Status of End of Life Care in Organizations Providing Services for Older People With a Developmental Disability

Abstract

Volunteers of America conducted a national survey of directors of 500 organizations providing services to older people with an intellectual disability in order to establish a baseline for assessing current status of end of life care. The questionnaire contained 56 questions. The return rate was 32% (N = 160). Data analysis provided an overview of organizational needs, resource allocations, end of life care services currently provided, obstacles to care, methods for monitoring such care, and existing and recommended strategies for improving this care. Results underscored the needs for practical guidelines and resources, increased staffing and training, and policy-level reduction of obstacles to promote improved end of life care.

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

“…Whilst retrospective studies using interviewing techniques have yielded valuable insights, larger scale more quantitative needs assessments are needed for the planning of future service developments. The survey of intellectual disability services by Botsford (2004) is a promising step forward; large scale postal surveys can be a useful study method, provided that return rates are sufficient and issues of sample bias are addressed. The generalizability of such data further depends on the inclusion criteria for the study, and on similarities in the way both intellectual disability and palliative care services are organized across geographical areas.…”

“…The impact of terminal illness on social network gets little attention in the literature, but a few papers mention the important place of family members, even if their involvement in the person's life has been minimal. Negotiating delicate family relationships can be difficult for residential staff (Botsford 2000a, 2004), but may be of crucial importance for people with intellectual disabilities. Vanier (2001) points out that many remain deeply attached to their own families even though they may have experienced familial rejection.…”

“…Botsford (2004) conducted a survey of the current provision of end‐of‐life care by major national providers of intellectual disability services in the USA. Postal questionnaires were returned by 160 directors of services, a response rate of 32%.…”

“…The provision of both training and supervision should not be dependent on local initiatives; their funding needs a national commitment. Botsford's survey of intellectual disability services highlighted the urgent need for such training (Botsford 2004).…”

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

“…As this review illustrates, adults with intellectual disabilities are often not involved in decisions about transitions (Bekkema et al., ; Friedman et al., ) or health care at the end of life (Flynn et al., ; Forbat & McCann, ; Tuffrey‐Wijne et al., ; Tuffrey‐Wijne, Bernal, & Hollins, ; Tuffrey‐Wijne, Bernal, Hubert et al., ). Instead, transitions are decided by factors including limited agency resources (Botsford, ; Webber, Bowers, & McKenzie‐Green, ) or staffs’ feelings of competence in providing care (Bekkema et al., ; Bigby et al., ; Janicki, ; McCarron et al., ). There is evidence to suggest that when adults with intellectual disabilities receive palliative care in their homes at the end of life they may be less likely to be transitioned to another setting such as a nursing home (Kirkendall et al., ; McLaughlin et al., ).…”