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Journal of Social Work in End-of-life &... Jul 2024
PubMed: 38949629
DOI: 10.1080/15524256.2024.2365368 -
International Journal of Law and... Jun 2024This article critically examines the proposed reforms to Irish mental health law the Mental Health Act 2001 (2001 Act). The article will provide background to the 2001...
This article critically examines the proposed reforms to Irish mental health law the Mental Health Act 2001 (2001 Act). The article will provide background to the 2001 Act and the lengthy law reform process, which has resulted in the publication of the Heads of Bill that propose significant amendments. The article assesses the suggested reforms, considering Ireland's 2018 ratification of the UN Convention on the Rights of Persons with Disabilities (CRPD), which provides important context to the law reform process. The 2001 Act is the primary piece of legislation regulating mental health services and safeguarding the rights of persons subject to the legislation in Ireland. While passed in 2001, the legislation did not come into effect until 2006. The 2001 Act was seen as bringing Irish mental health law into compliance with international human rights law, in particular the European Convention on Human Rights (ECHR). However, Ireland's ratification of the CRPD has necessitated closer scrutiny of the legislation. This review has culminated in the publication of a Heads of Bill in July 2021 and pre-legislative scrutiny by the responsible parliamentary committee in 2022. The long title of the Heads of Bill explicitly states its goal of safeguarding individual autonomy and underscores its commitment to upholding and advancing the rights of people subject to the legislation. The analysis of the Heads of Bill addresses several key areas. These areas include a background to the long process of review, new guiding principles, the category of persons under the mental health legislation, mental health tribunals, consent to treatment, advance healthcare directives, provisions relating to children and young people, and independent advocacy. Based on this analysis of the Heads of Bill, recommendations are suggested which would strengthen respect for the human rights of persons subject to the legislation.
PubMed: 38943689
DOI: 10.1016/j.ijlp.2024.102004 -
Journal of Nephrology Jun 2024Implementing Advance Care Planning (ACP) for patients with End-Stage Kidney Disease (ESKD), particularly in the context of hemodialysis, presents significant challenges.... (Review)
Review
Implementing Advance Care Planning (ACP) for patients with End-Stage Kidney Disease (ESKD), particularly in the context of hemodialysis, presents significant challenges. Despite existing legal frameworks, disparities in advance care planning practices are evident across Europe. The present perspective introduces a multidisciplinary model, initiated in 2019. This model incorporates a specialized team comprising a nephrologist, a psychologist, a palliative care specialist, and an anesthesiologist/intensivist. Through this collaborative approach, we aimed to comprehensively address the intricate medical, emotional, and psychological dimensions in advance care planning. In this point of view, we discuss the strengths of our model, its potential for European Nephrology, and advocate for guidelines to enhance advance care planning implementation within the nephrology community.
PubMed: 38941001
DOI: 10.1007/s40620-024-02002-w -
The Oncologist Jun 2024Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and...
BACKGROUND
Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and end-of-life (EOL) care. We aimed to evaluate patients' current ACP and EOL care status.
PATIENTS AND METHODS
We conducted a cohort study on 205 patients referred to oncologists at a Korean tertiary hospital between 2017 and 2022. We collected information on sociodemographic factors, cancer treatment, palliative care consultation, ACP, legal documents on life-sustaining treatment (LST) decisions, and aggressiveness of EOL care.
RESULTS
With a median follow-up time of 18.3 months: 159 patients died; median overall survival: 20.3 months. Of the 159 patients, 11 (6.9%) and 63 (39.6%) had advance directive (AD) and LST plans, respectively, whereas 85 (53.5%) had neither. Among the 63 with LST plans, 10 (15.9%) and 53 (84.1%) completed their forms through self-determination and family determination, respectively. Of the 159 patients who died, 102 (64.2%) received palliative care consultation (median time: 44 days from the first consultation to death) and 78 (49.1%) received aggressive EOL care. Those receiving palliative care consultations were less likely to receive aggressive EOL care (83.3% vs 32.4%, P < .001), and more likely to use more than 3 days of hospice care at EOL (19.6% vs 68.0%, P < .001).
CONCLUSIONS
The right to self-determination remains poorly protected among patients with glioblastoma, with nearly 90% not self-completing AD or LST plan. As palliative care consultation is associated with less aggressive EOL care and longer use of hospice care, physicians should promptly introduce patients to ACP conversations and palliative care consultations.
PubMed: 38940449
DOI: 10.1093/oncolo/oyae159 -
The American Journal of Bioethics : AJOB Jul 2024
Topics: Humans; Decision Making; Third-Party Consent; Advance Directives; United States; Proxy
PubMed: 38913458
DOI: 10.1080/15265161.2024.2353815 -
The American Journal of Bioethics : AJOB Jul 2024
Topics: Humans; Decision Making; Family; Proxy; Third-Party Consent; Advance Directives
PubMed: 38913457
DOI: 10.1080/15265161.2024.2353817 -
Journal of Palliative Medicine Jun 2024The objective of this study was to examine the association between portal use and end-of-life (EOL) outcomes in the last year of life. A retrospective cohort ( =...
