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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 -
Medicine, Health Care, and Philosophy Jun 2024The shape and function of ethical imperatives may vary if the context is an interaction between strangers, or those who are well acquainted. This idea, taken up from...
The shape and function of ethical imperatives may vary if the context is an interaction between strangers, or those who are well acquainted. This idea, taken up from Stephen Toulmin's distinction between an "ethics of strangers" and an "ethics of intimacy", can be applied to encounters in healthcare. There are situations where healthcare personnel (HCP) know their patients (corresponding to an "ethics of intimacy") and situations where HCP do not know their patients (corresponding to "an ethics of strangers"). Does it make a difference for normative imperatives that follow from central concepts and principles in medical ethics whether HCP know their patients or not? In our view, this question has not yet been answered satisfactorily. Once we have clarified what is meant by "knowing the patient", we will show that the distinction is particularly relevant with regard to some thorny questions of autonomy in healthcare (e.g., regarding advance directives or paternalism in the name of autonomy), whereas the differences with regard to imperatives following from the principles of justice and beneficence seem to be smaller. We provide a detailed argument for why knowing the patient is ethically valuable in encounters in healthcare. Consequently, healthcare systems should provide fertile ground for HCP to get to know their patients, and structures that foster therapeutic continuity. For this to succeed, a number of questions still need to be clarified, which is an important task for medical ethics.
PubMed: 38850498
DOI: 10.1007/s11019-024-10213-y -
JMIR Aging May 2024Advance care planning (ACP) is a process that involves patients expressing their personal goals, values, and future medical care preferences. Digital applications may...
BACKGROUND
Advance care planning (ACP) is a process that involves patients expressing their personal goals, values, and future medical care preferences. Digital applications may help facilitate this process, though their use in older adults has not been adequately studied.
OBJECTIVE
This pilot study aimed to evaluate the reach, adoption, and usability of Koda Health, a web-based patient-facing ACP platform, among older adults.
METHODS
Older adults (aged 50 years and older) who had an active Epic MyChart account at an academic health care system in North Carolina were recruited to participate. A total of 2850 electronic invitations were sent through MyChart accounts with an embedded hyperlink to the Koda platform. Participants who agreed to participate were asked to complete pre- and posttest surveys before and after navigating through the Koda Health platform. Primary outcomes were reach, adoption, and System Usability Scale (SUS) scores. Exploratory outcomes included ACP knowledge and readiness.
RESULTS
A total of 161 participants enrolled in the study and created an account on the platform (age: mean 63, SD 9.3 years), with 80% (129/161) of these participants going on to complete all steps of the intervention, thereby generating an advance directive. Participants reported minimal difficulty in using the Koda platform, with an overall SUS score of 76.2. Additionally, knowledge of ACP (eg, mean increase from 3.2 to 4.2 on 5-point scale; P<.001) and readiness (eg, mean increase from 2.6 to 3.2 on readiness to discuss ACP with health care provider; P<.001) significantly increased from before to after the intervention.
CONCLUSIONS
This study demonstrated that the Koda Health platform is feasible, had above-average usability, and improved ACP documentation of preferences in older adults. Our findings indicate that web-based health tools like Koda may help older individuals learn about and feel more comfortable with ACP while potentially facilitating greater engagement in care planning.
Topics: Humans; Advance Care Planning; Pilot Projects; Male; Female; Middle Aged; Feasibility Studies; Aged; North Carolina; Internet-Based Intervention; Internet; Surveys and Questionnaires
PubMed: 38845403
DOI: 10.2196/54128 -
Death Studies Jun 2024Personal preferences influence end-of-life (EOL) decision-making and are commonly associated with engagement in the advance care planning process. Completing an advance...
Personal preferences influence end-of-life (EOL) decision-making and are commonly associated with engagement in the advance care planning process. Completing an advance directive (AD) allows individuals to formally document and legally report their EOL care preferences. This study explored how two aspects of religion-personal religious beliefs and formal religion practices-may be associated with advance care planning. A national sample of healthy adults in the United States aged 50 years and older (n = 514; 74% cisgender women) completed surveys detailing their EOL preferences, advance care planning, personal religious beliefs, and formal religion practices. Using Ordinary Least Squares (OLS), we find that a higher belief in God's role at EOL was associated with a higher preference for life-prolonging measures. Using logistic regression, those with a higher belief in God's role at EOL had lower odds of AD completion. Multiple dimensions of religion should be considered when studying health care preferences and decision-making.
