End-of-life care supports and decision-making practices in specialist intellectual disability residential services

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Dalton, Caroline
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University College Cork
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Background: Over the past 50 years, the profile of people with intellectual disability (ID) has changed because they are living longer with a wide range of co-morbid conditions, which impact on both their cognitive and physical abilities to engage in conversations about end-of-life care. Coupled with this, people with an ID are being supported in community settings and are availing of supports from community and hospital services. In addition, the Assisted Decision Making (Capacity) Act (ADM) (2015) is changing the way these individuals will be included in decision making across all aspects of their lives into the future. These changes have led to an increased interest in the end-of-life care of people with an ID and how end- of-life decisions are made with this population. Aim: This study describes and analyses end-of-life care supports and decision making practices in specialist ID residential services. Methods: Case study methodology was used to develop a detailed account of how nine people with an ID were supported at the end of their lives. A multiple-embedded case study design was used, drawing on a range of data sources and multiple perspectives including those of family members and healthcare professionals, and the case files of nine decedents identified in this study. Qualitative content analysis techniques were used to analyse the data gleaned from documents, and interviews. Data identified from three questionnaires was also analysed qualitatively. Following the analysis of the nine individual case studies, cross case analysis was used to identify commonalities and differences between the cases. Findings: Analysis of these nine cases has identified a number of factors of importance to the end-of-life care of individuals with an ID from the perspectives of families and staff supporting them. Firstly, specialist ID services are committed to supporting people with an ID at end of life, and to providing services which allow them to “age and die in place”. Where this could not be achieved, supports were provided in external services such as hospitals and hospices, reflective of an ongoing commitment to the person at end of life. Secondly, this commitment is also reflected in the support provided to the decedents in this study by family members and ID staff who were involved in their care. Those individuals, who formed a circle of support around the decedents used their collective knowledge to promote the autonomy of people with an ID and actively advocated on their behalf. Thirdly, despite the evident commitment of all involved, issues arose in relation to the provision of end-of life care at organisational and individual levels. These issues included a lack of preparedness in both specialist ID residential services and acute hospital settings to support people with an ID at end of life. A culture of silence was also evident in specialist ID residential services: there was a lack of conversations about death and dying in general as well as discussions about end-of-life care in particular, with the decedents involved. This culture of silence prevented people with an ID from being informed that they were dying. Finally, this study also determined that people with an ID are not included in decision making about their end-of-life care, the responsibility for which was borne by family members and health professionals across a range of services. Conclusion: Given the changing age profile of people with an ID, the landscape in which health services are provided, and the legislative changes envisioned in the ADM (2015), issues relating to communication, capacity and decision making for people with an ID must be addressed. People with an ID and their families should be included in end- of-life care at a much earlier stage than is currently the case. The supports required by people with an ID, their families and staff need to be made explicit to ensure the autonomy of people with an ID is protected and promoted when making end-of-life decisions. There is potential for person centred planning processes, within specialist ID services, to be used to ensure conversations about death, dying and end-of-life care occur in a timely manner.
Autonomy , Intellectual disability , End-of-life , Advance care planning
Dalton, C. 2019. End-of-life care supports and decision-making practices in specialist intellectual disability residential services. PhD Thesis, University College Cork.
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