Advance Care Planning Research Articles

Influential Factors Affecting the Intention to Utilize Advance Care Plans (ACPs) in Thailand and Indonesia

Demographic shifts resulting from population aging are evident globally, including in Southeast Asia, Thailand, and Indonesia. The relevance of advance care plans is becoming increasingly apparent as the worldwide demographic transforms due to aging. This study sought to investigate the factors influencing the use and implementation of advance care plans (ACPs) using the health belief model (HBM) and technology acceptance model (TAM). This study selected a sample of individuals aged 30–60 in Indonesia and Thailand based on established inclusion and exclusion criteria. The study utilized the purposive random sampling method, integrating aspects of purposive and random selection. A total of 532 questionnaires were distributed via an online form, and 472 were obtained after data cleaning. Most respondents to this survey came from Indonesia, comprising 238 out of 472 respondents (50.4%), and from Thailand, comprising 49.5%; most respondents were women who were between 36 and 40 years old, and most reported graduating with a bachelor’s degree. A significant construct influences the use of advance care plans, i.e., perceived barriers. The perceived barrier (PBA) construct included data security, accessibility, and language barriers. In summary, overcoming existing barriers can indirectly increase the benefits of advance care plans. The results show that perceived usefulness (β = 0.189, p < 0.001), perceived ease of use (β = 0.150, p < 0.01), perceived susceptibility (β = 0.153, p < 0.01), perceived severity (β = 0.105, p < 0.05), and perceived benefits (β = 0.241, p < 0.001) all had significant positive effects on behavioral intention. In contrast, health motivation (β = 0.073, p = 0.100) and perceived barriers (β = 0.034, p = 0.134) did not show significant relationships with behavioral intention in Indonesia and Thailand, offering insights into both countries’ development strategies and the promotion of advance care plans with media as the technology.

Examining the Relationship Between Rural and Urban Clinicians' Familiarity With Patients and Families and Their Comfort With Palliative and End-of-Life Care Communication.

Background: Effective healthcare clinician communication is a key component of quality palliative and end-of-life (PEOL) care. However, communication may be hampered when clinicians are not comfortable initiating these conversations with patients and their families. Clinicians working in rural areas report several barriers to providing palliative care. This study examined the relationship between rural and urban clinicians' reported familiarity with their patients and families end-of-life, their reported comfort in initiating PEOL conversations, and their PEOL care knowledge. Method: This study used a cross-sectional design to examine the relationships between rural and urban clinicians' familiarity, their comfort in PEOL communication, and their PEOL care knowledge. Results: N = 548 rural and urban clinicians participated. Rural clinicians reported greater familiarity, more PEOL knowledge, and more comfort with PEOL communication. Multiple regression analyses of PEOL knowledge showed significant associations in knowledge with older clinicians (P < 0.01) and additional palliative care training (P < 0.01); comfort in PEOL communication had significant associations with more palliative care training (P < 0.01) and opportunities to provide palliative care (P < 0.01). Conclusion: The concept of familiarity is highly complex and poorly understood in relation to PEOL care in both rural and urban settings. Future research is needed to explore how additional training in PEOL care and clinician reported familiarity positively impact patient outcomes by increasing the number of advance directives completed and followed and improved documentation of advance care planning.

Effectiveness of initiating advance care planning among older outpatients through intervention by physicians trained in a model discussion video: A randomized controlled trial.

This study aimed to assess the impact of a physician-led intervention on advance care planning (ACP) introduction among older outpatients using a model discussion video. This prospective interventional study included Japanese general practice outpatients aged ≥65 years. All participants received an ACP leaflet. Co-researchers were trained using a model discussion video based on the "Serious Illness Conversation Guide," and provided ACP introduction explanations to the intervention group to ensure intervention content consistency. The control group received the ACP leaflet only, with no standardized explanations. The primary outcome was ACP discussion occurrence. Secondary outcomes included ACP engagement (assessed through the 4-item ACP Engagement Survey), engagement score for advance directives acquisition and score for surrogate decision-maker identification, and anxiety incidence (assessed through Generalized Anxiety Disorder-7). This study included 48 participants: 25 (52.1%) in the intervention group and 23 (47.9%) in the control group. Regarding primary outcome, the intervention group had significantly more ACP discussions compared with the control group (92.0% vs 26.1%, adjusted odds ratio 50.2, P = 0.0012). Regarding secondary outcomes, the intervention group showed greater readiness (mean scores for the 4-item Engagement Survey [P = 0.0001], engagement score for advance directives acquisition [P = 0.01] and score for surrogate decision-maker determination [P = 0.03]) than the control group, without increasing anxiety. This physician-led ACP introduction for older patients in a Japanese general practice setting enhanced ACP readiness and stimulated discussions, without increasing anxiety. The model discussion video for ACP introduction might effectively train physicians in general practice settings. Geriatr Gerontol Int 2024; ••: ••-••.

