A systematic review on advance care planning for people living with HIV: insights from the studies of persons without HIV.

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.

Aligning goals with care: Advance directives in older adults with implantable cardioverter-defibrillators.

BACKGROUND: Patients ≥80 with implantable cardioverter-defibrillators (ICDs) have high rates of hospitalization and mortality, yet few have documented advance directives. We sought to determine the prevalence of advance directives in adults ≥80 years with ICDs, focusing on those with frailty and cognitive impairment. METHODS: Prospective cohort study (July 2016-May 2019) in an electrophysiology clinic. Presence of advance directives (health care proxies [HCP] and living wills [LW], or medical orders for life-sustaining treatment [MOLST]) was determined by medical record review. Frailty and cognitive impairment were screened using 4-m gait speed and Mini-Cog. RESULTS: 77 Veterans were evaluated. Mean age 84 years, 100% male, 70% frail. Overall, 52 (68%) had an HCP and 37 (48%) had a LW/MOLST. Of 67 with cognitive testing, 36% were impaired. HCP documentation was similar among frail and non-frail (69% vs. 65%). LW/MOLST was more prevalent among frail versus non-frail (52% vs. 39%). There was no difference in HCP documentation by cognitive status (67%). A LW/MOLST was more frequent for cognitively impaired versus non-impaired (50% vs. 42%). Among 19 Veterans who were frail and cognitively impaired, 14 (74%) had an HCP and 11 (58%) had a LW/MOLST. CONCLUSIONS: Most Veterans had a documented advance directive, but a significant minority did not. Simple frailty and cognitive screening tools can rapidly identify patients for whom discussion of advance directives is especially important.

Advance Consent in Acute Stroke Trials: Survey of Canadian Stroke Physicians.

Advance consent presents a potential solution to the challenge of obtaining informed consent for participation in acute stroke trials. Clinicians in stroke prevention clinics are uniquely positioned to identify and seek consent from potential stroke trial participants. To assess the acceptability of advance consent to Canadian stroke clinic physicians, we performed an online survey. We obtained 58 respondents (response rate 35%): the vast majority (82%) expressed comfort with obtaining advance consent and 92% felt that doing so would not be a significant disruption to clinic workflow. These results support further study of advance consent for acute stroke trials.

Advance Consent in Acute Stroke Trials: Survey of Canadian Research Ethics Board Chairs.

Advance consent could allow individuals at high risk of stroke to provide consent before they might become eligible for enrollment in acute stroke trials. This survey explores the acceptability of this novel technique to Canadian Research Ethics Board (REB) chairs that review acute stroke trials. Responses from 15 REB chairs showed that majority of respondents expressed comfort approving studies that adopt advance consent. There was no clear preference for advance consent over deferral of consent, although respondents expressed significant concern with broad rather than trial-specific advance consent. These findings shed light on the acceptability of advance consent to Canadian ethics regulators.

Limits of advance directives in decision-making around food and nutrition in patients with dementia.

Advance directives are critically important for capable individuals who wish to avoid the burdens of life-prolonging interventions in the advanced stages of dementia. However, this paper will argue that advance directives should have less application to questions about feeding patients during the clinical course of dementia than often has been presumed. The argument will be framed within the debate between Ronald Dworkin and Rebecca Dresser regarding the moral authority of precedent autonomy to determine an individual's future end-of-life care plan. We will use a brief analysis of the positions taken in two important papers that come out of the Dworkin/Dresser debate and a hypothetical patient, John, who will be followed from diagnosis of dementia to death, to show how advance directives should apply to key points in the progression of his disease, particularly in relation to food and nutrition.

Advance directives for oral feeding in dementia: a response to Shelton and Geppert.

In a recent paper in JME, Shelton and Geppert use an approach by Menzel and Chandler-Cramer to sort out ethical dilemmas about the oral feeding of patients in advanced dementia, ultimately arguing that the usefulness of advance directives about such feeding is highly limited. They misunderstand central aspects of Menzel's and Chandler-Cramer's approach, and in making their larger claim that such directives are much less useful than typically presumed, they fail to account for five important elements in writing good directives for dementia and implementing them properly: (1) Directives should be paired with appointment of trusted agents. (2) Appointed agents' authority can be greatly weakened without advance directives to guide them. (3) Directives' implementation does not require clinically precise assessment of dementia's stage. (4) Palliative support is typically required for withholding of oral feeding to be compassionate. (5) The central purpose of stopping feeding is often not the avoidance of suffering but not prolonging unwanted life.

