Specialist Palliative Care Services Research Articles

Utilisation of Hospital-Based Specialist Palliative Care in Patients With Gynaecological Cancer: Temporal Trends, Predictors and Association With High-Intensity End-of-Life Care

ABSTRACT Although chemotherapy and short-course radiotherapy play important roles in the palliative management of gynecological cancers, these may be associated with significant discomfort and minimal symptom control in advanced disease. Terminally ill patients approaching death may have complex palliative care needs that cannot be resolved in general care practices and require multidisciplinary specialist palliative care services (SPC). Timely access to SPCs is associated with improved quality of life and reduced high-intensity care during the end-of-life phase; however, the role of palliative care on high-intensity interventions at the end of life in patients with gynecological cancers has not been examined in large-scale studies. This nationwide registry-based study aimed to examine the temporal trends, predictors of use, and relationship with high-intensity treatments in hospital-based SPC utilization among patients with gynecological malignancies. All adults in Denmark who died of gynecological cancer between 2010 and 2016 were included. Demographic, financial, and oncological data were obtained for each patient. Utilization of SPC included care provided during hospital admissions, in outpatient clinics, or in the patients' own home. High-intensity end of life care included invasive treatments (chemotherapy, surgery, and radiation), use of services such as emergency department visits, intensive care unit admissions, or more than 1 hospital admission within 30 days, as well as no hospice admissions in the prior year or a patient death in the hospital. Binary regression was used to estimate the chance of receiving hospital-based SPC and the adjusted relative risk of high-intensity end of life care by potential predictors including cancer type, age at death, comorbidity score, region of residence, marital status, income level, migrant status, and FIGO cancer stage. A total of 4502 patients with cervical cancer (n = 708), ovarian cancer (n = 2595), and endometrial cancer (n = 1199) were identified, of whom 179 (40.0%) accessed SPC. The proportion of patients dying of gynecological cancer and receiving SPC increased from 24.2% in 2010 to 50.7% in 2016. Each potential predictor studied was associated with receiving SPC at the end of life, with the strongest associations after adjustment for year of death between 2014 and 2016, younger age, 3 or more comorbidities, residence in Danish regions other than the Capital region, and being an immigrant or descendant. Patients aged 60 to 69 had a 24% decreased chance of receiving SPC compared with those aged 18 to 59 (adjusted relative risk [aRR], 0.76; 95% confidence interval [CI], 0.69–0.83), and as age increased, the proportion of those that received SPC decreased further. Those with 3 or more comorbidities had a 23% higher chance of receiving SPC (aRR 1.23; 95% CI, 1.13–1.34). Compared with nonimmigrants, immigrants and descendants were 29% more likely to receive SPC (aRR, 1.29; 95% CI, 1.14–1.96). Hospital-based SPC, particularly when accessed >30 days before death, was associated with lower utilization of all high-intensity end of life care including a 25% lower risk of dying during a hospital admission (aRR, 0.75; 95% CI, 0.68–0.84). The results of this study demonstrate that the proportion of patients dying of gynecological cancers and receiving hospital-based SPC increased significantly between 2010 and 2016, and these patients received fewer high-intensity end of life interventions and were less likely to die during a hospital admission.

Inequity in end-of-life care for patients with chronic liver disease in England.

The World Health Assembly recommends integration of palliative care into treatment of patients with any life-limiting condition, yet patients with non-malignant disease are less likely to receive specialist palliative care (SPC). This study compares SPC offered to patients with hepatocellular carcinoma (HCC) versus patients with chronic liver disease without HCC (CLD without HCC). Patients who died from CLD or HCC over 5 years (2013-2017) in England were identified using a dataset linking national data on all hospital admissions (Hospital Episode Statistics - HES) with national mortality data from the Office for National Statistics (HES - ONS). The primary outcome was the proportion of patients who received inpatient SPC in their last year of life (LYOL). Secondary outcomes were (1) early inpatient SPC input and (2) the proportion dying in a hospice. The outcomes were compared between patients with HCC and CLD without HCC. 29 669 patients were identified, 8143 of whom had HCC. Patients with HCC were significantly more likely to receive inpatient SPC input-adjusted OR 3.74 (95% CI 3.52-3.97) and early inpatient SPC input-adjusted OR 7.26 (95% CI 6.38-8.25) and die in a hospice OR 8.23 (95% CI 7.33-9.24) than patients with CLD without HCC. These data highlight the stark inequity in access to SPC services between patients with HCC and patients with CLD without HCC in England. Addressing these inequities will improve end-of-life care for patients with CLD.

