Advance Care Planning for Individuals With Chronic Obstructive Pulmonary Disease: A Scoping Review of the Literature

ContextIndividuals with chronic obstructive pulmonary disease (COPD) typically experience a gradual worsening of the illness in the years before death. Owing to difficulties in predicting the disease trajectory or the timing of acute exacerbations, advance care planning (ACP) may be of particular importance for individuals with COPD.ObjectivesThe objective of this study was to review and summarize the available literature on current practices around ACP in COPD.MethodsA scoping review of the literature was conducted following the Arksey and O'Malley framework. Original research studies of any design were included.ResultsTwenty-eight studies were included. Across studies, there was agreement that ACP should be incorporated into routine COPD management. There was evidence that this does not occur in everyday practice, with conversations tending to focus on day-to-day symptom management. Barriers included prognosis uncertainty, insufficient time and training, and a lack of protocols for who is responsible for initiating ACP. Facilitators included the use of transition points for identifying the appropriate time to initiate ACP, and an increased focus on ACP in professional education. The occurrence of repeated episodes of acute care was identified as a key transition point for identifying the palliative stage of COPD and an appropriate time to initiate ACP.ConclusionThe findings of this review confirm agreement among health care professionals and patients with COPD and their carers that ACP should be incorporated into routine COPD management. The use of transition points may help health care professionals overcome the barrier of prognosis uncertainty and identify patients who might benefit from ACP.     

Personal and Interpersonal Factors and Their Associations With Advance Care Planning Documentation: A Cross-sectional Survey of Older Adults in Australia

ContextPersonal and interpersonal factors may be influential in a person's decision to engage in advance care planning (ACP), including completion of ACP documentation.ObjectivesTo conduct a cross-sectional survey of older adults accessing Australian general practices, hospitals, and residential aged care facilities, with the aim of describing associations between personal and interpersonal factors and self-reported ACP documentation completion.MethodsEligible participants included in a national health record audit were approached to complete a survey measuring demographic and health characteristics, preferences for care, worries about the future, and experiences talking with others about ACP and completing ACP documentation.ResultsOf 1082 people eligible to participate in the survey, 507 completed the survey (response rate = 47%; median age 82 years) and 54% (n = 272) reported having completed ACP documentation. Having ever discussed ACP with other people (anyone) or a doctor were both significant predictors of ACP documentation completion, whereas having previously spoken specifically to a partner about ACP, currently living with children compared to living alone, and being aged 55–69 versus 90–99 years were associated with reduced odds of ACP documentation completion.ConclusionApproximately half the participants reported having completed ACP documentation. The strongest predictor of ACP documentation completion was having spoken to anyone about ACP followed by having spoken to a doctor about ACP. These findings suggest that discussions about ACP are an important part of the process of completing ACP documentation.     

Patient-centered and efficacious advance care planning in cancer: Protocol and key design considerations for the PEACe-compare trial

BackgroundFailure to deliver care near the end of life that reflects the needs, values and preferences of patients with advanced cancer remains a major shortcoming of our cancer care delivery system.MethodsA mixed-methods comparative effectiveness trial of in-person advance care planning (ACP) discussions versus web-based ACP is currently underway at oncology practices in Western Pennsylvania.Patients with advanced cancer and their caregivers are invited to enroll. Participants are randomized to either (1) in-person ACP discussions via face-to-face visits with a nurse facilitator following the Respecting Choices® Conversation Guide or (2) web-based ACP using the PREPARE for your care™ web-based ACP tool. The trial compares the effect of these two interventions on patient and family caregiver outcomes (engagement in ACP, primary outcome; ACP discussions; advance directive (AD) completion; quality of end-of-life (EOL) care; EOL goal attainment; caregiver psychological symptoms; healthcare utilization at EOL) and assesses implementation costs. Factors influencing ACP effectiveness are assessed via in-depth interviews with patients, caregivers and clinicians.DiscussionThis trial will provide new and much-needed empirical evidence about two patient-facing ACP approaches that successfully overcome limitations of traditional written advance directives but entail very different investments of time and resources. It is innovative in using mixed methods to evaluate not only the comparative effectiveness of these approaches, but also the contexts and mechanisms influencing effectiveness. Data from this study will inform clinicians, payers and health systems seeking to adopt and scale the most effective and efficient ACP strategy in real-world oncology settings.     

