Research shows that people with intellectual disability do at least have partial understanding of death and almost unanimously report knowing people who have died. Yet family, professionals and caregivers typically avoid talking about the end of life with people with intellectual disability. This avoidance is motivated by several factors, such as difficulties with understanding, a perceived need for protection, fear of doing psychological harm, and conversation partner lack of skill or discomfort with discussing the topic. Avoidance can extend to not telling the individual that a loved one is going to or has died, or that they themselves have a terminal condition and will die. Not being told of a loved one’s death has unavoidable negative consequences, including being excluded from saying goodbye, preparing emotionally for the loss, and engaging in the rituals of collective mourning. There is avoidable confusion and distress, and likely increased risk for complicated grief. Not being told of one’s own death means the individual is excluded from advanced care planning, settling unfinished business, and saying goodbyes. There is growing evidence that taking about the end of life can help. Research reveals that people with intellectual disability want to talk about the end of life. The evidence shows they can participate in conversations without significant emotional discomfort or psychological harm. Clear data are available on the benefits of learning about the end of life. Outcomes of a recent educational intervention included reduced intensity of complicated grief, improved understanding about the biological concepts of death, and enabled healthier attitudes to death, grief, and talking about dying and death. The chapter ends with discussion of three key considerations when talking about the end of life. A select list of available resources, designed specifically for people with intellectual disability, is provided.

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Talking About the End of Life with People with Intellectual Disability

  • Michele Y. Wiese,
  • Roger J. Stancliffe

摘要

Research shows that people with intellectual disability do at least have partial understanding of death and almost unanimously report knowing people who have died. Yet family, professionals and caregivers typically avoid talking about the end of life with people with intellectual disability. This avoidance is motivated by several factors, such as difficulties with understanding, a perceived need for protection, fear of doing psychological harm, and conversation partner lack of skill or discomfort with discussing the topic. Avoidance can extend to not telling the individual that a loved one is going to or has died, or that they themselves have a terminal condition and will die. Not being told of a loved one’s death has unavoidable negative consequences, including being excluded from saying goodbye, preparing emotionally for the loss, and engaging in the rituals of collective mourning. There is avoidable confusion and distress, and likely increased risk for complicated grief. Not being told of one’s own death means the individual is excluded from advanced care planning, settling unfinished business, and saying goodbyes. There is growing evidence that taking about the end of life can help. Research reveals that people with intellectual disability want to talk about the end of life. The evidence shows they can participate in conversations without significant emotional discomfort or psychological harm. Clear data are available on the benefits of learning about the end of life. Outcomes of a recent educational intervention included reduced intensity of complicated grief, improved understanding about the biological concepts of death, and enabled healthier attitudes to death, grief, and talking about dying and death. The chapter ends with discussion of three key considerations when talking about the end of life. A select list of available resources, designed specifically for people with intellectual disability, is provided.