PubMed: 38843029
DOI: 10.1080/07481187.2024.2361755 -
AIDS Care Jun 2024With advances in medicine, HIV has evolved into a chronic condition for people living with HIV (PLWH). However, many PLWH do not engage in advance care planning (ACP),...
With advances in medicine, HIV has evolved into a chronic condition for people living with HIV (PLWH). However, many PLWH do not engage in advance care planning (ACP), and it occurs primarily in acute situations. ACP may improve preparedness for end-of-life care and increase advance directive (AD) documentation. Searches of PubMed, PsycInfo, and CINHAL were conducted to synthesize current ACP-related randomized controlled trials on two separate populations: (1) PLWH and (2) older adults without HIV. Two articles met inclusion criteria for PLWH, and the intervention had a significant improvement in ACP engagement. For the latter population, thirteen of fourteen articles had interventions that led to statistically significant increases in ACP engagement. This review underscores the need to further investigate the best strategies to improve ACP among PLWH and provides insights from existing ACP interventions for the general population to be adapted to the needs of PLWH.
PubMed: 38838033
DOI: 10.1080/09540121.2024.2361822 -
Giornale Italiano Di Cardiologia (2006) Jun 2024The Italian law 217/2019 on "Informed consent and advance directives" is an important step forward in the redefinition of patient-doctor relationships. The law points...
The Italian law 217/2019 on "Informed consent and advance directives" is an important step forward in the redefinition of patient-doctor relationships. The law points out the principles of the decisional autonomy and freedom of the patient to choose the treatment options. However, it is underestimated and largely unapplied by the Italian cardiologists. The main elements of patient-doctor communication are present in the law. The most important is the time devoted to the patient-doctor relationship, necessary to ease the disease awareness. This time is clearly emphasized in the law, but the healthcare institutions did not arrange for the appropriate organizational procedures. Through the advance directives (ADs) the patients may express their own wishes about healthcare treatments, as well as their consent or refusal regarding the diagnostic or therapeutical doctors' suggestions, allowing their respect in case they become incompetent. This right is supported by the patients' designation of a healthcare proxy, who can interact for them with the healthcare team. However, after 6 years since the law enactment, only 0.4% of the Italian citizens signed ADs, due to insufficient information and organization by the healthcare authorities. In the Law, the advance care planning is closely related to ADs. In this process, the adults can understand and share their personal values, life goals and preferences, in order to define the potential future medical care and to discuss all the issues with family and physicians. These processes can be integrated in a broader shared decision-making, a strong tool of the patient-doctor alliance.
Topics: Italy; Advance Directives; Humans; Informed Consent; Physician-Patient Relations; Communication; Personal Autonomy; Decision Making; Time Factors
PubMed: 38808933
DOI: 10.1714/4269.42461 -
Bundesgesundheitsblatt,... May 2024A diagnosis of dementia places a heavy burden on those affected and their families. Often, difficult decisions must be made. Ideally, people with a new dementia...
BACKGROUND
A diagnosis of dementia places a heavy burden on those affected and their families. Often, difficult decisions must be made. Ideally, people with a new dementia diagnosis make informed decisions together with family members. Digital informational materials can be an important low-threshold resource for making informed decisions. They should provide comprehensive information about dementia, including both primary prevention (risk factors for the onset of dementia) and later treatment options. They should also cover precautionary measures that can make future decisions easier (e.g., advance directives, power of attorney). However, there is currently no comprehensive overview of the various online resources for dementia-related information.
METHODS
This study explores digital informational materials on dementia for different target groups in the German-speaking area using an innovative systematic search strategy. It examines how these materials are structured in terms of risk factors, treatment options, and decision support. This methodological approach is new, so it is described and discussed in detail.
RESULTS
The results show that most materials are intended for people with dementia and their families. Treatment measures are often discussed without explaining the risk factors they are meant to address. There is little focus on preventive measures that could support decision-making.
DISCUSSION
The unbalanced presentation could lead to certain measures being difficult to understand (for laypeople) or to misinterpretation of risk factors. Important implications are drawn from these findings.
PubMed: 38806745
DOI: 10.1007/s00103-024-03893-7 -
International Journal of Nursing... May 2024To identify characteristics associated with an intention to complete advance directives (ADs) and end-of-life treatment preferences for outpatients with heart failure...
