Skip to main content
SpringerLink
Log in

Experience of End-of-Life Issues by People with Intellectual Disability

  • Chapter
  • First Online:
End of Life and People with Intellectual and Developmental Disability

Abstract

This chapter examines contemporary research about end of life with a particular emphasis on people with intellectual disabilities and their experiences, rather than the views of others such as caregivers and clinicians. Topics include their experiences when family or friends die, and engagement with their own dying and death. The extent to which people with intellectual disability actively participate in research about the end of life is critiqued. Available measurement instruments are examined, concluding with the need to move beyond interpreting their views via the proxy report of others. The chapter concludes with a reflection scenario and questions, challenging the reader to consider how end-of-life experiences of people with intellectual and developmental disability could and should be better approached.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 129.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 169.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 169.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Adam, E., Sleeman, K. E., Brearley, S., Hunt, K., & Tuffrey-Wijne, I. (2020). The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. Palliative Medicine, 34(8), 1006–1018. https://doi.org/10.1177/0269216320932774

    Article  PubMed  Google Scholar 

  • Ahlers, K. P., Gabrielsen, T. P., Lewis, D., Brady, A. M., & Litchford, A. (2017). Supporting individuals with autism spectrum disorder in understanding and coping with complex social emotional issues. School Psychology International, 38(6), 586–607. https://doi.org/10.1177/0143034317719942

    Article  Google Scholar 

  • Bekkema, N., de Veer, A. J., Hertogh, C. M., & Francke, A. L. (2016). Perspectives of people with mild intellectual disabilities on care relationships at the end of life: A group interview study. Palliative Medicine, 30(7), 625–633. https://doi.org/10.1177/0269216316640421

    Article  PubMed  Google Scholar 

  • Cithambaram, K., Duffy, M., & Courtney, E. (2019). End-of-life care research on people with intellectual disabilities: Challenges for proactive inclusion in an Irish context. British Journal of Learning Disabilities, 47, 70–76. https://doi.org/10.1111/bld.12260

    Article  Google Scholar 

  • Dark, L., Balandin, S., & Clemson, L. (2011). Communicating about loss: Experiences of older Australian adults with cerebral palsy and complex communication needs. Communication Disorders Quarterly, 32(3), 176–189. https://doi.org/10.1177/1525740109353936

    Article  Google Scholar 

  • Dark, L. J., Clemson, L., & Balandin, S. (2016). Communication changes experienced by adults with cerebral palsy as they age. International Journal of Speech-Language Pathology, 18(6), 521–532. https://doi.org/10.3109/17549507.2016.1143976

    Article  PubMed  Google Scholar 

  • Dodd, P., Doherty, A., & Guerin, S. (2016). A systematic review of suicidality in people with intellectual disabilities. Harvard Review of Psychiatry, 24(3), 202–213. https://doi.org/10.1097/HRP.0000000000000095

    Article  PubMed  Google Scholar 

  • Dodd, P., Dowling, S., & Hollins, S. (2005). A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research, 49, 537–543. https://doi.org/10.1111/j.1365-2788.2005.00702.x

    Article  PubMed  Google Scholar 

  • Dodd, P., McEvoy, J., Lockhart, K., Burke, T., O’Keeffe, L., & Guerin, S. (2021). An exploratory study of self-reported complicated grief symptoms in parentally bereaved adults with intellectual disability. Journal of Intellectual Disability Research, 65, 297–305. https://doi.org/10.1111/jir.12812

    Article  PubMed  Google Scholar 

  • Dowling, S., Hubert, J., White, S., & Hollins, S. (2006). Bereaved adults with intellectual disabilities: A combined randomized controlled trial and qualitative study of two community-based interventions. Journal of Intellectual Disability Research, 50(4), 277–287. https://doi.org/10.1111/j.1365-2788.2005.00759.x

    Article  PubMed  Google Scholar 

  • Dunkley, S., & Sales, R. (2014). The challenges of providing palliative care for people with intellectual disabilities: A literature review. International Journal of Palliative Nursing, 20(6), 279–284. https://doi.org/10.12968/ijpn.2014.20.6.279

