Advance care planning in neurologic illness

Macchi, Zachary A.; Lum, Hillary D.

doi:10.1016/b978-0-323-85029-2.00004-x

Cited by 5 publications

(11 citation statements)

References 94 publications

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“…Four articles directly suggested appointing a surrogate decision maker ( Dassel et al, 2019 ; deLima Thomas et al, 2018 ; Mezey et al, 2000 ) or designating a person “responsible for managing ACP” ( Bosisio et al, 2018 ). These articles suggested that surrogates should initiate the process of ACP early in the dementia illness trajectory so that planning takes place when the person with dementia is most able to participate alongside the surrogate ( Dassel et al, 2019 ; deLima Thomas et al, 2018 ; Macchi & Lum, 2022 ). Two more indicated choosing a time and place appropriate for ACP discussion ( Bosisio et al, 2018 ; Mezey et al, 2000 ).…”

Section: Part 1: Scoping Reviewmentioning

confidence: 99%

“…Three articles recommended that care partners conduct a professional evaluation of the care recipient’s cognitive ability as changes to care plans are made over the course of the disease ( Bosisio et al, 2018 ; deLima Thomas et al, 2018 ; Macchi & Lum, 2022 ). Three articles indicated the importance of repeating ACP conversations as the illness progresses ( Dassel et al, 2019 ; deLima Thomas et al, 2018 ; Macchi & Lum, 2022 ). Macchi and Lum’s (2022) suggestion to repeat conversations annually or whenever the care recipient has a noticeable change in either health status or cognitive functioning is particularly compelling.…”

Section: Part 1: Scoping Reviewmentioning

confidence: 99%

“…Three articles indicated the importance of repeating ACP conversations as the illness progresses ( Dassel et al, 2019 ; deLima Thomas et al, 2018 ; Macchi & Lum, 2022 ). Macchi and Lum’s (2022) suggestion to repeat conversations annually or whenever the care recipient has a noticeable change in either health status or cognitive functioning is particularly compelling. Finally, three articles suggested using a structured ACP tool ( Dassel et al, 2019 ; deLima Thomas et al, 2018 ; Mezey et al, 2000 ) so that the care partner is not relying solely on their memory to enact the care recipient’s values and preferences.…”

Section: Part 1: Scoping Reviewmentioning

confidence: 99%

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Advance Care Planning in the Context of Dementia: Defining Concordance

Clayton,

Supiano,

Aruscavage

et al. 2024

The Gerontologist

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Background and Objectives Individuals with dementia may require a surrogate decision-maker as their disease progresses. To prepare for this potential role, dementia care partners need to develop a thorough understanding of their care recipient’s end-of-life values and preferences, or care dyad ACP concordance. As part of our pilot study implementing the LEAD intervention with dementia care dyads, we conducted a multi-method investigation to define care dyad ACP concordance. Research Design and Methods We conducted a scoping review of peer-reviewed studies published after 1991 in English focusing on care dyad ACP concordance in dementia care and included 34 articles. Concurrently, we used descriptive qualitative analysis to analyze seven dyadic ACP conversations from a pilot study about dyadic dementia ACP. Results The scoping review demonstrated 1) no definition of care dyad ACP concordance was reported; 2) surrogate accuracy in end-of-life decisions varies widely; and 3) best practices for ACP in dementia may aid in achieving ACP concordance, but do not prioritize it as an outcome. Qualitative analysis identified seven elements for achieving concordance: Respect/Regard; use of Clarifying Processes; Conveying Health Care Scenarios; Affirmation of Understanding; Recognizing Uncertainty; Expression of Positive Emotions; and Trust. Discussion and Implications Care dyad ACP concordance occurs when care recipients and care partners both understand a care recipient’s end-of-life values, understand the end-of-life preferences informed by those values, and the care partner expresses a willingness to accomplish the care recipient’s wishes to the best of their ability. ACP concordance can be further operationalized for research and clinical care.