Rationale and design of a randomized controlled clinical trial of a resilience-building intervention in adults with congenital heart disease

BackgroundAdults with congenital heart disease (ACHD) are at risk for lower quality of life (QOL) and psychological health. Behavioral interventions to meet their psychosocial needs are lacking. The aim of this study is to evaluate the feasibility of implementing the Promoting Resilience in Stress Management (PRISM) intervention in ACHD and its efficacy in increasing resilience in this population. MethodsWe designed a phase II randomized controlled clinical trial of patients with moderate or complex ACHD, physiological stages C or D. Enrolled participants will be randomized to receive PRISM or usual care. PRISM is a manualized, skills-based behavioral intervention comprised of four one-on-one sessions targeting resilience resources (stress-management, goal-setting, cognitive reframing, meaning making), an optional session on advance care planning, and a facilitated family meeting. Participants in both groups will complete study questionnaires at enrollment and 3-months later. The primary aim is to describe feasibility, namely the proportions of patients who a) enroll in the study among those eligible, and b) complete the PRISM intervention among those randomized to that arm. We will also evaluate PRISM's efficacy by using linear regression models to compare changes in mean resilience scores between assigned groups. In exploratory analyses, we will evaluate effects on QOL, psychological distress, perceived competence for health care management, and comfort with advance care planning. DiscussionThis study will provide rigorous evidence to determine the feasibility and efficacy of a brief intervention to promote resilience and psychosocial health in ACHD. Findings may guide the development of a future multi-site effectiveness study.Clinical Trial Registration: NCT04738474.

Shared Care Planning for a pregnant patient with uveal melanoma treated with interventional radiotherapy (brachytherapy)

Introduction: Uveal melanoma (UM) is the most prevalent primary intraocular tumor in adulthood, with an important risk of metastasis, notably to the liver, rendering standard chemotherapy ineffective. Cases of UM onset during pregnancy are rare but can exhibit accelerated tumor growth. For these cases the best conservative treatment is interventional radiotherapy (IRT) also known as brachytherapy (BT). It is a form of radiotherapy that demonstrates efficacy comparable to the more common enucleation, while mitigating any risks of intrauterine toxicity. Objective: We reported the case of M., a 39-year-old pregnant patient, diagnosed with UM and undergoing brachytherapy treatment. Our aim is to make pertinent ethical considerations about: a. The ethical and clinical approach favouring a treatment strategy that preserves the affected organ and its functionality, b. The advance care planning process conducted within a multidisciplinary team. Case discussion: With the objective of preserving the mother’s health and ensuring the protection of the foetus, the team unanimously agreed, through a collaborative decision-making process, to proceed with the viable brachytherapy intervention. This approach results in a lower burden and maximizes benefits for both the patient and the unborn child. Conclusions: Considering a holistic evaluation, especially considering the patient’s pregnancy, the multidisciplinary approach proves fundamental. Collaboration between bioethicists and health-care professionals facilitated the development of a shared document for healthcare ethics planning, expressing the team’s ethical-clinical considerations.