  • Fahey-McCarthy, E., McCarron, M., Connaire, K., & McCallion, P. (2009). Developing an education intervention for staff supporting persons with intellectual disability and advanced dementia. Journal of Policy and Practice in Intellectual Disabilities, 6(4), 267–275. https://doi.org/10.1111/j.1741-1130.2009.00231.x

  • Flynn, S., Hulbert‐Williams, N. J., Hulbert‐Williams, L., & Bramwell, R. (2016). “You don't know what's wrong with you”: An exploration of cancer‐related experiences in people with an intellectual disability. Psycho‐Oncology, 25(10), 1198–1205. https://doi.org/10.1002/pon.4211

  • Forrester-Jones R. (2013). The road barely taken: Funerals, and people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26, 243–256. https://doi.org/10.1111/jar.12022

  • Forrester-Jones, R., & Broadhurst, S. (2007). Autism and loss. Jessica Kingsley Publishers.

    Google Scholar 

  • Forte, M., Jahoda, A., & Dagnan, D. (2011). An anxious time? Exploring the nature of worries experienced by young people with a mild to moderate intellectual disability as they make the transition to adulthood. British Journal of Clinical Psychology, 50(4), 398–411. https://doi.org/10.1111/j.2044-8260.2010.02002.x

    Article  PubMed  Google Scholar 

  • Guerin, S., Dodd, P., Tyrell, J., McEvoy, J., Buckley, S., & Hillery, J. (2009). An initial assessment of the psychometric properties of the complicated grief questionnaire for people with intellectual disabilities (CGQ-intellectual disability). Research in Developmental Disabilities, 30(6), 1258–1267. https://doi.org/10.1016/j.ridd.2009.05.002

    Article  PubMed  Google Scholar 

  • Hahn, J. E., & Cadogan, M. P. (2011). Development and evaluation of a staff training program on palliative care for persons with intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 8(1), 42–52. https://doi.org/10.1111/j.1741-1130.2011.00288.x

    Article  Google Scholar 

  • Hollins, S., & Esterhuyzen, A. (1997). Bereavement and grief in adults with learning disabilities. British Journal of Psychiatry, 170, 497–502. https://doi.org/10.1192/bjp.170.6.497

    Article  Google Scholar 

  • Hunt, K., Richardson, A., Darlington, A., & Addington-Hall, J. (2019). Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England. BMJ Supportive & Palliative Care, 9, e5. https://doi.org/10.1136/bmjspcare-2016-001288

  • Kirkendall, A., Linton, K., & Farris, S. (2017). Intellectual disabilities and decision making at end of life: A literature review. Journal of Applied Research in Intellectual Disabilities, 30(6), 982–994. https://doi.org/10.1111/jar.12270

    Article  PubMed  Google Scholar 

  • Landes, S. D., Stevens, J. D., & Turk, M. A. (2019). Heterogeneity in age at death for adults with developmental disability. Journal of Intellectual Disability Research, 63(12), 1482–1487. https://doi.org/10.1111/jir.12672

    Article  PubMed  Google Scholar 

  • Lester, D., & Abdel-Khalek, A. (2003). The Collett-Lester fear of death scale: A correction. Death Studies, 27(1), 81–85. https://doi.org/10.1080/07481180302873

  • Lipsky, D. (2013). How people with autism grieve and how to help. Jessica Kingsley Publishers.

    Google Scholar 

  • Lord, A. J., Field, S., & Smith, I. C. (2017). The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis. Journal of Applied Research in Intellectual Disabilities, 30(6), 1007–1021. https://doi.org/10.1111/jar.12376

    Article  PubMed  Google Scholar 

  • McCallion, P., McCarron, M., Fahey-McCarthy, E., & Connaire, K. (2012). Meeting the end of life needs of older adults with intellectual disabilities. In E. Chang & A. Johnson (Eds.). Contemporary and innovative practice in palliative care (pp. 255–267). Intech. https://www.intechopen.com/books/contemporary-and-innovative-practice-in-palliative-care/meeting-the-end-of-life-needs-of-older-adults-with-intellectual-disabilities

  • McEvoy, J., MacHale, R., & Tierney, E. (2012). Concept of death and perceptions of bereavement in adults with intellectual disabilities. Journal of Intellectual Disability Research, 56, 191–203. https://doi.org/10.1111/j.1365-2788.2011.01456.x

    Article  PubMed  Google Scholar 

  • McEvoy, J., Treacy, B. & Quigley, J. (2017). A matter of life and death: knowledge about the body and concept of death in adults with intellectual disabilities. Journal of Intellectual Disability Research, 61(1), 89–98. https://doi.org/10.1111/jir.12347

  • McKenzie, N., Brandford, S., Conder, J., & Mirfin-Vietch, B. (2016). Why won’t you tell me I’m dying? Journal of Intellectual Disability Research, 60(7–8), 707.

