Advance care planning in the treatment of implantable left ventricular assist device: a republication of the review published in Japanese Journal of Artificial Organs.

Advance care planning (ACP) is essential in managing serious and chronic illnesses to ensure that patients receive care aligned with their personal values, goals, and preferences. This review focuses on integrating ACP in the treatment of patients receiving implantable left ventricular assist devices (VADs). The heart failure palliative care team developed a unique advance directive form and pamphlet to facilitate ACP discussions, emphasizing not only medical treatment preferences but also patients' values and life goals.The study highlights the distinction between bridge to transplantation (BTT) and destination therapy (DT) in VAD patients, with different goals and considerations for ACP. The use of decision aids developed especially for DT candidates as a communication tool helps in sharing patients' wishes and facilitates shared decision-making, particularly in the complex decisions surrounding DT therapy.Challenges in implementing ACP, such as time constraints due to urgent medical conditions, difficulties in patient communication, and the recent COVID-19 pandemic, are addressed. The need for a comprehensive healthcare system capable of supporting patients' ACP wishes, especially in the community setting, is also pointed out.Future directions include not only developing materials to ease ACP discussions and ensuring that ACP content is shared among healthcare providers to foster collaborative and detailed planning, but also a call for widespread adoption of ACP in Japan.This is a translation of a paper written in Japanese Journal of Artificial Organs (Vol. 52, No. 1, pp. 89-92) with additions and corrections.

Digital advance care planning with severe mental illness: a retrospective observational cohort analysis of the use of an electronic palliative care coordination system.

BACKGROUND: People living with severe mental illness (SMI) face significant health inequalities, including in palliative care. Advance Care Planning (ACP) is widely recommended by palliative care experts and could reduce inequalities. However, implementing ACP with this group is challenging. Electronic Palliative Care Coordination Systems such as Coordinate my Care (CMC) have been introduced to support documentation and sharing of ACP records with relevant healthcare providers. This study explores the use of CMC amongst those with SMI and aims to describe how those with a primary diagnosis of SMI who have used CMC for ACP, and makes recommendations for future research and policy. METHOD: A retrospective observational cohort analysis was completed of CMC records created 01/01/2010-31/09/2021 where the service user had a primary diagnosis of SMI, with no exclusions based on comorbidities. Descriptive statistics were used to report on characteristics including: age, diagnosis, individual prognosis and resuscitation status. Thematic analysis was used to report on the content of patients' statements of preference. RESULTS: 1826 records were identified. Of this sample most (60.1%) had capacity to make treatment decisions, 47.8% were aged under 70, 86.7% were given a prognosis of 'years' and most (63.1%) remained for full cardio-pulmonary resuscitation in the event of cardio-pulmonary arrest. Records with completed statements of preferences (20.3%) contained information about preferences for physical and mental health treatment care as well as information about patient presentation and capacity, although most were brief and lacked expression of patient voice. DISCUSSION: Compared to usual CMC users, the cohort of interest are relatively able, younger people using CMC to make long-term plans for active physical and mental health treatment. ADM is a service user-driven process, and so it was expected that authentic patient voice would be expressed within statements of preference, however this was mostly not achieved. CONCLUSIONS: This digital tool is being used by people with SMI but to plan for more than palliative care. This cohort and supporting professionals have used CMC to plan for longer term physical and mental healthcare. Future research and policy should focus on development of tailored digital tools for people with SMI to plan for palliative, physical and mental healthcare and support expression of patient voice.

Nurses' engagement in advance care planning practices: A descriptive cross-sectional study.

