Abstract number: G-01 Abstract type: Poster
Palliative Care and Homelessness – Developing Communities of Prac- tice to Address Inequity in Palliative Care Access
Shulman C.1, Hudson B.2, Armstrong M.3, Stone P.3
1University College London and Pathway, Marie Curie Palliative Care Research Department, London, United Kingdom, 2University College London, Pathway and Marie Curie, Marie Curie Palliative Care Research Department, London, United Kingdom, 3University College London, Marie Curie Palliative Care Research Department, London, United Kingdom Background: People in UK homeless hostels experience extremely high rates of multi-morbidity, frailty and age-related conditions at a young age but seldom receive palliative care. The burden of support often falls to hostel staff. Before COVID-19 we evaluated a model embedding pallia- tive specialists into hostels to provide support to staff and residents and facilitate a multidisciplinary approach to care. Subsequent to the pan- demic we have adapted our model to develop online communities of practice to facilitate interdisciplinary learning and working.
Aims: Improve care and support received by people experiencing home- lessness who may benefit from a palliative approach by developing com- munities of practice to connect and empower those that support them.
Methods: A range of homelessness, health and social care professionals within different locations, attended a series of seven online sessions.
Presentations from experts were shared and discussed with a focus on how practice in local areas could be adapted to provide a person-cen- tered approach to support those with deteriorating health. Participants were also encouraged to use the sessions as a vehicle for developing a multi-professional response to challenges encountered in real time.
Data were collected via surveys and focus groups throughout, and three months after, completion of sessions.
Results: We will explore usefulness of component parts of training regarding; understanding and working effectively in a person centered, trauma-informed way and increasing knowledge of a palliative approach.
We will also explore feasibility of building communities of practice for connecting professionals supporting people experiencing homelessness for ongoing support and collaboration.
Conclusion / discussion: To address the inequity that exists in palliative care access for people experiencing homelessness, a joined up, support- ive, multi-professional response is essential.
Funded by The Oak Foundation
Abstract number: G-04 Abstract type: Poster
Being Known: How People from Minority Ethnic Communities with Ter- minal Illnesses Navigate the Healthcare System as ‘Whole’ Individuals with Potentially Diverse Needs
Patterson A.1, Pollock K.2, Islam Z.1, Hanjari M.1, Faull C.1
1Leicestershire & Rutland Organisation for the Relief of Suffering (LOROS) Hospice, Education and Research, Leicester, United Kingdom,
2University of Nottingham, School of Health Sciences, Nottingham, United Kingdom
Background: The Thinking Ahead study explores how terminally ill patients from Black Asian and Minority Ethnic (BAME) backgrounds and their family care givers (FCGs) think ahead about deterioration and dying and engage with healthcare professionals (HCPs) to optimise care. This paper reports a key finding that engagement and willingness to consider or discuss end of life care is enhanced if patients and FCGs feel ‘known’
by HCPs, in whom they then place trust. Conversely, they may feel alien- ated and that they have little purchase within a system that does not recognise them. This may inform UK policy prioritisation of effective end of life care planning (EOLCP).
Aims: To explore experiences of ‘being known’ and the impacts on patients of navigating healthcare particularly in talking about end of life and preferences for care.
Methods: A qualitative study including comparative thematic and cross case analysis from 18 longitudinal patient case studies (93 interviews) and 19 interviews with bereaved FCGs.
Results: Participants described a range of challenges to ‘being known’.
Some stemmed from communication impairments associated with ill- ness, mental capacity or because English was not their first language.
Compounding such practical challenges were systemic barriers leaving people feeling ‘dislocated’ in a complex, bureaucratic system where information was not easily shared between HCPs or departments work- ing in silos. Often the re-telling of salient information was requested at consultations. Prior, negative experiences of healthcare greatly impacted future expectations and trust.
Conclusion: Systemic barriers leading to HCPs not ‘knowing’ patients constrained their ability to personalise care, especially in initiating dis- cussion about end of life care preferences and exploration of cultural and religious factors shaping these. Consequently, opportunities to opti- mise end of life care for BAME patients were lost as were UK policy pri- orities for effective EOLCP.