Psychometric properties of Persian version of advance care planning questionnaire among older adults in Iran.

INTRODUCTION: Advanced age is associated with life-threatening conditions at the end of life. Many of these persons at the end of their lives cannot make decisions because of the variable consciousness. They are able to make decisions and identify their care priorities, in a process called advanced care planning. So, an instrument is required for investigating ACP of the elderly population. This study was performed to determine the psychometric properties of the Persian version of the advanced care planning questionnaire(ACPQ) in elderly population referring to Tehran. METHOD: This methodological study was performed in five hospitals in 2021-2022. A total of 390 eligible elderlies were included. The psychometric assessment including translation, face validity, content validity were performed Alsothe exploratory factor analysis and confirmatory factor analysis were assessed. Reliability were done by internal consistency by assessing Cronbach alpha and stability was performed using test-retest. RESULTS: The face validity of the instrument was performed with minor changes. The content validity index for all of the items was above 0.79. In EFA four factors was extracted also CFA showed that the four-factor model has a good fit of the data (RMSEA: 0.04; NFI: 0.97 CFI: 0.99; IFI: 0.99; RFI: 0.96; AGFI: 0.87; GFI 0/90; standardized RMR: 0.02). Cronbach alpha and ICC were 0.72-0.94 and 0.85-0.96, respectively. CONCLUSION: The Persian version of the advance care planning questionnaire has desirable psychometric properties for measuring the advanced care planning of the elderly population. In addition, healthcare providers in Iran can employ this questionnaire in their practice and research.

A Personalized Patient Preference Predictor for Substituted Judgments in Healthcare: Technically Feasible and Ethically Desirable.

When making substituted judgments for incapacitated patients, surrogates often struggle to guess what the patient would want if they had capacity. Surrogates may also agonize over having the (sole) responsibility of making such a determination. To address such concerns, a Patient Preference Predictor (PPP) has been proposed that would use an algorithm to infer the treatment preferences of individual patients from population-level data about the known preferences of people with similar demographic characteristics. However, critics have suggested that even if such a PPP were more accurate, on average, than human surrogates in identifying patient preferences, the proposed algorithm would nevertheless fail to respect the patient's (former) autonomy since it draws on the 'wrong' kind of data: namely, data that are not specific to the individual patient and which therefore may not reflect their actual values, or their reasons for having the preferences they do. Taking such criticisms on board, we here propose a new approach: the Personalized Patient Preference Predictor (P4). The P4 is based on recent advances in machine learning, which allow technologies including large language models to be more cheaply and efficiently 'fine-tuned' on person-specific data. The P4, unlike the PPP, would be able to infer an individual patient's preferences from material (e.g., prior treatment decisions) that is in fact specific to them. Thus, we argue, in addition to being potentially more accurate at the individual level than the previously proposed PPP, the predictions of a P4 would also more directly reflect each patient's own reasons and values. In this article, we review recent discoveries in artificial intelligence research that suggest a P4 is technically feasible, and argue that, if it is developed and appropriately deployed, it should assuage some of the main autonomy-based concerns of critics of the original PPP. We then consider various objections to our proposal and offer some tentative replies.

Advance directives in the emergency department-a systematic review of the status quo.