Development of a Resource for Health Professionals to Raise Advance Care Planning Topics During Kidney Care Consultations: A Multiple User-Centered Design

Rationale & ObjectivePlanning and delivering treatment pathways that integrate end-of-life care, frailty assessment and enhanced supportive care is a service priority. Despite this, people with kidney failure are less likely to have an advance care plan, and receive hospice and palliative care, compared to other chronic illness populations. This is linked to health professionals feeling unskilled initiating conversations around future treatment and care options. This article describes research underpinning the development of a guide for kidney health professionals discussing end-of-life and advance care planning options with people with kidney failure and family members. Study DesignThe study comprised two parts: an initial cross-sectional qualitative approach using in-depth interviews with older adults with kidney failure and (bereaved) carers, followed by resource development with input from multiple stakeholders. Setting & ParticipantsOlder adults with kidney failure, and (bereaved) carers, recruited from two renal units in the North of England, and via online advertisements with national UK based, kidney patient charities. Resource development included input from co-applicants, independent advisory committee, patient and public involvement team, multidisciplinary health professionals and academics in the UK and Denmark. Analytical ApproachThematic analysis was used to analyze the data. ResultsTwenty-seven people were interviewed: older adults with kidney failure (n=18), carers (n=5), bereaved carers (n=4). Five themes are described: the context within which end-of-life conversations take place, preferences for end-of-life treatment and care, family members’ role and needs in supporting people with kidney failure at the end-of-life, expectations and experience of dialysis treatment, beliefs and experiences of death and dying. LimitationsParticipants were mainly White, British, and receiving hemodialysis. ConclusionsPeople with (lived) experience of kidney failure informed a guide which aims to build upon health professionals existing skills and improve confidence having conversations about future treatment and care. Kidney teams have expressed interest implementing the guide in practice and within their broader communications training packages.

Utilizing the 4Ms framework to create a structure and process to support voluntary health assessments in affordable housing.

A growing number of older adults live in senior affordable housing, many with limited support systems and representing underserved or disadvantaged populations. Staff in these buildings are in a unique position to identify and address the healthcare and biopsychosocial needs of their residents and link them to services and supports. Staff in four affordable housing sites received training on the 4Ms approach to caring for older adults and conducting resident health assessments. They learned to collect comprehensive health information using a 4Ms Resident Health Risk Assessment (4Ms-RHRA) and results are entered into a customized electronic database. Embedded flags identify potential risk factors and initiate a follow-up process for documenting interventions and tracking referrals to healthcare and supportive services. Eighty-one percent of the 221 4Ms-RHRAs completed with residents (63% female, mean age 71.1 years, 73% live alone) were flagged for at least one concern (Mean = 2.2 flags). Items addressing What Matters were most frequently flagged: resident's "most important health issue" (55%) and Advance Care Planning (ACP: 48%). In response, staff provided Advance Directive forms and Five Wishes pamphlets to interested residents and reminded residents to review ACP documents annually. Training affordable housing staff, precepting faculty, and students to conduct health assessments based on the 4Ms framework and longitudinally track interventions related to resident-centered needs and manage long-term service and supports is a first step in creating an interprofessional workforce capable of addressing the complex needs of older individuals in affordable housing.

Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life

ContextChildren from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. ObjectiveWe examine the characteristics of deceased children with a focus on race, ethnicity, and preferred language. MethodsWe conducted a cross-sectional study of patients who died at Texas Children's Hospital from 2018 to 2019. Demographics, date of death, and final code status were extracted. Medical complexity prior to admission and mode of death were obtained from chart review. ResultsWe included 433 patients. Over one-third were Hispanic (39.3%) with 42.3% preferring Spanish. The majority were White (61.4%) or Black (21.0%). Most patients had significant medical complexity (52.0%) or were infants in their birth admission (29.4%). Half (52.4%) received palliative care; patients with increased medical complexity were more likely to have palliative care involved (P<0.001). There were no differences in palliative care, code status, or mode of death by race. Hispanic patients were less likely to have a full code status (OR 0.42, 95% CI: 0.25–0.73). Spanish-speaking patients were more likely to have palliative care involvement (OR 2.05, 95% CI: 1.21–3.46) and less likely full code orders (OR 0.24, 95% CI: 0.1–0.63). ConclusionPalliative care services are engaged with most children at end of life and is accessible to marginalized patient groups. Spanish-speaking patients have different code status orders and modes of death at end of life. Further studies are needed to elucidate explanatory factors for differences revealed and multicenter studies are needed to characterize more widespread experiences.