Abstract number: G-06 Abstract type: Poster
Examining the Association between Ethnicity, Socioeconomic Depriva- tion and Receipt of Hospital-based Palliative Care for People with Covid-19 - A Dual Centre Case Series in the UK
Bajwah S.1, Edmonds P.2, Yorganci E.1, Chester R.3, Russell K.3, Lovell N.3, Marsh L.3, Sleeman K.1
1King’s College London, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, London, United Kingdom, 2King’s College Hospital NHS Foundation Trust, London, United Kingdom, 3King’s College Hospital NHS Foundation Trust, London, United Kingdom
Background: COVID-19 has highlighted health inequalities experienced by people from ethnic minority groups and deprived socioeconomic backgrounds. It is unclear whether these characteristics are associated with later referral to palliative care.
Aims: To examine the association between ethnicity, deprivation, and timing of palliative care referral for patients with COVID-19.
Methods (design, data collection, analysis): Service evaluation using patient data from two London hospitals. Data on inpatients with con- firmed COVID-19 referred to the hospital palliative care service February- May 2020 were included. Patients were coded into white and non-white ethnic groups. Sociodemographic (age, sex, Index of Multiple Deprivation, ethnic group) and clinical variables (Charlson comorbidity index, reason for admission) were described. The association between ethnicity and socioeconomic deprivation with timing of referral to palliative care (days from admission to referral) was explored using a multivariable Poisson regression model.
Results: 334 patients were included. 119 (36%) were from a non-white ethnic group; most commonly Black British 77 (23%) and Asian British 26 (7.8%). Patients of non-white ethnicity were more likely to be younger, male and have higher levels of socioeconomic deprivation. A longer time between admission and palliative care referral was associated with male gender (IRR 1.23, 95% CI 1.14-1.34) and lower levels of socioeconomic deprivation (IRR=1.61, 95% CI 1.36-1.9). Non-white ethnicity was not associated with a difference in time to palliative care referral (IRR=0.96, 95% CI 0.87-1.05).
Conclusion / discussion: In this large dual-centre case series of people with COVID-19, there was no evidence that patients from non-white eth- nic groups or more deprived socioeconomic groups had longer time to palliative care referral. Ongoing monitoring of data is needed to ensure equitable delivery of services.
Abstract number: G-07 Abstract type: Poster
In-Dialogue: Consensus on a Conversation Aid for Shared Decision Making in the Palliative Phase
Noorlandt H.W.1, Echteld M.2, Tuffrey-Wijne I.3, Festen D.4, Vrijmoeth C.5, van der Heide A.1, Korfage I.1
1Erasmus Medical Center, Department of Public Health, Rotterdam, Netherlands, 2Avans University of Applied Science, Expertise Centre Caring Society, Breda, Netherlands, 3Kingston University & St. George’s, Faculty of Health, Social Care and Education, London, United Kingdom,
4Erasmus Medical Center, Department of General Practice, Intellectual Disability Medicine, Rotterdam, Netherlands, 5Eleos/De Hoop GGZ, Centre for Research and Innovation in Christian Mental Health Care, Dordrecht, Netherlands
Background: As people with intellectual disabilities (ID) grow older, pal- liative care is becoming increasingly relevant for them. ID care profes- sionals find it difficult to involve people with ID in making decisions about treatment and care in the palliative phase. A shared decision mak- ing (SDM) aid may be useful to achieve better alignment of care to values and needs of people with ID.
Aims: To develop a SDM conversation aid to enable involvement of peo- ple with ID in the palliative phase in making decisions and to evaluate its relevance and feasibility .
Methods: Based on an existing SDM model for frail older patients, litera- ture and expert opinions, we developed a draft conversation aid for peo- ple with ID (In-Dialogue). In a Delphi consensus process, an expert panel of 11 people with ID, 14 relatives and 65 healthcare professionals com- pleted 2 rounds of online questionnaires about the relevance and feasi- bility of the components of this conversation aid.
