Background: Widespread community engagement in advance care planning (ACP) is needed to overcome barriers to ACP implementation.
Objective: Develop, implement, and evaluate a model for community-based ACP in rural populations with low English language fluency and health care access using lay patient navigators.
Design: A statewide initiative to improve ACP setting/subjects—trained in a group session approach, bilingual patient navigators facilitated 1-hour English and Spanish ACP sessions discussing concerns about choosing a surrogate decision maker and completing an advance directive (AD). Participants received bilingual informational materials, including Frequently Asked Questions, an AD in English or Spanish, and Goal Setting worksheet.
Measurement: Participants completed a program evaluation and 4-item ACP Engagement Survey (ACP-4) postsession.
Results: For 18 months, 74 ACP sessions engaged 1034 participants in urban, rural, and frontier areas of the state; 39% were ethnically diverse, 69% female. A nurse or physician co-facilitated 49% of sessions. Forty-seven percent of participants completed an ACP-4 with 29% planning to name a decision maker in the next 6 months and 21% in the next 30 days; 31% were ready to complete an AD in the next 6 months and 22% in the next 30 days. Evaluations showed 98% were satisfied with sessions. Thematic analysis of interviews with facilitators highlighted barriers to delivering an ACP community-based initiative, strategies used to build community buy-in and engagement, and ways success was measured.
Conclusion: Patient navigators effectively engaged underserved and ethnically diverse rural populations in community-based settings. This model can be adapted to improve ACP in other underserved populations.
Advance directives (ADs) allow individuals to legally determine their preferences for end-of-life (EOL) medical treatment and designate a health-care proxy to act on their behalf prior to losing the cognitive ability to make informed decisions for themselves. An interprofessional group of researchers (law, nursing, medicine, and social work) conducted an exploratory study to identify the differences in quality-of-life (QOL) language found within the AD state statutes from 50 US states and the District of Columbia. Data were coded using constant comparative analysis. Identified concepts were grouped into 2 focus areas for EOL discussions: communication/awareness of surroundings and activities of daily living. Language regarding communication/awareness of surroundings was present in the half of the statutes. Activities of daily living were addressed in only 18% of the statutes. Only 3 states (Arkansas, Nevada, and Tennessee) specifically addressed QOL. Patients are best served when professionals, regardless of discipline, can share and transform knowledge for patients in times of crisis and loss in ways that are empathetic and precise. Interprofessional collaborative practice (IPCP) comprises multiple health workers from different professional backgrounds working together with patients, families, and communities to deliver the highest quality of care. One of the major competencies of IPCP encompasses values and ethics. Interprofessional collaborative practice is offered as the means to deliver person-centered value-based care when facilitating these crucial dialogs and making recommendations for change.
Background: With an aging population, and most deaths due to a nonmalignant cause, there is urgency to review the nature of end-of-life care (EoLC) to minimize gaps in service provision. Early introduction of EoLC benefits patient and carers, so identification of those at risk of dying 6 to 12 months before death is highly desirable.
Objective: To identify the most predictive patient characteristics of a risk of death within 6 to 12 months as a precursor to developing a user-friendly primary care screening tool.
Design: Retrospective case–control study.
Setting/Subjects: Australian general practice. Cases were patients aged =70 years who died in the previous 5 years. Controls were matched for age and gender. Exclusion criteria were: no available practice records for the 18 months before death (cases) and data collection (controls); no corroborated evidence of death.
Measurements: Supportive and Palliative Care Indicators Tool (SPICT) indicators of deterioration in medical records.
Results: There were 215 deaths and 267 controls. The most predictive patient characteristics of a risk of death within 6 to 12 months are: deteriorating performance status, weight loss, persistent symptoms, request for palliative care or treatment withdrawal, impaired activities of daily living, falls ± fractured hip, neurological deterioration, advanced lung disease, and estimated glomerular filtration rate <30 mL/min/1.73 m2 with deteriorating health. Our predictive model has a sensitivity and specificity of 67% and 87%, respectively, with a predictive accuracy of 78%.
Conclusions: This model predicts risk of death within 6 to 12 months with acceptable reliability in a general practice setting and has the potential to be incorporated into clinical practice and electronic records.
This article discusses the practicalities of syringe drivers (subcutaneous continuous infusion pumps) for symptom control in patients requiring palliative or end-of-life care, which may form part of an advance care plan. It includes a discussion of palliative and end-of-life care, advance care planning, and when a syringe driver might be beneficial for the patient. It also provides step-by-step clinical guidance on setting up a syringe driver.
CONTEXT: COVID-19 led to increased attention nationally on advance care planning.
OBJECTIVES: To describe the impact COVID-19 had on advance care planning based on changes in the calls to the WV Center for End-of-Life Care (Center) and in the volume and types of documents requested from and submitted to the Center and its e-Directive Registry (Registry).
METHODS: A retrospective, observational analysis between January 1, 2020 and June 30, 2020 of 1) calls to the Center, 2) advance directives downloaded from the Center's website as well as mailed to the public and medical orders mailed to health care professionals upon request to the Center, and 3) advance directives and medical orders submitted to the Registry.
