A matter of life and death: knowledge about the body and concept of death

What is it about?

Previous research suggests that adults with intellectual disabilities have a limited or patchy understanding of the basic biological components of death. However, the relationship between understanding of how the body works and conceptualisations of death remains unexplored in this population. 30 adults with intellectual disabilities were interviewed to assess their knowledge of human body function and their understanding of the concept of death. Using pictures, participants were asked if they recognised certain organs, and were asked to explain the function of various body parts. Individuals were also asked what would happen if certain body parts were missing or failed. Those individuals who referred to maintaining 'life' or not dying as the goal of body function were we categorised as 'Life theorisers'. In addition, participants were asked about the causes of death, whether all things die and the status of the body after death. The results support previous studies suggesting that understanding of death in adults with ID varies from partial to full comprehension and is associated with level of ID. Also, death comprehension was positively correlated with total body interview scores and 'Life theorisers' (who understood that body parts maintain life) were also more sophisticated in their understanding of death. The study highlights the relationship between knowledge about the goal of human body functioning and death comprehension in adults with ID.

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Why is it important?

Gaining an increased awareness of how people with intellectual disabilities understand death is necessary in supporting lifelong learning, post-bereavement support and in planning end-of-life care with this population. Helping men and women to focus on biological functioning and learn about the body offers a useful gateway to introducing the topic of death and may have significance for the acquisition of a greater understanding of death and dying in adults with ID. Also, the adoption of such an approach may better help them understand illness and offer another avenue of information when supporting end-of-life planning.