitioner (54) services. Open-ended questions were used to allow respondents to give their views about services in some detail and their views about good and bad aspects of services were sought. While they were generally satisfied with services specific areas of difficulty were identified in each aspect of care addressed by the study. The most favourable assessments were made of community nursing with the greatest number of negative comments being made about inpatient hospital care. Differing interests between some of those who were dying and their lay carers were found in two areas: the receipt of help from nonfamily members and the information that the deceased received about their terminal status. [ABSTRACT FROM AUTHOR]