Death may be in the news every day, but most of us probably don't want to think about our own deaths, and perhaps are even more reluctant to talk to our family members about the end of our lives or theirs. In the past, people with intellectual disability have been somewhat shielded from the concept of death by people caring for them, which has often left them poorly prepared for their end of their lives.
Data from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) does seem to show that things are changing. Nonetheless, family members do struggle with starting a conversation around the end of life, and wondering when to initiate such a conversation. However, people with intellectual disability have expressed an interest in receiving concrete, unambiguous information about death and dying.
At an interesting seminar for palliative care week, Dr Éilis Burke from the Trinity Centre of Ageing and Intellectual Disability talked about accessible materials she has developed with her colleagues to help people with intellectual disability build up a picture of what they want for the end of their lives. These materials can help the carer/family member to shift the perspective from themselves to the person with intellectual disability. The documents Dr Burke have prepared are living documents that will be revisited over time.
Small conversations can help to build up sense of what people want for the end of their life. As with the general population, the end of life may come sooner than expected, so having some conversations in advance can be helpful. In having these conversations, it is important to build knowledge of the person with intellectual disability, and take a collaborative approach in delivering information at a level the individual can take on board.
Transition points in life can be a good point for beginning conversations around death and dying (e.g. shortly after a serious diagnosis) Or it could just be when someone raises the issue themselves - it could be prompted by something as simple as a storyline on a soap opera. Ideally, talking about the end of life is not a one-off conversation, but an ongoing discourse over time. Help the person think about what brings comfort, happiness or dignity to them, get a conversation going with family and friends as well, write it down and review.
Liz Hunt (RNID & Area manager, Brothers of Charity Services) gave an account of the use of this tool. The services take a person-centred approach with a focus on rights. A key theme of this is empowerment (e.g. starting from the assumption that people have the capacity to make decisions for themselves) and engagement (e.g. using accessible materials to assist with decision-making). Staff at the services had generally known the people they were working with for a long time, so close relationships had been developed. A multidisciplinary team collaborated in the process, and worked with the person's family from the beginning. Liz Hunt gave the example of someone's favourite CD being carried to the altar, and angels being part of her final days, as she had talked about angels frequently.
I imagine for a lot of people this is like starting one's homework or having a talk about the birds and the bees with one's kids - starting is the hard part, but once you have a framework in this place this will help to take the first steps.
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