OBJECTIVE
To identify characteristics associated with an intention to complete advance directives (ADs) and end-of-life treatment preferences for outpatients with heart failure (HF).
METHODS
A cross-sectional, analytical study. Sociodemographic and clinical data were collected from 108 patients with HF in an outpatient clinic in São Paulo, SP, Brazil. Quality of life (QoL) was assessed using the Minnesota Living with Heart Failure Questionnaire; knowledge about HF and the intention to complete ADs were assessed using a script. The relationships among variables were assessed through the chi-square and Mann-Whitney tests, with p < 0.05 considered significant.
RESULTS
The intention to complete ADs was significantly associated with reporting adherence to pharmacological recommendations (99% vs. 88.1%, p = 0.02), worse QoL (29.7 ± 18.2 vs. 20.9 ± 11.0; p = 0.0336), perceived knowledge about HF (89.7% vs. 63.6%, p = 0.0495), not wishing the healthcare providers would decide about treatment (27.3% vs. 2.15, p = 0.0026), and considering ADs useful (91.8% vs. 27.3%, p < 0.001). End-of-life treatment preferences included living as long as possible (50.5%), not being sedated (37.1%), and staying close to family and friends for as long as possible (32.0%).
CONCLUSIONS
Characteristics associated with an intention to complete ADs and end-of-life treatment preferences were identified in patients with HF.
IMPLICATIONS FOR NURSING PRACTICE
These results can help facilitate patients' completion of their ADs or activate their intention to maximize opportunities to exercise autonomy.
PubMed: 38804834
DOI: 10.1111/2047-3095.12474 -
Medicina (Kaunas, Lithuania) May 2024: Mental capacity is a fundamental aspect that enables patients to fully participate in various healthcare procedures. To assist healthcare professionals (HCPs) in... (Comparative Study)
Comparative Study Meta-Analysis Review
: Mental capacity is a fundamental aspect that enables patients to fully participate in various healthcare procedures. To assist healthcare professionals (HCPs) in assessing patients' capacity, especially in the mental health field, several standardized tools have been developed. These tools include the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR), and the Competence Assessment Tool for Psychiatric Advance Directives (CAT-PAD). The core dimensions explored by these tools include Understanding, Appreciation, Reasoning, and Expression of a choice. : This meta-analysis aimed to investigate potential differences in decision-making capacity within the healthcare context among groups of patients with bipolar disorders (BD) and schizophrenia spectrum disorders (SSD). : A systematic search was conducted on Medline/Pubmed, and Scopus. Additionally, Google Scholar was manually inspected, and a manual search of emerging reviews and reference lists of the retrieved papers was performed. Eligible studies were specifically cross-sectional, utilizing standardized assessment tools, and involving patients diagnosed with BD and SSD. Data from the studies were independently extracted and pooled using random-effect models. Hedges' was used as a measure for outcomes. : Six studies were identified, with three studies using the MacCAT-CR, two studies the MacCAT-T, and one the CAT-PAD. The participants included 189 individuals with BD and 324 individuals with SSD. The meta-analysis revealed that patients with BD performed slightly better compared to patients with SSD, with the difference being statistically significant in the domain of Appreciation (ES = 0.23, 95% CI: 0.01 to 0.04, = 0.037). There was no statistically significant difference between the two groups for Understanding (ES = 0.09, 95% CI:-0.10 to 0.27, = 0.352), Reasoning (ES = 0.18, 95% CI: -0.12 to 0.47, = 0.074), and Expression of a choice (ES = 0.23, 95% CI: -0.01 to 0.48, = 0.60). In the sensitivity analysis, furthermore, when considering only studies involving patients in symptomatic remission, the difference for Appreciation also resulted in non-significant (ES = 0.21, 95% CI: -0.04 to 0.46, = 0.102). : These findings indicate that there are no significant differences between patients with BD and SSD during remission phases, while differences are minimal during acute phases. The usefulness of standardized assessment of capacity at any stage of the illness should be considered, both for diagnostic-therapeutic phases and for research and advance directives. Further studies are necessary to understand the reasons for the overlap in capacity between the two diagnostic categories compared in this study.
Topics: Humans; Bipolar Disorder; Decision Making; Informed Consent; Mental Competency; Schizophrenia
PubMed: 38792947
DOI: 10.3390/medicina60050764