BACKGROUND: Providing individualised healthcare in line with patient wishes is a particular challenge for emergency healthcare professionals. Documentation of patient wishes (DPW), e.g. as advance directives, can guide clinicians in making end-of-life decisions that respect the patient's wishes and autonomy. However, patient centered decisions are hindered by limited availability of DPWs in emergency settings. OBJECTIVE: This systematic review aims to congregate present data on recorded rates for DPW existence and availability in the emergency department (ED) as well as contributing factors for these rates. METHODS: We searched MEDLINE, Google Scholar, Embase and Web of Science databases in September 2023. Publications providing primary quantitative data on DPW in the ED were assessed. Publications referring only to a subset of ED patients (other than geriatric) and investigating DPW issued after admission were excluded. RESULTS: A total of 22 studies from 1996 to 2021 were included in the analysis. Most were from the US (n = 12), followed by Australia (n = 4), Canada (n = 2), South Korea, Germany, the United Kingdom and Switzerland (n = 1 each). In the general adult population presenting to the ED, 19.9-27.8% of patients reported having some form of DPW, but only in 6.8% or less it was available on presentation. In the geriatric population, DPW rates (2.6-79%) as well as their availability (1.1-48.8%) varied widely. The following variables were identified as positive predictors of having DPW, among others: higher age, poorer overall health, as well as sociodemographic factors, such as female gender, having children, being in a relationship, higher level of education or a recent previous presentation to hospital. CONCLUSIONS: Existence and availability of a recorded DPW among ED patients was low in general and even in geriatric populations mostly well below 50%. While we were able to gather data on prevalence and predictors, this was limited by heterogeneous data. We believe further research is needed to explore the quality of DPW and measures to increase both rates of existence and availability of DPW in the ED.

Oncologists' perspective on advance directives, a French national prospective cross-sectional survey - the ADORE study.

BACKGROUND: The often poor prognosis associated with cancer necessitates empowering patients to express their care preferences. Yet, the prevalence of Advance Directives (AD) among oncology patients remains low. This study investigated oncologists' perspectives on the interests and challenges associated with implementing AD. METHODS: A French national online survey targeting hospital-based oncologists explored five areas: AD information, writing support, AD usage, personal perceptions of AD's importance, and respondent's profile. The primary outcome was to assess how frequently oncologists provide patients with information about AD in daily clinical practice. Additionally, we examined factors related to delivering information on AD. RESULTS: Of the 410 oncologists (50%) who responded to the survey, 75% (n = 308) deemed AD relevant. While 36% (n = 149) regularly inform patients about AD, 25% (n = 102) remain skeptical about AD. Among the respondents who do not consistently discuss AD, the most common reason given is the belief that AD may induce anxiety (n = 211/353; 60%). Of all respondents, 90% (n = 367) believe patients require specific information to draft relevant AD. Physicians with experience in palliative care were more likely to discuss AD (43% vs 32.3%, p = 0.027). Previous experience in critical care was associated with higher levels of distrust towards AD (31.5% vs 18.8%, p = 0.003), and 68.5% (n = 281) of the respondents expressed that designating a "person of trust" would be more appropriate than utilizing AD. CONCLUSION: Despite the perceived relevance of AD, only a third of oncologists regularly apprise their patients about them. Significant uncertainty persists about the safety and relevance of AD.

Towards the implementation of law n. 219/2017 on informed consent and advance directives for patients with psychiatric disorders and dementia. Physicians' knowledge, attitudes and practices in four northern Italian health care facilities.

BACKGROUND: On December 2017 the Italian Parliament approved law n. 219/2017 "Provisions for informed consent and advance directives" regarding challenging legal and bioethical issues related to healthcare decisions and end-of life choices. The law promotes the person's autonomy as a right and provides for the centrality of the individual in every scenario of health care by mean of three tools: informed consent, shared care planning and advance directives. Few years after the approval of the law, we conducted a survey among physicians working in four health care facilities specific for the care of people suffering from psychiatric disorders, cognitive disorders and dementia located in the North of Italy aiming to investigate their perceived knowledge and training need, attitudes regarding law n. 219/2017 provisions, and practices of implementation of the law. METHODS: A semi-structured questionnaire was developed on an online platform. The invitation to participate in the survey was sent by email to the potential participants. Information was collected by means of the online platform (Google Forms) which allows to export data in a spreadsheet (Windows Excel) to perform basic statistical analysis (frequency distributions, bar chart representation). RESULTS: Twenty-five out of sixty physicians participated in the survey. None of the respondents value their knowledge of the law as very good, 10 good, 13 neither poor nor good, 1 poor and 1 very poor. All the respondents want to learn more about the law (21 yes and 4 absolutely yes). The majority of respondents agrees with the content of the law as a whole (3 absolutely agree, 13 agree), and on each provision. The question on the clarity of the concept of capacity in the law received mixed answers and this impacted on the physicians' opinion regarding the legitimacy in principle for our groups of patients to realize shared care planning and write advance directives. Thirteen physicians neither introduced the theme of shared care planning nor arranged for shared care planning and the main reason for this was that no patient was in a clinical situation to require it. When shared care planning is realized, a variability in terms of type and number of meetings, mode of tracking and communication is registered. CONCLUSIONS: Our survey results indicate a need for more clarity regarding the interpretation and implementation of the law in the patient groups under study. There are in particular two related areas that deserve further discussion: (1) the question of whether these patient groups are in principle legitimized by the law to realize shared care planning or write advance directives; (2) the notion of capacity required by the law and how this notion can be declined in real-life situations.

