BACKGROUND: Advance care planning involves discussing individuals\' future medical treatment and care preferences. Nurses, due to their close relationships with patients and families, may be well-positioned to lead these discussions. Exploring the components and characteristics of nurse-led ACP interventions is essential for enhancing their implementation, effectiveness, and sustainability.
OBJECTIVE: This scoping review aimed to explore the characteristics of nurse-led ACP interventions in adult patients, identify the populations and settings where these interventions have been utilized, and the outcomes of these interventions in the U.S.
METHODS: A scoping review was conducted following Arksey and O\'Malley\'s five-stage framework. Using keywords related to nurse-led ACP interventions, a comprehensive search was performed across PubMed, Web of Science, CINAHL, EMBASE, and PsycINFO databases.
RESULTS: Twelve studies met the inclusion criteria. These studies were conducted in varied settings. Registered nurses, oncology nurse navigators, and other specialized nurses primarily delivered nurse-led ACP interventions. The interventions ranged from one to two sessions and utilized various models and resources such as the Five Wishes and Respecting Choices.
CONCLUSIONS: Nurse-led ACP interventions have shown significant positive outcomes, including increased engagement in ACP, improved attitudes towards ADs, higher completion rates of ADs, and enhanced patient-surrogate congruence. These interventions are well-received by patients and can be implemented in diverse settings. However, a general guideline regarding nurse-led ACP interventions is needed to address the specific duration, sessions, and mode of delivery required for their optimal effectiveness.

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Health care professionals can enhance conversations about serious illness and medical decision-making by adopting a transparent, standardized approach. This article critiques established communication strategies, which often emphasize patient values and goals without providing the necessary medical information to align these goals with a shared understanding of prognosis. We propose an alternate strategy that (1) provides detailed explanations of medical conditions at the beginning of the conversation, (2) includes support persons in discussions, (3) considers capacity, and (4) offers tailored advice by clinicians. The proposed framework aims to provide patients (or their delegates) with the information they need to integrate their values in pursuit of well-informed medical decisions. This strategy builds trust by providing honest information about medical conditions and their trajectories. It empowers decision makers to consider realistic outcomes, allowing them to accept or reject treatments in accordance with their preferences. This article presents a thorough step-by-step guide on how to conduct a serious illness conversation and facilitate medical decision-making, including a supplement that provides example phrases for use in clinical practice.

AbstractIn this piece I discuss optimal approaches that providers may take when pursuing surrogate decision-making. A potential critical problem here is some providers\' approach differing from that of others. To the extent that this occurs, the results may be arbitrary, and the harm from this may be profound since this may affect, of course, even whether some of these patients will live or die. One factor possibly resulting in these differences is the moral weight providers place on what family members want when these outcomes differ from what they think patients would want. Providers now most commonly place greatest moral weight on following what patients would want to maximally respect their autonomy, but this view may clash with the view of others who see autonomy as more relational and thus based on prior and present social relations with others. Giving family members\' wants more moral weight is a radical departure from what providers do now and may increase these differences. I discuss here the rationales for and against these competing choices.

OBJECTIVE: People with multiple system atrophy (MSA) and their carers may have many concerns about their disease and the future. This survey of people with MSA and their carers aimed to increase understanding of end-of-life care and palliative care for this group.
METHODS: A survey was undertaken by the MSA Trust of people living with MSA and carers of those with the condition between August and October 2022.
RESULTS: 520 people responded: 215 people with MSA, 214 carers and 91 former carers. The modal class for age in people with MSA was 65-74 years, with 52% male. 76% of people living with MSA had thought to some extent about what they wanted to happen towards the end of their lives. 38% of respondents had discussed end-of-life care options with a healthcare professional and of those who had, over 81% found the conversation helpful. Nevertheless, for 37% of former carers, the death had been unexpected. Only a minority of people living with MSA had been referred for specialist palliative care. 65% of the former carers reported that they were satisfied with the quality of end-of-life care.
CONCLUSIONS: People with MSA and their carers continue to face many complex physical and emotional issues that would benefit from palliative care. Discussions about care at the end of life were generally perceived as helpful, but although the deterioration was often discussed, many families seemed unprepared for the death. Palliative care services were involved but this appeared limited.

Over the past decades, literature in dementia ethics has extensively looked at moral questions revolving around the care of older people living with dementia. Particularly prevalent are autonomy-related concerns regarding topics such as advance directives. In this paper, we argue that these discussions are crucially premised on how dementia is understood and represented. Despite the multiplicity of dementia presentations in people, the dominant discourse predominantly frames dementia as \'monstrous,\' an \'enemy,\' a destructive experience in need of eradication. We contend that such a monolithic approach, from a moral standpoint, is problematic in several respects. Indeed, framing heavily influences the way dementia is understood and experienced, leading to stigmatization, bias, and distress. Not only does it influence decisions and discussions on advance directives, but we argue that this flawed understanding of dementia is rooted in and contributes to epistemic harm. In the first section, we introduce the ethics of advance directives. More specifically, we introduce the view developed by Dworkin who has largely influenced the debate by making the case for advance directives by grounding them in the principles of autonomy and beneficence. In the second section, we show how dementia is still mostly framed monolithically as a \'destructive experience.\' We then show that this framing is problematic because it oversteps the different pathologies dementia implies, which leads to an inaccurate representation of the condition. In the third section, we present possible alternative framings: dementia as normal aging, a person-centered care framework, and an embodied view. In the fourth section, drawing on recent developments in the epistemic injustice literature, we explore how maintaining and utilizing flawed understandings of dementia may lead to distinct moral-epistemic harms for those living with dementia and inform ongoing discussions on advance directives. Finally, in the concluding section, we return to the case of advance directives and what the implications of rethinking dementia are.

