Naomi is happy she didn’t meet her initial goal – to become a doctor. It meant she became a nurse, a profession she has enjoyed every moment of during a very varied 25 year career.
Time spent on an oncology ward during her training in Northern Ireland inspired Naomi to want to work in palliative care, but a lack of experience meant she was rejected by Belfast Hospice and so went to work at the Royal Orthopaedic Hospital in Stanmore, North-West London. The experience of working with bone cancer patients further cemented her wish to work in palliative care.
So far, so traditional. Six months training at St Joseph’s Hospice in Liverpool, set Naomi up for a placement in Guatemala and Honduras. Working with an English colleague they prioritised children and young adults dying of HIV and aids, their work going beyond what we would traditionally understand as palliative care. Accompanying end of life support, roles included burying and carrying out rituals to ensure that these special human beings understood Cicely Saunders teachings: that they were important until their very last breath, compassion being the tool of excellence.
After a year, Naomi returned to Europe – to the Basque region of northern Spain, where she has remained ever since and has over the years worked in the community, residential, hospital and hospice settings.
Naomi has been building palliative care services from the ground up, empowering patients and their families to demand the care they are entitled to and to help co-create that provision. Her first project was ‘Saiatu‘; a programme of specially trained in-home social assistance and companionship, providing support to people in need of palliative care and their families.
Naomi has though, in her current role, found her true vocation working in the Compassionate Communities Framework, building community engagement in end of life care. Her role is to bridge the gap so local people understand the services they should expect and how to access them.
“In my team we do education, awareness, training, care and research,” Naomi tells us. “Importantly, we look for where the gaps are and how we can bridge those gaps. We then begin to imagine alongside the whole ecosystem what those services might look like, and begin to create those services together in the hope that the local policy makers see what we’re doing and start doing it. The main issue is that the work gets done, it does not matter who does is.
The Compassionate Communities Model is amazing, and I think it can have a tremendous impact for both families and health care professionals. I really believe nurses can be a huge part of that.”
She is also member of ‘Babespean’ an association that has been created with three palliative care doctors and a social worker. Babespean was born in May 2020 with the intention of improving the care of people with advanced disease who need palliative care in their own home, or in an open hospice-style care centre, to help their relatives during the process and after in mourning, as well as promoting training and research in palliative care.
What drives you to make a difference?
“I am really passionate about death and dying – it’s sacred. Maternity is all sorted. But there’s so much to be done in our field because people’s dignity is being taken away from them when they are at the end of their life. From what I’ve seen, the problem is the same everywhere: the infrastructure is not in place to allow people to be discharged from hospital. There has to be another way.
I really hope that when I die, I have a beautiful experience and my family have a beautiful experience. I know that can happen because I’ve seen it happen. So when I hear about, or see terrible processes, I say this is not ok and try and do something about it.”
Naomi believes wholeheartedly in building resilience, both in her team and in the community in which she works, knowing that if she succeeds in embedding it in both, then she will have achieved her twin goals of making herself dispensable and establishing quality care.
“I really believe in the team and we all have a role to play. I ask everyone involved in the programme to be part of the creation and construction of the team and my hope is then it will reach a stage when I can leave them and everything will be in place.
When I go into a home, I tell them their rights and what they are entitled to, so they can demand or I can demand on their behalf. What we’re seeing over the world is that if the community is empowered, then families better understand the processes and are better prepared. I’d never done these kind of awareness programmes before, but it was wonderful when it came to the last days because families knew what to expect and what to do, and the medical professionals felt better because everyone knew what was happening. We have to empower the community, and nurses have a huge role to play in that.”
What can the palliative care approach offer the wider profession?
Naomi understands the pressures and constraints placed on the wider nursing profession, but believes that if they looked to palliative care they could learn a lot, and this in turn would benefit all patients and their families, not just those at the end of life.
“We have everything to offer nurses in other disciplines. If all nurses and all healthcare professionals spent time in palliative care, and learnt how to stand in front of families and people facing death, and they learnt how to accompany them – then they would be able to work well in any other setting. While the technical side of nursing is important, the real art is being there in all circumstances. People are afraid. There’s a lack of empathy and kindness because there’s so much to do. If all nurses and health care professionals had to do some work experience in palliative care or complete some palliative care training, it would change their vision.
I believe nurses have a massive role to play in communities as we are the one professional there 24/7 and we are a bit of everything. To be a good nurse you have to be technically excellent, but the art of being able to connect and be aware of everything around you means we are in an amazing position to be the leaders of change in the community.”
How can nurses strengthen their leadership and impact?
On a daily patient-based level, Naomi maintains that nurses can have the most positive impact by just being there, being available for those patients and their families.
“I always say that even when they think they’re doing enough, it’s never good enough and I always say that no matter where you go, you need to strive for excellence. When you are caring for someone at the end of life you are entering a sacred space, so I always say pull your stomach in, stand tall and be aware that you are only a butterfly, there in the background and they know you’re there if they need you, understanding it is their journey. ”
On a wider scale, Naomi is confident that empowering patients and their families to demand the care they are entitled to is key to ensuring a better end of life. The proof is there: in her part of northern Spain there is a long standing movement on putting palliative care on the political agenda, and in the past few years there has been a move to provide the care Naomi and others like her have been advocating for, but there is a long way to go. She has just finished organising, along with 11 other women, the first ever festival dedicated to death and dying in Spain “Dando Vida A La Muerte”
“I think palliative care is the best example of integrated care, connecting healthcare and communities, and as palliative care nurses we have a real opportunity to develop this connection.”
For palliative care to reach its potential though, Naomi wants to see it afforded the status and recognition it merits.
“Some regard it as a second-class strand of nursing. We have to get it into universities and into the education system for people to appreciate its value and how wonderful it really is.”