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End-of-life issues and support needs of people with severe and profound disability.
Voss, H., Watson, J., Bloomer, M.J. End-of-life issues and support needs of people with severe and profound disability. In: Stancliffe, R.J., Wiese, M.Y., McCallion, P., McCarron, M. (eds) End of Life and People with Intellectual and Developmental Disability. Palgrave Macmillan, Cham. This chapter is available from the publisher.
Throughout life people with profound intellectual and multiple disability (PIMD) are likely to experience multiple complex and life-threatening conditions, creating a need for decision-making about end-of-life care and support. Due to communication challenges, people with PIMD are likely to depend on others to articulate their will and preferences. To date, research focussed on end-of-life care and support needs for people with intellectual and developmental disability has largely centred on the needs of people with milder disability.
This chapter focusses instead on people with PIMD, describing the multiple palliative care challenges, including acknowledging, interpreting and acting on expressions of will and preference. The chapter highlights the importance of acknowledging and responding to non-symbolic communication and provides case examples of how the person with PIMD can be placed at the centre of decision-making. The chapter includes reflection questions and resources.
This chapter focusses instead on people with PIMD, describing the multiple palliative care challenges, including acknowledging, interpreting and acting on expressions of will and preference. The chapter highlights the importance of acknowledging and responding to non-symbolic communication and provides case examples of how the person with PIMD can be placed at the centre of decision-making. The chapter includes reflection questions and resources.
Throughout life people with profound intellectual and multiple disability (PIMD) are likely to experience multiple complex and life-threatening conditions, creating a need for decision-making about end-of-life care and support. Due to communication challenges, people with PIMD are likely to depend on others to articulate their will and preferences. To date, research focussed on end-of-life care and support needs for people with intellectual and developmental disability has largely centred on the needs of people with milder disability.
This chapter focusses instead on people with PIMD, describing the multiple palliative care challenges, including acknowledging, interpreting and acting on expressions of will and preference. The chapter highlights the importance of acknowledging and responding to non-symbolic communication and provides case examples of how the person with PIMD can be placed at the centre of decision-making. The chapter includes reflection questions and resources.
This chapter focusses instead on people with PIMD, describing the multiple palliative care challenges, including acknowledging, interpreting and acting on expressions of will and preference. The chapter highlights the importance of acknowledging and responding to non-symbolic communication and provides case examples of how the person with PIMD can be placed at the centre of decision-making. The chapter includes reflection questions and resources.