Results: Based on the first round of the expert panel’s feedback, we sub- divided the In-Dialogue aid into 4 themes: who are you; illness/end of life; making a decision; and evaluating the decision. In the second and final round, components were considered relevant by 67-97% of the panel members (M=90%) and feasible by 66-86% (M=77%). Panel
members with ID indicated that black and white icons were too abstract and asked for the use of illustrations in which the context of a situation was more apparent. The final In-Dialogue conversation aid comes in a box with a pad which resembles a board game, 13 conversation cards, 50 supporting illustrations, a workbook and an accompanying manual.
Conclusion: The Delphi panel considered the consensus-based conver- sation aid to be sufficiently relevant and feasible to be implemented in practice. The involvement of people with ID ensured that their needs and wishes were taken into account in the development of the In-Dialogue aid. This research was funded by ZonMw, grant 844001503.
Abstract number: G-08 Abstract type: Poster
Project ECHO™ Palliative Care: Impact of Tele-mentoring and Teaching for Healthcare Providers working with Rohingya Refugees in Bangladesh Groninger H.1, Richardson K.2, Doherty M.3,4, Lynch-Godrei A.5, Binta Azad T.6, Ferdous L.7, Ara R.8
1MedStar Washington Hospital Center, Washington, United States,
2Médecins Sans Frontières, New Delhi, India, 3The Children’s Hospital of Eastern Ontario, Pediatrics, Ottawa, Canada, 4University of Ottawa, Pediatrics, Ottawa, Canada, 5The Children’s Hospital of Eastern Ontario Research Institute, Pediatric Palliative Care, Ottawa, Canada,
6International Organization for Migration, Chittagong, Bangladesh,
7Bangabandhu Sheikh Mujib Medical University, Dhaka, Bangladesh,
8Shaheed Tajuddin Ahmad Nursing College, Gazipur, Bangladesh Background: The humanitarian health response is often focused on efforts to save lives, while needs of individuals with incurable conditions are often neglected. Palliative care training for humanitarian healthcare providers (HCPs) has not been incorporated into humanitarian responses. Project ECHO is an established distance-education model that seeks to develop a virtual community of practice to build capacity among HCPs, and has been successfully used to support HCPs providing palliative care in South Asia.
Aims: To develop, implement, and assess the impact of a Project ECHO for Humanitarian Palliative Care in the Rohingya Refugee Crisis in Bangladesh. Our objectives were to assess participation, program accept- ability, changes in self-efficacy and attitudes towards palliative care among HCPs as well as self-reported practice changes after six months.
Methods: Electronic surveys were distributed at baseline and after 6 months.
Results: The program consisted of 7 ECHO sessions (75-minutes) con- ducted regularly from September-October 2020. There were 75 partici- pants. Survey respondents included nurses (45%), physicians (45%), and other health care professionals (10%). The majority (60%) worked at community-level or primary care clinics (very few more specialized facili- ties in the region), and 60% were responsible for caring for ⩽ 10 patients requiring palliative care per month. Comfort and attitude scores showed improvements after participation, with stronger improvements noted in self-efficacy identifying people who might benefit from palliative care, discussing the role of palliative care, breaking bad news to families, and in treating pain.
Conclusions: Project ECHO suggests a novel educational model that can be used to support primary HCPs in humanitarian settings. We continue to see the positive impact of the program as local HCPs have continued to participate in ongoing tele-mentoring sessions offered monthly since this ECHO program was completed.
Abstract number: G-09 Abstract type: Poster
Out-of-Pocket Costs Near End of Life in Low- and Middle-income Coun- tries: A Systematic Review
Reid E.1, Ghoshal A.2,3, Kizilbash A.4, Brackett A.5, Jingjing C.6, Normand C.6,7, May P.6,8
1Yale University School of Medicine, Dept. of Emergency Medicine, New Haven, United States, 2Tata Memorial Hospital, Mumbai, India,
3Homi Bhabha National Institute, Mumbai, India, 4INFAQ Foundation, Karachi, Pakistan, 5Yale University, Cushing/Whitney Medical Library, New Haven, United States, 6Trinity College, Centre for Health Policy and Management, Dublin, Ireland, 7King’s College, London, United Kingdom, 8Trinity College, TILDA, Dublin, Ireland
Background: Globally, there is a rise in non-communicable disease, including cancer, major organ failure and dementias. Patients and their families in low- and middle-income countries (LMICs) pay a high propor- tion of medical costs out of pocket (OOP), and a diagnosis of serious ill- ness often has catastrophic financial consequences. We therefore conducted a review of the literature to establish what is known about OOP costs near end of life in LMICs.
