The ‘Nurses as Trailblazers and Pathfinders’ virtual conference was held on Tuesday 9th July. The conference was organised for the Global Palliative Nursing Network (GPNN) by St Christopher’s Care and the International Children’s Palliative Care Network (ICPCN).
Chaired by Prof Heather Richardson and Prof Julia Downing, the aim of the event was to encourage nurses around the world to feel inspired and rejuvenated as part of a worldwide network of nurse leaders,
Heather opened the conference and encouraged participants to feel part of the GPNN community that is aspirational about making a difference in palliative care for adult and for children. She welcomed participants from around the world, many working in challenging situations, in work that has a high emotional toll on us as nurses. Participants worked in a variety of nursing roles, across the lifespan.
Eight GPNN Champions led introductory breakout sessions with colleagues from their region of the world and it was great to see a wide range of nurses from many countries, working in different settings, and at different stages of their careers.
In the first session, Dr Stephen Connor, Executive Director of the Worldwide Hospice and Palliative Care Alliance (WHPCA) gave the first presentation on the topic of the 10 year anniversary of the World Health Assembly Resolution in Palliative Care which was passed in 2014. He introduced the Resolution and its key recommendations, situating it within the global need and policy for palliative care. He discussed the disparities between countries, regions, settings and ages for access to palliative care.
Prof Julia Downing then gave a rousing presentation encouraging nurses to be change agents to ‘make things happen’. Emphasising the need to close the gap between the need for palliative care and current provision, she encouraged participants to change the “What is” to the “What should be”, to make sure that as nurses we have a seat at the table. She urged participants to action the words of Dame Cicely Saunders to “walk the walk and stay the course and continue the task of changing the world.” She challenged participants to look in the mirror and ask who they see – do they see ‘just a nurse’ or a ‘powerful nursing change agent’ – a lion cub or a lion. Marie Cooper then encouraged us all to reflect on where we are in our journey and identify areas that we can develop in the future.
The second session was chaired by Marie Cooper and focused on introducing nursing change agents from around the world. She encouraged participants to think about the ‘shared characteristics’ of the Global Change Agents, and their ‘distinctive strengths’.
Christian Tsotsie, from Cameroon, shared his experience of bringing about change in access to palliative care through setting up a charity “Soigner le Vie’. He discussed his vision and goals for palliative care and outlined many of the socio-economic and cultural challenges and some of the ways that Soigner le Vie have tried to overcome these, such as through the provision of home-based palliative care, education and training, and a conference in 2019. He finished by sharing some lessons learnt and encouraged participants that “developing palliative care is not easy but it’s possible if you set your mind to it.”
Dr Silva Dakessian Sailan then shared two initiatives in Lebanon. She discussed how those committed to palliative care came together and set up the Lebanese Association of Palliative Nurses under the Order of Nurses in Lebanon. They developed the European Certificate in Essential Palliative Care which they revised for the Lebanese setting using a PDCA Cycle (Plan-Do-Check-Act). The second initiative was to enhance nursing student education through introducing a simulation activity for the dying patient.
Following this Dr Halima Ali and Geraldine Damanhuri shared their story of advancing palliative care amidst the challenge posed by the war in Sudan. Having introduced the situation of palliative care in Sudan they shared how they have tried to maintain their focus and be adaptable throughout adversity to ensure that patients and their families can access palliative care despite the war.
Finally in this session we heard from Leonor Pacheo, a nurse from St Christopher’s Hospice in London. She talked about seizing opportunities that extend beyond our routine tasks and their potential to impact nurses and our understanding of palliative care. Sharing the story of Eddie, which has previously been shared on social media, she explored how they had taken opportunities such as dancing, to enhance quality of life not just for Eddie but for their family as well. She illustrated how we can step outside of conventional practice and comfort zones to enhance care. She highlighted that ‘Being relational is key to enacting the art of nursing as opposed to its science’. The story has been shared in the Nursing Times in an article addressing key principles of nursing for people facing end-of-life or loss. Through being shared on social media it has demonstrated the power of palliative care, and other services have started similar activities – it has had a ripple effect beyond Eddie.
Following the second session participants were asked what they thought were the shared characteristics of the nurses that had shared their experiences. A word cloud was developed through mentimeter highlighting key characteristics. They were also asked to think about the nurses’ individual strengths, and then to ask the same questions of themselves and reflect on their own journeys.
The third session looked at priorities and how we can close the gap. Dr Emmanuel Luyirika, Executive Director of the African Palliative Care Association discussed some of the barriers to accessing medications, in particular controlled medicines including morphine, needed for palliative care. He reiterated some of the disparities in access, highlighting their use in palliative care and shared the experience in Uganda of ensuring access to morphine through local production and national distribution. He discussed the vital role of the nurse in accessibility to medicines, including nurse prescribing.
Increasing access to address inequities was the topic for Anu Savio from India, who discussed their work on increasing access to marginalised groups and overlooked communities, such as transgender communities. She explored how they developed essential palliative care services, highlighting some of the challenges in providing palliative care for such marginalised and stigmatised groups. It is like snakes and ladders – sometimes we encounter ladders which moved us forwards and upwards and other times we encounter snakes who push us back however she and her team are determined that ‘no one will be left behind’.
As seen earlier on in the day education and research are key in the development of palliative care. Prof Marie Friedel, from the University of Luxemburg, discussed the vital role of nursing research and education to health policy and shared her experience in Belgium of her education and research journey and how one step has led to another, how research is important as long as we see the patient as whole – and how we as nurses are in a unique position to do this. She encouraged us to listen to our inner voice, embrace uncertainty and vulnerability, to not go alone, to collaborate together, be patient and to celebrate every success however little.
Jess Pryce-Jones, a Global executive coach and author led the final session on intuition – why it matters, what it is and how it works. She talked about the value of our intuition, the innate gift or ‘inner little voice’ that we often use as nurses. Much of what we do will have started off with that inner voice – for example when we walk into a patient’s room and we know something is wrong. She stressed that we can learn to listen to our intuition, our gut feeling, at work as well as for our own wellbeing. She shared research which showed that the more senior you get the more you use your intuition, possibly because the more senior you are the more you feel it is ok to rely on your intuition.
The day closed with a call to join the GPNN and encouragement to step out and continue to be trailblazers and pathfinders – together we can make it happen!
Feedback from participants included:
“Such a motivational conference – great opportunity to learn about what is happening in the rest of the world when it comes to palliative care”
“I was amazed by the passion shown by everyone. You are all an inspiration.”
“Very inspiring sessions. enjoyed every bit of it. it is these stuff that keeps you moving.”
“Very informative sessions, well presented. We should have more of these. I love the sharing through experiences that we have had from different presenters from different regions. These have enlightened me, and I feel encouraged to advance palliative care services to a higher level in my region. As a nurse, this is a waking call to take any opportunity that comes my way.“
Please do join the Global Palliative Nursing Network if you are a nurse interested in palliative care for children or adults. You can join here.
We look forward to seeing you at our next Spotlight event on Tuesday 17th September.