Readiness for advance care planning and related factors in the general population: a cross sectional study in Iran.

CONTEXT: Advance Care Planning (ACP), as a process for expressing and recording patients' preferences about end-of-life care, has received increasing attention in recent years. However, implementing ACP has been challenging in Iran. OBJECTIVES: To assess the readiness for advance care planning and related factors in the general population of Iran. METHODS: This cross-sectional study was conducted on the general population of Iran in 2022. The data was collected using demographic information questionnaire and The RACP Scale. The purpose and methodology of the research was explained to all participants, and upon their agreement an informed consent was obtained. Participants were invited to fill out the questionnaires wherever is more convenient for them, either alone or if needed, with the help of the researcher to protect their privacy. Chi-square, fisher exact test and multiple logistic Regression model were used to assess the effective factors on the RACP. The data were analyzed by SPSS software version 26. RESULTS: A total of 641 people with an average age of 36.85 ± 12.05 years participated in this study. Of those, 377 (58.8%) had high RACP. The logistics model showed an association between the chance of readiness for receiving ACP with participants' education level, such that the chance of readiness in those with Master's or Ph.D. degrees was three times higher than those with a diploma (p = 0.00, OR:3.178(1.672, 6.043)). However, the chances of readiness in those with bachelor's degrees was not significantly different from those with a diploma (p = 0.936, OR: 0.984 (0.654, 1.479)). Moreover, the chance of readiness was 1.5 higher in participants over 40 years of age compared with participants under the age of 40 (P = 0.01, OR: 1.571(1.10, 2.23)). CONCLUSION: According to the findings of this study, it can be concluded that there is a relatively RACP among people in Iranian society. The readiness of individuals for ACP increases by their age and education level. Therefore, by holding appropriate training intervention, we can increase the readiness of the public for ACP to improve their end-of-life outcome.

Attitudes of the Portuguese population towards advance directives: an online survey.

BACKGROUND: Advance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people's attitudes towards ADs. METHODS: An online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a -form-which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale-was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023. RESULTS: A total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence. CONCLUSION: The results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens' autonomy in end-of-life care planning.

Factors related to advance directives completion among cancer patients: a systematic review.

INTRODUCTION: Advance directives (ADs) has recently been considered as an important component of palliative care for patients with advanced cancer and is a legally binding directive regarding a person's future medical care. It is used when a person is unable to participate in the decision-making process about their own care. Therefore, the present systematic review investigated the factors related to ADs from the perspective of cancer patients. METHODS: A systematic review study was searched in four scientific databases: PubMed, Medline, Scopus, Web of Science, and ProQuest using with related keywords and without date restrictions. The quality of the studies was assessed using the Hawker criterion. The research papers were analyzed as directed content analysis based on the theory of planned behavior. RESULTS: Out of 5900 research papers found, 22 were included in the study. The perspectives of 9061 cancer patients were investigated, of whom 4347 were men and 4714 were women. The mean ± SD of the patients' age was 62.04 ± 6.44. According to TPB, factors affecting ADs were categorized into four categories, including attitude, subjective norm, perceived behavioral control, and external factors affecting the model. The attitude category includes two subcategories: "Lack of knowledge of the ADs concept" and "Previous experience of the disease", the subjective norm category includes three subcategories: "Social support and interaction with family", "Respecting the patient's wishes" and "EOL care choices". Also, the category of perceived control behavior was categorized into two sub-categories: "Decision-making" and "Access to the healthcare system", as well as external factors affecting the model, including "socio-demographic characteristics". CONCLUSION: The studies indicate that attention to EOL care and the wishes of patients regarding receiving medical care and preservation of human dignity, the importance of facilitating open communication between patients and their families, and different perspectives on providing information, communicating bad news and making decisions require culturally sensitive approaches. Finally, the training of cancer care professionals in the palliative care practice, promoting the participation of health care professionals in ADs activities and creating an AD-positive attitude should be strongly encouraged.