Living and dying between cultural traditions in African & Caribbean Heritage families: a constructivist grounded theory

BackgroundEthnic differences influence end-of-life health behaviours and use of palliative care services. Use of formal Advance care planning is not common in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin end-of-life conversations within families of African and Caribbean heritage. This is a voice not well represented in the current debate on improving end-of-life outcomes.MethodsUsing Charmaz’s constructivist grounded theory approach, a purposive sample of elders, adult-children, and grandchildren of African and Caribbean Heritage were recruited. In-person and online focus groups were conducted and analysed using an inductive, reflexive comparative analysis process. Initial and axial coding facilitated the creation of categories, these categories were abstracted to constructs and used in theory construction.ResultsElders (n = 4), adult-children (n = 14), and adult grandchildren (n = 3) took part in 5 focus groups. A grounded theory of living and dying between cultural traditions in African and Caribbean heritage families was created. The constructs are (a) Preparing for death but not for dying (b) Complexity in traditions crosses oceans (c) Living and dying between cultures and traditions (d) There is culture, gender and there is personality (e) Watching the death of another prompts conversations. (f) An experience of Hysteresis.DiscussionAfrican and Caribbean cultures celebrate preparation for after-death processes resulting in early exposure to and opportunities for discussion of these processes. Migration results in reforming of people’s habitus/ world views shaped by a mixing of cultures. Being in different geographical places impacts generational learning-by-watching of the dying process and related decision making.ConclusionsRecognising the impact of migration on the roles of different family members and the exposure of those family members to previous dying experiences is important. This can provide a more empathetic and insightful approach to partnership working between health care professionals and patients and families of minority ethic heritage facing serious illness. A public health approach focusing on enabling adult-children to have better end of life conversations with their parents can inform the development of culturally competent palliative care.

Palliative Care Coordination Interventions for Caregivers of Community-Dwelling Individuals with Dementia: An Integrative Review.

Alzheimer's disease is a serious illness with a protracted caregiving experience; however, care coordination interventions often lack the inclusion of palliative care. The purpose of this integrative review is to identify and synthesize existing care coordination interventions that include palliative care for individuals with dementia and their caregivers living in community settings. The Whittemore and Knafl framework guided the review, with data analysis guided by the SELFIE framework domains. Study quality was assessed using the Mixed Methods Appraisal Tool, while the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines informed reporting results. Nine care coordination interventions involving family caregivers across eighteen publications were identified. Only a single intervention explicitly mentioned palliative care, while the remaining interventions included traditional palliative care components such as advance care planning, symptom management, and emotional support. Many of the identified interventions lacked theoretical grounding and were studied in non-representative, homogeneous samples. Further research is needed to understand the lived experiences of people with dementia and their caregivers to alleviate care coordination burden.

Can the use of a structured management approach using ABCDEF mnemonic to manage multi-morbdiity in HFpEF improve clinical outcomes?

Abstract Introduction Patients with heart failure with preserved ejection fraction (HFpEF) also have other co-morbidities which independently influence clinical outcomes as well as response to treatment. ESC guidelines recommend management of multimorbidity to improve clinical outcomes. The aim of this feasibility study was to test the use of a structured approach by HF specialist nurse using the prompt of an ABCDEF mnemonic to guide management of multimorbidity in HFpEF clinics and compare this with standard care (without prompt by a mnemonic). Methods This was a retrospective analysis of a prospective cohort study of 75 patients with recent decompensated HFpEF within 30 days, who were reviewed in a clinic by a HF specialist nurse. (38 patients in the "mnemonic" cohort and 37 patients in the standard care cohort). ABCDEF mnemonic was used to prompt the HF specialist nurse to address co-morbidities in the "mnemonic cohort" (A-Anaemia/Atrial fibrillation/sleep Apnoea, B- Blood pressure control, Body Mass Index, C- Chronic Kidney Disease and Chronic Obstructive Pulmonary disease, D- Diabetes control, E- Exercise rehab, F- Frailty assessment and need for advance care planning) whereas the HF nurse who assessed patients in standard care cohort followed standard national and international HFpEF guidelines for multimorbidity management (without the aid/prompt of a mnemonic). We also compared all-cause readmissions at 30 days and 3 months between the 2 cohorts. Statistical analysis was performed using Chi-squared test or Student’s T test as appropriate. Results The mean age was comparable between the 2 cohorts (mnemonic cohort -77.5±13.6, standard care 76.9±10.2 p=0.8) as was the proportion of female patients (mnemonic cohort 54% vs. standard care 46%; p=0.45). There was also no significant difference in terms of co-morbidities (mnemonic cohort 3.7±1.2 vs. std. care 3.6±1.1; p=0.7), frailty (mnemonic cohort 4.3±1.3; std. care 4.5±1.1; p=0.42), NTproBNP (Mnemonic cohort 1590 ng/L (368-11657(; std. care 1926 ng/L IQR- 389-10593; p=0.51). Investigations or interventions were performed to address co-morbidities in lower proportion of HFpEF patients in the standard care cohort (43%) compared to mnemonic cohort (100%; p&amp;lt;0.001). 30-day all-cause re-admissions showed a trend towards being lower in the mnemonic cohort (30 readmissions mnemonic 10% vs. std. care 22%; p=0.1); 3 month (mnemonic cohort 16%, std. care 35% p=0.05). Conclusions Use of a structured mnemonic approach to manage multimorbidity appears to be an easy tool to apply in HFpEF clinics, reflected by the high adherence rate and shows a trend towards lower 3-month all-cause readmissions. The results will need to be validated in a a larger randomised controlled trial with longer follow-up.

