UHI Inverness and Highland Hospice project aims to make end-of-life discussion easier
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A partnership project between UHI Inverness and Highland Hospice aims to use drama to help with engagement over difficult end-of-life conversations.
The Caring Conversations initiative would support people in Inverness living with advanced illness, families, clinicians and health and social care workers to engage in positive conversations around end of life.
A participatory stakeholder group would design research into lived experience of conversations relating to palliative and end of life care to inform short plays testing alternative approaches to communication around the subject with a “tool kit” to accompany the plays creating a learning resource for health and social care stakeholders.
The college and hospice team behind the scheme has applied to Highland Council’s city of Inverness area committee for a grant of £23,145 from the Inverness Common Good Fund to support development work, though it is being recommended the application be refused on the grounds that the project could be “more appropriately” funded from UHI’s own core funding.
In supporting information submitted as part of the grant application those behind the scheme said: “Future care planning and conversations around death and dying remain difficult: the end stage of life is medicalised and removed from family and friends who are less involved than previous generations.
“Consequently, the wishes of someone at end-of-life may not be discussed until late on.
“This can cause personal distress and mean that adequate financial/legal arrangements are not in place, resulting in an end-of-life and bereavement entailing unnecessary emotional and financial strains.
“Personal, societal, and economic impacts of death and dying remain substantial, with financial inequity at end of life emerging as a critical contemporary issue.
“Over 80 per cent of families face significant emotional and financial challenges with the total cost of living with a terminal illness estimated to be between £12,000-£16,000 per year.
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“Socio-economically disadvantaged groups are disproportionately impacted, with up to 98 per cent of household income used to cover costs of dying.
“Adverse impacts extend into bereavement with many families experiencing a debt legacy.”
They added: “Locally, within Highland one in four working age people (aged 20–64) and one in nine pensioners (aged 65+) experience poverty in the last year of their life.
“However, it is recognised that health and social care professionals often shy away from discussing poverty (Richards 2022).
“Caring Conversations will use a co-creation approach facilitating discussions and planning for end-of-life care to improve personal, economic and societal perspectives on death and dying.
“This will be achieved through researching, writing and performing play scripts rehearsing conversations and a toolkit; producing a resource supporting effective communication around death and dying including financial impacts, for distribution to stakeholders.”
The aim would be to hold live performances at Highland Hospice and the WASPS Creative Academy in Inverness, with audience feedback noted and a finalised Caring Conversations resource distributed to stakeholders in NHS Highland, Highland Hospice and UHI as well as nationally via Hospice UK, and internationally to other universities.
A final report plus the Caring Conversation resource would be shared with The Scottish Partnership for Palliative Care, Marie Curie and the Scottish and UK governments “to help inform policy making and funding strategies relating to end-of-life”.
The city of Inverness area committee is due to decide on the application on Monday.
UHI Inverness was invited to respond to the recommendation to refuse the funding application but a spokesperson said they would prefer to wait until councillors had made their decision before making any comment.
