The Derry woman bringing ‘life to death’ in the Basque Country

Naomi Hasson has been living in the Basque Country in Northern Spain since 1997, and said death and grief is the ‘taboo of the taboos’ there.

A palliative care nurse, Naomi is a huge advocate for the Compassionate Communities model, which brings different aspects of a community together to provide support to people and their families in need of palliative care.

Naomi first began her career by training in Belfast’s City Hospital before going to London, where she worked in Paediatric Orthopaedics and in St Christopher’s Hospice. She told the Journal how she had worked in Oncology wards since she was a student. She also had a cousin who passed away from Leukaemia and saw the important and vital work of Palliative Care nurses. “I always knew it was something I wanted to do,” she said.

After working in St Joseph’s Hospice in Liverpool, Naomi went on to work in a hospice in Guatemala and Honduras. While there, she cared for children and young adults who were dying from HIV and AIDS. She told how, at the time, HIV and AIDS was still taboo and even more so in Guatemala and Honduras. Her experience there, she added, showed her ‘death as it really was.’

“We did everything. We were the nurses and the undertakers. While it was really hard, it was also wonderful to be there and help.”

Naomi and her family then travelled to the Basque Country, where she hoped to open a hospice.

Unlike Ireland and the UK, hospice care is not common in Spain.

“There isn’t a culture of hospice care like we would have had when we were growing up. The Foyle Hospice is very much part of our lives and I was very much inspired by the late Dr Tom McGinley. He actually met with me before I came out here and gave me advice.

“That culture of a hospice doesn’t exist here, although it is changing. The only hospice as we understand it is in the South of Spain, opened by a wonderful British woman called Joan Hunt and supported by the ex-pat community. Also, the idea that we would fundraise for this sort of thing was seen as mad.”

Most palliative care is undertaken in the home or hospital and the approach is not even a specialism or subject for trainee doctors and nurses. Speaking about death and grief is also the ‘taboo of the taboos’ and people who pass away are normally buried within 24 hours.

“There is no celebration of the life of that person and it’s very different to what it is in Ireland. When we explain how we do it in Ireland, they can’t imagine it.”

Within this culture, Naomi’s work and her dedication that those entitled to palliative care will receive it with the support of the community, is even more remarkable.

After undertaking voluntary work, she created a palliative home care project with a strong focus on the Compassionate Communities approach for end of life care.

“We decided to listen to the community and did a research programme. We listened to anyone who would speak to us, whether that was grave diggers, pharmacists, carers, people who were unwell, doctors, nurses etc. We wanted to try and build a narrative around death and dying in the community of around 120,000 people in the town I’m working in. Here, over a third of people are over 65 and the Basque Country has one of the highest percentage of aging populations in the world. We started asking people how they dealt with death and dying, what they felt was missing and what they expected and we started building initiatives around this.”

The initiatives include theatre productions, WhatsApp groups for carers, events in the town hall that discuss the myths and truths of palliative care, as well as death cafes, ‘which are very famous around the world,but which you don’t see at home.

“You all sit around have a wee cup of tea and cake and talk about death and life. There are now death cafes all over Spain. It’s so taboo here so we looked at what people were asking and realised they wanted help and training. Very often, people looking after those who are unwell are immigrants, a lot of them illegal, so we started giving them professional development training. We also started training up all the volunteers in the area. Rather than creating our own, we connected with all those already there and trained them up in end of life care and grief.”

They also created self help groups and mapped the area to see what services existed. They then interconnected these services and supports, to ensure all could work together for the benefit of the community.

“The compassionate communities ‘fathers’ say that care and being there for people is everyone’s business. It’s not just doctors, nurses and social workers. Little by little we’ve developed many things under our listening platform and the compassionate community approach. We began to develop different answers to different problems and represent what people have told us.

She added that they try to connect to as many people as possible ‘to talk about death and dying and grief and let people understand that it’s going to happen to all of us, so let’s be prepared. Let’s be aware and be there to help our neighbours and friends.”

Naomi told how death, dying and grief are ‘in some ways also a public health problem’,

“Who prepares us for dying and loss? No-one talks about it here in Spain. No-one talks about it schools. Suicide is a big problem - no-one talks about it.”

Naomi is keen to point out that palliative care is not just about looking after someone in their final days. It is about making sure a person with a life limiting illness and their families have a good quality of life and can access the support and services they need.

“This is not the last few days of your life. We always say to people - we cannot cure you, but we can care for you. There is evidence to say that the sooner palliative care specialists become part of a patient’s journey the better quality of life they’ll have and they can actually live longer.”

Ensuring that this message is highlighted in Spain, where hospice and palliative care is in its infancy, is important to Naomi.

“I’ve seen so many people sent home from hospital and the staff are frightened, because they don’t know how that person is going to cope at home. The family network here is not what it used to be. Compassionate communities is a really brilliant answer to an absolute social necessity and it’s like bringing life to death. When I die, I don’t want people to see me as my illness. I want them to see me, my biography and narrative, who I am. And who knows that better than those who live around me?

Naomi and her colleagues recently launched an initiative called ‘Activate Your Community’ so that neighbours can provide support to those in need. The infrastructure of the Basque Country mean many people live in blocks of flats, which is actually ‘beneficial’ for the initiative as everyone lives so close together.

Naomi’s role at the moment is as a ‘community connector’ where she helps those in need of palliative care to access what they need.

“ I’m able to go to someone and say: ‘Don’t worry, we’ll get this sorted’ and within 24 hour we can put into place so many resources to allow the family to take a deep breath and let them concentrate on what they need to. The model makes visible the invisible and let’s us talk about things we don’t want to talk about.”

One of the things Naomi and those involved in the model are also starting to talk about is suicide.

Naomi would like to introduce the ‘amazing’ work of Foyle Search and Rescue and their river patrol to her community.

Naomi said supporting others in our community is something we should all aim to achieve.

“We need to be literate in being there for people. Anyone of us could need that support at any time.”