Advanced Care Directives in Residential Aged Care for Residents with Major Neuro-Cognitive Disorders (Dementia): A Scoping Review.

The aim of this review was to identify, assess, collate, and analyze existing research that has made a direct contribution to aiding understanding of the ethical and decision-making issues related to the use of advance care directives for people with dementia and/or other major neurocognitive disorders and/or their surrogate decision-makers on treatment. The Web of Science, Scopus, PubMed, CINAHL, Academic Search Ultimate, and MEDLINE databases were searched between August and September 2021 and July to November 2022 limited to primary studies written in English, Spanish, or Portuguese. Twenty-eight studies of varying quality that addressed related thematic areas were identified. These themes being support for autonomy in basic needs (16%), making decisions ahead/planning ahead and upholding these decisions (52%), and support in decision-making for carers (32%). Advance care directives are an important mechanism for documenting treatment preferences in patient care planning. However, the available literature on the topic is limited in both quantity and quality. Recommendations for practice include involving decision makers, promoting educational interventions, exploring how they are used and implemented, and promoting the active involvement of social workers within the healthcare team.

Knowledge, attitudes and practices towards advance directives among clinical nurses: Multicenter cross-sectional survey.

AIMS AND OBJECTIVES: This study aimed to describe the knowledge, attitudes and practices (KAP) of nurses in implementing advance directives (ADs) for older patients and analyze the influencing factors before the establishment of the first advance directives act in China. DESIGN: Multicenter cross-sectional survey. The standards for reporting the STROBE checklist are used. METHODS: This cross-sectional study developed a self-designed structured questionnaire to assess nurses' knowledge, attitudes and practices about ADs. Nurses were recruited by stratified random sampling through the Nursing Departments of 12 hospitals in southwest China and were asked to fill out the questionnaire face to face about knowledge, attitudes and practices. Data were analyzed following descriptive statistics, rank-sum test and multiple linear regression. RESULTS: This study included 950 nurses. The study found that nurses were extremely supportive of ADs. Unmarried nurses had better knowledge of ADs than married ones. Nevertheless, there was a discrepancy between the participants' knowledge, attitude and practice. The participants' practice was lower (4.3%) compared with their attitude (81.9%) and knowledge (42.2%). Knowledge on, attitudes towards and standardized procedures for ADs in the workplace affected nursing practice. CONCLUSIONS: The study recommends that courses on ADs and appropriate support from medical institutions should be provided to nurses to increase their knowledge and confidence in implementing ADs. Healthcare professionals should be sufficiently equipped to implement ADs and handle their execution appropriately to provide adequate end-of-life care corresponding to patients' wishes. RELEVANCE TO CLINICAL PRACTICE: The study results inform rich insights as it discusses the numerous interrelating factors influencing these three fundamental aspects that affect the success of any AD policy by surveying the knowledge, attitudes and practices of clinical nurses. Furthermore, our results hint at distinct areas of improvement in the nursing practice to facilitate the wider implementation and acceptance of ADs in China. PATIENT OR PUBLIC CONTRIBUTION: This study involved no patient.

Advance directives need full legal status in persons with dementia.

Currently, in the United States, there is no legal obligation for medical professionals or civil courts to uphold patients' Advance Directives (ADs) regarding end-of-life care. The applicability and standing of ADs prepared by Alzheimer's patients is a persistent issue in bioethics. Those who argue against giving ADs full status take two main approaches: (1) appealing to beneficence on behalf of the Alzheimer's patient and (2) claiming that there is no longer any personal equivalence between the AD's creator and the subject of the AD. In this paper, I present profound arguments against both approaches. Firstly, I argue that the principle of beneficence cannot apply in the case of Alzheimer's patients, and, secondly, that the moral and legal authority of the AD need not depend on strict equivalence of personal identity. I conclude by arguing that valid ADs protect the dignity and autonomy of Alzheimer's patients and that, therefore, there are moral obligations to uphold ADs which should be reflected in public policy and legislation.

