What is important to you? When do we sit down to have the important conversations about what we want towards the end of life with our loved ones? With the project “Conversations around the kitchen table”, Hospiceforum Norway wants to help ensure that conversations with our loved ones about what is important to us at the end
of life take a form that can make it easier to carry out.
Through public meetings in both physical and digital form, participants will be presented with a conversation tool that gives the individual the opportunity to reflect on what is important to them at the end of life, and to be able to convey this to their loved ones.
The chair of the board of Hospiceforum Norway, Henriette Høyskel, says:
We believe it will lead to us being better equipped to make good choices for ourselves, and those we are close to, in terms of treatment choices at the end of life. In addition, we believe that conversations about this privately will have a ripple effect so that there is more openness about death in society in general.
In the report (Meld.st. 24), titled “Palliative treatment and care: We are all going to die one day. But every other day we will live”, which was discussed in Parliament last year, “openness about death” is one of the six focus areas the government points to as necessary to ensure a better service offer. To achieve this, we have to start talking about death with our loved ones earlier than when we come into contact with the health service with a serious diagnosis. The project will help to achieve this goal.
The overall goal is more openness about death in society, in general. The aim of the project is to arrange public meetings where participants have the opportunity to reflect on their wishes for the last part of life. In this way, they can feel more prepared for, and experience that it is easier to talk about, their own and others deaths.
This can contribute to:
- Improved interactions between the health service, patient, and relatives leading to a greater degree of relief in the last phase of life
- A higher proportion of those who want to die at home, get their wish fulfilled
- More people starting to talk to their loved ones about what matters to them regarding the latter part of life
The project is based on the conversation tool from “The Conversation Project” from the US. Hospiceforum Norway is translating and customizing the conversation guide to Norwegian language and culture.
The public meetings will have a form we call “café format”, where participants will sit in small groups around tables. The photo exhibition “Last stage” by Gry Kristiansdatter Lilleng, will complete the experience and be used as a conversation opener in the meetings, together with an introduction to the topic. Afterwards, the participants will be given materials and there will be three main questions that the groups will discuss. The volunteers and project manager will visit the café tables during the conversations and will take input from the groups to the large group discussion at the end.
Laura White, project manager, says:
“Over the past year, we have suddenly been put in a situation that reminds us that we can all become vulnerable in the face of unexpected illness. We believe this experience with Covid-19 will also contribute to more people wanting to gain more knowledge about how they can convey their wishes to their loved ones.”
Now we have to talk.
Laura tells from her own experience with such conversations after her mother was diagnosed with pancreatic cancer two years ago:
“I am grateful that she had conveyed to me that she did not want treatment if she received a serious diagnosis, before she was actually in that situation. It would have been even harder for me to accept, had it been the first time I heard of it.
Because I was prepared for my mother’s wishes in advance, I was not shocked by her decision and it was easier to talk about the reality of that choice with the whole family after the diagnosis, even though it has never been easy to discuss.
For these conversations are not something you do once and for all, and the decisions you make can change, when illness and other life events occur. My mother chose to change her mind and agreed to some of the treatment she was offered.
When she was diagnosed just before Easter 2019, she was convinced she had 1-3 months to live and did not want to spend those months on chemo – she also had a long-standing belief that she did not want any life-extending procedures after the age of 70 (she was 72). However, she was extremely active and fit otherwise, and she ended up deciding to endure 6 months of heavy-duty chemo. The cancer seemed to be gone, but the tumor was still there in the middle of her pancreas, which led to her having a 10+ hour surgery that removed her entire pancreas, spleen, and gall bladder, as well as, 80% of her stomach in Dec. 2019. She is now coping with having Brittle Diabetes and watching a couple of small, slow-growing tumors in her lungs, but is thankful for having this extra time – she just turned 75!
