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Death and Dying

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Abstract

This chapter helps readers to understand what happens when someone reaches the end of life. It explains what good palliative care and end-of-life care looks like and how it can be achieved. It focuses on the following areas: involving the right services; managing pain and other symptoms; providing emotional, spiritual and social support; involving and supporting family and friends; advance care planning; shared decision-making; information and communication; death, and knowing what to expect; and bereavement support for all those left behind, including family, friends and staff. The issues are illustrated through the story of Victoria Willson, who had profound learning disabilities and died aged 43.

Keywords

Learning disabilities Death End-of-life care Palliative care Bereavement Advance care planning Shared decision-making Pain management 

References

  1. Heslop, P, Blair, P, Fleming, P, Hoghton, M, Marriott, A, Russ, L. (2013). Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD). Bristol: University of Bristol. http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf. Accessed 18 Dec 2019.
  2. St Oswald’s Hospice. Disability Distress Assessment Tool (DisDAT). (n.d.). https://www.stoswaldsuk.org/how-we-help/we-educate/education/resources/disability-distress-assessment-tool-disdat/disdat-tools/. Accessed 29 Aug 2019.
  3. Tuffrey-Wijne, I. (2013) How to break bad news to people with intellectual disabilities: a guide for carers and professionals. London: Jessica Kingsley Publishers.Google Scholar
  4. Tuffrey-Wijne I, Davidson J. Excellence in palliative and end-of-life care provision for people with intellectual disability. Int J Palliat Care Nurs. 2018;24(12):598–610.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2020

Authors and Affiliations

  1. 1.Faculty of Health, Social Care and EducationKingston and St. George’s University of LondonLondonUK

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