    Google Scholar 

  • McKenzie, N., Mirfin-Veitch, B., Conder, J., & Brandford, S. (2017). “I’m still here”: Exploring what matters to people with intellectual disability during advance care planning. Journal of Applied Research in Intellectual Disabilities, 30(6), 1089–1098. https://doi.org/10.1111/jar.12355

  • McMaugh, P. J., Wiese, M. Y., & Stancliffe, R. J. (2017). The experiences of parents in supporting their son or daughter with intellectual disability to learn about dying and death. Journal of Intellectual & Developmental Disability, 42(3), 285–294. https://doi.org/10.3109/13668250.2016.1236367

    Article  Google Scholar 

  • McRitchie, R., McKenzie, K., Quayle, E., Harlin, M., & Neumann, K. (2014). How adults with an intellectual disability experience bereavement and grief: A qualitative exploration. Death Studies, 38(3), 179–185. https://doi.org/10.1080/07481187.2012.738772

    Article  PubMed  Google Scholar 

  • Mollison, E., Chaplin, E., Underwood, L., & McCarthy, J. (2014). A review of risk factors associated with suicide in adults with intellectual disability. Advances in Mental Health and Intellectual Disabilities, 8(5), 302–308. https://doi.org/10.1108/AMHintellectual.disability-05-2014-0021

  • Moro, T. T., Savage, T. A., & Gehlert, S. (2017). Agency, social and healthcare supports for adults with intellectual disability at the end of life in out-of-home, non-institutional community residences in Western nations: A literature review. Journal of Applied Research in Intellectual Disabilities, 31, 484–489. https://doi.org/10.1111/jar.12374

    Article  Google Scholar 

  • O’Keeffe, L., Guerin, S., McEvoy, J., Lockhart, K., & Dodd, P. (2019). The process of developing self-report measures in intellectual disability: A case study of a complicated grief scale. British Journal of Learning Disabilities, 47(2), 134–144. https://doi.org/10.1111/bld.12261

    Article  Google Scholar 

  • Read, S., & Carr, M. (2014). Living with loss. In S. Read (Ed.), Supporting people with intellectual disabilities experiencing loss and bereavement: Theory and compassionate practice (pp. 36–45). Jessica Kingsley Publishers.

    Google Scholar 

  • Ryan, K., Guerin, S., Dodd, P., & McEvoy, J. (2011a). Communication contexts about illness, death and dying for people with intellectual disabilities and life-limiting illness. Palliative and Supportive Care, 9, 201–208. https://doi.org/10.1017/S1478951511000137

    Article  PubMed  Google Scholar 

  • Ryan, K., Guerin, S., Dodd, P., & McEvoy, J. (2011b). Exploring the experiences of people with intellectual disabilities when service users die. British Journal of Learning Disabilities, 39, 259–265. https://doi.org/10.1111/j.1468-3156.2010.00662.x

    Article  Google Scholar 

  • Savage, T. A., Moro, T. T., Boyden, J. Y., Brown, A. A., & Kavanaugh, K. L. (2015). Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities. Applied Nursing Research, 28, 202–205. https://doi.org/10.1016/j.apnr.2014.10.002

    Article  PubMed  Google Scholar 

  • Schepens, H., van Puyenbroeck, J., & Maes, B. (2019). How to improve the quality of life of elderly people with intellectual disability: A systematic literature review of support strategies. Journal of Applied Research in Intellectual Disabilities, 32, 483–521. https://doi.org/10.1111/jar.12559

  • Sheehan, D. K., Draucker, C. B., Christ, G. H., Mayo, M. M., Heim, K., & Parish, S. (2014). Telling adolescents a parent is dying. Journal of Palliative Medicine, 17(5), 512–520. https://doi.org/10.1089/jpm.2013.0344