Aims: To identify, organise and report the evidence on out-of-pocket costs in adult end-of-life populations in LMIC.
Methods: A systematic search of 8 databases and a hand search of grey literature was performed. Two independent reviewers screened titles and abstracts, assessed papers for eligibility and extracted data. The review was registered with PROSPERO and adhered to the Preferred Reporting items for Systematic Reviews and Meta Analyses. The Mixed Methods Appraisal Tool was used to assess quality. The Wagstaff taxon- omy was used to describe OOP.
Results: After deduplication, 9343 studies were screened, 49 full-text articles were assessed for eligibility and 12 were included in the final review. OOP were higher for those subjects who died in hospital versus at home, and increased with advanced illness and disease severity. The main drivers of OOP were medications and hospitalizations, with high but variable percentages of the affected populations reporting financial catastrophe.
Conclusion: Despite a small number of included studies and heterogene- ity in methodology and reporting, OOP for care near end of life in LMIC represent an important source of catastrophic health expenditures and impoverishment. This suggests a role for widespread, targeted efforts to upscale palliative care provision in LMIC, as a poverty reduction strategy.
Financial protection policies for those suffering from incurable disease and future research on the macro- and micro economics of palliative care delivery in LMIC are greatly needed.
Abstract number: G-10 Abstract type: Poster
A Personalised Approach isn’t Always Enough - Specialist Palliative and Hospice Services Response to People from Ethnic Minority Groups Diagnosed with COVID-19: An Observational Study (CovPall)
Bajwah S.1, Koffman J.1, Hussain J.2, Hocaoglu M.1, Fraser L.K.3, Walshe C.4, Oluyase A.O.1, Bradshaw A.2, Allwin C.1, Cripps R.1, Higginson I.J.1, Murtagh F.E.2
1King’s College London, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, London, United Kingdom, 2Hull York Medical School, University of Hull, Wolfson Palliative Care Research Centre, Hull, United Kingdom, 3University of York, Health Sciences, York, United Kingdom, 4Lancaster University, International Observatory on End of Life Care, Lancaster, United Kingdom
Background: The disproportionately high death rate of those from eth- nic minority groups from COVID-19 is well documented. Little is known about how palliative care services have responded.
Aims: To map and develop insights into the response of palliative care services caring for patients and families from ethnic minority groups dur- ing the COVID-19 pandemic.
Methods: (design, data collection, analysis): Cross-sectional on-line sur- vey of UK palliative care services’ response to COVID-19. Quantitative
data were summarised descriptively and chi-square tests used to explore relationships between categorical variables. Open-ended responses were analysed using reflexive thematic analysis.
Results: 93/277 (34%) responding palliative care services reported on care for COVID-19 patients from ethnic minority groups (60/123 (49%) hospital palliative care teams and 35/152 (23%) hospice inpatient teams). Nearly two-thirds (59%) of services offered care across multiple settings. Services who supported those from ethnic minority groups were more likely to have hospital palliative care teams (χ2 =15.21, p
<0.001) and less likely to have inpatient hospice (χ2 = 30.11, p <0.001) or home palliative care teams (χ2 = 7.05, p= 0.008). 61/93 (66%) responding services stated there was no difference in how they sup- ported or reached ethnic minority groups. Five main themes were iden- tified from free-text comments:
1) disproportionate adverse impact of restricted visiting 2) compounded communication challenges
3) unmet religious and faith needs 4) mistrust of services and
5) equal but inequitable service response.
Conclusion / Discussion: Policies introduced during the COVID-19 pan- demic may have disproportionately adversely impacted those from eth- nic minority groups. The palliative care response may have been both unequal and inequitable. The traditional focus of personalised care is not enough. We provide urgent recommendations for service providers and policymakers.