Accessibility to specialist palliative care services in Germany: a geographical network analysis.

The need for palliative care will increase over the next years because of the rise in deaths from chronic illness and demographic changes. The provision of specialist palliative care (SPC) in Germany (palliative care units (PCU), specialist palliative home care(SPHC) teams and palliative care advisory(PCA) teams) has been expanded in recent years. Despite the increasing availability, there is still insufficient coverage with long travel times. The aim was to describe the spatial distribution of SPC services in Germany, to calculate the potential accessibility of facilities and to assess potential spatial under-provision. Retrospective cross-sectional study with regional analysis of SPC services in Germany. Addresses of SPC services registered online were geocoded, accessibility and network analyses were conducted, and proportion of the population living up to 60minutes driving time were calculated. A total of 673 facilities were included. Their distribution is heterogeneous with every fourth of the 401 districts (110/401; 27.4%) lacking a SPC service. In half of the area of Germany the existing PCU and SPHC teams are within reach of 30minutes, with nearly 90% of the population living there. Hospitals providing PCA teams can be reached within 30minutes in 17% of the total area with provision for 43% of the population. A high coverage of SPHC teams and PCU indicates a good spatial distribution in Germany but no complete adequate provision of SPC services, especially for PCA teams. There is a persistent need for further implementation of hospital PCA teams.

Specialist Palliative Care Referral Practices Among Oncologists, Cardiologists, Respirologists: A Comparison of National Survey Studies.

Although patients with nonmalignant diseases have palliative care needs similar to those of cancer patients, they are less likely to receive specialist palliative care (SPC). Referral practices of oncologists, cardiologists, and respirologists could provide insight into reasons for this difference. We compared referral practices to SPC among cardiologists, respirologists, and oncologists, discerned from surveys (the Canadian Palliative Cardiology/Respirology/Oncology Surveys). Descriptive comparison of survey studies; multivariable linear regression analysis of association between specialty and referral frequency. Surveys for each specialty were disseminated to physicians across Canada in 2010 (oncologists) and 2018 (cardiologists, respirologists). The combined response rate of the surveys was 60.9% (1568/2574): 603 oncologists,534 cardiologists, and431 respirologists. Perceived availability of SPC services was higher for cancer than for noncancer patients. Oncologists were more likely to make a referral to SPC for a symptomatic patient with a prognosis of <one year. Cardiologists and respirologists were more likely to make a referral to services at a prognosis of <one month; and to refer earlier if palliative care was renamed supportive care.Cardiologists and respirologists had a lower frequency of referrals than oncologists, adjusting for demographic and professional characteristics (P < 0.0001 in both groups). For cardiologists and respirologists in 2018, perceived availability of SPC services was poorer, timing of referral later, and frequency of referral lower than among oncologists in 2010. Further research is needed to identify reasons for differences in referral practices and to develop interventions to overcome them.

Optimal symptom control in last days of terminally ill patients

Death is a biological imperative and inevitable. Adequate control of symptoms of a terminally ill patient is a challenging task for most end-of-life care professionals. The sole aim to provide comfort till the end of life with a holistic approach is necessary. In keeping with Liverpool Care Pathway as a guide, care of the terminally ill in their last days should be individualized from a more humanistic perspective. It should not be a ‘Tick Box Exercise’ and never a ‘One Size Fits All’ type. Once a ‘diagnosis of dying’ is made, spending on unnecessary medical interventions should be curtailed and natural death process should be allowed to continue. If available, it is always desirable to seek the opinion of specialist palliative care service team in the management of terminally ill patients. Shared decision making and open communications with all concerned are of paramount importance in end-of-life care. This mini review attempts to identify common physical symptoms and an appropriate intervention.

Specialist Palliative Care and Dementia: Staff Challenges and Learning Needs.