An Interventional Study for the Early Identification of Patients With Palliative Care Needs and the Promotion of Advance Care Planning and Advance Directives

ContextPrograms identifying patients needing palliative care and promoting advance care planning (ACP) are rare in Asia.ObjectivesThis interventional cohort study aimed to identify hospitalized patients with palliative care needs using a validated palliative care screening tool (PCST), examine the ability of the PCST to predict mortality, and explore effects of a pragmatic ACP program targeted by PCST on the utilization of life-sustaining treatment during the last three months of life.MethodsIn this prospective study, we used PCST to evaluate patients' palliative care needs between 2015 and 2016 and followed patients for three months. ACP with advance directives (ADs) was systematically offered to all patients with PCST score ≥4.ResultsOf 47,153 hospitalized patients, 10.4% had PCST score ≥4. During follow-up, 2121 individuals died within three months of palliative care screening: 1225 (25.0%) with PCST score ≥4 and 896 (2.1%) with PCST score <4. After controlling for covariates, PCST score ≥4 was significantly associated with a higher mortality within three months of screening (adjusted odds ratio [AOR] 6.86; 95% CI 6.16–7.63). Moreover, ACP consultation (AOR 0.78; 95% CI 0.66–0.92) and AD completion (AOR 0.49; 95% CI 0.36–0.65) were associated with a lower likelihood of receiving life-sustaining treatments during the last three months of life.ConclusionWe demonstrated the feasibility of implementing a comprehensive palliative care program to identify patients with palliative care needs and promote ACP and AD in Eastern Asia. ACP consultation and AD completion were associated with reduced utilization of life-sustaining treatments during the last three months of life.     

Factors Which Influence Hospital Doctors' Advance Care Plan Adherence

ContextAdvances in medicine have seen changes in mortality in Western countries. Simultaneously, countries such as Australia, Canada, U.S., New Zealand, U.K., and Germany have encouraged consumer-directed care and advance care plan (ACP) completion, giving patients a voice despite incapacity. Adhering to ACPs relies on the decision-making of treating doctors, making hospital doctors key partners, and their perspectives on ACP adherence critical.ObjectivesThe aim of this review was to explore and map existing research on factors associated with hospital doctors adhering to adult patients' ACPs.MethodsA scoping review of English language publications within CINAHL, Emcare, Medline, PsycInfo, and Scopus was conducted, following PRISMA Extension for Scoping Reviews (PRISMA-ScR) guidelines. ACPs were defined as adult patient-generated, written health care directions or values statements. Studies of any design, which reported original research associated with hospital doctors adhering to ACPs, were included.ResultsTwenty-seven publications were included in the final analysis. Results suggested ACPs were thought potentially useful; however, adherence has been associated with doctors' attributes (e.g., specialty, seniority), attitudes toward ACP (e.g., applicability), and legal knowledge.ConclusionCurrent literature suggests doctors hold largely positive attitudes toward ACPs that provide useful patient information that enables doctors to make appropriate treatment decisions. Doctors often perceive limitations to ACP applicability due to legal requirements or ambiguity of patient outcome goals.     

“Goals of Care Conversations Don't Fit in a Box”: Hospice Staff Experiences and Perceptions of Advance Care Planning Quality Measurement

ContextWith rising concerns about quality of care in hospice, federal agencies recently began mandating quality measurement in hospice, including measures of advance care planning (ACP).ObjectivesTo characterize hospice providers' experiences with ACP quality measurement and their reflections on ways to improve it.MethodsSemi-structured in-depth interviews of fifty-one hospice providers from various clinical backgrounds and organizational roles in four geographically diverse non-profit, community-based hospices in the U.S. Participants were queried about their experiences with and barriers to ACP quality measurement processes in their organization, opinions about the impacts of federally mandated quality measures, and ideas for improvement. Data were analyzed using thematic analysis with an interdisciplinary team, facilitated by ATLAS.ti and Excel.ResultsFour key findings of the ACP quality measurement experience for hospice staff included variation, barriers, attitudes, and recommendations for improvement. 1) Variation: Within and across organizations, participants applied a variety of processes to measure ACP quality, and exposure to and experiences with quality measurement varied based on organizational role. 2) Barriers: ACP quality measurement was impeded by limited resources, technological problems, and measurement challenges. 3) Attitudes: Participants' opinions of recently implemented federally mandated requirements for ACP quality measurement highlighted numerous downsides, unintended consequences, and few upsides. 4) Recommendations: improvements included personalizing ACP quality measures, elevating the importance of quality measurement, and streamlining processes.ConclusionHospice staff take ACP quality measurement seriously, but insufficient organizational resources and regulatory bureaucracy create challenges. Efforts to enhance ACP quality measure nuance and assess outcomes are needed to improve care.     