    Article  Google Scholar 

  • Slaughter, V., & Griffiths, M. (2007). Death understanding and fear of death in young children. Clinical Child Psychology and Psychiatry, 12(4), 525–535. https://doi.org/10.1177/1359104507080980

    Article  PubMed  Google Scholar 

  • Stancliffe, R. J., Wiese, M. Y., & Read, S. (2017). Editorial: End of life and people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 30(6), 977–981. https://doi.org/10.1111/jar.12383

    Article  PubMed  Google Scholar 

  • Stancliffe, R. J., Wiese, M. Y., Read, S., Jeltes, G., & Clayton, J. M. (2016). Knowing, planning for and fearing death: Do adults with intellectual disability and disability staff differ? Research in Developmental Disabilities, 49–50, 47–59. https://doi.org/10.1016/j.ridd.2015.11.016

    Article  PubMed  Google Scholar 

  • Stancliffe, R. J., Wiese, M. Y., Read, S., Jeltes, G., & Clayton, J. M. (2017b). Assessing knowledge and attitudes about end of life: Evaluation of three instruments designed for adults with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 30(6), 1076–1088. https://doi.org/10.1111/jar.12358

    Article  PubMed  Google Scholar 

  • Stancliffe, R. J., Wiese, M. Y., Read, S., Jeltes, G., Barton, R., & Clayton, J. M. (2021). Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm? Journal of Applied Research in Intellectual Disabilities, 34, 659–669. https://doi.org/10.1111/jar.12835

    Article  PubMed  Google Scholar 

  • Todd, S. (2004). Death counts: The challenge of death and dying in learning disability services. Learning Disability Practice, 7(10), 12–15. https://doi.org/10.7748/ldp2004.12.7.10.12.c1551

    Article  Google Scholar 

  • Todd, S. (2013). “Being there”: The experiences of staff in dealing with matters of dying and death in services for people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26(3), 215–230. https://doi.org/10.1111/jar.12024

    Article  PubMed  Google Scholar 

  • Todd., S., Bernal, J., Shearn, J., Worth, R., Jones, E., Lowe, K., Madden, P., Barr, O., Forrester Jones, R., Jarvis, P., Kroll., T., McCarron, M., Read, S., & Hunt, K. (2020). Last months of life of people with intellectual disabilities: A UK population‐based study of death and dying in intellectual disability community services. Journal of Applied Research in Intellectual Disabilities, 33(6), 1245–1258. https://doi.org/10.1111/jar.12744

  • Tuffrey-Wijne, I. (2013a). How to break bad news to people with intellectual disabilities: A guide for carers and professionals. Jessica Kingsley.

    Google Scholar 

  • Tuffrey-Wijne, I. (2013b). A new model for breaking bad news to people with intellectual disabilities. Palliative Medicine, 27(1), 5–12. https://doi.org/10.1177/0269216311433476

  • Tuffrey-Wijne, I., Bernal, J., & Hollins, S. (2010). Disclosure and understanding of cancer diagnosis and prognosis for people with intellectual disabilities: Findings from an ethnographic study. European Journal of Cancer Nursing, 14, 224–230. https://doi.org/10.1016/j.ejon.2010.01.021

    Article  Google Scholar 

  • Tuffrey-Wijne, I., Hogg, J., & Curfs, L. (2007). End-of-life and palliative care for people with intellectual disabilities who have cancer or other life-limiting illness: A review of the literature and available resources. Journal of Applied Research in Intellectual Disabilities, 20, 331–344. https://doi.org/10.1111/j.1468-3148.2006.00350.x

  • Tuffrey-Wijne, I., Giatras, N., Butler, G., Creswell, A., Manners, P., & Bernal, J. (2013). Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26, 231–242. https://doi.org/10.1111/jar.12026

    Article  PubMed  Google Scholar 

  • Tuffrey-Wijne, I., Finlayson, J., Bernal, J., Taggart, L., Lam, C. K. K., & Todd, S. (2020). Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK-wide survey of intellectual disability support staff. Journal of Applied Research in Intellectual Disabilities, 33(5), 927–938. https://doi.org/10.1111/jar.12714

    Article  PubMed  Google Scholar 

  • Tuffrey-Wijne, I., & Rose, T. (2017). Investigating the factors that affect the communication of death-related bad news to people with intellectual disabilities by staff in residential and supported living services: An interview study. Journal of Intellectual Disability Research, 61(1), 727–736. https://doi.org/10.1111/jir.12375

