Strathcarron Hospice have been helping people self manage in the last year of life so that they feel able to live well to the end.
What would help people to self manage in the last year of their life so that they feel able to live well to the end?
This was the question that led Strathcarron hospice to undertake some work to look at supporting anticipatory care planning for people in the last year of their life.
End of life is often a ‘taboo’ subject – not talked about within families, friendship groups and wider society.
They wanted to have these conversations with people living in the communities surrounding the hospice to understand what would help people to live well to the end of their life. They had come to realise that many people don’t recognise the full range of support available from a hospice as well as the palliative care options available, and that many people don’t know how to go about planning for the end of their life.
They started by speaking to 400 people living in 2 different locations in central Scotland, and asking them ‘what is important to you as you are approaching end of life?’ They heard that people would value having the time to speak to family and to have a plan in place.
They then went on to ask ‘what are the barriers to people making plans for the future?’ The barriers were varied, and included feelings of loneliness, feeling uncertain about how to make a plan, anxiety about the cost of planning for the future.
Through this initial engagement, they realised that the work needed to focus on supporting people to feel able to have these conversations with their family.
They set up a working group of people involved in the initial stage of work, and worked with them over a 4 month period to consider how people could be supported to maintain their self management in their last year of life.
They used emotional touchpoints which helped people to have a vocabulary to describe how they had been feeling
The working group helped to co-design an information stand to take out to communities to begin having these conversations with people. The working group understood that there would not be one way of providing this information to people, and that they would need to be sensitive to everyone’s own personal circumstances.
The stand has a range of information leaflets and resources that are available to people to help them have these conversations. All the leaflets and resources existed, but what is unique to the stand, is that it is staffed by people with personal experience who are there to offer support around having these conversations. They are able to speak from the heart about how difficult it is to have these conversations.
They have learned from the conversations that not everyone wants to involve a health professional in the process of developing a plan for the end of their life. But that, once people are able to develop a plan and discuss this with their family, they are able to concentrate on living.
Looking to the future, they are considering broadening the scope of their befrienders at Strathcarron Hospice to support people to make plans for the future. The people who have been involved in the working group now consider themselves to be ‘Planning for the Future’ ambassadors. This community connector model is helping to reach into the surrounding communities and is helping to change the perception of palliative and hospice care.
For more information, contact Susan High at Strathcarron Hospice (This link will take you away from our website)