Psychometric testing of the training needs for advance care planning scale for clinicians and nurses

BackgroundStudies have shown that Chinese Clinicians and nurses have positive attitudes toward ACP, but no local tools exist to assess their need for ACP knowledge and skills training. resulting in their inability to initiate ACP conversations as well as poor end-of-life care for patients. Therefore, this study aims to assess the needs of Chinese Clinicians and nurses for ACP knowledge and skills training and assess the validity and reliability of a questionnaire on the Training Needs for Advance Care Planning (TNACP) scale.MethodsFrom October to November 2021, 170 clinicians and nurses were pre-surveyed using a preliminary draft of the questionnaire. The responses were screened using item analysis, Cronbach’s alpha coefficient, and the intraclass correlation coefficient (ICC) to describe the internal consistency and stability of the questionnaire. The Content validity index (CVI), Exploratory factor analysis (EFA) and Confirmatory factor analysis (CFA) were used to test the validity of the questionnaire.ResultsAfter independent samples t-test analysis, Except for the entry “A2”, the critical ratio between the two groups of the remaining 23 items was statistically significant (p < 0.05). Based on the above screening methods, the “A2” item was deleted, and the final number of questionnaire items was 23. The I-CVI was 0.79–1.00, and the S-CVI/Ave was 0.90. Three common factors were extracted—the cumulative contribution rate was 69.969%, and the factor loading of all items was 0.506–0.843 (all > 0.40). The results of confirmatory factor analysis showed that the Training Needs for Advance Care Planning (TNACP) scale model fit well(X2/df = 2.504, RMSEA = 0.092, GFI = 0.809, AGFI = 0.745, CFI = 0.931, IFI = 0.932, TLI = 0.916); the Cronbach’s α = 0.888 for the total questionnaire, and the three dimensions of Cronbach’s α were 0.729 to 0.959; and the ICC for the overall scores between the test-retest evaluations was 0.884 (p < 0.001).ConclusionsThe TNACP scale has good reliability and validity and can be used to assess Chinese Clinicians and nurses’ training needs for implementing ACP.

Rationale and Design of a Multicenter Trial on Exploratory Analysis of the Effects of Advance Care Planning Guided by the Prediction Program of Heart Failure Prognosis on Quality of Life in Patients With Heart Failure - ACQUAINT-Trial.

Background: Preplanning of care is necessary for patients with endstage heart failure (HF), but advance care planning (ACP) before the loss of a patient's comprehensive capacity is not yet routine for the public or the medical community. The challenge in accurately predicting a patient's prognosis is a strong barrier to implementing ACP. To address this problem, several models for risk stratification have been proposed and are available in clinical settings. Methods and Results: We randomized the procedure to provide estimated patient survival information to attending physicians and then assessed whether there was a change in (1) the frequency of ACP initiation occurred (physician-side evaluation), and/or (2) the patients' quality of life, including mental state (patient-side evaluation). Conclusions: This multicenter, open-label, single-blinded randomized clinical trial aims to assess the hypothesis that providing information on the estimated survival of a patient to the attending physicians will improve the frequency of ACP initiation and quality of life in patients with HF.