A scoping review of nurse-led advance care planning

BackgroundAdvance care planning (ACP) supports persons at any age or health status to determine their values, goals, and preferences regarding future medical care. The American Nurses Association endorses nurses to facilitate ACP to promote patient- and family-centered care.PurposeThis project reviewed and synthesized literature on nurse-led ACP training models.MethodsA scoping review used the Arksey and O'Malley Framework to identify: (a) ACP training model type, (b) nurse-led ACP recipients, (c) ACP in special populations, (d) ACP outcomes.FindingsOf 33 articles reviewed, 19 included 11 established models; however, the primary finding was lack of a clearly identified evidence-based nurse-led ACP training model.DiscussionNurses are integral team members, well positioned to be a bridge of communication between patients and care providers. This is a call to action for nurse leaders, researchers, educators to collaborate to identify and implement an evidence-based, effective nurse-led ACP training model.     

Improving Advance Care Planning in Outpatients With Decompensated Cirrhosis: A Pilot Study

BackgroundDespite significant morbidity and mortality among patients with decompensated cirrhosis, reported rates of advance directive (AD) completion and goals of care discussions (GCDs) between patients and providers are very low. We aimed to improve these rates by implementing a hepatologist-led advance care planning (ACP) intervention.MeasuresRates of AD and GCD completion, as well as self-reported barriers to ACP.InterventionProvider-led ACP in patients with decompensated cirrhosis without a prior documented AD.OutcomesSixty-two patients were seen over 115 clinic visits. After the intervention, AD completion rates increased from 8% to 31% and GCD completion rates rose from 0% to 51%. Women (P = 0.048) and nonmarried adults (P = 0.01) had greater changes in AD completion compared to men and married adults, respectively. Needing more time during visits was seen as the major barrier to ACP among providers.Conclusions/Lessons LearnedAddressing provider and system-specific barriers dramatically improved documentation rates of ACP.     

Volunteers motivations and involvement in dementia care in hospitals,aged care and resident homes: An integrative review

ObjectiveTo review the current literature related to the role of volunteers in dementia care in hospitals, aged care and resident homes.DesignIntegrative review method was used to identify and analyse current literature.MethodData extracted included; author, methodology, sample, aims, data collection and analysis, findings, limitations, and comments. The Mixed Methods Appraisal Tool (MMAT) version 2011, was used to appraise the quality of the final articles.Data SourcesDatabases searched included CINAHL, Medline, ProQuest Central and PubMed. Keywords and MeSH terms: dementia, cognitive impairment, Alzheimer's disease, volunteers, volunteering, voluntary workers, hospital, acute care, aged care, residents.Results14 articles reviewed, and three major themes revealed: volunteer motivation, volunteer involvement, and understanding roles. Recommendations to assist with future volunteer programs in dementia care are presented.ConclusionVolunteer programs are beneficial to patients, family, volunteers, health care, and staff. Research of volunteers’ needs, motivations and role required, aiming to improve support and training.     

Identification of cancer-related symptom clusters: an empirical comparison of exploratory factor analysis methods

ContextThere is limited research on how community-based long-term care (CBLTC) providers' personal characteristics and attitudes affect their decisions to initiate advance care planning (ACP) conversations with consumers.ObjectivesTo examine judgments by CBLTC providers as to whether a consumer was in need of ACP and to compare the relative influence of situational features of the consumer with the influence of personal characteristics of the CBLTC provider.MethodsFactorial surveys with vignettes with randomly assigned situational features of a hypothetical consumer were obtained from 182 CBLTC providers at three Area Agencies on Aging located in the Midwestern U.S. Measures included the consumer's situational features, such as demographics, diagnosis, pain level, level of functioning, and caregiver involvement. Personal characteristics of the CBLTC provider included demographics, discipline, past experience with ACP, and attitudes toward ACP.ResultsHierarchical linear models indicated that most variability in ACP decisions was the result of differences among CBLTC providers (64%) rather than consumers' situational features. Positive decisions to discuss ACP were associated with consumers who needed assistance with legal issues and had a cancer diagnosis; these variables explained 8% of the vignette level variance. Significant personal characteristics of the CBLTC provider included a nursing background, less direct contact with consumers, past experience with ACP, and positive attitudes toward ACP; these variables explained 41% of the person-level variance.ConclusionThis study shows the lack of normative consensus about ACP and highlights the need for consistent educational programs regarding the role of the CBLTC provider in the ACP process.     

My Life,My Way: A Quality Improvement Program to Increase Advance Care Planning in a Racially and Ethnically Diverse Patient Population

BackgroundA multilevel quality improvement program was implemented at an urban community hospital, serving a racially and ethnically pluralistic patient population, to increase participation in advance care planning (ACP).MeasuresNumber of eligible patients who completed an ACP form.InterventionProjects were implemented over the course of two years that targeted patients, health care providers, the organization, and the community.OutcomesThe intervention resulted in increased completion of four unique ACP forms. Completion of the Living Will increased by 60%, Health Care Proxy increased by 9%, Medical Orders for Life-Sustaining Treatment increased by 5%, and Do-Not-Resuscitate/Do-Not-Intubate orders increased by 3%.ConclusionMultilevel interventions can increase ACP participation in a racially and ethnically pluralistic patient population.     