To Plan or Not to Plan? Experiences and Challenges of Older Swiss Adults Facing End-of-Life Decisions.

End-of-life (EoL) planning and the drafting of advance care directives (ACD) are challenging for older adults. As part of a mixed study, the content of 18 semi-structured interviews with Swiss community-dwelling older adults was analyzed to investigate contextual and interactional aspects that might influence their choice to complete ACD. Results show that EoL planning vary greatly. Three types of planners were highlighted: the solo planners, the collaborative planners, and the delegators. Each represents a specific way of conceiving autonomy, the usefulness of ACD and of involving third parties in the decision-making process. Whereas for solo planners, ACD is a personal, rational affair, for collaborative planners and delegators, reflection and decisions on EoL issues are interactional and iterative processes. The results suggest that health and social care professionals would benefit from taking into consideration the various types of planning, in order to provide the best support to older adults for ACD completion.

Patient Engagement With Early Stage Advance Care Planning at a Comprehensive Cancer Center.

BACKGROUND: Establishing care preferences and selecting a prepared medical decision-maker (MDM) are basic components of advance care planning (ACP) and integral to treatment planning. Systematic ACP in the cancer setting is uncommon. We evaluated a systematic social work (SW)-driven process for patient selection of a prepared MDM. METHODS: We used a pre/post design, centered on SW counseling incorporated into standard-of-care practice. New patients with gynecologic malignancies were eligible if they had an available family caregiver or an established Medical Power of Attorney (MPOA). Questionnaires were completed at baseline and 3 months to ascertain MPOA document (MPOAD) completion status (primary objective) and evaluate factors associated with MPOAD completion (secondary objectives). RESULTS: Three hundred and sixty patient/caregiver dyads consented to participate. One hundred and sixteen (32%) had MPOADs at baseline. Twenty (8%) of the remaining 244 dyads completed MPOADs by 3 months. Two hundred and thirty-six patients completed the values and goals survey at both baseline and follow-up: at follow-up, care preferences were stable in 127 patients (54%), changed toward more aggressive care in 60 (25%), and toward the focus on the quality of life in 49 (21%). Correlation between the patient's values and goals and their caregiver's/MPOA's perception was very weak at baseline, improving to moderate at follow-up. Patients with MPOADs by study completion had statistically significant higher ACP Engagement scores than those without. CONCLUSION: A systematic SW-driven intervention did not engage new patients with gynecologic cancers to select and prepare MDMs. Change in care preferences was common, with caregivers' knowledge of patients' treatment preferences moderate at best.

Cancer patients' expectations of advance care planning: A typological content analysis of qualitative interviews.

BACKGROUND: Advance care planning (ACP) can help to elicit cancer patients' preferences in a discussion process to promote person-centred medical decision-making. Expectations are known to be highly relevant determinants of decisional processes. So far, however, little is known about cancer patients' expectations of ACP that lead to acceptance or refusal of the programme. The presented study, therefore, aims to explore cancer patients' expectations of ACP. METHODS: Semi-structured interviews were conducted with a purposeful sample of 27 cancer patients consenting to or refusing a newly implemented ACP programme in a German university hospital. Data were analysed using typological content analysis. RESULTS: We identified five different expectation clusters in relation to ACP. Consenting participants held expectations about the impact of ACP that were either 'ego-centred' or 'family-centred'. Refusers had expectations based on ignorance and misinformation, or-if they had already completed an advance directive-expectations to avoid unpleasant redundancy, perceiving no additional benefit but a burden from ACP. Finally, refusers in particular expressed expectations of delegated responsibility at the end of life, including anticipation of proxy decision-making. CONCLUSION: Our study results suggest that expectation-modifying measures could be taken to positively influence cancer patients' expectations and thus the acceptance of ACP. In this respect, reducing ignorance and misguided expectations plays a decisive role. Especially in family constellations with expected delegation of responsibility and dependence at the end of life, it might be important to promote ACP as a family-intervention to improve family outcomes.