Abstract number: G-11 Abstract type: Poster
Facilitating Access to Hospice Care in Socially Deprived Areas: A Mixed Methods Multiple Case Study
French M.1, Preston N.1, Keegan T.2
1Lancaster University, International Observatory on End of Life Care, Lancaster, United Kingdom, 2Lancaster University, Lancaster Medical School, Lancaster, United Kingdom
Background: While there have long been concerns that social depriva- tion is associated with access to hospice care, there is uncertainty about the factors influencing access in the most socially deprived areas.
Aim: This study aims to explore the association between hospice refer- rals and area social deprivation, and the factors influencing access to hospice care in the most socially deprived areas.
Methods: Access to hospice care was explored in three different areas of North West England using a mixed methods multiple case study approach.
Data relating to hospice patients, referrals, and area characteristics were analysed using Poisson mixed models and multiple linear regression.
Qualitative interviews with specialist and generalist palliative care profes- sionals were analysed using thematic analysis. Each area was analysed indi- vidually before comparing findings in a cross-case analysis. Data from 8699 hospice patients and 42 healthcare professionals contributed to the study.
Results: Social deprivation was not statistically significantly associated with hospice referral rates in any of the three areas (Area 1, Incidence Rate Ratio (IRR) 1.04, p=0.75; Area 2, IRR 1.09, p=0.15, Area 3, IRR 0.88, p=0.35). Access to hospice care in socially deprived areas was influenced by how hospices adapted to local organisational and population con- texts. Good working relationships with hospitals may have facilitated hospice referrals of patients from the most socially deprived areas.
Discussion: Hospice care in the UK can be organised in ways that facili- tate referrals of patients from the most socially deprived areas, although uncertainty about what constitutes need for hospice care limits conclu- sions about equitable access. This study encourages an understanding of access that goes beyond referrals to consider how access to hospice and other end-of-life care is continuously generated in interactions between healthcare professionals and patients.
Abstract number: G-12 Abstract type: Poster
Facilitators and Barriers to Access and Utilisation of Palliative Care among Non-western Migrants: A Systematic Review
Shabnam J.1, Timm H.2, Nielsen D.3, Raunkiaer M.1
1University of Southern Denmark, REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, Nyborg, Denmark,
2University of Southern Denmark, National Institute of Public Health, Copenhagen, Denmark, 3University of Southern Denmark, Migrant Health Clinic, Odense University Hospital, Odense, Denmark
Background: Non-western migrants living in Europe, have a tendency to lower utilisation of existing hospice and palliative care at the end of life.
Aim: To identify and describe published research on the European evi- dence on facilitators and barriers to access and utilise palliative care among non- western migrants.
Methods: A systematic review in accordance with PRISMA guidelines was conducted on 26th of June 2020, searching Medline, CINAHL, PsychINFO and EMBASE databases. Search words were for example ethnic groups and palliative care. Studies included empirical research and published between 2011 and 2020. Thematic analysis was used to analyse data.
Results: [MR1] Of the 116 articles meeting the inclusion criteria, thirty- five articles were included, 29 qualitative and 6 quantitative. More than half of all articles were conducted in UK (n=19), followed by Netherlands (n=4), Germany (n=3), Belgium (n=3), Sweden (n=2), Norway (n=2), Austria (n=1), and Denmark (n=1). Three main themes were identified 1.
poor communication and poor language proficiency of the migrants, 2.
lack of knowledge and awareness among migrants about the existing pal- liative care services and 3. lack of resources at different levels of palliative care service provision. Identified themes result in barrier to access and utilise existing palliative care services. To facilitate utilisation of palliative care among migrants provision of professional interpreter, flexibility of health care facilities to embrace diverse patients, and cultural competent training towards health professionals were suggested in articles.
Conclusion: This review highlights that barriers exist in the system, and at community and individual level, yet, recommendations are mostly at individual level. Thus, it will be worth noting existence of the challenges on different levels while deigning intervention to ensure equal access.
