Time: Thursday, 24/Oct/2024: 11:00am - 12:30pm Session Chair: Kerrie Noonan, Death Literacy Institute, Australia Session Chair: Allan Kellehear, Northumbria University, United Kingdom |
Location: Kornhausforum - Plenary hall Kornhausforum, 2nd floor, 3011 Bern |
Bridging policy gaps in palliative care through political engagement: an action learning case study in Thailand
1Compassionate Communities Research and Devlopment Institution Foundation Thailand, Thailand; 2Consultancy of public health committee of the parliament
Background: While Thailand possesses limited palliative care (PC) policies addressing advance directives, pain management, and home visits. Significant gaps remain, including community-based support, education, and end-of-life literacy. Due to the limited political attention to these crucial areas, the author explored the impact of direct political engagement in advancing public health palliative care policy.
Objectives: 1) elevate PC on the national agenda, and 2) raise public awareness on PC and good death issues.
Methods: This action-learning case study details the author's candidacy for the Thai parliament with the Move Forward Party (MFP), integrating PC as a campaign plank among 300 policy proposals, such as community PC center, medical equipments for PC home ward, good death act, etc. Leveraging my writing and cartooning skills and also years of experience in compassionate communities facilitator and project manager. Articles and artworks promoting PC policy were published throughout the campaign. Prime minister candidate presented good death policies in between debate and interviews events.
Results: 1) PC policies resonated with voters in healthcare, community work, and patient/caregiver sectors. 2) PC policy became a cornerstone of the platform, adopted by the government formed. Now the minister of the public health focus more on community based palliative and hospice care policies. 3) Public awareness and demand for PC, good death practices, and Medical Assisted in Dying (MAiD) increased, with death and end-of-life discussions becoming more normalized.
Conclusion: This case study suggests the potential of political engagement to expedite PC policy change and public discourse. However, political engagement opportunity of advocators may depends on national and local political context such as openness of political parties and interest of advocators. Action learning still in the process. The broader applicability of this approach, its limitations, and its long-term sustainability would be explored in near future.
Keeping health care affordable - which health care components drive the cost of end of life care in hospitals?
University of Bern, Switzerland
Background
Literature highlights the benefits of specialist palliative care (PC) programs in enhancing end-of-life care quality, yet research on PC's economic aspects, particularly in Europe, is scarce. The OECD reports significant financial strain on the healthcare systems of the world’s wealthiest countries, with Swiss healthcare spending increasing by about 2% annually since 1990. This economic perspective is crucial as substantial healthcare costs often accumulate in the last months of life. Existing cost studies, primarily from the U.S., provide mixed results and lack detailed analyses of cost components -such as pharmacy, materials, laboratory, room, catering, patient management, physician, nursing, therapy, and social counseling- in PC especially from studies with a control group like usual care (UC) patients.
Objectives
This study shows the costs components of patients who deceased in a tertiary hospital comparing patients who received PC and UC.
Design
Observational retrospective data analyses of administrative hospital data.
Methods
Our research involved reviewing medical records of 3’586 patients, who died in a tertiary hospital between January 2016 and December 2022 focusing on health-related and economic data from the last hospitalization. Crude cost data with mean and standard deviation were compared between PC and UC group using linear regression with robust standard error. We used bootstrapping to correct for bias and calculate 95% confidence intervals. Cost data were adjusted using inverse probability weighting based on propensity scores.
Results
Our preliminary results show that costs directly related to patient care -such as those for nursing, therapy, and room- increase significantly for patients receiving specialist PC. Conversely, there is a significant reduction in costs associated with physician lead, medical intervention, medication, laboratory tests and materials, contributing to a lower total daily cost for PC patients compared to those receiving UC. Nevertheless, total costs per hospital stay rise due to longer length of stay of patient with PC likely due to challenges in transferring long-term patients to other facilities or home settings prior to death.
Conclusion
Even though hospitals have only few possibilities to balance quality and costs, one controlling instrument for hospitals might be an increasing implementation and promotion of PC not only for quality reasons, but also to allocate costs efficiently at the end of life.
Major discrepancy between peoples´ preferences for place of care and dying and actual place of death in Sweden.
1Sophiahemmet University, Stockholm, Sweden; 2Gothenburg University, Gothenburg, Sweden; 3Lund University, Sweden, Lund, Sweden; 4Palliative Centre, Sahlgrenska University Hospital, Gothenburg, Sweden
Background and study aim
Swedish palliative care policy, launched in 2012, emphasize peoples´ right to participate in the planning and decision-making about their end-of-life care, including where to receive the care and die. This abstract presents two studies with the interest in disclosing potential policy responses by investigating Swedish peoples´ preferences for place of end-of-life care and dying, and longitudinal trends in place of death within the adult Swedish population from 2013 to 2019.
Methods
The preference study was based on survey data from a stratified sample of 1 752 individuals from the total Swedish population 2023. Logistic regression analyses for associations between preferences and individual, geographic, socioeconomic factors and palliative care literacy, and heterogeneity analyses are currently being performed. Longitudinal trends in place of death, 2013-19, were based on data from public and patient data registers including all deceased individuals >18 years old with a registered place of death (n=599 137), and the national register for palliative care. Logistic regression- and interaction analyses were used to investigate trends and associations between place of death and co-variables.
