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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 -
Journal of the American Medical... Jun 2024To describe the rate, timing, and pattern of changes in advance directives (ADs) of do not resuscitate (DNR) and do not hospitalize (DNH) orders among new admissions to...
OBJECTIVES
To describe the rate, timing, and pattern of changes in advance directives (ADs) of do not resuscitate (DNR) and do not hospitalize (DNH) orders among new admissions to nursing homes (NHs).
DESIGN
A retrospective cohort study.
SETTING AND PARTICIPANTS
Admissions to all publicly funded NHs in Ontario, Canada, between January 1, 2013, and December 31, 2017.
METHODS
Residents were followed until discharged from incident NH stay, death, or were still present at the end of study (December 31, 2019). They were categorized into 3 mutually exclusive baseline composite AD groups: Full Code, DNR Only, and DNR+DNH. We used Poisson regression models to estimate the incidence rate ratios of AD change between different AD groups and different decision makers for personal care, adjusted for baseline clinical and sociodemographic variables.
RESULTS
A total of 102,541 NH residents were eligible for inclusion. Residents with at least 1 AD change accounted for 46% of Full Code, 30% of DNR Only, and 25% of DNR+DNH group. Median time to first AD change ranged between 26 and 55 weeks. For Full Code and DNR Only residents, the most frequent change was to an AD 1 level lower in aggressiveness or intervention, whereas for DNR+DNH residents the most frequent change was to DNR Only. About 16% of residents had 2 or more AD changes during their stay. After controlling for covariates, residents with a DNR-only order or DNR+DNH orders at admission and those with a surrogate decision maker were associated with lower AD change rates.
CONCLUSIONS AND IMPLICATIONS
Measuring AD adherence rates that are documented only at a particular time often underestimates the dynamics of AD changes during a resident's stay and results in an inaccurate measure of the effectiveness of AD on resident care. There should be more frequent reviews of ADs as they are quite dynamic. Mandatory review after an acute change in a resident's health would ensure that ADs are current.
PubMed: 38885932
DOI: 10.1016/j.jamda.2024.105090 -
Neurocritical Care Jun 2024People with disorders of consciousness (DoC) are characteristically unable to synchronously participate in decision-making about clinical care or research. The inability...
People with disorders of consciousness (DoC) are characteristically unable to synchronously participate in decision-making about clinical care or research. The inability to self-advocate exacerbates preexisting socioeconomic and geographic disparities, which include the wide variability observed across individuals, hospitals, and countries in access to acute care, expertise, and sophisticated diagnostic, prognostic, and therapeutic interventions. Concerns about equity for people with DoC are particularly notable when they lack a surrogate decision-maker (legally referred to as "unrepresented" or "unbefriended"). Decisions about both short-term and long-term life-sustaining treatment typically rely on neuroprognostication and individual patient preferences that carry additional ethical considerations for people with DoC, as even individuals with well thought out advance directives cannot anticipate every possible situation to guide such decisions. Further challenges exist with the inclusion of people with DoC in research because consent must be completed (in most circumstances) through a surrogate, which excludes those who are unrepresented and may discourage investigators from exploring questions related to this population. In this article, the Curing Coma Campaign Ethics Working Group reviews equity considerations in clinical care and research involving persons with DoC in the following domains: (1) access to acute care and expertise, (2) access to diagnostics and therapeutics, (3) neuroprognostication, (4) medical decision-making for unrepresented people, (5) end-of-life decision-making, (6) access to postacute rehabilitative care, (7) access to research, (8) inclusion of unrepresented people in research, and (9) remuneration and reciprocity for research participation. The goal of this discussion is to advance equitable, harmonized, guideline-directed, and goal-concordant care for people with DoC of all backgrounds worldwide, prioritizing the ethical standards of respect for autonomy, beneficence, and justice. Although the focus of this evaluation is on people with DoC, much of the discussion can be extrapolated to other critically ill persons worldwide.
PubMed: 38872033
DOI: 10.1007/s12028-024-02012-3