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

ContextAdvance 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.ObjectivesTo assess the readiness for advance care planning and related factors in the general population of Iran.MethodsThis 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.ResultsA 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)).ConclusionAccording 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.

Professional Quality of Life and Advance Care Planning Self-efficacy of Medical and Surgical Nurses

Professional Quality of Life and Advance Care Planning Self-efficacy of Medical and Surgical Nurses

Experiences with implementing advance care planning (ACP-GP) in Belgian general practice in the context of a cluster RCT: a process evaluation using the RE-AIM framework

BackgroundGeneral practice is often recommended as an ideal setting to initiate advance care planning (ACP), but uptake of ACP in this setting is low. ACP-GP is a complex intervention to facilitate ACP for patients with chronic, life-limiting illness in Belgian general practice. It aims to increase patient ACP engagement and general practitioner (GP) ACP self-efficacy. In a cluster-randomized controlled trial, the intervention was not superior to control in increasing these outcomes. A parallel process evaluation aimed to enhance understanding of how the intervention was implemented, and which factors might have influenced trial results.MethodsWe conducted a mixed-methods process evaluation following the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework. Data sources include recruitment and implementation monitoring, questionnaires for patients and GPs, and semi-structured (focus group) interviews with patients and GPs. Questionnaire data were analyzed descriptively. Qualitative data were first analyzed inductively; themes were then assigned deductively to RE-AIM dimensions.ResultsThirty-five GPs and 95 patients were recruited to the trial; GP reach was low. Sixteen GPs and 46 patients provided questionnaire data at 3 months post-baseline; qualitative data were transcribed for 14 GPs and 11 patients. Adoption of intervention components was moderate to good, with the exception of the documentation template for GPs. Interviews revealed varying patient attitudes towards ACP, but patients nonetheless emphasized that conversations made them feel reassured. GPs especially valued a positive framing of ACP. When adopted, the intervention was well-implemented and participant satisfaction was high. However, intention for maintenance was moderate, with GPs raising questions of how to sustainably implement ACP conversations in the future.ConclusionsImplementing the complex ACP-GP intervention in general practice is feasible, and can be successful. However, the implementation process is challenging and the sustainability is suboptimal. Our findings will guide future research and recommendations for facilitating and implementing ACP in general practice.Trial registrationISRCTN12995230; prospectively registered on 19/06/2020.

Normality and compassionate care: experiences from advanced cancer patients in their last time at home

BackgroundMany cancer patients prefer to receive palliative treatment at home, as it allows them to be in a familiar and comfortable environment. Integrating Advance Care Planning (ACP) into routine practice in primary healthcare helps patients and their relatives prepare for end-of-life (EoL) care in accordance with patients’ preferences. This includes the option to spend their final days at home if desired. The aim of this study was to gain insights from experiences of advanced seriously ill cancer patients at home while receiving palliative treatment and being engaged in ACP within primary healthcare settings.MethodThis study employed a qualitative design, utilizing individual, semi-structured interviews that were analysed through reflexive thematic analysis, employing an abductive approach with a latent-level focus. The study included interviews with 12 participants with cancer who were receiving palliative care, had an estimated lifetime under 3 months, and had undergone an organized ACP approach in primary healthcare, documented with a palliative plan.ResultsParticipants emphasized the importance of (1) Preserving normality at home, maintaining a sense of routine, comfort, and familiarity in the face of present and future challenges. The top obstacles for success identified by participants included (1a) The challenge of deterioration and the dual aspects of (1b) The value and burden of family caregivers. Cancer treatment placed a significant demand on patients due to side effects. Family caregivers played a crucial role for participants, providing support in daily life and serving as a key factor in the overall decision to which extend they are able to involve in support and care at home in the future. (2) Compassionate health care personnel (HCP) made a difference by fostering a culture of understanding participants’ concerns, fears, and preferences, which was a key element that built and maintained trust for the participants. (3) Preparing for the future, especially EoL discussions initiated by healthcare personnel, was deemed important but, at times, uncomfortable for participants as it confronted them with reality. Guidance from ACP provided them with a sense of certainty and control.ConclusionPreserving normality at home, along with the desire to stay at home for as long as possible, is a crucial goal for advanced cancer patients. Consistent professional communication and care in primary healthcare play a key role in building and maintaining trust, as well as fostering a sense of certainty and control for the participants.

