‘People with Learning Disabilities Can Be Overprotected’: A New Film Talking About Death

“How do you feel talking about death?” 

The question, boldly posed direct to camera by Melissa Foster in an awareness-raising new film, reflects how dying is a taboo subject, despite being a universal human experience.

Foster’s words are even more hard-hitting because she has a learning disability. She is not the kind of person usually encouraged to discuss such sensitive subjects, let alone collaborate on public campaign like this and help front it.

Health and care professionals and family members often assume that people with learning disabilities will not understand the concept of death or find it too upsetting. Although well-intentioned, this approach is patronising – undermining people’s ability to share thoughts about grieving or even on their own end of life care.

This lack of communication influenced Foster’s decision to collaborate on the 15-minute film ‘We Need to Talk About Death’. In it, people with learning disabilities shift assumptions about who leads, and is involved in, conversations about death and bereavement. Their words also encourage professionals and relatives to begin discussions about the topics. 

Commissioned by NHS Somerset – and produced by community interest company biggerhouse film – it features Foster and five other people ranging in age from 25 to 63 who are supported by Taunton-based care provider My Day Care Services (Oliver Stuckey, Kai Lovell, Briony Lane, Eric Walsh and Loretta Brookes).

Foster told Byline Times that the death of a loved one makes you feel “overwhelmed and sad” so it is important to be honest and “open up”. Initially describing death as weird, invisible and strange, she said: “The more you talk about it, the more confident you are and the less sad you feel.”

The ethos of the film aligns with the aims of Dying Matters Awareness Week, starting today, 6 May. This theme, according to the charity Hospice UK, is the way we talk about dying, with a focus on language and conversations, “specifically between healthcare professionals and patients, their carers and families”.

The film – available in BSL and audio described versions – also reflects some issues highlighted in the NHS’ annual ‘Learning from Lives and Deaths’ programme, which reviews the deaths of autistic or learning disabled people.

A shocking aspect of these annual reviews is how they outline healthcare inequalities that lead to early death from treatable problems. They also show the need to improve palliative, end of life, and bereavement care for this part of our population – issues that emerge in the film. 

This last issue resonates personally.

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A close relative recently moved to end of life care and my family and I are supporting my sister Raana, who has a learning disability, to navigate the experience. 

Luckily, my sister’s support workers advocate an open and honest (but sensitive and respectful) approach. We talk to Raana about seeing someone at this next – last – stage of life. Her artwork is up in the nursing home room, for example, so she feels involved and visits whenever she wants.

The concept of whether or not you see someone at the end of life is included in the film, as well as discussions about the language around death, why people find this difficult to articulate, and memories of loved ones.

As well as talking heads and interviews filmed beside a lake, there is behind the scenes-style footage showing how discussions between those featured contribute to the script. These discussion explore words about death and dying and share stories of bereavement; the rapport between filmmakers and those on camera is clear.

Foster, who lives in Taunton with Shared Lives carers (a scheme that matches a person needing care with an approved carer), said she got involved to help build her confidence and to help people to understand death: “I liked the bit when I was expressing myself using different types of words about dying.” 

In the film, she describes euphemisms like “going to a better place” or “passing on” as “a bit funny and some don’t make any sense”.

Foster, now 32, was in her 20s when her grandmother died. She said with pride about the film: “I think she’s looking down on me thinking ‘what a wonderful granddaughter you are’.”

“When you’re a teenager you don’t think of it [dying and bereavement] so much but as you get older, you never know when death will touch you on the shoulder, so the more you understand it, the better,” she added.

Stephen Clarke, co-producer at community interest company biggerhouse film, said the project took a year to make: “Being in nature by the lake was a key part of the film. Before we started filming, we did slow exercises [with everyone] including getting them to close their eyes and tell us what they could hear and open their eyes and telling us what they could see as a segue into the filming.”

Despite more than 20 years of experience of making films with adults who have learning disabilities, Clarke said that this one is among the most challenging because of the delicate topic: “We were very proud that the film doesn’t hold back. Our hope is that it will help people bring death and dying into everyday conversations and help them have open conversations about what is often seen as a taboo subject.”

Rachel Donne-Davis, a health psychologist and a member of the local Learning from Lives and Deaths team which commissioned the film, said she has heard of cases in care homes or supported living places where someone is taken into hospital, dies, their room is left empty yet the death remains virtually unacknowledged among the learning disabled housemate or neighbours.

“It’s incredibly difficult for people to grieve that person; it’s either not talked about, or talked about using these [euphemistic] words like ‘they have passed on’,” she said. “What does that actually mean? Does that happen to everyone who goes into hospital? Without that clarity it’s hard to process…

“People with learning disabilities can be overprotected. It’s well-intentioned but proactive things like end of life care planning just don’t take place. Instead it is done in a reactive way – there aren’t so much opportunities to talk about wants and needs – and we wanted to commission something to address that.”

The duty of care towards those involved included Donne-Davis holding two “de-briefing sessions” and relaxation exercises with those involved in the film. This enabled reflections on the creative process and stories shared, and discussions of any coping strategies needed after filming. Donne-Davis offered additional, external one-to-one support, but this was not needed.

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A film like this alone will not do much to dent entrenched, structural healthcare inequalities – inequalities recently laid bare in Byline Times’ special report – such as the denial of human rights and basic care that means people die prematurely and often avoidably.

But it is significant as a project that involves people with learning disabilities addressing the issues directly and shaping the narrative.

As such, it is an important addition to a small but growing number of resources – local and national – to support people with learning disabilities navigate the subject of death and dying. 

Nationally, these include the Palliative Care for People with Learning Disabilities Network; the Victoria and Stuart Project (involving people in end-of-life care planning); and Beyond Words, which publishes picture stories for people with communication issues.    

For Melissa Foster, the film suggests the kind of support that would have helped when her grandmother died. As she says in the film: “Let’s start talking. Let’s start asking questions.”

‘We Need to Talk About Death’ is free to view on the NHS Somerset website and is now touring a selection of community centres in the county. 

Saba Salman is the editor of ‘Made Possible: Stories of Success by People with Learning Disabilities – In their Own Words’. She is the chair of the charity Sibs, which supports the siblings of disabled children and adults