Abstract number: G-13 Abstract type: Poster
Gender Gap in the Illness. Measuring the “Gender Financial Toxicity Gap” in Cancer Patients Receiving Home-based Palliative Care Maiorana L.1, Vitale S.1, Campo A.1, Di Noto D.1
1SAMOT Ragusa Onlus, Ragusa, Italy
Aim of the work: The COmprehensive Score for financial Toxicity (COST) is considered a validated measure to assess financial toxicity in patients with cancer. Does the gender gap influence financial toxicity? The European Institute for Gender Equality (EIGE) compares yearly mean monthly earnings of women and men (“gender earnings gap”). In Italy, women’s mean monthly earnings amount to almost a fifth less (-17,57%) than men’s (EIGE, 2020). The study is aimed at examining the “Gender financial toxicity gap” evaluating differences in COST values among patients with respect to gender. Observation of our organisation’s data on palliative care services provided in 2020 highlights that, among peo- ple aged less than 67 years (still not retired), women demand more pal- liative care services than men. Since cancer is very often associated to unemployment and poor work ability, can these women cope with grow- ing medical and non-medical expenses and bear the financial burden of the illness? Unfair working conditions imposed to women imply a higher
COST value and suggest that grade of financial toxicity is significantly influenced by gender.
Methods and approach taken: In order to collect empirical data on financial distress related to the course of the illness, our organisation is measuring the “gender financial toxicity gap” using the COmprehensive Score for financial Toxicity (COST).
Results: Financial toxicity hits more women than men. Cancer reinforces inequality and widen disparities, and as disease progresses, the “gender financial toxicity gap” tends to widen. Our data show a significant “gen- der financial toxicity gap” within the sample observed.
Conclusion: Cancer exacerbates inequalities and widens the gender gap.
Policy initiative should consider solutions to tackle “gender financial tox- icity gap”, in order to guarantee all cancer survivors appropriate financial means to sustain out-of-pocket costs and deal with the illness. The study is self-financed.
Abstract number: G-15 Abstract type: Poster
Palliative and End-of-Life Care, People with Intellectual Disabilities &
Covid-19 (PEPIC-19): An International Survey
Tuffrey-Wijne I.1, D’Hollander N.2, Echteld M.3, Oliver D.4, Forrester- Jones R.5, McCarron M.6, Schaeper S.7, Westergard B.-E.8, McCallion P.9, Uitdehaag M.10, Abu-Saad Huijer H.11, Karbasi C.12, EAPC Reference Group Intellectual Disability
1Kingston & St George’s University of London, Faculty of Health, Social Care & Education, London, United Kingdom, 2Ghent University, Ghent, Belgium, 3Avans University of Applied Science, Breda, Netherlands,
4University of Kent, Canterbury, United Kingdom, 5University of Bath, Bath, United Kingdom, 6Trinity College Dublin, Dublin, Ireland,
7Catholic University of Applied Sciences North-Rhine Westphalia, Westphalia, Germany, 8Oslo Metropolitan University, Oslo, Norway,
9University at Albany, New York, United States, 10Saxion University of Applied Sciences, Enschede, Netherlands, 11University of Beirut, Beirut, Lebanon, 12Complutense University of Madrid, Madrid, Spain
Background: People with intellectual disabilities (ID) have worse health outcomes and face inequalities at the end of life. It is not clear how Covid-19 has affected end of life care.
Aim: To gain insight into the perceived COVID19 related changes in pro- vision, quality and challenges of palliative and end-of-life care to people with ID in countries across the world.
Method: An international anonymous online survey, aimed at health/
social care professionals, was developed by 15 researchers from 10 countries (part of the EAPC Reference Group on Intellectual Disabilities).
It was based on the 2015 EAPC White Paper on ID describing 13 good practice norms. Data were analysed using descriptive statistics, with content analysis of free text.
Results: 471 respondents from 19 countries completed the survey between Oct 2020-Mar 2021 (88% health/social care professionals, 12% academic/educators). North West Europe was over-represented, but responses were received from other countries including USA, Australia and Asia. Areas of end-of-life care most frequently reported as less in line with the 13 investigated norms were “adequate bereave- ment support for people with ID” (40%) and “adequate training/sup- port for healthcare staff” (40%). Areas showing the greatest concordance with these norms were “access to hospital care when needed” (62%) and “families involved in end-of-life decisions” (50%).
Areas that most respondents reported as worse during the pandemic were “people with ID attending funerals” (57%), “opportunities for families to be involved in care” (49%) and “adequate support from health/social care professionals for the end of life needs of people with ID” (41%).