Objective: This study explored the perspectives of specialist palliative care (SPC) teams in Ireland, in relation to personal learning needs and education regarding dementia care. Methods: This mixed-methods study involved a survey and focus group. SPC staff were recruited through a professional palliative care society and via hospices in 4 regions. Survey items included challenges in clinical care, personal learning needs, and preferred modes of educational delivery. Quantitative data analysis was descriptive; open-answer survey questions and the focus group transcript underwent thematic analysis. Results: In total, 76 staff completed surveys and rated the following as most challenging: timely access to community agency and specialist support; and managing the needs of people with dementia (PwD). Respondents volunteered additional challenges around the timing/duration of SPC involvement, prognostication, and inadequate knowledge of local services. Staff ranked learning needs as highest in: nonpharmacological management of noncognitive and cognitive symptoms; differentiation of dementia subtypes; and pharmacological management of cognitive symptoms. The focus group (n = 4) gave deeper perspectives on these topics. Overall, 79.2% of staff preferred formal presentations by dementia-care specialists and 76.6% preferred e-learning. Conclusion: Several dementia-care challenges and learning needs are identified by SPC staff, as above. These can inform the design and delivery of tailored education programs for SPC staff. There is also a need for closer working between dementia services and SPC services to provide integrated, holistic care for PwD. One aspect of achieving this is greater awareness of local dementia-care services among SPC staff, and vice versa.

Systematic Review of Models of Effective Community Specialist Palliative Care Services for Evidence of Improved Patient-Related Outcomes, Equity, Integration, and Health Service Utilization.

Background: The benefits of palliative care programs are well documented. However, the effectiveness of specialist palliative care services is not well established. The previous lack of consensus on criteria for defining and characterizing models of care has restrained direct comparison between these models and limited the evidence base to inform policy makers. A rapid review for studies published up to 2012 was unable to find an effective model. Aim: To identify effective models of community specialist palliative care services. Design: A mixed-method synthesis design reported according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guidelines. Prospero: CRD42020151840. Data sources: Medline, PubMed, EMBASE, CINAHL and the Cochrane Database of Systematic Reviews were searched in September 2019 for primary research and review articles from 2012 to 2019. Supplementary search was conducted on Google in 2020 for policy documents to identify additional relevant studies. Results: The search yielded 2255 articles; 36 articles satisfied the eligibility criteria and 6 additional articles were identified from other sources. Eight systematic reviews and 34 primary studies were identified: observational studies (n = 24), randomized controlled trials (n = 5), and qualitative studies (n = 5). Community specialist palliative care was found to improve symptom burden/quality of life and to reduce secondary service utilization across cancer and noncancer diagnoses. Much of this evidence relates to face-to-face care in home-based settings with both round-the-clock and episodic care. There were few studies addressing pediatric populations or minority groups. Findings from qualitative studies revealed that care coordination, provision of practical help, after-hours support, and medical crisis management were some of the factors contributing to patients' and caregivers' positive experience. Conclusion: Strong evidence exists for community specialist palliative care to improve quality of life and reducing secondary service utilization. Future research should focus on equity outcomes and the interface between generalist and specialist care.

Palliation, end of life care and ventilation withdrawal in neuromuscular disorders.

The role of palliative care in the support of patients with neuromuscular disorders (NMDs) is generally recognised in spite of the scarcity of condition-specific evidence in the literature. We have focussed specifically on palliative and end-of-life care for patients whose neuromuscular disease has an impact on their respiratory function. Reviewing the literature, we have examined where existing palliative care knowledge can be applied to the specific challenges faced by patients with NMDs, identifying where lessons learnt during the management of one condition may need to be judiciously applied to others. We highlight lessons for clinical practice centring on six themes: management of complex symptoms; crisis support; relief of caregiver strain; coordination of care; advance care planning; and end of life care. The principles of palliative care are well suited to addressing the complex needs of patients with NMDs and should be considered early in the course of illness rather than limited to care at the end of life. Embedding relationships with specialist palliative care services as part of the wider neuromuscular multidisciplinary team can facilitate staff education and ensure timely referral when more complex palliative care problems arise.

Heart failure symptom burden in outpatient cardiology: observational cohort study

ObjectivesTo assess the self-reported symptom burden in patients with a diagnosis of heart failure attending an outpatient cardiology clinic through the utilisation of validated patient-reported outcome measures.MethodsEligible patients were invited...

Rapid Access Multidisciplinary Palliative Assessment to Improve Cancer Patient Experience

Patients with cancer-induced bone pain often wait weeks to receive palliative radiotherapy treatment and to have an assessment by specialist palliative care services and other allied health professionals (physiotherapy, occupational therapy, dietetics). While waiting, they continue to have psychological distress and potentially debilitating physical problems. The availability of high-speed internet allows the system to monitor the parameters at regular intervals. Furthermore, the cloud platform allows data storage so that previous measurements could be retrieved in the near future. Most patients do not receive adequate care during critical conditions such as different health issues, which is why many suffer during these times. The data of sensors from patient's are communicated through Internet connectivity IOT (Internet of Thing). Patient movement actions such as walking, temperature high, this information will be saved in the database and processed before being returned.

