The mission of the organisation is to try to influence the Norwegian health system and society in general to do more for seriously ill and dying people and their families.
Inspired by the work of Cicely Saunders, Astrid, Ellen and their colleagues are working to raise awareness of hospice in Norway where, according to Astrid: “Most people don’t know what ‘hospice’ is.”
She tells me: “In Norway we don’t have hospice as houses or institutions in the same way as they do in Denmark or in the United Kingdom, but we do have a home-based hospice at work in Oslo and they have been running for many years.
“The main message is that hospice is something that is missing in Norway in the understanding that it has in the United Kingdom, Denmark or the United States.”
Ellen adds: “Palliative care units in the nursing homes or the hospitals are very much about symptom control, so you might miss the link with the multidisciplinary team, the bereavement service, the spiritual counselling and the family concerns; they are missing the support for the families.”
This summer, Astrid will undertake a ‘Pilgrimage for Hospice’ during which she and her colleague, Lene Ertner, will walk an ancient pilgrim trail to raise awareness of hospice services in Norway. She says: “I think it’s a nice way to tell the story about hospice, because of the link to the pilgrim tradition and the metaphor for the journey at the end of life. Cicely Saunders pointed to this pilgrim tradition, you know, linking the words ‘hospititum’ and ‘hospice’. ‘Hospitium’ is Latin and it means a guest house for travellers, and hospice speaks of the bond between the host and the guest. Also, the English ‘hospitality,’ meaning ‘to be welcoming in’, is one of the first values in hospice.
We thought of making a pilgrimage to raise these simple values which are so important for this work. We wanted to make the connection between the need for better end of life care and walking this route.”
Astrid and Lene’s journey will take them six weeks as they walk from Oslo to Trondheim, following an old pilgrim path which has been almost forgotten until recently, but which has in the last ten years started to open up again for walkers.
On a personal level, Astrid has felt a calling to do a pilgrimage for a long time, and the need to raise awareness of the hospice movement in Norway provided this opportunity.
The ‘Hospice Pilgrims’ will walk within the “asphalt jungle” of Oslo, before trekking into the forests and mountains of the country. Astrid says: “For me I think that one way is to think of a pilgrimage as a religious experience, but it is also important to see it as a spiritual experience and as a healing experience, to reflect on life and death and dying. And we want to invite people to walk with us to do so, and maybe to share their thoughts with us afterwards.”
Astrid and Lene will stop throughout their route at certain places with a special history, and also to hold various local events.
The route will take them to St Olaf’s spring, a very important place for the cultural history of the area, and the site of a planned community hospice.
The pilgrimage will take Astrid and Lene over the mountains and into Trondheim, where they will be welcomed by a special service to be held at the Trondheim cathedral.
A part of the project is to collect these stories and compile them into a book, including an introduction explaining the pilgrim tradition and its link to the hospice movement.
The shift in thinking to realise that hospices can be supported by fundraising was a Eureka moment for Ellen and Astrid. They said: “We can’t wait for one hundred more years for something to happen. We have to make something happen.”
“For me, it’s very important that people understand how important hospice is and what it is, ” says Ellen. “There are so many sad stories about care in the last days of people’s lives so I think it really is an important thing to do.”
The next steps for the Hospiceforum Norway include working to get hospice care integrated into national health policy, and Astrid and Ellen are optimistic about this.