AIMS: To describe and compare nurses' awareness of, attitudes toward, and participation in advance care planning, as well as related facilitators and challenges, in four types of healthcare settings. DESIGN: A cross-sectional descriptive study. METHODS: Four hundred and ninety-eight registered nurses from tertiary, secondary and primary healthcare institutions, along with long-term care centres in South Korea, participated in an investigator-developed online survey. The collected data were analysed using descriptive statistics, chi-squared test, one-way ANOVA, and binary logistic regression. RESULTS: Participants were on average 30.6 ± 7.3 years old, mostly female (95.4%), employed as staff nurses (95.4%), held bachelor's degrees or higher (84.1%), and had worked for less than 5 years at their current institutions (69.7%). Overall, 49% of the participants were familiar with advance care planning. While most participants supported nurse involvement in advance care planning with patients and surrogates, fewer were willing to engage or recommend it. Less than half were actively engaged in advance care planning practices. A notable challenge was the lack of time due to excessive workload. Compared to those from tertiary healthcare institutions, participants from secondary and primary healthcare institutions and long-term care centres were less likely to be aware of advance care planning. Participants from secondary and primary healthcare institutions had lower odds of checking for the presence of advance directives and the physician orders for life-sustaining treatment. CONCLUSION: Nurses demonstrated low awareness and participation in advance care planning. Nurses' insufficient time and competency to conduct advance care planning in their practice should be addressed. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Educational programs, initiatives (e.g. guidelines, position statements) and legal and policy-level efforts (e.g. nurse staffing, role clarification, reimbursement) are crucial to incorporate advance care planning into routine nursing practice. IMPACT: What problem did the study address? Nurses play an important role in advance care planning; however, limited is understood about their readiness and involvement in such practices. What were the main findings? Nurses' awareness of advance care planning practices and their participation in such practices is low across care settings. Although nurses have a positive attitude toward advance care planning, there are challenges (e.g. insufficient time to conduct advance care planning discussions and lack of relevant knowledge and skills) that impede their participation in practice. Where and on whom will the research have an impact? This study may serve as a foundation for nursing societies in countries, where advance care planning is emerging, to discuss strategies to increase nurses' competency in advance care planning and promote their participation in the practice. REPORTING METHOD: The STROBE checklist was followed. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Barriers to initiate a discussion about advance care planning among older Taiwanese residents of nursing homes and their families: A qualitative study.

BACKGROUND: In Taiwan, the Patients' Right to Autonomy Act was enacted in 2019. However, advance care planning (ACP) implementation rates remain low in long-term care facilities. AIM: This study explored the barriers to initiate a discussion about ACP among older Taiwanese residents of nursing homes and their families. METHODS: A descriptive qualitative design was used. Face-to-face interviews were individually conducted with 38 participants (residents: 18; family members: 20), and data were analyzed through content analysis. RESULTS: Five themes were identified: (1) having cultural or spiritual concerns (both groups), (2) prioritizing the bigger picture (family) (both groups), (3) waiting for the right time (both groups), (4) feeling unsure (residents), and (5) following the pace of the residents (family members). CONCLUSION: The results indicate that discussing ACP with Chinese people and their families clashes with traditional Chinese culture. To implement ACP in long-term care facilities based in regions with ethnically Chinese populations, medical professionals must ensure that the residents and their family members understand advance directives and their role in ensuring a good death and must act as a bridge between residents and their family members to assist them in making consensual end-of-life-care decisions with residents.

[Ethical case discussions before compulsory medication in psychiatry]. / Ethische Fallbesprechungen vor Zwangsmedikation in der Psychiatrie.

BACKGROUND: Ethical case discussions in psychiatric hospitals are particularly useful when a moral conflict between respect for the patient's autonomy and well-being becomes apparent when considering the legitimacy of coercive treatment. To date, there is hardly any data on the procedure and the results of such case discussions. We therefore present data from a large psychiatric clinic. AIM OF THE STUDY: We retrospectively analyzed ethical case discussions prior to compulsory medication in a quantitative and qualitative manner. METHODS: The study analyzed the protocols of all ethical case discussions over a 2-year period. They used the method of principle-based ethical case discussion. The qualitative analysis of selected cases was supplemented by reference to case records. RESULTS: An advance care directive was not available in any of the cases, so that the presumed will was used generally to assess the autonomy perspective. It proved quite complex to address danger to third parties when assessing the beneficence and nonmaleficence perspective. In 5 out of 35 consultations, the compulsory medication was not recommended from an ethical perspective. DISCUSSION: Ethical case discussions enable a holistic individual examination of moral obligations. They contribute to well-founded decisions and can help to reduce the frequency of coercive medications, suggesting routine use of ethics counselling.

The Current Discussion Regarding End-of-Life Care for Patients with Out-of-Hospital Cardiac Arrest with Initial Non-Shockable Rhythm: A Narrative Review.

