Disclosure and plan of care at end of life: Perspectives of people with intellectual disabilities and families in Ireland

Abstract

Accessible summary Professionals are reluctant to discuss sensitive information with people with intellectual disabilities. People with intellectual disabilities and families wish to engage in end‐of‐life discussions. People with intellectual disabilities expressed how they could handle bad news and they felt that this information could be used to help make choices. People with intellectual disabilities and families want to develop a plan based on their choices and wishes and there is a need to respect this at the end of life. Abstract BackgroundRecently, more and more people with intellectual disabilities have been dying from life‐limiting conditions, and on many occasions, people with intellectual disabilities have not been informed of this. There is limited evidence concerning the views and opinions of this cohort regarding the information that is needed in order for decision‐making to occur at the end of life. Therefore, this study aimed to explore the perceptions of people with intellectual disabilities and families in terms of the information that is needed as part of end‐of‐life decision‐making. Materials and MethodsA qualitative approach was employed to explore the information needed by, and the decision‐making ability of, people with intellectual disabilities at the end‐of‐life phase. One‐to‐one interviews were carried out with nineteen people following the obtaining of ethical approval. The constant comparative method was used to analyse the data. ResultsIt was found that people with intellectual disabilities were comfortable with, and wished to know about, what was happening in their lives, including the existence of life‐limiting conditions, so that they would be able to create a good plan for their future care. It was also expressed how it was essential to create a plan of care that allowed professionals to provide excellent care and use of which prevented the occurrence of any ambiguity. ConclusionsThe study found that people with intellectual disabilities, especially those with mild and moderate, are able to handle complex and sensitive information and make decisions for themselves regarding their care when adequate support is in place.

Perceived barriers and facilitators to good end of life care: Focusing on people with intellectual disabilities

“…The findings of this study are in line with other Ireland-based research on end of life care for this population. It supports the suggestion, made in other Irish studies on this topic, that that the family is an important determining factor in if and to what extent this population's end of life wishes are heard and respected (Cithambaram et al, 2020;McCausland et al, 2019). Our study brings in an additional focus on home-based versus institution-based end of life care, an aspect which, to our knowledge, has not been examined in an Irish context before.…”

Qualitative methodological approaches involving participants with intellectual disabilities: Scoping review of literature exploring death and dying

“…The 25 included articles represent 23 studies. Five included papers (20%) (Cithambaram et al, 2019, 2020; Tuffrey‐Wijne et al, 2009; Tuffrey‐Wijne, Bernal, & Hollins, 2010; Tuffrey‐Wijne, Bernal, Hubert, et al, 2010) reported on two studies. One methodological paper (Butler et al, 2012) reviewed two articles, with one article included in the review (Tuffrey‐Wijne et al, 2012) and one was not (Tuffrey‐Wijne, 2013).…”

“…Seventeen of the included studies (68%) reported levels of intellectual disabilities (see Table 1). Nine studies (53%) (Cithambaram et al, 2019, 2020; Cithambarm et al, 2021; Forrester‐Jones, 2013; Haider & Zaman, 2022; McEvoy et al, 2012; McEvoy et al, 2017; Thorp et al, 2018; Tuffrey‐Wijne et al, 2013) collected data from people with mild to moderate disabilities and all used interviews. Five studies (29%) (Chow et al, 2017; Rodríguez Herrero et al, 2015; Tuffrey‐Wijne et al, 2009; Tuffrey‐Wijne, Bernal, & Hollins, 2010; Tuffrey‐Wijne, Bernal, Hubert, et al, 2010) collected data from people with mild, moderate, and severe intellectual disabilities.…”

Challenges and opportunities for improvement when people with an intellectual disability or serious mental illness also need palliative care: A qualitative meta-ethnography

“…. .the person who is dying should know everything and people should let them make choices [First order data 92 ] A key concern for primary participants was that they were able to make their own choices and be in control of the decisions being made. [Second order data 93 ] ‘The discussions about wishes also seemed to express a deep desire that the person with ID should be in control’.…”

“…. .the person who is dying should know everything and people should let them make choices [First order data 92 ]…”