Building public engagement and access to palliative care and advance care planning: a qualitative study.

BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

Factors Contributing to Non-Concordance Between End-of-Life Care and Advance Care Planning.

CONTEXT: Despite making do-not-resuscitate or comfort care decisions during advance care planning, terminally ill patients sometimes receive life-sustaining treatments as they approach end of life. OBJECTIVES: To examine factors contributing to nonconcordance between end-of-life care and advance care planning. METHODS: In this longitudinal retrospective cohort study, terminally ill patients with a life expectancy shorter than six months, who had previously expressed a preference for do-not-resuscitate or comfort care, were followed up after palliative shared care intervention. An instrument with eight items contributing to non-concordant care, developed through literature review and experts' consensus, was employed. An expert panel reviewed electronic medical records to determine factors associated with non-concordant care for each patient. Statistical analysis, including descriptive statistics and the chi-square test, examines demographic characteristics, and associations. RESULTS: Among the enrolled 7871 patients, 97 (1.2%) received non-concordant care. The most prevalent factor was "families being too distressed about the patient's deteriorating condition and therefore being unable to let go" (84.5%) followed by "limited understanding of medical interventions among patients and surrogates" (38.1%), and "lack of patient participation in the decision-making process" (25.8%). CONCLUSIONS: This study reveals that factors related to relational autonomy, emotional support, and health literacy may contribute to non-concordance between advance care planning and end-of-life care. In the future, developing an advance care planning model emphasizes respecting relational autonomy, providing emotional support, and enhancing health literacy could help patients receiving a goal concordant and holistic end-of-life care.

Measuring patients' medical treatment preferences in advance care planning: development and validation of the Treat-Me-ACP instrument - a secondary analysis of a cluster-randomized controlled trial.

BACKGROUND: Advance Care Planning interventions should be evaluated as broadly as possible to gain a holistic understanding of the Advance Care Planning process. However, validated early stage outcome instruments are lacking. Therefore, the Treatment-Preference-Measure-Advance Care Planning (Treat-Me-ACP) instrument was developed and validated as part of the cluster-randomized controlled trial STADPLAN (Study on Advance Care Planning in care-dependent community-dwelling older persons) to assess the effects of Advance Care Planning interventions on patients' medical treatment preferences. METHODS: The design of Treat-Me-ACP is based on the Emanuel Medical Directive and the Life Support Preferences Questionnaires. Using a multi-stage team approach a preliminary version of the Treat-Me-ACP was developed and pre-tested. The pre-tested instrument consists of one global medical care goal-item, five hypothetical scenarios with five hypothetical treatments, and one how would you feel-item within each scenario. A total of five scenario preference scores and five treatment preference scores can be formed. This version was subsequently applied to a subsample of the STADPLAN project (n = 80) to assess patient's preferences at baseline (T0) and at 12-month follow-up (T2). The further validation steps were based on this subsample and included: (1) acceptance by using completion rate and frequencies of missing data, (2) internal consistency by using Cronbach's α to test whether it was possible to create preference scores by scenario and treatment, (3) concurrent validation examining the association between the global medical care goal-item and the preference scores and the association between the how would you feel-items and the scenario preference scores, and (4) responsiveness of the instrument to changes in preferences for life-sustaining treatments by comparing preference scores from T0 to T2 between study groups. RESULTS: Acceptance of the instrument was high. Results of concurrent validation indicate that the five scenarios represent the global medical care goal well. The preference scores showed an average tendency for decreasing preferences for life-sustaining treatments across all scales for the intervention group during study follow-up. CONCLUSIONS: The Treat-Me-ACP can be used to evaluate the dynamics of patients' medical treatment preferences in Advance Care Planning. It has been validated for care-dependent community-dwelling older persons and can be used as an additional outcome measure in evaluating the effectiveness of ACP interventions. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00016886 on 04/06/2019.

Contemporary challenges for SCPDNs in the provision of end-of-life care.

