Chair: Dr Sally Paul
a. Outside the margins: Palliative and end of life care eduction for homeless support services
Background: The CQC report ‘A different ending: addressing inequalities in end of life care’ highlighted homeless people with end of life care needs experience considerable barriers accessing palliative care. Mary Stevens Hospice developed an education workshop for hostel workers, police officers, and local authority teams focussing on palliative care, advance care planning, and accessibility of hospice services.
Aim: Collaborate with organisations who previously had not worked in partnership with hospice, allowing choice and access for people experiencing homelessness requiring palliative care.
The workshop aimed to identify barriers homeless people experience accessing palliative care, engaging seldom- heard communities and identifying training needs for non- health care workers. Lastly Mary Stevens Hospice wanted to develop relationships with local hostel, police and homelessness team , with consideration of developing pathways into hospice services.
Methods: Community engagement with statutory and voluntary organisations, identifying ways of integrating services and up-skilling non health care professionals. A pilot education day was facilitated in July 2018. There was recognition from involved parties the value of working together to better support homeless people approaching end of life. A referrals and signposting database was implemented at Mary Stevens Hospice and workshop feedback evaluated.
Conclusion: Fourteen people attended workshop, including community police, hostel support staff and outreach workers. Attendees reported increased confidence having early, courageous conversations, discussing end of life concerns and priorities. Hospice received first referral and people signposted to services. Advance care planning and Dying Matters events planned.
The workshop highlighted a lack of pathway for homeless people accessing services and a continuation of partnerships, nurturing relations between organisations is necessary to working toward removing barriers to palliative care. Hostel recognised five persons whose health a cause for concern. Police and hostel manager visited hospice and plans for a hospice open day are in development.
b. The Life:Moving Project: Changing perceptions of end of life through film
Dr Michele Aaron and Dr Jed Jerwood
Centred on a six-month filmmaking project based at John Taylor Hospice in Birmingham, UK, this research project investigated the ethical issues involved in representing end of life experience through the medium of digital film. Through workshops and home visits, participants were given practical and critical training and support to develop and co-create their own films. Six films resulted and an exhibition was designed for them and installed at a community space local to the hospice at the end of the project. Subsequently, the films and research have been shared with end of life communities in the UK and Europe where the insights offered into the experience of dying and of end of life care has had a powerful impact upon various audiences, especially within the palliative health community. As well as demonstrating the benefits of such projects for patients and their loved ones and for illuminating the everydayness of dying, Life:Moving reveals the value of Arts practice and participatory research for the end of life community.
The project aimed to challenge society’s misconceptions about terminal illness by providing those experiencing it with the opportunity, skills and platforms to tell their own stories, and by bringing these stories to a wide audience. In prioritising ethical praxis throughout – as the project’s foundations, orientation and ongoing discussion point - the project aimed to counter the pervasive objectification or disregard of the dying within the public sphere. In these ways, the research sought to better understand the potential of digital film to serve the best interests of the vulnerable lives it so often depicts and then disseminates. It also sought to model best practice for the increasing use of filmmaking for creating compassion within public health and palliative care initiatives.
c. The contribution of and support for volunteer palliative care: A survey of volunteers across the health care system
All authors: Steven Vanderstichelen, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Prof. Joachim Cohen, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University)
Yanna Van Wesemael, Palliabru
Prof. Luc Deliens, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Prof. Kenneth Chambaere, End-of-Life Care Research Group (Vrije Universiteit Brussel & Ghent University) & Department of Public Health and Primary Care (Ghent University)
Presenting Author: Steven Vanderstichelen
Volunteers across various health care organizations are an important resource for Compassionate Communities to bridge palliative care (PC)) services and the community. However, to date, no studies have systematically mapped volunteers’ actual contributions to PC provision and how well they are supported by and within different healthcare organisations. Such insights are important in order to shape and optimize supportive environments for volunteering in PC.
To describe current volunteers’ social backgrounds, their activities in terms of tasks, the training and supervision they receive, as well as how they evaluate these in PC.
We conducted a cross-sectional postal survey of PC volunteers in Flanders and Brussels in 2018 using a disproportionately stratified cluster random sample of 2273 volunteers across dedicated and generalist PC services.
Response was obtained for 801 (35.2%) volunteers. Volunteers were predominantly women (75.5%), retired (40.8%), aged 61-70 (46.2%) and had a professional or academic degree (58.7%). Two dimensions in task performance emerged from the data during volunteers’ last session with a patient with serious illness. The ‘multidimensional support’ dimension was mainly associated with dedicated PC volunteers, and represented broad task performance, emphasising psychosocial, existential and signposting tasks. It was associated with receiving structured (p=.001) and group (p<.05) supervision, and extensive training (p<.001). The ‘nursing support’ dimension was mainly associated with sitting services and represented narrow task performance, emphasising nursing tasks. It was mainly associated with receiving training in nursing tasks (p<.001). With the exception of those active in nursing homes, volunteers tended to evaluate their role, training and support as satisfactory.
Results indicate that with training and consistent supervision, volunteers can offer versatile support for patients with serious illnesses. This currently happens in dedicated PC services, however results indicate that volunteers in nursing homes and community home-care may have suboptimal support and training.
d. Educating youth in public health approaches to palliative care
Ensuring comfort , dignity and care based on needs and preferences, during one’s final days still remain a little addressed area. While some countries have achieved affordable access to palliative care, cost effective practical palliative care support still remains a far-fetched dream in resource limited countries.
India has only achieved 1%-2% coverage of palliative care so far. Paradoxically, Kerala, a southern state offers palliative care to almost all. Out of the box thinking to invest in providing resources and education has been an distinctive quality of Kerala. Since last 4 years, palliative care is one of the basic optional skills sets available for children in Kerala. Additional Skill Acquisition Program (ASAP) is a joint initiative of General & Higher Education Departments of the Government to provide skill sets to students along with regular education. The palliative care skilling program as part of ASAP, designed by Institute of Palliative Medicine, is named Basic Certificate Course in Community Nursing and Palliative Care (BCCCNPC).
BCCCNPC consists of 300 hours of theory and practicals covering 1) concept, history, philosophy and fundamentals of palliative care, 2)communication skills 3)common disease conditions and basic nursing needs, 4)home based psycho-social care, head to foot care and symptom management, 5) Pharmacology and 6) seeking expert care. It also includes practical sessions at the palliative care centres and a 20 day internship.
BCCCNPC has so far equipped 670 higher secondary school children in principles and philosophy of care and hands on palliative care. Now, they are active carers in their family as well as in their neighbourhood. Many have developed a liking towards gaining advanced knowledge in palliative care and importantly, many have reported to have gained a better insight into the thoughts and emotions of people suffering from incurable diseases.