I would rather not have this conversation at all, but that’s not the way life works. We are all going to die one day, and the only thing we can do to ease the fear around it is to accept the fact and to talk about it. It helps to start early, and to be open and honest about your wishes and thoughts. It also helps to talk to others.”
Laura believes that the only thing you can do to master difficult things is to practice them:
“I think it’s an advantage to start the conversation with strangers. It gives space for people to think about their wishes and the opportunity to say them out loud, in an open setting, without major consequences.”
Conversations Around the Kitchen Table held their first digital meeting on 17 June. They are planning physical meetings throughout this year and next, with the
possibility of live-streaming for those who prefer a digital option. The project will be present at both Olavsfestdagene in Trondheim and Arendalsuka this summer.
Follow the project on social media:
Hospiceforum Norway is awarded the Helping Stick Award (Hjelpestikkeprisen)!
The joy was through the roof when we received the message that we were nominated and then selected as the winner of the Helping Stick Award for 2021, for the project “Conversations around the Kitchen Table”.
“The board of The Helping Stick Fund (Hjelpestikkefondet) wishes to express its recognition for the work Hospiceforum Norge stands for, and the work with a still under-communicated need to strengthen this part of the national healthcare services,” Hjelpestikkefondet writes in the award letter.
“I had trouble talking for several hours afterwards, I just went around and smiling! This is just absolutely fantastic,” says board chair, Henriette Høyskel. “Now the project is fully funded.”
The project was granted support by The Dam Foundation (Stiftelsen Dam) earlier in the year, but it lacked full funding. “We still chose to start the project and had faith that we would be allocated funds through our active search for grants from other foundations and funds,” Henriette continues. “The surprise was therefore overwhelming when we were contacted with the good news that we had been nominated for the Helping Stick Award without us even knowing about it, and then again when we won. The prize amount of NOK 500,000 is exactly what we lacked in financing!”
On Thursday 20 May, the news was announced in a live broadcast on Hospiceforum Norway’s Facebook page. Nils Erlimo from the board of Hjelpesitkkefondet participated in the broadcast and said that the board immediately thought the nomination was interesting.
“The importance of being able to talk openly about death is something you may not understand until you yourself are in the middle of a demanding situation,” Nils says.
“I, myself, lost my mother to ALS a few years ago. She died at home with the family around her and in the period until she died, we had open and tough, but also nice conversations in the whole family. That’s why I, personally, think this project is so exciting. This is an important project that can help more people to be prepared to talk to each other, and also to convey their wishes and needs to the health service, in the event of a serious illness,” he concludes.
Full focus going forward: Project manager, Laura White, is well on her way to preparing for the first phase of the project. “Now it’s time for the first public meeting of the project. It will be held digitally on Thursday, 17 June. It is open to everyone (who speaks Norwegian) by registering at firstname.lastname@example.org,” she says. “We hope many people sign up, even though it might feel a bit odd to meet on screen, rather than in a physical meeting.”
Furthermore, Conversations Around the Kitchen Table will be available at events this summer, both in Trondheim at Olavsfestdagene and during Arendalsuka.
Hjelpestikkefondet:(The Helping Stick Fund)
In 1981, the Norwegian match production was moved to Sweden and Swedish Match AB. Ten years later, the “Helper Stick Award of the Year” was established by Swedish Match, as a continuation of the then almost 80-year-old institution Helping Stick (Hjelpestikke). The donation per matchbox was changed from 3 to 5 øre (Norwegian cents) in 2010, in addition to a donation of 10 øre for boxes of fire starters. The purpose of the Helping Stick Fund today is to promote the social and health living conditions of children, the elderly, and the disabled. Each year, since 1991, the Helping Stick Prize has gone to individuals, associations, or institutions that have made a significant contribution within the mentioned purpose; either through medical research, sporting events such as the Norway Cup, or the
Church’s City Mission work. At the end of 2011, the Helper Stick Fund had distributed more than 52 million Norwegian Crowns from the sale of matches.