The advancement in the knowledge and skills required by the Specialist Community Practitioner District Nurse (SCPDN) is integral in supporting end-of-life care. An integrated and multi-disciplinary team approach is pivotal for high quality patient care delivery, which involves individuals and their significant others in decision-making at a sensitive time. Advanced care planning and the use of therapeutic communication by the SCPDN can help to support autonomy in individuals during uncertain times, enabling them to express their end-of-life wishes. The SCPDN, guided by the evidence base, must provide holistic care and manage palliation while ensuring the patient is at the centre of all decisions.

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.

Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds.

Background: This study explored whether or not, and how, terminally ill patients from ethnically diverse backgrounds and their family caregivers think ahead about deterioration and dying, and explored their engagement with health-care professionals in end-of-life care planning. Objective: The aim was to address the question, what are the barriers to and enablers of ethnically diverse patients, family caregivers and health-care professionals engaging in end-of-life care planning? Design: This was a qualitative study comprising 18 longitudinal patient-centred case studies, interviews with 19 bereaved family caregivers and 50 public and professional stakeholder responses to the findings. Setting: The study was set in Nottinghamshire and Leicestershire in the UK. Results: Key barriers - the predominant stance of patients was to live with hope, considering the future only in terms of practical matters (wills and funerals), rather than the business of dying. For some, planning ahead was counter to their faith. Health-care professionals seemed to feature little in people's lives. Some participants indicated a lack of trust and experienced a disjointed system, devoid of due regard for them. However, religious and cultural mores were of great importance to many, and there were anxieties about how the system valued and enabled these. Family duty and community expectations were foregrounded in some accounts and concern about being in the (un)care of strangers was common. Key enablers - effective communication with trusted individuals, which enables patients to feel known and that their faith, family and community life are valued. Health-care professionals getting to 'know' the person is key. Stakeholder responses highlighted the need for development of Health-care professionals' confidence, skills and training, Using stories based on the study findings was seen as an effective way to support this. A number of behavioural change techniques were also identified. Limitations: It was attempted to include a broad ethnic diversity in the sample, but the authors acknowledge that not all groups could be included. Conclusions: What constitutes good end-of-life care is influenced by the intersectionality of diverse factors, including beliefs and culture. All people desire personalised, compassionate and holistic end-of-life care, and the current frameworks for good palliative care support this. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people's lives that may be unfamiliar. The challenge for health-care professionals and services is the delivery of holistic care and the range of skills that are required to do this. Future work: Priorities for future research: How can health professionals identify if/when a patient is 'ready' for discussions about deterioration and dying? How can discussions about uncertain recovery and the need for decisions about treatment, especially resuscitation, be most effectively conducted in a crisis? How can professionals recognise and respond to the diversity of faith and cultural practices, and the heterogeneity between individuals of beliefs and preferences relating to the end of life? How can conversations be most effectively conducted when translation is required to enhance patient understanding? Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. X. See the NIHR Journals Library website for further project information.

This study explored the experiences of terminally ill patients and their families from different ethnic backgrounds and whether or not, and how, they think ahead about their health getting worse and about dying. It included 93 interviews from 18 patient case studies, 19 interviews with bereaved family caregivers and workshops with 50 public and professional stakeholders. Most patients and their family caregivers lived with hope, considering the future only in terms of practical matters of wills and funerals, rather than thinking about becoming less well and dying, which, for some, was counter to their beliefs. Family duty and community expectations stopped some participants from seeking additional support. However, when the family did not know how gravely ill the patient was, the patient's unexpected decline and death could be a devastating experience, with regret that they had been denied the chance to prepare and to make the best use of the time. Health-care professionals appear to feature little in people's lives. Some participants indicated a lack of trust and a poor experience of health care, but others talked of good experiences. People want care that is personal to them and compassionate. This is no different from people from white British backgrounds and supports the use of different physical, social, spiritual and psychological care frameworks used in palliative care to address the individual needs of patients and families. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people's lives that may be unfamiliar. Personalising care requires health-care professionals to get to 'know' the person and develop confidence and skills to support patients and their families. Training, using stories based on our interviews, was seen as an effective way to support this. Effective communication and information-sharing between trusted individuals was seen by stakeholders as important in providing better care.

Advance Care Planning in the Netherlands.

The Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct ACP, for example, to continue or initiate conversations after hospitalization. However, research shows that ACP conversations are often ad hoc and in frail patients, ACP is often only initiated when admitted to a nursing home by elderly care physicians who are on the staff. Tools that raise awareness of triggers to initiate ACP, screening tools, information brochures, checklists and training have been developed and implemented with funding by national programs which currently focus on implementation projects rather than or in addition to, research. The programs commonly require educational deliverables, patient and public involvement and addressing diversity in patient groups. A major challenge is how to implement ACP systematically and continuously across sectors and disciplines in a way that supports a proactive yet person-centered approach rather than an approach with an exclusive focus on medical procedures. Digital solutions can support continuity of care and communication about care plans. Solutions should fit a culture that prefers trust-based, informal deliberative approaches. This may be supported by involving disciplines other than medicine, such as nursing and spiritual caregiving, and public health approaches.

A Revised Approach to Advance Personal Planning: The Role of Theory in Achieving "The Good Result".

This article explores traditional views of advance care planning in the broader context of advance personal planning, which also accounts for legal and financial matters. Criticisms of existing processes are noted, while the significance of interprofessional collaboration is highlighted. Reframing the purpose of advance personal planning as planning for the rest of life, rather than the end-of-life, and adopting a more holistic perspective informed by theory may help individuals to view advance personal planning as a routine, preventative exercise that safeguards their autonomy and well-being. Both lawyers and healthcare providers have an important role to play in reframing the purpose of advance personal planning. This revised approach is underpinned by the unification of two separate theoretical lenses: Preventive Law Theory and Therapeutic Jurisprudence. This combination enhances our understanding of what it means for people to truly achieve "the good result" (Holtz 2017) when planning ahead for their future legal, financial, health, and personal interests. Preventive Law Theory encourages an ongoing, collaborative relationship between lawyers and their clients, or healthcare providers and their patients, while Therapeutic Jurisprudence ensures an ethical approach to advance personal planning that accounts for all aspects of the individual's well-being, including consideration of vulnerability, autonomy, and empowerment.

End-of-Life Care Planning in Diverse Individuals Across Age Groups: A Proposed Conceptual Model of Nursing.

BACKGROUND: End-of-life planning helps nurses meet the needs of their patients at a crucial time of life. PURPOSE: This article presents a conceptual model of end-of-life care planning for nurses, especially those in palliative and hospice care, focusing on holistic nursing views. METHODS: Based on a literature review, we developed a new conceptual model illustrating the concepts and dimensions of end-of-life care planning among diverse individuals across countries, life spans and age groups, ethnographies, and residential statuses. RESULTS: This conceptual model includes 3 concepts: personal factors, stakeholders, and environmental and social factors. Each concept encompasses multiple dimensions. The concepts are interrelated and directly related to end-of-life care planning. CONCLUSION: This work addresses the need for a comprehensive end-of-life care planning model and can help enhance the quality of end-of-life care. This article identifies implications for nursing education, practice, and research.

Chinese Diaspora Communities' Knowledge of and Engagement with Advance Care Planning: A Systematic Integrative Review.

Objectives: To synthesize evidence regarding Chinese diasporas' understanding, experience, and factors influencing engagement with advance care planning. Methods: A systematic integrative review using content analysis. Seven electronic databases (Embase, CINAHL, SCOPUS, Web of Science, Medline (OVID), PsycINFo, and The Cochrane Library) and gray resources were searched for studies from January 1990 to March 2022. Study quality appraisal was undertaken. Results: 27 articles were identified and rated as moderate to good. Two overarching and interrelated themes were identified, "Awareness and knowledge" and "Engagement with advance care planning." There are low levels of awareness, knowledge and engagement with advance care planning for Chinese diaspora. Findings highlight that this is influenced by two key factors. First, the geographic context and legal, cultural, and social systems within which the Chinese diasporas are living act as a potential catalyst to enhance awareness and engagement with advance care planning. Second, aspects of Chinese diasporas' original culture, such as filial piety and a taboo surrounding death, were reported to negatively affect the promotion and engagement of advance care planning. Significance of Results: Chinese diasporas are intermediaries between two divergent cultures that intertwine to strongly influence engagement with advance care planning. Hence, a bespoke culturally tailored approach should be accommodated in future research and practice for Chinese communities in multicultural countries to further advance palliative and end-of-life care awareness among this group.