Despite recent advances in resuscitation science, outcomes in patients with out-of-hospital cardiac arrest (OHCA) with initial non-shockable rhythm remains poor. Those with initial non-shockable rhythm have some epidemiological features, including the proportion of patients with a witnessed arrest, bystander cardiopulmonary resuscitation (CPR), age, and presumed etiology of cardiac arrest have been reported, which differ from those with initial shockable rhythm. The discussion regarding better end-of-life care for patients with OHCA is a major concern among citizens. As one of the efforts to avoid unwanted resuscitation, advance directive is recognized as a key intervention, safeguarding patient autonomy. However, several difficulties remain in enhancing the effective use of advance directives for patients with OHCA, including local regulation of their use, insufficient utilization of advance directives by emergency medical services at the scene, and a lack of established tools for discussing futility of resuscitation in advance care planning. In addition, prehospital termination of resuscitation is a common practice in many emergency medical service systems to assist clinicians in deciding whether to discontinue resuscitation. However, there are also several unresolved problems, including the feasibility of implementing the rules for several regions and potential missed survivors among candidates for prehospital termination of resuscitation. Further investigation to address these difficulties is warranted for better end-of-life care of patients with OHCA.

The Association of Chinese Ethnicity and Language Preference with Advance Directive Completion Among Older Patients in an Integrated Health System.

BACKGROUND: Little is known about possible differences in advance directive completion (ADC) based on ethnicity and language preference among Chinese Americans on a regional level. OBJECTIVE: To understand the association of ethnicity and language preference with ADC among Chinese Americans. DESIGN: Retrospective cohort analysis with direct standardization. PARTICIPANTS: A total of 31,498 Chinese and 502,991 non-Hispanic White members enrolled in Kaiser Permanente Northern California during the entire study period between 2013 and 2017 who were 55 or older as of January 1, 2018. MAIN MEASURES: We compared the proportion of ADC among non-Hispanic White and Chinese patients, and also analyzed the rates according to language preference within the Chinese population. We calculated ADC rates with direct standardization using covariates previously found in literature to be significant predictors of ADC such as age and utilization. KEY RESULTS: Among Chinese members, 60% preferred English, 16% preferred another language without needing an interpreter, and 23% needed an interpreter. After standardizing for age and utilization, non-Hispanic Whites were more than twice as likely to have ADC as Chinese members (20.6% (95% confidence interval (CI): 20.5-20.7%) vs. 10.0% (95% CI: 9.6-10.3%), respectively). Among Chinese members, there was an inverse association between preference for a language other than English and ADC (13.3% (95% CI: 12.8-13.8%) if preferring English, 6.1% (95% CI: 5.4-6.7%) if preferring non-English language but not needing an interpreter, and 5.1% (95% CI: 4.6-5.6%) if preferring non-English language and needing an interpreter). CONCLUSIONS: Chinese members are less likely to have ADC relative to non-Hispanic White members, and those preferring a language other than English are most affected. Further studies can assess reasons for lower ADC among Chinese members, differences in other Asian American populations, and interventions to reduce differences among Chinese members especially among those preferring a language other than English.

Dealing with requests for euthanasia in incompetent patients with dementia. Qualitative research revealing underexposed aspects of the societal debate.

OBJECTIVES: In the Netherlands, a case of euthanasia of an incompetent patient with dementia and an advance euthanasia directive (AED) caused great societal unrest and led to a petition signed by more than 450 physicians. In this paper, we investigate these physicians' reasons and underlying motives for supporting the 'no sneaky euthanasia' petition, with the aim of gaining insight into the dilemmas experienced and to map out topics in need of further guidance. METHODS: Twelve in-depth interviews were conducted with physicians recruited via the webpage 'no sneaky euthanasia'. General topics discussed were: reasons for signing the petition, the possibilities of euthanasia in incompetent patients and views on good end-of-life care. Data were interpreted using thematic content analysis and the framework method. RESULTS: Reasons for supporting the petition are dilemmas concerning 'sneaky euthanasia', the over-simplified societal debate, physicians' personal moral boundaries and the growing pressure on physicians. Analysis revealed three underlying motives: aspects of handling a euthanasia request based on an AED, good end-of-life care and the doctor as a human being. CONCLUSIONS: Although one of the main reasons for participants to support the petition was the opposition to 'sneaky euthanasia', our results show a broader scope of reasons. This includes their experience of growing pressure to comply with AEDs, forcing them to cross personal boundaries. The underlying motives are related to moral dilemmas around patient autonomy emerging in cases of decision-making disabilities in advanced dementia. To avoid uncertainty regarding patients' wishes, physicians express their need for reciprocal communication.

Reproductive psychiatric advance directives: promoting autonomy for perinatal people with serious mental illness diagnoses.

