Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability

Watson, Joanne; Wilson, Erin; Hagiliassis, Nick

doi:10.1111/jar.12393

Cited by 53 publications

(99 citation statements)

References 32 publications

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“…The winning projects suggest that story telling may have an important contribution to make to the ACP process. This is in line with the findings of an Australian study that the involvement of people with severe and profound ID in decisions, including end-of-life decisions, depended on the person being supported by people who had a close relationship with them, and not only knew their life story, but shared it with others (Watson, Wilson, & Hagiliassis, 2017).…”

Section: The Person's Story Is At the Heart Of Caresupporting

confidence: 89%

Excellence in palliative and end-of-life care provision for people with intellectual disability

Tuffrey‐Wijne

Davidson

2018

Int J Palliat Nurs

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BACKGROUND: People with ID experience significant inequalities in end-of-life and palliative care provision. AIMS:To identify the key characteristics of practice initiatives and case reports that have won a UK award for outstanding provision of end-of-life care for people with ID (2008ID ( -2018. METHODS:Thematic content analysis of the written nominations for award winners and those highly commended (n=25). FINDINGS:Four themes were identified: (1) Good practice was dependent on 'champions' with drive, enthusiasm and determination, supported by committed organisations and managers. (2) Collaboration was essential, including collaboration with families. (3) Care was highly individualised, putting the person's story at the centre. (4) There was a focus on staff training and use of specifically designed or adapted tools. CONCLUSION:The good practice examples are encouraging. Focus is now needed on ensuring that good practice is sustained, replicated and embedded within policies and organisational cultures. Currently, it remains over-dependent on committed individuals within organisations.Intellectual disabilities; Palliative care; End of life; Healthcare quality, access and evaluation; Delivery of healthcare This paper provides an overview and analysis of practice initiatives that have won a UK award for excellence in palliative and end-of-life care provision for people with ID, given annually by the Palliative Care for People with Learning Disabilities (PCPLD) Network. The PCPLD Network is a UK charity aiming to raise awareness of the palliative care needs of people with ID, to share and promote best practice, and to enhance collaboration (PCPLD Network, 2018). The Linda McEnhill Award is given to individuals, teams, organisations or collaborations that have initiated a new development, project or innovation, or provided outstanding end-of-life care to one person with ID (see box 1). Intellectual disability (ID): definition and prevalenceAccording to the World Health Organisation (2018), ID means "a significantly reduced ability to understand new or complex information and to learn and apply new skills (impaired intelligence). This results in a reduced ability to cope independently (impaired social functioning), and begins before adulthood, with a lasting effect on development." ID affects around 2% of the population; this is approximately one million people in England (Learning Disabilities Observatory, 2016). In the UK, the term "learning disability" is often used, rather than ID. Health inequalitiesA large population-based study in Finland found that whilst people with ID had a lower life expectancy, those whose ID was mild had a similar life expectancy to the general population (Patja et al, 2000). More recent UK research has found, however, that life expectancy for all people with ID remains significantly below that of the general population (Emerson, Glover, & Wolstenholme, 2014). The UK Learning Disability Mortality Review Programme found that in 2017, the median age at death was 47 for people with severe a...

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Section: The Person's Story Is At the Heart Of Caresupporting

confidence: 89%

Excellence in palliative and end-of-life care provision for people with intellectual disability

Tuffrey‐Wijne

Davidson

2018

Int J Palliat Nurs

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“…Of the 10 included studies, eight were conducted in the Netherlands, one in Australia, and one in the United States. Six studies were (semi-structured) interview studies (Van Thiel et al 1997;Wagemans et al 2013a;Wagemans et al 2013b;Bekkema et al 2015;Zaal-Schuller et al 2016;Zaal-Schuller et al 2018), two included multiple case studies (Watson et al 2017;Tuffrey-Wijne et al 2018), one was a single case study (Lohiya et al 2003), and in one study, medical files were examined (Wagemans et al 2010). All studies had an observational design.…”

Section: Study Characteristicsmentioning

confidence: 99%

Shared decision‐making with people with intellectual disabilities in the last phase of life: A scoping review

Noorlandt¹,

Echteld

Tuffrey‐Wijne

et al. 2020

J intellect Disabil Res

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Background Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment. Method In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life. Results Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined. Conclusion Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life.

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“…Further research needs to be conducted to examine the SDMI in typical contexts and to examine utility and ease of use by participants and trusted allies outside the context of the small group administration used for this study. Further, for individuals with intellectual disability who are unable to respond to the items, with supports, additional modalities for gathering information on decision‐making supports is needed consistent with ongoing research (Watson, ; Watson et al, ). Additional research is also needed to explore the utility of the SDMI in planning processes and the degree to which people with disabilities and those that support them find it meaningful and useful as they work to build supports for decision‐making.…”

Section: Discussionmentioning

confidence: 99%

“…Given that the SDMI was designed for an interview format, recruitment materials provided examples of the types of questions that would be asked, and nature of the responses requested. As such, people with more complex communication needs who could not participate in such a format were excluded from the study, and readers are referred to other work targeting the needs of this population (Watson, ; Watson et al, ). When service coordinators were scheduled to meet with each of their clients (including a family member or guardian) that would be eligible for the study, the service coordinator described the nature of the study and offered each person a brochure.…”

Section: Methodsmentioning

confidence: 99%

“…The SDMI was designed to be completed as an interview with the person with a disability with as much support as needed to enable that person to understand the intent of questions and provide reliable responses. However, we acknowledge that there are limitations for participation of those with extensive communication needs in this format, and recognize the work of Watson and colleagues (Watson, ; Watson, Wilson, & Hagiliassis, ) on engaging people with profound deficits in intellectual functioning in supported decision‐making.…”

mentioning

confidence: 99%

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Refining the Supported Decision Making Inventory

Shogren

Rifenbark

Wehmeyer

et al. 2020

Policy Practice Intel Disabi

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This paper reports the steps taken to refine the pilot version of the supported decision making inventory (SDMI), a new tool designed to support planning teams implementing supported decision making with people with disabilities. Data were collected on the pilot version of the SDMI with 152 adults with intellectual and developmental disabilities and their supporters and systematic analyses were undertaken to identify the best subset of items on the pilot version of the SDMI. Analyses were also undertaken to examine the impact of contextual factors on scores on the refined tool. The reduced set of items (n = 29) adequately represented the three theoretical domains assessed on the scale: (1) personal factors, (2) environmental demands, and (3) the supports needed to engage in decision‐making. With the reduced set of items, age, gender, and having multiple disability labels did not influence scores. Those that had a legal guardian scored lower in experiences with decision making but higher in supports needed for implementing a decision. Additionally, those that were in competitive, integrated employment identified having more experiences with decision‐making and scored lower on supports needed for making a decision. Implications for research, policy, and practice are described.

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Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability

Abstract: Findings from this study provide new understandings of supported decision making for people with severe or profound intellectual disability and have particular relevance for supporting decision making at the end of life.

Cited by 53 publications

References 32 publications

Excellence in palliative and end-of-life care provision for people with intellectual disability

Excellence in palliative and end-of-life care provision for people with intellectual disability

Shared decision‐making with people with intellectual disabilities in the last phase of life: A scoping review

Refining the Supported Decision Making Inventory

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