Assessing the Need for Pediatric Palliative Care in the Six Arab Gulf Cooperation Council Countries.

Palliative care is an essential element of universal health coverage. However, palliative care services, particularly pediatric palliative care (PPC) services, are still inadequately developed in many countries, not least members of the Gulf Cooperation Council (GCC) (Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, and the United Arab Emirates). Advocating for palliative care services requires data-driven estimates of the number of patients needing these services. To estimate the number of children living with life-threatening illnesses in the GCC countries requiring specialist and/or generalist palliative care service provision. Descriptive analysis of published cross-sectional epidemiological data. Subjects were from general and age-specific populations from individual GCC countries. The quantitative data on child population and mortality were collected from 2019 primary and secondary data sources. The need for PPC was estimated using mortality, incidence, and prevalence data from the Institute for Health Metrics and the Global Cancer Observatory. Our conservative analysis revealed that just under 22,000 children needed PPC in GCC countries in 2019, a minimum of 17.5 for every 10,000 children. There is a significant need for PPC services, suggesting that the medical needs of the pediatric population are currently not being fully met. Nationwide PPC services are essential to improve the quality of life of thousands of children in GCC countries by changing policies, professional education, and providing funding to palliative programs. To our best knowledge, this is the first study to highlight the clear and urgent need for the development of PPC services in the GCC countries.

1230 PALLIATIVE CARE MOVEMENT DISORDERS MULTIDISCIPLINARY MEETING

Abstract Introduction It is well recognised that patients with Parkinson’s disease (PD) have significant symptom burden in advanced stages of their disease. Integration of movement disorder and palliative care services has been limited by concerns about resource and sustainability. We present our experience of establishing a movement disorders palliative care multidisciplinary meeting. Method In 2019 we established a multidisciplinary virtual bimonthly meeting between movement disorders and palliative care specialists. Referrals were accepted from movement disorder specialists, community Parkinson’s practitioners and palliative care specialists. Referring clinicians all actively applied primary palliative care approaches within their existing services. Aims of the meeting were to facilitate holistic management of complex needs, support advance care planning (ACP) and consider referral to specialist palliative care services. Result 37 patients in total were discussed over a 2-year period (although the service was limited for a time due to COVID pressures). On average 3 new patients were discussed per meeting. Reasons for referral included motor and non-motor symptoms, support with ACP, medication advice, caregiver concerns and emotional distress. Meeting outcomes included medication adjustments, expediting reviews, hospice support, carer support, and referral to other services. Since the meetings started 23 (62%) patients have died. Of these, 30% died in hospital compared with the national average of 43.4%. The average between discussion at the meeting and death was 139 days. The meeting has generated education opportunities, triggered joint assessments and a professionals’ framework for the palliative management of patients with a movement disorder. Conclusions We present the experience of an MDT embedded within an early integrated palliative care service for movement disorders. The MDT has strengthened partnership working and findings suggest that alongside active primary palliative care, specialist palliative care for PD can be sustainable and resource efficient in a UK setting.

The ICaRAS randomised controlled trial: Intravenous iron to treat anaemia in people with advanced cancer – feasibility of recruitment, intervention and delivery

Background: Anaemia is highly prevalent in people with advanced, palliative cancer yet sufficiently effective and safe treatments are lacking. Oral iron is poorly tolerated, and blood transfusion offers only transient benefits. Intravenous iron has shown promise as an effective treatment for anaemia but its use for people with advanced, palliative cancer lacks evidence. Aims: To assess feasibility of the trial design according to screening, recruitment, and attrition rates. To evaluate the efficacy of intravenous iron to treat anaemia in people with solid tumours, receiving palliative care. Design: A multicentre, randomised, double blind, placebo-controlled trial of intravenous iron (ferric derisomaltose, Monofer®). Outcomes included trial feasibility, change in blood indices, and change in quality of life via three validated questionnaires (EQ5D5L, QLQC30, and the FACIT-F) over 8 weeks. (ISRCTN; 13370767). Setting/Participants: People with anaemia and advanced solid tumours who were fatigued with a performance status ⩽2 receiving support from a specialist palliative care service. Results: 34 participants were randomised over 16 months (17 iron, 17 placebo). Among those eligible 47% of people agreed to participate and total study attrition was 26%. Blinding was successful in all participants. There were no serious adverse reactions. Results indicated that intravenous iron may be efficacious at improving participant haemoglobin, iron stores and select fatigue specific quality of life measures compared to placebo. Conclusion: The trial was feasible according to recruitment and attrition rates. Intravenous iron increased haemoglobin and may improve fatigue specific quality of life measures compared to placebo. A definitive trial is required for confirmation.