Utility of do-not-resuscitate orders for critically ill infants in the NICU.

To better understand the value of DNR orders for critically ill infants in the NICU. A prospective mixed-methods approach was utilized including chart review of infants who died in a regional NICU over a twenty-six-month period and surveys of their neonatologists, neonatal fellows, and nurses. 40 infants died during the study period and 120 staff surveys were completed. Infants with DNR orders were of a higher gestational age at birth and a higher chronological age at death. Nurses were more likely to perceive benefit from DNR orders than physicians. Medical staff recollection of the existence of DNR orders was not always accurate. Time and fear of adding unnecessary emotional burden to parents were identified as barriers to DNR order implementation. An advanced care planning model built on open communication instead of DNR order documentation was deemed the best approach. Though DNR orders are beneficial for a subset of infants, DNR orders are likely not applicable for all infants who die in the NICU. More important is supportive, individualized communication between families and the medical team to ensure quality end-of-life care. In the adult and pediatric ICU literature, DNR orders are associated with improved qualitative "good death" assessments and decreased familial decision regret. In the NICU, rates of DNR usage aren't well reported and their overall utility is unclear. Though DNR orders can help guide clinical decision making in the NICU and may be associated with higher quality ethical discussion, our data suggest that they are not applicable in all patient cases. We hope that this work will help guide approaches to end-of-life care in the NICU and underscore the importance of frequent, open communication between families and their medical team.

Palliative care in dermatooncology - Current practice in German dermatooncological centers and specialist offices.

Dermato-oncology patients are often treated in certified skin cancer centers or dermato-oncological specialist offices. Especially in higher tumor stages, patients develop symptoms, either disease-related or due to therapy-related side effects, requiring treatment. Despite a markedly improved prognosis since the introduction of targeted therapies and immunotherapies, advance care planning is required in progressive disease. It is unclear how palliative care of skin cancer patients is currently organized in dermato-oncology. In a nationwide survey, all certified skin cancer centers and dermato-oncological specialist offices in Germany were contacted and asked to participate in this anonymized survey. Overall, 45 responses (42%) were received. The majority (98%) of the respondents screen the patients on a regular basis for distressing symptoms, and all centers are connected to palliative medical care providers. Only 5% of the medical staff members have the additional qualification "palliative medicine". In 68% of the participating institutions, the opportunity for care planning is offered to patients. For 89%, palliative care is relevant for everyday work, and 82% desire more research opportunities on this topic. This survey has shown that palliative care plays a major role in dermato-oncological work. Given that only a small proportion of the staff have received specialized training in palliative care, however, an increase of this proportion would be desirable for comprehensive care.

Physicians' knowledge, attitudes and practices on advance care planning for patients with advanced cancer in a National University Hospital in the Philippines.

Advance care planning (ACP) is generally part of patients' rights and decision-making processes. It is a component of the patient-physician care dynamics, especially in the context of life-threatening illness. Little is known about ACP and the utilisation of advance directives in the Philippines, a country of 110 million people. The study aimed to explore the knowledge, attitudes and practices (KAPs) of resident physicians in a national university hospital in the Philippines regarding ACP for patients with advanced cancer. Using a cross-sectional design involving resident physicians, an online survey with a self-administered questionnaire was distributed and answered by a total of 202 respondents. Results show that resident physicians generally: (1) view palliative and hospice medicine to be the same and without differences, (2) are comfortable with discussing ACP and prognosis of medical conditions with patients and their families, but (3) do not regularly initiate or offer ACP to them, (4) identify a lack of time, fear of imparting emotional distress to patients and their families and personal discomfort as barriers to conducting ACP and (5) have had no formal training for ACP but are willing to undergo such formation, given the opportunity. This study highlights the continuing need to bridge and unite KAPs pertaining to ACP among physicians. Further studies should be undertaken to device a proper training program and better explore the complexities of end-of-life care as it is experienced by Filipino patients with advanced cancer.