Results
Of all individuals, 59,8 % declared a definitive preference for receiving care at the end-of-life care in their own home, and as much as 69,8% stated that home was the definitive preferred place to die. The place of death study showed a trend towards a decrease in hospital deaths but with cross-regional variations. The total number of home deaths increased by 1,9%. In the overall population of individuals living in their own home, the likelihood of dying in hospital versus dying at home decreased (OR: 0.98, CI: 0.97–0.99). Within the home dwelling population with potential palliative needs (78,4 %), the likelihood of dying in hospital equally decreased, except in Stockholm and the north region.
Conclusion and implications
There is a major discrepancy between preferences and actual place of death among Swedish citizens. Whereas a majority prefer to be cared for and die at home, still, in 2019 only about one fifth of all individuals did so. Clearer articulation of goals and strategies related to place of death in national palliative care policy is suggested, and public health-oriented interventions aimed at strengthening resources in home care are needed.
Transferable policy solutions for supporting employed end of life family caregivers: Canadian Compassionate Care Benefit
1The University of Sheffield, United Kingdom; 2The University of Victoria, Canada
Background: Family caregivers provide the majority of care for people with palliative and end of life care needs. Due to changing demographics internationally, increasing number of caregivers are taking on a caring role whilst in paid employment, and will continue to work whilst providing care. Policy and employment legislation are key for supporting employed family caregivers, but few countries offer comprehensive support. The Canadian Compassionate Care Benefit (CCB) is one example of a benefit which supports employed family carers, but the potential transferability of the (CCB) to other countries has not been explored.
Aim: The aim of this study was to explore the implementation and impact of the Canadian Compassionate Care Benefit and assess its potential transferability to comparable countries.
Methods: A multi-method design was used, incorporating an integrative literature review and qualitative semi-structured interviews with stakeholders from across Canada. The literature review searched four databases for evidence on the CCB, relevant data were extracted and key themes were identified. Qualitative interviews were undertaken with professional stakeholders with expertise on the CCB, data were analysed using reflexive thematic analysis. In line with multi-method research the findings from the two phases were analysed separately and were integrated at the stage of interpretation.
Results: Data from the integrative review and interviews generated the following key themes: (1) socio-political context leading to the implementation of the CCB; (2) evolution of the CCB policy scope; (3) cost and cost effectiveness of the CCB; (4) positive impacts of the CCB on patient/carer/labour market; (5) perceived problems with the CCB; (6) transferability of CCB to other comparable countries.
Conclusion: The Canadian Compassionate Benefit is one of very few policies globally that provide financial assistance for employed end of life family caregivers. As such the CCB may provide a useful model for future policy developments in comparable countries, including the UK. Whilst the CCB was developed and implemented specifically for the Canadian context, there is significant potential for it to be adapted for use elsewhere. Further research on the Compassionate Care Benefit, particularly around cost-effectiveness, would support international policy transfer.
“Why should I care?”: an audience reception study of public awareness campaigns on palliative care.
1End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University; 2Department of Public Health and Primary Care, Ghent University; 3Movement and Nutrition for Health and Performance Research Group, Department of Movement and Sport Sciences, Faculty of Physical Education and Physical Therapy, Vrije Universiteit Brussel; 4Department of Medicine & Chronic Care, Vrije Universiteit Brussel; 5Flanders Institute for Healthy Living, Brussels, Belgium
Background: Public awareness campaigns on palliative care (PC) aim to combat limited knowledge and negative perceptions of PC. However, little is known on their public reception.
Objectives: To examine how existing public campaigns on PC are interpreted, evaluated and allocated meaning by members of the general public, and how campaign materials and surrounding conversations affect prior perceptions of PC.
Design and methods: Three public campaigns (spread in Flanders or the Netherlands between 2020-2023) were discussed in ten focus groups. Participants (n=65) were recruited via a sequential maximum variation sampling strategy. Conversations were analyzed using the Multidimensional Audience Reception Model.
Results: Our study revealed large differences between campaigns concerning overall appeal, clarity of communication, attitudinal responses toward the perceived message and its delivery. People with personal experience surrounding serious illness were generally more open towards campaign messages, while a sense of personal relevance was lacking for persons without these experiences. Conversations surrounding the campaign materials revealed a dominant perception of PC as end-of-life care provided mainly in hospitals to severely ill, bedridden persons. Campaigns that informed on PC through the perspectives of persons with serious illness, while portraying them in their strength, were more positively evaluated and effective in changing prior perceptions. Conversely, materials that neglected the patient’s voice and focused on ‘PC enabling small joys despite serious illness’ generally fortified prior perceptions and were often rejected. Further, a preference for more emphasis on the broader social context surrounding the patient was recurrently expressed. Lastly, conversations in themselves proved to be a valuable tool to positively influence understandings and openness towards PC, and organizing local conversation events was repeatedly suggested.
Conclusion: Diversified strategies, optimizing a sense of personal relevance for the target audience, are needed to improve public understanding and engagement with PC. Beyond the broad dissemination of succinct messages on PC, more opportunities for meaningful dialogues within local communities need to be created. Destigmatizing PC also involves destigmatizing persons with serious illness and representing them in active and resilient positions is vital to this.
Conflict of interest: None.