Palliative Care in Patients With Hematological Malignancies. We Have a Long Way to Go….

Background: Patients with hematological malignancies have significant and diverse palliative care needs but are not usually referred to specialist palliative care services in a timely manner, if at all. Objective: To identify the characteristics of patients with hematological malignancies referred to the palliative care service in a tertiary hospital in Mexico City. Patients: Retrospective study including consecutive patients with hematological malignancies referred to palliative care services at Mexico's National Cancer Institute. Results: Between 2011 and 2019, 5,017 patients with hematological malignancies were evaluated for first time at Mexico's National Cancer Institute. Of these, 9.1% (n = 457) were referred to palliative care. Most were male (53.4%), with a median age of 58years. The most frequent diagnosis was non-Hodgkin lymphoma (54.9%). The primary indication for referral to palliative care was for cases wherein chemotherapy was no longer an option (disease refractory to treatment, 42.8%). The median time of referral to the palliative care service occurred 11.2months after the first evaluation at the National Cancer Institute and death occurred on median 1.1months after the first palliative care evaluation. Conclusion: Patients with hematological neoplasms are infrequently referred to Palliative Care at the Institute (9.1%). We found no clear referral criteria for Palliative Care referral and note that hematologists' optimism regarding a cure can delay referrals. Clearly, we have a long way to go in improving the number of patients referred, and we still saw frequent referrals near the end of life, but the high rate of outpatient referrals is encouraging.

Addressing the end-of-life actions in the National Safety and Quality Health Service Standards (2nd edn): a national survey.

Objectives To describe current and planned processes and outcome measures to address implementation of the six end-of-life actions in the National Safety and Quality Health Service (NSQHS) Standards (2nd edn) and explore associated barriers and enablers. Methods This study used an exploratory mixed methods national survey of acute healthcare facilities between September 2018 and March 2019. This study involved public and private facilities (N = 765) that provided end-of-life care, which are required to be accredited to the NSQHS Standards. Participants include those responsible for reporting implementation of end-of-life care actions at a facility providing end-of-life care. Participants were asked what processes and outcome measures were implemented or being planned to address the end-of-life care actions, and the associated barriers and enablers. Results Fifty respondents (6.5% response rate) from across Australia contributed data, reporting greater confidence in addressing Actions 5.16: Clinicians have access to Specialist Palliative Care Services; 5.17: Advance care plans can be received from patients and stored in medical records; and 5.18: Supervision and support is available for workforce providing end-of-life care. Barriers associated with the actions that were the most challenging to address included: competing clinical priorities, and insufficient resources to provide best practice end-of-life care; and the burdensome nature of conducting audits. Enablers included: (1) local, jurisdictional, and national strategic plans and policies; (2) support from Specialist Palliative Care Services; (3) access to resources and data; (4) standardised approaches to implementation and measuring outcomes; and (5) clinician, consumer and community engagement and education on end-of-life care. Conclusion Enablers and barriers in implementing the six end-of-life care actions were identified. Respondents reported that high-level support and direction, system-wide approaches, practical clinical support, and widespread community and clinician engagement would enable their facility to better address the end-of-life actions.

Expectations and barriers to the utilization of specialist palliative care services among persons living with cancer in Ghana: an exploratory qualitative study.

The need for palliative care among patients living with cancer is increasing globally. This need is far greater in resource-constrained settings like Ghana where there is a high unmet need for palliative care services. Consequently, there are lapses in the current palliative care regime, thus, resulting in suboptimal utilization. The study aims to explore patients living with cancer's expectations of palliative care services and examine the barriers that impede palliative care utilization. Descriptive exploratory qualitative design. A total of 15 patients living with cancer and receiving treatment in a tertiary health facility were purposively sampled to participate in this study. Semi-structured interviews were conducted. The data were transcribed and inductively analysed following Collaizi's qualitative analysis framework. From the analysis, the findings were grouped under two main categories: perceived expectations and barriers to utilizing palliative care. The participants expected to receive meaningful communication about their condition and prognosis; they also expected to be actively involved in palliative care decision-making. Regarding the barriers, the following themes emerged: financial constraints, unfavourable health appointment schedules, problems with the distance to the health facility, poor referral and follow-up from oncology specialists and being unaware of the availability of palliative care services. In conclusion, there is a need to actively involve patients and their families in all decision-making along the continuum of palliative care service delivery. The study underscores the need for Ghana to implement an integration of palliative care services in primary healthcare facilities to avert the challenges that distance to tertiary healthcare facilities poses to palliative care utilization. Service providers must implement awareness programmes to enable patients to better comprehend palliative care services.