Toward a Conceptual Model of Affective Predictions in Palliative Care

ContextBeing diagnosed with cancer often forces patients and families to make difficult medical decisions. How patients think they and others will feel in the future, termed affective predictions, may influence these decisions. These affective predictions are often biased, which may contribute to suboptimal care outcomes by influencing decisions related to palliative care and advance care planning.ObjectivesThis study aimed to translate perspectives from the decision sciences to inform future research about when and how affective predictions may influence decisions about palliative care and advance care planning.MethodsA systematic search of two databases to evaluate the extent to which affective predictions have been examined in the palliative care and advance care planning context yielded 35 relevant articles. Over half utilized qualitative methodologies (n = 21). Most studies were conducted in the U.S. (n = 12), Canada (n = 7), or European countries (n = 10). Study contexts included end of life (n = 10), early treatment decisions (n = 10), pain and symptom management (n = 7), and patient-provider communication (n = 6). The affective processes of patients (n = 20), caregivers (n = 16), and/or providers (n = 12) were examined.ResultsThree features of the palliative care and advance care planning context may contribute to biased affective predictions: 1) early treatment decisions are made under heightened emotional states and with insufficient information; 2) palliative care decisions influence life domains beyond physical health; and 3) palliative care decisions involve multiple people.ConclusionBiases in affective predictions may serve as a barrier to optimal palliative care delivery. Predictions are complicated by intense emotions, inadequate prognostic information, involvement of many individuals, and cancer's effect on non–health life domains. Applying decision science frameworks may generate insights about affective predictions that can be harnessed to solve challenges associated with optimal delivery of palliative care.     

Concordance Between Proxy Level of Care Preference and Advance Directives Among Nursing Home Residents With Advanced Dementia: A Cluster Randomized Clinical Trial

Context

Care consistent with goals is the desired outcome of advance care planning (ACP).

Perspectives of Family Members on Planning End-of-Life Care for Terminally Ill and Frail Older People

ContextAdvance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process.ObjectivesTo gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process.MethodsThis was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory.ResultsFamily members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns.ConclusionThis study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns.     

Development and protocol for a nurse-led telephonic palliative care program

BackgroundThe COVID-19 pandemic has resulted in a profound transformation of health care delivery toward telemedicine models.PurposeWe present the structure of a nurse-led telephonic palliative program and operational metrics to influence further development of tele-palliative programs.MethodsThe nurses engage with seriously ill patients for 6 months with the goal of discussing advance care planning (ACP) and addressing self-identified issues related to their illness.FindingsOf the first 100 program graduates, 78% were actively engaged and 51% named a health care agent and/or engaged in ACP. Of the 18 patients who died during the study, 13 (72%) were enrolled in hospice services.DiscussionOur preliminary results indicate that seriously ill patients are willing to engage with nurses and to participate with discussions on ACP.ConclusionGiven the gaps in health care exposed by the COVID-19 pandemic, this innovative program serves as an important model for bringing palliative care directly to patients.     

Experience as an Informal Caregiver and Discussions Regarding Advance Care Planning in Japan

ContextAdvance care planning (ACP) is vital for end-of-life care management. Experiences as informal family caregivers might act as a catalyst to promote ACP.ObjectivesWe investigated the association between ACP discussions and caregiving experiences.MethodsA nationwide survey in Japan was conducted in December 2016 using a quota sampling method to select a sample representative of the general Japanese population. The responses of 3167 individuals aged 20–84 years (mean age: 50.9 ± 16.8) were analyzed. The outcome was measured by asking if respondents had ever engaged in ACP discussions. The exposure was measured by asking whether and for how long respondents had experience as informal caregivers for family members. We analyzed informal caregiving experience related to the occurrence of ACP discussions using multivariable logistic regression models that adjusted for possible covariates.ResultsRespondents with informal caregiving experience had significantly higher odds of having ACP discussions than those without caregiving experience (adjusted odds ratio: 1.93, 95% CI = 1.63, 2.29). Stronger effects were identified in younger adults (aged 20–65 years) and those with a higher education level (education duration > 12 years) than in older adults (aged ≥65 years) and those with a lower education level, respectively.ConclusionExperiences as informal caregivers for family members may facilitate ACP discussions among Japanese adults, especially younger adults with higher educational attainment. Our findings may help health-care providers screen those at risk for inadequate ACP discussions, and informal caregiving experience should be considered when health-care providers initiate discussions of end-of-life care.     

Advance Care Planning in Community-Dwelling Patients With Dementia

Context

Little is known about advance care planning (ACP) among community-dwelling patients with dementia.