People with serious mental illness (SMI) diagnoses who become pregnant are particularly vulnerable to symptom recurrence and resulting potential lack of decision-making capacity (Taylor et al. J Psychiatr Res 104:100-107, 2018; Bagadia et al. Int J Soc Psychiatry 66:792-798, 2020). In these situations, prenatal and behavioral health providers have little legally viable guidance on what medical and/or psychiatric care the patient desires (Aneja and Arora Indian J Med Ethics V:133-139, 2020). We created a "Reproductive Psychiatric Advance Directive (PAD)," grounded in Reproductive Justice principles, that promotes patient autonomy by proactively articulating perinatal medical and psychiatric care preferences. We conducted a medical and legal literature review using two sets of terms related to (1) PADs and (2) reproductive health. We convened an expert working group of legal, medical, psychiatric, peer, and advocacy leaders and community-based organizations to develop a Reproductive PAD. Our literature review yielded no results about Reproductive PADs. We created de novo a Reproductive PAD template with sections on medical and psychiatric history, informed consent for critical medical and psychiatric care, family planning and custody preferences, and optional sections on abortion and on electroconvulsive therapy. The Reproductive PAD provides a possible legal mechanism for people of childbearing age with SMI diagnoses to articulate their medical and psychiatric care choices around reproduction and pregnancy. Future research should evaluate the Reproductive PAD as an effective tool for protecting patient autonomy during pregnancy and postpartum and guiding medical and psychiatric providers.

Associations of health literacy, personality traits, and pro-individualism with the willingness to complete advance directives in Taiwan.

BACKGROUND: Studies indicated that patients with advance directives (ADs) have a generally better quality of life near death. Yet, the concept of ADs is relatively new in East Asian countries. This study examined the associations between health literacy, pro-individualism in end-of-life (EOL) decisions (i.e., EOL pro-individualism), and master-persistence personality traits with the willingness to complete ADs. METHODS: The data is from a representative data of 1478 respondents from the 2022 Taiwan Social Change Survey. Generalized structural equation modeling (GSEM) was used to conduct path analysis. RESULTS: Nearly half of the respondents (48.7%) were willing to complete ADs. Health literacy has direct and indirect effects through EOL pro-individualism values on the willingness to complete ADs. Noncognitive factors such as mastery-persistence personality traits and EOL pro-individualism values enhanced the willingness to complete ADs. CONCLUSION: A personalized communication strategy, mindful of personality dimensions and cultural values, can address individual fears and concerns, promoting the benefits of advance care planning (ACP). These influences can provide a roadmap for healthcare providers to customize their approach to ACP discussions, improving patient engagement in AD completion.

Opportunities and challenges of self-binding directives: an interview study with mental health service users and professionals in the Netherlands.

BACKGROUND: Self-binding directives (SBDs) are psychiatric advance directives that include the possibility for service users to consent in advance to compulsory care in future mental health crises. Legal provisions for SBDs exist in the Netherlands since 2008 and were updated in 2020. While ethicists and legal scholars have identified several benefits and risks of SBDs, few data on stakeholder perspectives on SBDs are available. AIMS: The aim of the study was to identify opportunities and challenges of SBDs perceived by stakeholders who have personal or professional experience with legally enforceable SBDs. METHODS: Data collection was carried out in the Netherlands from February 2020 to October 2021 by means of semi-structured interviews. Participants were selected through purposive sampling and snowball methods. Interviews were conducted with mental health service users (n = 7), professionals (n = 13), and an expert on SBD policy (n = 1), resulting in a total number of 21 interviews. The data were analyzed thematically. RESULTS: Perceived benefits of SBDs included increased autonomy, improvement of the therapeutic relationship, possibility of early intervention and prevention of harm, prevention of compulsory care, reduction of the duration of compulsory care and recovery, mitigation of negative experiences around compulsory care, and guidance for professionals in providing compulsory care. Perceived risks included infeasibility of SBD instructions, difficulty in decision-making around SBD activation, limited accessibility of SBDs, disappointment of service users due to non-compliance with SBDs, and limited evaluation and updating of SBD content. Barriers to SBD completion included lack of knowledge of SBDs among professionals, lack of motivation or insight among service users, and lack of professional support for SBD completion. Facilitators of SBD completion and activation included support for SBD completion, involvement of relatives and peer experts, specification of SBD content, and evaluation of compulsory care and SBD content. The new legal framework was regarded as having both positive and negative effects on SBD implementation. CONCLUSIONS: Stakeholders who have personal or professional experience with legally enforceable SBDs perceive SBDs as having important benefits and tend not to articulate the fundamental ethical concerns about SBDs which can be found in the ethics and legal literature. Instead, they perceive ethical and practical challenges that can be addressed through the implementation of suitable safeguards.