Relationship Between Religion/Spirituality and the Aggressiveness of Cancer Care: A Scoping Review.

CONTEXT: Religiosity/spirituality/religious-spiritual coping (RS) are resources used by cancer patients with cancer to help cope with the disease and may influence the preference and receipt of end-of-life (EOL) treatment. OBJECTIVES: To examine the relationship between RS and the EOL care preferred or received by cancer patients. METHODS: This review protocol is registered on (International Prospective Register of Systematic Review, CRD42021251833) and follows the recommendations of the preferred reporting items for systematic reviews and meta-analyses checklist. Embase, Proquest, PubMed, Scopus, and Web of Science databases were consulted. Google Scholar was consulted for additional publications and gray literature. Quantitative studies including adults with any cancer type/stage were eligible. The paper selection was performed by two independent reviewers; the methodological quality was measured using the Newcastle Ottawa scale. RESULTS: Seventeen studies were included in the review. In general, RS is related to the preference or receipt of aggressive EOL care and with less advance care planning. Spiritual care by the medical team is related to higher referral to hospice and less aggressive care; in contrast, high spiritual support from religious communities is associated with less hospice and more aggressive care. Religious denominations influenced health care preferences, as Catholics were less likely to sign a do-not-resuscitate order and Buddhists or Taoists received more aggressive interventions at the EOL. Most studies (70%) were of high quality according to the Newcastle Ottawa scale. CONCLUSION: RS is associated with more aggressive EOL treatments, as well as with lower rates of ACP in cancer patients. On the other hand, spiritual care provided by the medical team seems to be associated with less aggressive EOL care.

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.

A meta-synthesis on the older adults' perspective of advance care planning.

AIM: To synthesise the evidence regarding older adults' perception of advance care planning in preparation for end-of-life care. BACKGROUND: Advance care planning involves continuous communication of end-of-life care goals involving an individual's medical treatment preferences. However, its uptake among older adults remains low. DESIGN: The meta-synthesis was conducted according to the Enhancing Transparency in Reporting the Synthesis of Qualitative research (ENTREQ) guidelines and thematic synthesis was employed to synthesise the qualitative findings in an inductive manner. DATA SOURCE: A search was completed on six electronic databases (PubMed, EMBASE, CINAHL, PsycINFO, Web of Science, Scopus), for publications from 1 January 2000 to 4 December 2021. REVIEW METHOD: The certainty of the evidence was assessed using the Grading of Recommendations Assessment, Development and Evaluation and Confidence (GRADE-CERQual) in the Evidence from Reviews of Qualitative research. Two independent reviewers conducted this process, and disagreements were resolved through discussions. RESULTS: Fourteen studies were analysed. Four major themes and eleven subthemes emerged from the thematic synthesis: (1) psychosocial preparedness, (2) medical preparedness, (3) psychological barriers towards advance care planning and (4) extrinsic barriers towards advance care planning. DISCUSSION: These themes consolidated older adults' views of advance care planning and how engagement in this planning affected their end-of-life preparedness. CONCLUSION: This review suggested psychological and extrinsic factors were barriers to the uptake of advance care planning and provided directions for future research to achieve a holistic understanding of the impact of advance care planning on end-of-life preparedness. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals could maintain close communication with older adults and families periodically to evaluate their readiness to discuss advance care planning to improve their preparedness. Healthcare professionals could also provide psychological support during the discussion of clinical decision-making to enhance readiness and confidence among older adults and their families.

[Advance care planning and use of health resources among COVID-19 nursing home patients in an integrated health care program for frail elders]. / Planificación anticipada de los cuidados y del uso de recursos hospitalarios en pacientes con COVID-19 en un programa de atención integrada para adultos mayores frágiles en residencias.