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Section: Part 1: Scoping Reviewmentioning

confidence: 99%

Section: Part 1: Scoping Reviewmentioning

confidence: 99%

Section: Part 1: Scoping Reviewmentioning

confidence: 99%

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Advance Care Planning in the Context of Dementia: Defining Concordance

Clayton,

Supiano,

Aruscavage

et al. 2024

The Gerontologist

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“…Advance care planning (ACP) is an essential part of care for patients with dementia, and patients with dementia who undergo ACP receive more goal-concordant care. [2][3][4] Research regarding best practices of ACP in dementia has supported early initiation of ACP by the healthcare provider as well as iterative conversations throughout the disease course during healthcare transitions or as changes in clinical or functional status occur. 2,4 ACP has been demonstrated to improve caregiver satisfaction, patient quality of life, end-of life hospital stays, symptom burden, and comfort in dying.…”

Section: Serious Illness Conversations In Dementiamentioning

confidence: 99%

“…[2][3][4] Research regarding best practices of ACP in dementia has supported early initiation of ACP by the healthcare provider as well as iterative conversations throughout the disease course during healthcare transitions or as changes in clinical or functional status occur. 2,4 ACP has been demonstrated to improve caregiver satisfaction, patient quality of life, end-of life hospital stays, symptom burden, and comfort in dying. 5 Despite the well-established benefits of ACP in dementia, ACP is greatly underutilized among dementia patients 2,4,6 with merely 40% of people with dementia internationally having undergone ACP.…”

Section: Serious Illness Conversations In Dementiamentioning

confidence: 99%

Adapting the Serious Illness Conversation Guide for Dementia Care

Berry,

Montgomery,

Santulli

et al. 2023

Am J Hosp Palliat Care

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Introduction: Advance care planning (ACP), a critical component of quality dementia care, is underutilized due to lack of clinician comfort and the challenging nature of ACP in this context. The Serious Illness Conversation Guide (SICG) is a well-validated clinician-facing tool, developed with patient and clinician input, to facilitate ACP. The aim of this project was to adapt the SICG for dementia for the first time to promote high-quality ACP. Methods: This study uses a mixed-methods approach to adapt the SICG tool for use in dementia care. Experts with relevant clinical, ethical, and topical knowledge were interviewed to develop alterations to the SICG for dementia care. Patients and caregivers were shown a mock interview of the adapted SICG for dementia (SICG-D) to elicit feedback. Results: 8 relevant experts were interviewed. Adaptations included topical alterations to make the conversation more applicable to dementia as well as alterations to the structure of the conversation to accommodate the patient-caregiver dyad. Twenty interviews were conducted with 14 patients and 18 caregivers (either together or separately). A thematic content analysis of interview transcripts demonstrated positive impressions of the tool. In anonymous survey results, 94% reported a positive impression of the conversation and 89% endorsed incorporation of the adapted guide into dementia healthcare. Conclusion: This paper presents the SICG-D, an adapted version of the SICG for use in dementia care. This guide leverages the strengths of the SICG to promote values-based ACP conversations and has been adapted to better facilitate patient-caregiver-clinician triadic communication.

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End-of-Life and Hospice Care in Neurologic Diseases

Chou,

Everett,

McFarlin

et al. 2024

Semin Neurol

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The care of a patient with neurologic disease at end-of-life requires expertise in addressing advance care planning, hospice, symptom management, and caregiver support. Neurologists caring for patients with advanced neurologic disease often identify changes in disease trajectory, functional status, or goals of care that prompt discussions of advance care planning and hospice. Patients nearing end-of-life may develop symptoms such as dyspnea, secretions, delirium, pain, and seizures. Neurologists may be the primary clinicians managing these symptoms, particularly in the hospitalized patient, though they may also lend their expertise to non-neurologists about expected disease trajectories and symptoms in advanced neurologic disease. This article aims to help neurologists guide patients and caregivers through the end-of-life process by focusing on general knowledge that can be applied across diseases as well as specific considerations in severe stroke and traumatic brain injury, amyotrophic lateral sclerosis, Parkinson's disease, and dementia.

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Advance care planning in neurologic illness

Cited by 5 publications

References 94 publications

Advance Care Planning in the Context of Dementia: Defining Concordance

Advance Care Planning in the Context of Dementia: Defining Concordance

Adapting the Serious Illness Conversation Guide for Dementia Care

End-of-Life and Hospice Care in Neurologic Diseases

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