Exploring knowledge, attitude, and intention towards advance care planning, advance directive, and the patient self-determination act among hemodialysis patients.

BACKGROUND: Hemodialysis holds the highest incidence and prevalence rate in Taiwan globally. However, the implementation of advance care planning (ACP), advance directives (AD), and patient self-determination acts (PSDA) remains limited. Our objective was to examine the current status of ACP, AD and PSDA and potential opportunities for enhancement. METHODS: We developed a novel questionnaire to assess individuals' knowledge, attitudes, and intentions regarding ACP, AD, and PSDA. We also collected baseline characteristics and additional inquiries for correlation analysis to identify potential factors. Student's t-test and Analysis of Variance were employed to assess significance. RESULTS: Initially, a cohort of 241 patients was initially considered for inclusion in this study. Subsequently, 135 patients agreed to participate in the questionnaire study, resulting in 129 valid questionnaires. Among these respondents, 76 were male (59.9%), and 53 were female (41.1%). Only 13.2% had signed AD. A significant portion (85.3%) indicated that they had not discussed their dialysis prognosis with healthcare providers. Additionally, a mere 14% engaged in conversations about life-threatening decisions. Ninety percent believed that healthcare providers had not furnished information about ACP, and only 30% had discussed such choices with their families. The findings revealed that the average standardized score for ACP and AD goals was 84.97, while the attitude towards PSDA received a standardized score of 69.94. The intention score stood at 69.52 in standardized terms. Potential candidates for ACP initiation included individuals aged 50 to 64, possessing at least a college education, being unmarried, and having no history of diabetes. CONCLUSION: Patients undergoing hemodialysis exhibited a significant knowledge gap concerning ACP, AD, and the PSDA. Notably, a substantial number of dialytic patients had not received adequate information on these subjects. Nevertheless, they displayed a positive attitude, and a considerable proportion expressed a willingness to sign AD. It is imperative for nephrologists to take an active role in initiating ACP discussions with patients from the very beginning.

Experiences of medical students and nursing trainees from unexpected death through simulation training.

BACKGROUND: Dying in simulation training is controversially discussed. On the one hand, the danger of an emotional overload of the learners is pointed out. On the other hand, dying in simulation settings is addressed as an opportunity to prepare future health professionals to deal with patient death. The present study investigates how medical students and nursing trainees experience the sudden death of a simulated patient and how and under which conditions it can be valuable to simulate the patient's death. METHODS: At the TUM School of Medicine in Munich, Germany, we developed an interprofessional, simulation-based course in which participants were unexpectedly confronted with a cardiac arrest scenario within which resuscitation had to be discontinued due to an advanced directive. After the course, focus groups were conducted with nine medical students and six nursing trainees. Data were analysed using Grounded Theory techniques. RESULTS: The participants reported low to high emotional involvement. The active renunciation of life-sustaining measures was felt to be particularly formative and caused a strange feeling and helplessness. Questions of what could have been done differently determined interviewees' thoughts. The participants appreciated the opportunity to experience what it feels like to lose a patient. The course experience encouraged interviewees to reflect on dying and the interviewees explained that they feel better prepared to face death after the course. The unexpected character of the confrontation, presence of the advanced directive and debriefing positively affected the impact of the simulation. CONCLUSIONS: The study recognises simulation training as a promising approach for preparing future health care professionals to encounter a patient's death.

Advance Care Planning Among Patients With Advanced Illness Presenting to the Emergency Department.

BACKGROUND: Advance care planning (ACP) benefits emergency department (ED) patients with advanced illness. Although Medicare implemented physician reimbursement for ACP discussions in 2016, early studies found limited uptake. OBJECTIVE: We conducted a pilot study to assess ACP documentation and billing to inform the development of ED-based interventions to increase ACP. METHODS: We conducted a retrospective chart review to quantify the proportion of ED patients with advanced illness with Physician Orders for Life-Sustaining Treatment (POLST) or coding of ACP discussion in the medical record. We surveyed a subset of patients via phone to evaluate ACP participation. RESULTS: Of 186 patients included in the chart review, 68 (37%) had a POLST and none had ACP discussions billed. Of 50 patients surveyed, 18 (36%) recalled prior ACP discussions. CONCLUSIONS: Given the low uptake of ACP discussions in ED patients with advanced illness, the ED may be an underused setting for interventions to increase ACP discussions and documentation.