Experiences and Challenges of a New Palliative Care Service in the United Arab Emirates

Introduction Palliative care as a medical subspecialty in the United Arab Emirates (UAE) is very much in its formative stage of development. There are a small number of healthcare facilities that provide a specialist palliative care service, the most recent of which is the Palliative and Supportive Care Service at Burjeel Medical City (BMC), a private hospital in Abu Dhabi. Aim This retrospective review of all the referrals to our palliative and supportive care service within the first 9-months of operation is a direct reflection of the challenges we currently face in the day-to-day delivery of palliative care in the UAE. Result Of a total of 360 referrals received during the study period, under 50% were for local, Emirati patients with international expatriates making up the rest. Most of the referrals received were for symptom control (including pain) and end-of-life care (EoLC), with 85% of the patients having a diagnosis of cancer. One third of the referrals received were for EoLC, with 90% of the patients who received EoLC on a hospital ward having a valid do not attempt resuscitation (DNAR) status in place. For the patients who received EoLC, all but one patient received EoLC in the hospital setting. Conclusion Our experiences are consistent with the challenges that other colleagues in the Middle East and North Africa (MENA) region face in providing palliative care. The majority of referrals to the palliative and supportive care service were for patients with a diagnosis of cancer with only 15% reflecting a non-cancer diagnosis. Of the 150 decedents cared for during this study period, more than 75% had a valid DNAR status in effect suggesting a growing awareness and acceptance of a less medicalized EoLC period.

Community specialist palliative care services in New Zealand: a survey of Aotearoa hospices.

Community specialist palliative care (SPC) in Aotearoa New Zealand is provided by independent hospices. Substantial increase in demand for palliative care is projected in the next 20 years. We aimed to describe the current landscape of SPC services across Aotearoa whilst incorporating an equity lens. A descriptive cross-sectional survey was undertaken to describe aspects of hospice service and populations served. Survey links were emailed to clinical, or service leads of hospices identified via Hospice New Zealand Website. All eligible hospices (n=32) completed the online survey. All hospices provided care at home, with 94% (n=30) also providing care for patients in aged residential care facilities. All 32 hospices provided symptom management, family and carer support and bereavement care. Six hospices (19%) did not provide afterhours cover. Fifteen (47%) hospices did not have Māori cultural position and median full time equivalent across all hospices for such position was one day per week. Only nine (28%) hospices provided palliative medicine specialist training. Areas of inconsistency were highlighted including afterhours access and cultural support for Māori. The capacity of the present system to address current and future shortages of palliative medicine specialist is questioned.

Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey

Background: Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. Aim: To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. Design: Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. Setting/participants: Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. Results: Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. Conclusion: The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic.

CELPI: trial protocol for a randomised controlled trial of a Carer End of Life Planning Intervention in people dying with dementia

BackgroundDementia is a leading cause of death in developed nations. Despite an often distressing and symptom laden end of life, there are systematic barriers to accessing palliative care in older people dying of dementia. Evidence exists that 70% of people living with severe dementia attend an emergency department (ED) in their last year of life. The aim of this trial is to test whether a Carer End of Life Planning Intervention (CELPI), co-designed by consumers, clinicians and content specialists, improves access to end of life care for older people with severe dementia, using an ED visit as a catalyst for recognising unmet needs and specialist palliative care referral where indicated.MethodsA randomised controlled trial (RCT) enrolling at six EDs across three states in Australia will be conducted, enrolling four hundred and forty dyads comprising a person with severe dementia aged ≥ 65 years, and their primary carer.Participants will be randomly allocated to CELPI or the control group. CELPI incorporates a structured carer needs assessment and referral to specialist palliative care services where indicated by patient symptom burden and needs assessment. The primary outcome measure is death of the person with dementia in the carer-nominated preferred location. Secondary outcomes include carer reported quality of life of the person dying of dementia, hospital bed day occupancy in the last 12 months of life, and carer stress. An economic evaluation from the perspective of a health funder will be conducted.DiscussionCELPI seeks to support carers and provide optimal end of life care for the person dying of dementia. This trial will provide high level evidence as to the clinical and cost effectiveness of this intervention.Trial registrationACTRN12622000611729 registered 22/04/2022.