BACKGROUND: Surrogates, proxies, and clinicians making shared treatment decisions for patients who have lost decision-making capacity often fail to honor patients\' wishes, due to stress, time pressures, misunderstanding patient values, and projecting personal biases. Advance directives intend to align care with patient values but are limited by low completion rates and application to only a subset of medical decisions. Here, we investigate the potential of large language models (LLMs) to incorporate patient values in supporting critical care clinical decision-making for incapacitated patients in a proof-of-concept study.
METHODS: We simulated text-based scenarios for 50 decisionally incapacitated patients for whom a medical condition required imminent clinical decisions regarding specific interventions. For each patient, we also simulated five unique value profiles captured using alternative formats: numeric ranking questionnaires, text-based questionnaires, and free-text narratives. We used pre-trained generative LLMs for two tasks: 1) text extraction of the treatments under consideration and 2) prompt-based question-answering to generate a recommendation in response to the scenario information, extracted treatment, and patient value profiles. Model outputs were compared with adjudications by three domain experts who independently evaluated each scenario and decision.
CONCLUSIONS: Automated extractions of the treatment in question were accurate for 88% (n = 44/50) of scenarios. LLM treatment recommendations received an average Likert score by the adjudicators of 3.92 of 5.00 (five being best) across all patients for being medically plausible and reasonable treatment recommendations, and 3.58 of 5.00 for reflecting the documented values of the patient. Scores were highest when patient values were captured as short, unstructured, and free-text narratives based on simulated patient profiles. This proof-of-concept study demonstrates the potential for LLMs to function as support tools for surrogates, proxies, and clinicians aiming to honor the wishes and values of decisionally incapacitated patients.

OBJECTIVE: Advance directives (AD) are based on state-specific statutes that vary in structure, terminology, and options. This variability leads to inconsistent end-of-life (EOL) care for patients who have executed an AD in one state but fall ill in another state. This study revisits a 2002 article that identified considerable differences in ADs to determine whether ADs have become more uniform.
METHODS: ADs from all 50 states and the District of Columbia were examined to determine the frequency of document types and seven key issues. The results were = compared to the 2002 study using non-parametric approaches. Mean numbers of key issues were compared using t-tests and one-way ANOVA.
RESULTS: Consistent with 2002, three states in 2023 provide statutes for Health Care Power of Attorney (HCPOA). However, states offering a combined HCPOA, and living will (LW), deemed an advance directive for health care (ADHC), increased from 13 to 30. Between both studies, Long Term Care increased significantly in LW and ADHC, while Artificial Sustenance significantly increased in LW. Despite the rising prevalence of Alzheimer\'s in the United States, only 10% of states included this issue in 2023.
CONCLUSIONS: Despite evolving healthcare trends, minimal revisions have been made to ADs since 2002. This lack of uniformity can cause confusion regarding proper understanding of EOL wishes. The authors recommend that the Uniform Act for Advance Directives be revisited to promote greater uniformity in ADs and ensure that individuals\' preferences are understood and respected across different states.

OBJECTIVE: Clinicians in the emergency department (ED) frequently encounter seriously ill patients at a time when advance directives may be pivotal in improved clinician decision-making. The objectives of this study were to identify the prevalence of advanced directives in ED patients, as well as patterns of advance care discussions between patients and providers. This study describes patients\' perceptions and expectations of such serious illness discussions in an emergency care setting with the expectation of including patients as strategic members of the care team.
METHODS: Trained research assistants in two emergency departments surveyed patients over age 65, or their caregivers, from July 2016 to August 2018. Patients were verbally administered a standard survey tool related to advance directives and advance care planning.
RESULTS: 497 out of 877 patients completed surveys (59.4%). 50% of patients reported having an advance care planning document. The large majority (92%) of patients with an advance directive had not been asked about it during their ED visit. When questioned about their personal preferences, 79% of patients thought emergency physicians should be aware of their wishes regarding life-sustaining treatments and end-of-life care. Paradoxically, only 38% expressed a desire to discuss advance care plans with an ED clinician.
CONCLUSIONS: Older patients expect emergency clinicians to be aware of their care preferences, yet most are not asked about these care preferences in the ED. The large gap between patient preference and reality suggests the need for more targeted discussion by ED clinicians and translation of patient perspectives into system healthcare improvements. Future studies should explore barriers to advance care planning in the ED as well as patient preferences for these conversations to support a true healthcare learning system.

In New York State, the Health Care Proxy Law allows patients to designate a person they trust to make medical decisions on their behalf should they lose the capacity to do so. In an Intensive Care Unit (ICU) setting, identification of a health care proxy (HCP) is especially important as patients are at heightened risk of losing decision-making capacity during their clinical course. While our hospital has guidelines to solicit and correctly document the patient\'s HCP information, it is not routinely done. Missing or incomplete HCP documentation is a prevalent issue, with lack of patient education, physical document issues, and time and workflow constraints commonly cited as barriers. We describe the implementation of a small-scale quality improvement project to increase the percentage of completed HCP documentation in our ICU through multi-faceted interventions targeting education, workflow, access, and technology.