Preferences for end-of-life care: A cross-sectional survey of Chinese frail nursing home residents.

AIM AND OBJECTIVES: To assess (1) the experience, knowledge and preferences of end-of-life care among frail nursing home residents and (2) the preferences of residents' family caregivers. BACKGROUND: Globally, nursing homes are becoming an important place where many older people will receive their end-of-life care. Thus, assessing the end-of-life care preferences among nursing home residents is crucial. DESIGN: Cross-sectional survey. METHODS: Residents aged ≥65 years, with frail or pre-frail status (n = 286) in 34 nursing homes were interviewed using a structured questionnaire. Descriptive statistics were used to describe the outcomes and regression analyses were used to evaluate factors related to the outcomes. Kappa statistics were used to examine the agreement between the preferences among 21 residents and their family caregivers. The manuscript was guided by the STROBE checklist. RESULTS: 5.9% and 10.5% of the participants had heard of advance care planning and advance directive respectively. After explanations of the terms by the research team, 42.3% of the participants preferred advance care planning, whereas 22.0% preferred advance directive. The top reason for not preferring advance care planning/advance directive is perceiving them as 'not necessary'. Nursing homes were the most preferred place to receive end-of-life care (41.6%). Whereas hospitals were the most preferred place for death (36.0%). The agreement among resident and family caregiver dyads ranged from none to minimal in most outcomes. CONCLUSIONS: This study revealed the lack of awareness around advance care planning and advance directive among frail nursing home residents. Future research should focus on developing effective educational interventions to enhance the residents' awareness of these topics. RELEVANCE TO CLINICAL PRACTICE: To increase awareness among nursing home residents, more educational programs should be implemented. Frail older residents might not see the relevance of advance care planning; interventions need to include both current and future care to increase its relevance.

Lessons learned from a social worker's approach to advance care planning discussions with Chinese-immigrant oncology outpatients.

PURPOSE: To examine Chinese-immigrant cancer patients' openness to advance care planning (ACP) in an outpatient oncology setting. DESIGN: Retrospective review of social work assessment data. SAMPLE: 150 Chinese-immigrant patient charts were reviewed (55% Cantonese, 45% Mandarin). METHODS: Data were summarized descriptively and with logistic regression analyses. FINDINGS: Sixteen percent of patients had completed ACP prior to meeting with the oncology social worker (OSW). Twenty percent of patients agreed to complete a health care proxy (HCP) after receiving culturally-tailored education in their language of origin from the OSW, while 75% remained open to ongoing consideration of ACP and HCP completion. CONCLUSIONS: This study illuminates how Chinese immigrants engage in ACP discussions in an oncology setting. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDER: OSWs can play an integral role in advocating, educating, and intervening with this population and can assist the interdisciplinary team in understanding the importance of the cultural differences, even if the OSW's primary language differs from that of a patient's.

Improving the Implementation of Advance Directives in Spain.

Since 2002, legislation in Spain has allowed for the creation and documentation of end-of-life decisionmaking. Over the intervening years, the actual implementation of such documents is very low. Through extensive analysis of the literature, this article explores the current status of the use of and attitudes toward advance directives in Spain and then proposes strategies for improvement in their implementation.

Hope and advance care planning in advanced cancer: Is there a relationship?