OBJECTIVES: To estimate the magnitude and importance of a process of stratification and advance care planning and the use of health resources, among patients in an integrated health care program for frail elderls in nursing homes,that were referred to the hospital with COVID-19. MATERIAL AND METHODS: Prospective cohort study of patients >64 years old with COVID-19 infection, in a health care program in nursing homes (from 3/15/2020 to 9/15/2020). The identification of patients with palliative needs, the performing and visible registration in electronic health records of the advance care planning and the use of intensive care were assessed. RESULTS: We included 374 COVID-19 patients. 88% were women, the median age was 88 years old. The 79% were patients with palliative needs, of which 68% had the advance care planning (P<.001) registered in the electronic health record. Only 1% of patients with palliative needs and severity criteria were admitted to the intensive care unit. Overall mortality was 25%. Of those who died, 74% had severity criteria (P<.001) and 90% had palliative needs (P<.001). CONCLUSIONS: Carrying out a care process based on identification of patients with palliative needs and advance care planning and a central and visible registration of advance care planning in health records, could improve the quality and safety of care and optimize the use of intensive care health resources at all times and especially in public health emergencies.

Impact of advance care planning and end-of-life conversations on patients with cancer: An integrative review of literature.

PURPOSE: The purpose was to review published articles to examine the impact of advance care planning (ACP) and end-of-life (EOL) conversations on patients with cancer, and aimed to compare the findings for congruency with the goals of ACP. DESIGN AND METHOD: The study was guided by Whittemore and Knafl's integrative review methodology. Articles published between 2015 to 2020 were identified through electronic databases. The search included: Cumulative Index for Nursing Allied Health Literature (CINAHL), PubMed, MEDLINE-Ovid, and MEDLINE full text, and using the MeSH terms. Two hundred and five (205) articles were identified and screened for eligibility, and 15 articles were appraised. FINDINGS: The fifteen (15) articles that met the inclusion criteria included five (5) qualitative, eight (8) quantitative, and two (2) mixed methods. The review analysis revealed six themes emerged in three categories: cancer patients' experience with advance care planning (1) patients' prognostic awareness, (2) decision making; cancer patients' perceived outcomes with advance care planning (3) patient-provider relationship, (4) concordance in care based on goals, and cancer patients' propositions related to advance care planning, (5) timings of advance care planning discussions, and (6) support during ACP and/or EOL conversations. CONCLUSION: ACP and EOL conversations play a critical role in cancer patients' awareness of their disease and prognosis and help them in making end-of-life care decisions. CLINICAL RELEVANCE: There exists a need for earlier ACP and EOL conversations with cancer patients with emotional support during these conversations.

Advance Care Planning in Serious Illness: A Narrative Review.

CONTEXT: Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility. OBJECTIVE: To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness. METHODS: We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care. RESULTS: Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP might also provide a false sense of security that patients' wishes will be honored and revisited at end-of-life. An iterative, 'building block' framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations. CONCLUSIONS: We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters.

Views of advance care planning in older hospitalized patients following an emergency admission: A qualitative study.

BACKGROUND: There is increasing evidence of the need to consider advance care planning (ACP) for older adults who have been recently admitted to hospital as an emergency. However, there is a gap in knowledge regarding how to facilitate ACP following acute illness in later life. AIM/OBJECTIVES: To explore the perceived impact of ACP on the lives of older persons aged 70+ who have been acutely admitted to hospital. METHOD: Semi-structured qualitative interviews were conducted with older adults aged 70+ who were admitted to hospital as an emergency. Thematic analysis was enhanced by dual coding and exploration of divergent views within an interdisciplinary team. RESULTS: Twenty participants were interviewed. Thematic analysis generated the following themes: (1) Bespoke planning to holistically support a sense of self, (2) ACP as a socio-cultural phenomenon advocating for older persons rights, (3) The role of personal relationships, (4) Navigating unfamiliar territory and (5) Harnessing resources. CONCLUSION: These findings indicate that maintaining a sense of personal identity and protecting individuals' wishes and rights during ACP is important to older adults who have been acutely unwell. Following emergency hospitalization, older persons believe that ACP must be supported by a network of relationships and resources, improving the likelihood of adequate preparation to navigate the uncertainties of future care in later life. Therefore, emergency hospitalization in later life, and the uncertainty that may follow, may provide a catalyst for patients, carers and healthcare professionals to leverage existing or create new relationships and target resources to enable ACP, in order to uphold older persons' identity, rights and wishes following acute illness.

