Background: The Premier Education and Culture Institute in Brazil and St Christopher’s Hospice in the UK have a long-term relationship, focused on a shared aspiration to build capacity and capability in health professionals and others through the offer of education and training in palliative and end of life care.
Over the years, Premier has led the rollout of QELCA® (Quality End of Life Care for All) to over 51 institutions from 26 cities, and 122 palliative care professionals as facilitators. Through the Train the Trainer approach, at least 642 professionals in Brazil have benefited from palliative care educational interventions.
More recently, it has become a Beacon of CARE, also focused on delivering high quality education and training but with a broader portfolio of learning curricula and resources.
The Centre for Action and Response to End-of-life (CARE) is part of St Christopher’s. Together, the two organisations are identifying opportunities for new courses in palliative care for people working in Brazil, then contextualising and developing courses developed by St Christopher’s to meet local opportunities and challenges.
Premier, a non-profit education and training institute focused on training professionals in the public health system, is led by an extraordinary doctor and visionary Samir, who has drawn together family and others to pursue his vision for a more equal and fair society in which people can live, die and grieve well.
This is no insignificant challenge. Brazil has a population of over 200m people, many of whom are subject to significant structural inequalities, including those related to health and end of life.
Taking part of an Encounter experience in Sao Paulo
I was honoured to join Beacon colleague Manuela Salman and others from Premier at a recent “encounter” event in July, open to anyone in Brazil committed to advancing palliative care in this country. The four-day programme brought together around 380 individuals involved in adult and paediatric care, community and inpatient facilities, urban and rural services. The audience comprised a rich mix of students, senior clinicians, policy makers and volunteers. Together they shared local, national and global experiences of delivering palliative care, made connections and new relationships and explored opportunities for advancing palliative and end of life care in their country.
Specifically, the participants renewed their commitment to an advocacy social movement called Frente PaliATIVISTAS, which played a key role in the approval of Brazil’s National Palliative Care Policy—grounded in primary health care.
The movement is now focused on securing funding for the policy, aiming to ensure that more people have access to high-quality palliative care, regardless of the inequalities they face.
The four days included celebratory events, formal presentations, music, and a number of different exhibitions. Musicians, young children from the local favella, a world-renowned theologian and generous hosts brought perspectives beyond palliative care, contextualising the thinking of the encounter in wider issues of climate change, art, samba, jazz and human connectivity.
Reflections on the encounter
It is tempting to say more in this article about the details of the encounter. It provoked much thought I me. Instead, I am interested to reflect on what UK palliative care services can learn from colleagues in Brazil that became evident in the encounter.
My desire to do this reflects a growing concern about palliative care in the UK. A long time actor in the field, I see a sector that appears to be shrinking – in terms of provision, voice and aspiration, despite significant growth and impact over recent decades.
Fears about funding are significant; anxiety in relation to a possible change in the law around assisted dying are paralysing; and lack of investment in ongoing education and training denies organisations and their workforce time to prepare for changing needs and opportunities. We, in the UK, could learn from Brazil, and specifically those who took part in “the encounter’. They struggle with many of the same challenges, but there is a strong sense of momentum. What I wonder, are they doing, that we could emulate in the UK to sustain our ambitions, energy and outputs in the future.
- Invest in relationships
At the heart of the ambition, confidence and energy of the encounter was the belief in the value of everyone present and their different contributions to a new outlook for Brazil.
The encounter began with an evening celebrating past achievements on the part of QELCA® centres, then some aspirational talks from teachers from the local favella and others who spoke of a different future for people living in Brazil, particularly those whose lives had been shaped by inequity.
The connections and interest in others were perpetuating features of the encounter, culminating in a celebration at the end of the encounter in a local restaurant to which all attendees were invited. In the course of each day, people gathered at breaks, the start and end of the day to renew and strengthen relationships that had personal as well as professional value and were of an enduring nature.
- Be political
Despite the convivial nature of the event there was a strong and uncompromising call for renewed commitment on the part of the Government of Brazil to its promise of better palliative care for its population.
The detail of the policy exists, but there is little investment in its roll out in practice. Whilst the flavour of the encounter was one of love and concern for each other, there was a resounding and unremitting demand for action on the part of politicians and others in positions of responsibility.
Politicians from the Ministry of Health were invited and participated in the event alongside clinicians, generating a strong and shared sense of accountability.
- Look beyond professional services to redress inequalities
One of the most notable elements of the encounter was the partnership evident between community led initiatives, particularly compassionate communities and hospital services, all working to enable people to live and die better, wherever they lived.
Many of the professionals volunteering in community initiatives worked also in private hospitals. There was no sense of any hierarchy of value or expertise, instead a mutual appreciation of the different elements of care provided across a broad economy.
Community led initiatives extended beyond informal care, incorporating elements of community life such as samba bands for children and young people. Stories of success included crowd funding for individuals in distress alongside organised responses. Professionals were keen to be seen to support community led initiatives and proud when they did so.
- Act generously
The founders of Premier Institute do not appear to require any acknowledgement of their role as leaders of long term and successful change. Instead, they work hard to acknowledge the contribution of others, drawing in new and different actors to reflect the breadth of agenda they have set.
The programme drew on a wide range of contributors, recognised for past efforts and future offers. Their spirit of generosity was inclusive, clearly enjoying difference across individuals and groups.
- Address the future with courage
Finally, the courage with which the encounter organisers attended to difficult issues, including that which might undermine their reputation was notable.
Issues such as the vital role of palliative care in assisted dying and lack of professional advancement opportunities for some disenfranchised community groups were fully addressed, supported by the audience who listened with curiosity, and showed their commitment to a different world through active involvement in panel discussions and similar.
Concluding thoughts
It would be easy to consider Brazil sufficiently different to the UK that there is little opportunity to find parallels that offer new and reciprocal solutions beyond that country. I believe that is that is far from the truth and key speakers from other parts of the world confirmed this to be the case also.
UK based speakers such as Allan Kellehear highlighted the value of the public health approach adopted by Brazil and the progress of its compassionate communities. Mark Stoltenberg from the USA noted the huge advances towards greater universal access despite the inequalities. My own reflections acknowledged the highly relational approach to improving care in Brazil – a far cry from the often transactional approach to care that is increasingly common within the UK.
Moving forward, St Christopher’s is keen to perpetuate the partnership and learn from Premier Institute and its local partners. Premier Institute similarly acknowledges opportunities to build leaders and rehabilitation services via St Christopher’s CARE. We can see a much brighter future through our work together. Long may it continue
Heather Richardson
https://www.stchristophers.org.uk/brazil-a-country-in-which-palliative-care-certainly-has-a-future/
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