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PALCAP - Palliative Care for People with Intellectual Disabilities

Background and aims

Residential homes for people with disabilities are caring for growing numbers of elderly and seriously ill residents. As the frequency of incurable and chronic disease rises with age, the care load is increasing. There are still no data on the provision of palliative care for the incurable sick or elderly, dying residents with intellectual disabilities in residential homes for the disabled.

Questions

The aim of this research project is to investigate the situation of adults with intellectual disabilities in residential care facilities as they approach the end of their lives. The quality of care for people in the last stage of life varies in Switzerland. It is unclear how well residential homes for the disabled are prepared to deal with residents at the end of life.

Methods

Residential homes for adults with disabilities throughout Switzerland (n=437) received a questionnaire about options for end-of-life management, guidelines and residents’ participation in end-of-life decision-making. 58% of the homes responded to the survey.

As a second step, seven problem-centred, guideline-based interviews were conducted with support teams, nursing staff and non-residential palliative care teams in the three language areas (German- and French-speaking Switzerland and Ticino). The interviews were analysed using the Documentary Method.

Results

In a little more than half the homes for adults, residents had passed away within the last five years, although only a third of the homes keep residents on until the end of their lives if they need a lot of care for a protracted period. The homes do not have many guidelines on palliative care, and there is a widespread lack of tools to assess decision-making competence. As a consequence, the residents concerned are rarely involved in end-of-life decisions affecting them. In homes which have guidelines on palliative care, the interviewees attribute greater self-determination to residents with disabilities than in homes which have no such guidelines.

Nonetheless, homes display a very great awareness of demographic change. Numerous continuous training courses on this theme were planned and provided in the years 2012/13.

The study provides basic material for researchers, practitioners and politicians. The data permit the definition of key factors enabling adults with disabilities, especially intellectual disabilities, to exercise self-determination at the end of life.

Publications

  • Wicki, M.T. & Hättich, A. (2016). End-of-life decisions for people with intellectual disability - Swiss survey. International Journal of Developmentatl Disability 62(3), 177-181. 
  • Wicki, M.T. (2016). Withholding treatment and intellectual disability: Second survey on end-of-life decisions in Switzerland. SAGE open Medicine, 4, 1-6. Doi: 10.1177/2050312116652637
  • Wicki, M.T. & Riese, F. (2016). Dementia prevalence and organisation of dementia care in residential care facilities in Switzerland. Disability and Health Journal, 9, 719-723. dx.doi.org/10.1016/j.dhjo.2016.05.008
  • Tuffrey-Wijne, I., Wicki, M.T., Heslop, P., McCarron, M., Todd, S., Oliver, D., Ahlström, G., Schäper, S., Hynes, G., O'Farrell, J., Adler, J., Rise, F. & Curfs, L. (2016). Establishing research priorities fo palliative care of people with intellecutal disabilities in Europe: a consultation process using Nominal Group Technique. BMC Palliative Care. BMC series open, inclusive and trusted. DOI: 10.1186/s12904-016-0108-5
  • End-of-life care policies in residential homes for people with intellectual disabilities in Switzerland - availability, content and staff training. Poster presented on September 4, 2014, Netzwerk Forschung Sonderpädagogik, University of Geneva; November 26, 2013, Nationale Konferenz für Forschung in Palliative Care. Berne;  December 5/6, 2013, 3rd EAPC Research Network Seminar on Palliative Care Research, Milano.
  • End-of-life decisions of adults with intellectual disabilities - An examination of the prevalence and nature of decisions in Swiss residential homes. Poster presented on September 4, 2014, Netzwerk Forschung Sonderpädagogik, University of Geneva;  November 7/8, 2013, IASSID Conference „Health inequity – from evidence to action”, Nijemegen NL.
  • Palliative Care for People with Intellectual Disabilities - PALCAP. Poster presented on June 1, 2013., 13th World Congress of the European Association for Palliative Care, Prague.

Facts

Duration
05/2012-09/2015
No.
5_33

Project Management

Prof. Dr. phil.  Wicki

Dozentin

Project team

Kontakt

Forschung und Entwicklung
Tel: +41 44 317 11 81

zfe[at]hfh.ch zfe