Advance Directive Completion Among Black Adults Within a Community-Based Integrated Health Care System.

ObjectivesThe study was conducted to estimate the prevalence of advance directive (AD) completion among Black adults vs non-Hispanic White adults within Kaiser Permanente Northern California integrated health system that includes access to outpatient advance care planning (ACP) specialists and to identify medical services utilization patterns and societal factors that could influence ACP engagement. DesignThe study was carried out through retrospective analysis of electronic health record data of active Kaiser Permanente Northern California members from January 1, 2013 to December 31, 2017, who were age 55 and older, and represented 572,466 active members, of which 11.7% were Black adults. The primary objective was AD completion comparing Black adults to non-Hispanic White adults. Demographic data included age, sex, comorbidities (Charlson comorbidity score ≥ 3) and medical services utilization (inpatient, outpatient, and emergency department [ED] use). Sociodemographic data derived from census data that include census block demographics and head of household educational attainment were utilized. ResultsBlack adults were younger, but had a higher burden of comorbidities (Charlson comorbidity score ≥ 3, 25.3% vs 19.3%) and were more likely to have multiple ED visits (6.7% vs 3.3%) compared to non-Hispanic White adults. The crude AD completion rate was lower among Black adults (10.0% vs 20.3%), and after adjusting for age and health system service area, the difference remained largely unchanged (11.7% vs 20.3%) compared to non-Hispanic White adults. ConclusionsAmong Kaiser Permanente Northern California members with access to outpatient ACP specialists, Black adults were only half as likely to complete an AD. This disparity was only slightly attenuated when standardized for age and health system service area. In addition, Black adults were also less likely to use outpatient services and more likely to use ED services.

Beyond Turmeric and Yoga: Advance Care Planning and End-of-Life Considerations Among Asian Indian American Hindus.

Hinduism is the fourth largest religion in the United States; an understanding of Hindu beliefs and practices will help health care providers deliver culturally sensitive care while discussing advance care planning and end-of-life care for adult patients. For many Westerners, the practice of yoga, Ayurveda, and vegetarianism is used by people striving to live healthfully. However, what might be unfamiliar to Westerners is how for Hindus, these practices reflect their millennia-old spirituality and religiosity. Knowing the Hindu beliefs of atman, Brahman, karma, and moksha will help nurses connect to Hindus' various end-of-life wishes. In addition, getting familiar with interrelating factors such as lack of knowledge on palliative care and advance care planning, family dynamics, acculturation, and personal preferences will allow nurses to provide culturally competent care. By facilitating end-of-life conversations at an early stage, nurses can promote confidence and self-efficacy for patients who may fear that their religiosity and personal priorities are trivialized by acculturated family members or disregarded by their adopted homeland. This clinical article provides nurses with information about Asian Indian American Hindus' beliefs and practices, clinical implications for assessment, and suggestions to support patients' and families' end-of-life wishes.

A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended.

BACKGROUND: Broad consensus exists on the relevance of advance care planning in dementia. Although people with young-onset dementia and their family are hypothesized to have distinct needs and preferences in this area, they are hardly ever included in studies. AIM: We aim to explore the experiences with and views on advance care planning of people with young-onset dementia and their family caregivers. DESIGN: A qualitative study was conducted, analyzing semi-structured interviews through the method of constant comparative analysis. SETTING/PARTICIPANTS: We included 10 people with young-onset dementia and 10 of their family caregivers in Flanders. RESULTS: Participants lacked awareness about the concept of advance care planning, especially as a communication process. They had not or barely engaged in planning future care yet pointed out possible benefits of doing so. Initially, people with young-onset dementia and their caregivers directly associated advance care planning with planning for the actual end of life. When discussing advance care planning as a communication process, they paid ample attention to non-medical aspects and did not distinguish between medical, mental, and social health. Rather, respondents thought in the overarching framework of what is important to them now and in the future. CONCLUSIONS: Engagement in advance care planning might be hindered if it is too medicalized and exclusively patient-centered. To accommodate advance care planning to people with young-onset dementia's and their caregivers' needs, it should be presented and implemented as a holistic, flexible, and relational communication process. Policy and practice recommendations are provided on how to do so.