The objective of this study was to examine the association between portal use and end-of-life (EOL) outcomes in the last year of life. A retrospective cohort ( = 6,517) study at Kaiser Permanente Colorado among adults with serious illness deceased between January 1, 2016, and June 30, 2019. Portal use was categorized into engagement types: no use, nonactive, active without a provider, and active with a provider. EOL outcomes were hospitalizations in the month before death, last-year advance directive completion, and hospice use. Association between EOL outcomes and levels of portal use was assessed using χ statistics and generalized linear models. Higher portal engagement types were associated with higher rates of hospitalizations ( = 0.0492), advance directive completion ( = 0.0226), and hospice use ( = 0.0070). Portal use in the last year of life was associated with increases in a poor EOL outcome, hospitalizations, and beneficial EOL outcomes, advance directives, and hospice care.
PubMed: 38904086
DOI: 10.1089/jpm.2023.0610 -
Archives of Gerontology and Geriatrics May 2024Dementia may reduce individuals' capacity for autonomy and decision-making competence. Advance directives are subject to theoretical bioethical debate as tools to... (Review)
Review
Dementia may reduce individuals' capacity for autonomy and decision-making competence. Advance directives are subject to theoretical bioethical debate as tools to safeguard or extend autonomy in dementia. However, the extent and manner in which advance directives are actually used for these purposes in practice remain less examined. We aimed to examine how advance directives are used as tools for individual autonomy in dementia care. We systematically searched six databases and performed a thematic analysis and synthesis of included reviews based on an original model of six autonomy-relevant dimensions of advance directives. A total of 18 reviews met the inclusion criteria. We identified 12 themes across six dimensions. We found a lack of knowledge integration on the actual use of advance directives for autonomy in dementia care. Evidence suggests significant variation in the autonomy-relevant dimensions of advance directives, with a tendency towards an inconsistent or low level of implementation as a tool for autonomy. Further reviews and primary studies on all aspects of the use of advance directives for autonomy in dementia care would contribute significantly to dementia research and practice.
PubMed: 38901137
DOI: 10.1016/j.archger.2024.105498 -
The American Journal of Hospice &... Jun 2024The COVID-19 pandemic necessitated the transition from in person to virtual advance care planning (ACP) engagement efforts. This pilot initiative evaluated virtual group...
BACKGROUND
The COVID-19 pandemic necessitated the transition from in person to virtual advance care planning (ACP) engagement efforts. This pilot initiative evaluated virtual group visits (GVs) and in-person GVs for ACP to determine their feasibility and effectiveness.
METHODS
Participants included patients in a Geriatric Medicine clinic who were referred by their primary care physician to an ACP GVs intervention. The ACP GVs had 2 sessions, led by clinicians with ACP expertise who facilitated a discussion on patients' values, goals, and preferences. Participants were provided with technical assistance to support use of the virtual platform. Evaluation included an ACP readiness survey, post-session feedback, GV observations, and electronic health record review at baseline and a 6 month follow-up for goals of care documentation and advance directives.
RESULTS
Seventy patients attended 46 ACP GVs from August 2019 to February 2022, including 16 in-person GVs and 54 virtual GVs. At a 6 month follow-up, for virtual GVs participants (n = 54), goals of care documentation increased from 31% to 93%, and advance directives increased from 22% to 30%. For in-person GVs participants (n = 16), goals of care documentation increased from 25% to 100%, and advance directives increased from 69% to 75%. All surveyed patients in both formats would recommend ACP GVs.
CONCLUSION
ACP GVs are feasible and effective for supporting ACP, demonstrating an increase in both goals of care conversations and advance directives completion.
PubMed: 38896819
DOI: 10.1177/10499091241233687 -
Journal of the American Geriatrics... Jun 2024The population of people living with dementia (PLwD) continues to grow in Japan where advance care planning (ACP) for PLwD is relatively new. Our aim was to evaluate the...
BACKGROUND
The population of people living with dementia (PLwD) continues to grow in Japan where advance care planning (ACP) for PLwD is relatively new. Our aim was to evaluate the feasibility and cultural acceptability of a dementia-specific ACP communication skills toolkit for Japanese primary care clinicians.
METHODS
We delivered 13 training sessions in primary care clinics across central Japan and conducted a post-training survey to assess whether the toolkit increased confidence in dementia-specific ACP communication skills and the acceptability of the toolkit with the following four statements: (1) The language in the sessions was clear, (2) The sessions took an appropriate amount of time to complete, (3) The design of the sessions was an effective educational method, and (4) The sessions were culturally appropriate for communication with Japanese patients with dementia and their family members. We asked participants to respond using a 5-point Likert scale from strongly agree to strongly disagree.
RESULTS
All participants were Japanese and included 80 physicians (mean age 39.8 years), 33 nurses (mean age 45.7 years), and 58 other participants (mean age 42.9 years), who were 30.0%, 87.9%, and 55.2% female, respectively. Most participants practiced in rural settings. In pre- post-comparisons, participant confidence increased in determining capacity, understanding dementia prognosis, goals of care, eliciting surrogates, recommending self-care practices to families, and leading family meetings (all p < 0.001). Most participants strongly agreed or agreed that the toolkit was an effective method (96.9%), took an appropriate amount of time (94.5%), contained clear language (89.8%), and was culturally appropriate (73.6%).
CONCLUSIONS
Dementia-specific ACP communication skills toolkit can be delivered in Japan. Japanese primary care clinicians generally felt the dementia-specific ACP toolkit increased their confidence in ACP communication skills and was acceptable. The language, time, and design were well received, though further work is needed to improve the cultural appropriateness of the toolkit.
PubMed: 38895937
DOI: 10.1111/jgs.19040