    Article  PubMed  Google Scholar 

  • Voss, H., Vogel, A., Wagemans, A. M., Francke, A. L., Metsemakers, J. F., Courtens, A. M., & de Veer, A. J. E. (2017). Advance care planning in palliative care for people with intellectual disabilities: A systematic review. Journal of Pain and Symptom Management, 54, 938–960. https://doi.org/10.1016/j.jpainsymman.2017.04.016

    Article  PubMed  Google Scholar 

  • Voss, H., Vogel, A., Wagemans, A. M. A., Francke, A. L., Metsemakers, J. F. M., Courtens, A. M., & de Veer, A. J. E. (2019). Advance care planning in the palliative phase of people with intellectual disabilities: Analysis of medical files and interviews. Journal of Intellectual Disability Research, 63(10), 1262–1272. https://doi.org/10.1111/jir.12664

    Article  PubMed  Google Scholar 

  • Voss, H., Vogel, A., Wagemans, A. M. A., Francke, A. L., Metsemakers, J. F. M., Courtens, A. M., & de Veer, A. J. E. (2021). Development, implementation, and evaluation of an advance care planning program for professionals in palliative care of people with intellectual disability. Intellectual and Developmental Disabilities, 59(1), 39–54. https://doi.org/10.1352/1934-9556-59.1.39

    Article  PubMed  Google Scholar 

  • Wiese, M., Dew, A., Stancliffe, R. J., Howarth, G., & Balandin, S. (2013). ‘If and when?’: The beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying. Journal of Intellectual Disability Research, 57, 980–992. https://doi.org/10.1111/j.1365-2788.01593.x

    Article  PubMed  Google Scholar 

  • Wiese, M., Stancliffe, R. J., Balandin, S., Howarth, G., & Dew, A. (2012). End-of-life care and dying: Issues raised by staff supporting older people with intellectual disability in community living services. Journal of Applied Research in Intellectual Disabilities, 25(6), 571–583. https://doi.org/10.1111/jar.12000

    Article  PubMed  Google Scholar 

  • Wiese, M., Stancliffe, R. J., Read, S., Jeltes, G., & Clayton, J. (2015). Learning about dying, death and end-of-life planning: Current issues informing future actions. Journal of Intellectual & Developmental Disability, 40(2), 230–235. https://doi.org/10.3109/13668250.2014.998183

    Article  Google Scholar 

  • Young, R., Dagnan, D., & Jahoda, A. (2016). Leaving school: A comparison of the worries held by adolescents with and without intellectual disabilities. Journal of Intellectual Disability Research, 60(1), 9–21. https://doi.org/10.1111/jir.12223

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Centre for Disability Research and Policy, University of Sydney, Sydney, NSW, Australia

    Roger J. Stancliffe

  2. School of Psychology, Western Sydney University, Penrith, NSW, Australia

    Michele Y. Wiese

  3. School of Social Work, Temple University, Philadelphia, PA, USA

    Philip McCallion

  4. Trinity Centre for Ageing and Intellectual Disability, Trinity College Dublin, Dublin, Ireland

    Mary McCarron

Authors
  1. Roger J. Stancliffe
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Michele Y. Wiese
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Philip McCallion
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Mary McCarron
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Michele Y. Wiese .

Editor information

Editors and Affiliations

  1. Centre for Disability Research and Policy, University of Sydney, Sydney, NSW, Australia

    Roger J. Stancliffe

  2. School of Psychology, Western Sydney University, Penrith, NSW, Australia

    Michele Y. Wiese

  3. School of Social Work, Temple University, Philadelphia, PA, USA

    Philip McCallion

  4. Trinity Centre for Ageing and Intellectual Disability, Trinity College Dublin, Dublin, Ireland

    Mary McCarron

Rights and permissions

Reprints and permissions

Copyright information

© 2022 The Author(s), under exclusive license to Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Stancliffe, R.J., Wiese, M.Y., McCallion, P., McCarron, M. (2022). Experience of End-of-Life Issues by People with Intellectual 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. https://doi.org/10.1007/978-3-030-98697-1_2

Download citation

Publish with us

Policies and ethics

Search

Navigation