BACKGROUND: Clinicians often cite a fear of giving up hope as a reason they defer advance care planning (ACP) among patients with advanced cancer. The objective of this study was to determine whether engagement in ACP affects hope in these patients. METHODS: This was a secondary analysis of a randomized controlled trial of primary palliative care in advanced cancer. Patients who had not completed ACP at baseline were included in the analysis. ACP was assessed in the forms of an end-of-life (EOL) conversation with one's oncologist and completion of a living will or advance directive (AD). Measurements were obtained at baseline and at 3 months. Hope was measured using the Herth Hope Index (HHI) (range, 12-48; higher scores indicate higher hope). Multivariate regression was performed to assess associations between ACP and hope, controlling for baseline HHI score, study randomization, patient age, religious importance, education, marital status, socioeconomic status, time since cancer diagnosis, pain/symptom burden (Edmonton Symptom Assessment System), and anxiety/depression score (Hospital Anxiety and Depression Scale)-all variables known to be associated with ACP and/or hope. RESULTS: In total, 672 patients with advanced cancer were enrolled in the overall study. The mean age was 69 ± 10 years, and the most common cancer types were lung cancer (36%), gastrointestinal cancer (20%) and breast/gynecologic cancers (16%). In this group, 378 patients (56%) had not had an EOL conversation at baseline, of whom 111 of 378 (29%) reported having an EOL conversation by 3 months. Hope was not different between patients who did or did not have an EOL conversation over the study period (mean ± standard deviation ∆HHI, 0.20 ± 5.32 vs -0.53 ± 3.80, respectively; P = .136). After multivariable adjustment, hope was significantly increased in patients who had engaged in an EOL conversation (adjusted mean difference in ∆HHI, 0.95; 95% CI, 0.08-1.82; P = .032). Similarly, of 216 patients (32%) without an AD at baseline, 67 (31%) had subsequently completed an AD. Unadjusted hope was not different between those who did and did not complete an AD (∆HHI, 0.20 ± 3.89 vs -0.91 ± 4.50, respectively; P = .085). After adjustment, hope was significantly higher in those who completed an AD (adjusted mean difference in ∆HHI, 1.31; 95% CI, 0.13-2.49; P = .030). CONCLUSIONS: The current results demonstrate that hope is not decreased after engagement in ACP and indeed may be increased. These findings may provide reassurance to clinicians who are apprehensive about having these important and difficult conversations. LAY SUMMARY: Many oncologists defer advance care planning (ACP) out of concern for giving up hope. This study demonstrates that hope is not decreased in patients who have engaged in ACP either as a conversation with their oncologists or by completing an advance directive. With this information, providers may feel more comfortable having these important conversations with their patients.

Easing the Journey-an Updated Review of Palliative Care for the Patient with High-Grade Glioma.

PURPOSE OF REVIEW: High-grade gliomas (HGG) are rare brain tumors that cause disproportionate suffering and mortality. Palliative care, whose aim is to relieve the symptoms and stressors of serious illness, may benefit patients with HGG and their families. In this review, we summarize the extant literature and provide recommendations for addressing the symptom management and communication needs of brain tumor patients and their caregivers at key points in the illness trajectory: initial diagnosis; during upfront treatment; disease recurrence; end-of-life period; and after death during bereavement. RECENT FINDINGS: Patients with HGG experience highly intrusive symptoms, cognitive and functional decline, and emotional and existential distress throughout the disease course. The caregiver burden is also substantial during the patient's illness and after death. There is limited evidence to guide the palliative management of these issues. Palliative care is likely to benefit patients with HGG, yet further research is needed to optimize the delivery of palliative care in neuro-oncology.

Prevalence and factors associated with advance health directives in frail older inpatients.

BACKGROUND: Advance health directives (AHD) can be used to explore and document patient preferences for treatment and are therefore an important aspect of care planning. AIMS: To investigate the prevalence and factors associated with AHD among older inpatients. METHODS: This retrospective study included 6449 patients, aged ≥65 years referred for specialist geriatric consultation between 2007 and 2018 in Queensland, Australia. The interRAI-Acute Care Comprehensive Geriatric Assessment tool was used to calculate a frailty index (FI), range 0-1, based on 52 possible deficits, and categorised into intervals of 0.1 for analysis. FI was also grouped according to previously reported cut points: fit (FI ≤0.25), moderately frail (FI >0.25-0.4), frail (FI >0.4-0.6) and severely frail (FI >0.6). RESULTS: An AHD was present in 1032 (16.0%) of 6449 patients. Those with an AHD were significantly frailer than those without an AHD (mean FI 0.52 vs 0.45; P < 0.001). Higher frailty (odds ratio (OR): 1.34 (1.27-1.40)), older age (OR: 1.04 (1.03-1.05)), living in an institution (OR: 1.33 (1.01-1.73)) and recent hospitalisation (OR: 1.42 (1.23-1.62)) were significantly associated with higher prevalence of AHD. Prevalence of AHD increased over time, from 7.6% (n = 66) in 2008 to 35.4% (n = 99) in 2017. CONCLUSIONS: The presence of AHD is associated with sociodemographic factors, as well as higher frailty levels. Prevalence of AHD among inpatients has increased over the past decade but remains modest.