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Assessing Older Adults' Decision-Making Capacity for Independent Living: Practice Tensions and Complexities.

ABSTRACT: Decision-making capacity (DMC) is a salient issue due to increasing ageing populations and associated dementia-related diseases. Legislative and policy developments emphasise older adults' rights to participate in decision-making. Fifty-two occupational therapists working with older adults from a range of practice settings in Ireland participated in focus groups to discuss their contribution to multidisciplinary assessments of older adult's DMC for independent living. Findings indicate lack of shared understanding of DMC and conflicting philosophies of practice and highlight the need for a comprehensive and multidisciplinary approach. Findings also highlight that older people are often excluded from care-planning, and independent living options are determined by availability of community services rather than their preferences. Future research will attempt to inform practice in assessing and supporting older adults' DMC for independent living.

SUBMITTER: Usher R

PROVIDER: S-EPMC9024017 | biostudies-literature | 2022 May

REPOSITORIES: biostudies-literature

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Assessing Older Adults' Decision-Making Capacity for Independent Living: Practice Tensions and Complexities.

Usher Ruth R Stapleton Tadhg T

Journal of applied gerontology : the official journal of the Southern Gerontological Society 20220121 5

Decision-making capacity (DMC) is a salient issue due to increasing ageing populations and associated dementia-related diseases. Legislative and policy developments emphasise older adults' rights to participate in decision-making. Fifty-two occupational therapists working with older adults from a range of practice settings in Ireland participated in focus groups to discuss their contribution to multidisciplinary assessments of older adult's DMC for independent living. Findings indicate lack of s ...[more]

PMID: 35060410

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Project description:BackgroundShared decision-making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the pediatric setting and children with medical complexity (CMC), specifically since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs.ObjectiveThe goal of our study was to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity among parents of CMCs and exploring what comprises their decision-making activity.MethodsWe interviewed 12 participants using semistructured interviews based on activity theory. Participants identified as either a parent of a CMC or a CMC over the age of 18 years. Qualitative framework analysis and an activity theory framework were employed to understand the complexity of the decision-making process in context.ResultsParents of CMCs in our study made decisions based on a mental model of their child's illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions.ConclusionsOur interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving, and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child's unique situation, the insights parents gain through their decision-making activity, and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values.

Project description:ImportanceIncarcerated patients admitted to the hospital face threats to their rights to privacy and self-determination in medical decision-making. Little is known about medical decision-making processes for hospitalized incarcerated persons who lack decisional capacity.ObjectiveTo characterize the prevalence of incapacity among hospitalized incarcerated patients and describe the decision-making processes, including who served as surrogate decision-makers, involvement of prison employees in medical decisions, and ethical concerns emerging from the patients' care.Design, setting, and participantsRetrospective descriptive and qualitative study of medical records for all patients admitted from prison for at least 24 hours between January 1, 1999, and September 1, 2019, at a large Midwestern academic medical center. Data analysis was performed from March 15, 2021, to December 14, 2022.Main outcomes and measuresPrevalence of prison-to-hospital admissions for patients with a loss of capacity and characteristics of medical decision-making.ResultsDuring the 20-year study period, 462 patients from the prison were admitted to the hospital, totaling 967 unique admissions. Of these, 131 admissions (14%) involved patients with a loss of capacity and 43 admissions (4%, representing 34 unique patients) required surrogate decision-making. Ten of these patients had advance directives. Surrogate decision-makers often faced decisions about end-of-life care (n = 17) or procedural consent (n = 23). A family member was identified as surrogate decision-maker in 23 admissions. In 6 cases with a kindred surrogate, additional consent was requested from a prison employee. In total, prison employees were documented as being present during or participating in major medical decisions for half of the admissions. Five themes emerged from thematic analysis: uncertainty and misinformation about patient rights and the role of prison employees in medical decision-making with respect to these two themes, privacy violations, deference to prison officials, and estrangement from family and friends outside of the prison.Conclusions and relevanceIn this first in-depth description, to date, of decision-making practices for hospitalized incarcerated patients lacking decisional capacity, admissions of these patients generated uncertainty about their rights, sometimes infringing on patients' privacy and autonomy. Clinicians will encounter incarcerated patients in both hospital and clinic settings and should receive education on how to support ethically and legally sound decision-making practices for this medically vulnerable population.

Dataset Information

Assessing Older Adults' Decision-Making Capacity for Independent Living: Practice Tensions and Complexities.

Publications

Assessing Older Adults' Decision-Making Capacity for Independent Living: Practice Tensions and Complexities.

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