Restricted accessResearch articleFirst published online 2020-12
Creating person-centred support for people with intellectual disabilities at the end of life: An Australian qualitative study of unmet needs and strategies
People with intellectual disabilities at the end of life are at risk of receiving inadequate and inequitable end-of-life care. This study explores their unmet needs, opportunities for person-centred care and experiences of health service use.
Methods:
Qualitative interviews with 26 experienced health professionals and carers were used to explore their patients’ and residents’ unmet needs and end-of-life care options and to outline strategies to support them.
Results:
A range of challenges and unmet needs experienced by people with intellectual disabilities are presented in themes: (1) accommodation setting at the end of life: dying ‘at home’; (2) personal factors and networks: a circle of support; (3) end-of-life medical care and decision-making. Strategies to facilitate good end-of-life care and a model of care are presented.
Conclusions:
Well-prepared and collaborative disability and health service workforces are needed, together with flexible and adequate end-of-life funding to ensure compassionate and person-centred care.
Australian Institute of Health and Welfare (AIHW) (2016) Health status and risk factors of Australians with disability 2007–08 and 2011–12. Cat. no. DIS 65. Canberra: AIHW.
2.
BekkemaNde VeerAJEWagermansAMA, et al. (2014) Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: a national survey of the considerations and beliefs of GPs, ID physicians, and care staff. Patient Education and Counselling96: 204–209.
3.
BekkemaNde VeerAJEWagemansAMA, et al. (2015) ‘To move or not to move’: a national survey among professionals on beliefs and considerations about the place of end-of-life care for people with intellectual disabilities. Journal of Intellectual Disability Research59: 226–237.
4.
BigbyCBouldEBeadle-BrownJ (2017) Conundrums of supported living: the experiences of people with intellectual disability. Journal of Intellectual and Developmental Disability42: 309–319.
5.
BrownMChouliaraZMacArthurJ, et al. (2016) The perspectives of stakeholders of intellectual disability liaison nurses: a model of compassionate, person-centred care. Journal of Clinical Nursing25: 972–982.
6.
CocksEThomsonAThoresenS, et al. (2018) Factors that affect the perceived health of adults with intellectual disability: a Western Australian study. Journal of Intellectual and Developmental Disability43: 339–350.
7.
CottrellLDugglebyW (2016) The ‘good death’: an integrative literature review. Palliative and Supportive Care14: 686–712.
8.
CrossHCameronMMarshS, et al. (2012) Practical approaches towards improving end-of-life care for people with intellectual disabilities: effectiveness and sustainability. Journal of Palliative Medicine15: 322–326.
9.
Forrester-JonesRBeechamJKBarnouxM, et al. (2017) People with intellectual disabilities at the end of their lives: the case for specialist care?Journal of Applied Research in Intellectual Disability30: 1138–1150.
10.
FriedmanSLHelmDTWoodmanAC (2012) Unique and universal barriers: hospice care for aging adults with intellectual disability. American Journal on Intellectual and Developmental Disability117: 509–532.
11.
GrindrodARumboldB (2017) Providing end-of-life care in disability community living services: an organizational capacity-building model using a public health approach. Journal of Applied Research and Intellectual Disability30: 1125–1137.
12.
GubriumJFHolsteinJAMarvastiAB, et al. (eds.) (2012) The SAGE Handbook of Interview Research: The Complexity of the Craft. Thousand Oaks, CA: SAGE.
13.
Granda-CameronCHouldinA (2012) Concept analysis of a good death in terminally ill patients. The American Journal of Hospice and Palliative Care298: 632–639.
14.
HavercampSMScottHM (2015) National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disability and Health Journal8: 165–172.
15.
HeslopPBlairPSFlemingP, et al. (2014) The confidential inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet383: 889–895.
16.
MoroTTSavageTAGehlertS (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 Disability30: 1045–1056.
17.
RattiVHassiotisACrabtreeJ, et al. (2016) The effectiveness of person-centred planning for people with intellectual disabilities: a systematic review. Research in Developmental Disabilities57: 63–84.
18.
ReppermundSSrasuebkulPHeintzeT, et al. (2017) Cohort profile: a data linkage cohort to examine health service profiles of people with intellectual disability in New South Wales, Australia. British Medical Journal Open7: e015627.
19.
SjogrenKLindkvistMSandmanP, et al. (2017) Organizational and environmental characteristics of residential aged care units providing highly person-centred care: a cross sectional study. BMC Nursing16: 44. DOI: 10.1186/s12912-017-0240-4
20.
SteinGLKerwinJ (2010) Disability perspectives on health care planning and decision-making. Journal of Palliative Medicine13: 1059–1064.
21.
TrollerJSrasuebkulPXuH, et al. (2017) Cause of death and potentially avoidable deaths in Australian adults with intellectual disability using retrospective data. British Medical Journal Open7: e013489.
22.
Tuffrey-WijneI (2016) Cancer and intellectual disability. In: WyattDHulbert-WilliamsN (eds.), Cancer and Cancer Care. London: SAGE, 143–158.
23.
Tuffrey-WijneIMcLaughlinDCurfsL, et al. (2016) Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: a white paper from the European association of palliative care. Palliative Medicine30: 446–455.
24.
VrijmoethCChristiansMGMFestenDAM, et al. (2016) Physician-reported symptoms and interventions in people with intellectual disabilities approaching end of life. Journal of Palliative Medicine19: 1142–1147.
25.
WarkSHussainRMüllerA, et al. (2017) Challenges in providing end-of-life care for people with intellectual disability: health services access. Journal of Applied Research in Intellectual Disabilities30: 1151–1159.
26.
WieseMStancliffeRReadS, et al. (2015) Learning about dying and end-of-life planning: current issues informing further actions. Journal of Intellectual and Developmental Disability40: 230–235.
27.
World Health Organization (WHO), The World Bank (2011) World Report on Disability. Geneva: WHO Press.