RESULTS: The nature of calls changed to COVID-19-related topics including confirmation of forms on the Registry, urgent desire to initiate advance care planning, temporary rescindment of treatment-limiting forms, and questions on how to honor patients' wishes in advance directives and medical orders in light of their COVID-19 status. Also in the first six months of 2020, the Center distributed more advance directives than it had during the same months in the last five years and more medical orders than it had in the preceding four years when there were not revisions to the medical order forms required by changes to the state law.
CONCLUSIONS: COVID-19 resulted in a new sense of urgency regarding advance care planning by West Virginians with increased attention to document their wishes and ensure that they were in the Registry.
Introduction: Increased clinician training on advance care planning (ACP) is needed. Common barriers to ACP include perceived lack of confidence, skills, and knowledge necessary to engage in these discussions. Furthermore, many clinicians feel inadequately trained in prognostication. Evidence exists that multimodality curricula are effective in teaching ACP and can be simultaneously targeted to trainees and practicing clinicians with success.
Methods: We developed a 3-hour workshop incorporating lecture, patient-oriented decision aids, prognostication tools, small-group discussion, and case-based role-play to communicate a values-based approach to ACP. Cases included discussion of care goals for a patient with severe chronic obstructive pulmonary disease and one with mild cognitive impairment. The workshop was delivered to fourth-year medical students, then adapted in two primary care clinics. In the clinics, we added an interprofessional case applying ACP to management of dental pain in advanced dementia. We evaluated the workshops using pre-post surveys.
Results: Thirty-four medical students and 14 primary care providers participated. Self-reported knowledge and comfort regarding ACP significantly improved; attitudes toward ACP were strongly positive both before and after. The workshop was well received. On a 7-point Likert scale (1 = unacceptable, 7 = outstanding), the median overall rating was 6 (excellent).
Discussion: We developed an ACP workshop applicable to students and primary clinicians and saw improvements in self-reported knowledge and comfort regarding ACP. Long-term effects were not studied. Participants found the role-play especially valuable. Modifications for primary care clinics focused on duration rather than content. Future directions include expanding the workshop's content.
The Japan Geriatrics Society has so far announced "The Japan Geriatrics Society Position Statement 2012" and "Guidelines for the Decision-Making Processes in Medical and Long-Term Care for the Elderly - Focusing on the Use of Artificial Hydration and Nutrition" related to end-of-life care for older adults. In 2018, the Ministry of Health, Labor and Welfare revised the "Guidelines for the Decision-Making Processes in Medical and Long-Term Care in the End of Life," recommending the practice of advance care planning (ACP). This was the first time when the Japanese government publicized its stance on ACP. Immediately after the government's announcement, the Japan Medical Association announced its committee report, "The Super-aged Society and the End-of-life Care," which also recommended the practice of ACP. The guidelines were published when the society was experiencing substantial changes related to geriatric care in Japan, and required timely and ethically appropriate decision-making processes. However, because ACP is a concept imported from English-speaking countries, some Japanese people could find it difficult to understand the role and methodology of ACP because of differences in culture and the medical/long-term care system. Therefore, the Japan Geriatrics Society has decided to publish the "Recommendations for the Promotion of Advance Care Planning" for medical and long-term care professionals nationwide with the aim of using the recommendations on a daily basis. The society recognizes ACP as indispensable to improve end-of-life care for individuals, particularly for older adults. We anticipate that the recommendations will provide practical guidance for those strenuously working toward this goal.
BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients' self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties.
METHODS: This study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018.
RESULTS: Of the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%).
CONCLUSIONS: The pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis.
Limited information is available describing advance care planning (ACP) within correctional facilities, despite its increasing relevance due to the ageing population in prisons and the high rates of complex medical comorbidities. In Western countries, self-determination with respect to making future medical decisions is a human right that prisoners do not lose when they are remanded into custody. ACP enables individuals to plan for their health and personal care so their values, beliefs and preferences are made known to inform future decision-making, for a time when they can no longer communicate their decisions. This paper examines the limited academic literature relating to ACP within prisons to identify barriers and facilitators that influence the uptake of ACP and advance care directive (ACD) documentation. Common themes related to ACP in a correctional setting were extracted and synthesised to produce a high-level analysis of barriers and facilitators influencing ACP uptake for prisoners within a correctional setting.
Introduction: Discussing the evolution of life-threatening diseases and end-of-life issues remains difficult for patients, relatives and professionals. Helping people discuss and formalise their preferences in end-of-life care, as planned in the Go Wish intervention, could reduce health-related anxiety in the advance care planning (ACP) and advance directive (AD) process. The aims of this study are (1) to test the effectiveness of the Go Wish intervention among outpatients in early-stage palliative care and (2) to understand the role of defence mechanisms in end-of-life discussions among nurses, patients and relatives.
Methods and analysis: A mixed-methods study will be performed. A cluster randomised controlled trials with three parallel arms will be conducted with 45 patients with chronic progressive diseases impacting life expectancy in each group: (1) Group A, Go Wish intervention for patients and their relatives; (2) Group A, Go Wish intervention for patients alone and (3) Group B, for patients (with a waiting list), who will receive the standardised information on ADs (usual care). Randomisation will be at the nurse level as each patient is referred to one of the 20 participating nurses (convenience sample of 20 nurses). A qualitative study will be conducted to understand the cognitive and emotional processes and experiences of nurses, patients and relatives confronted with end-of-life discussions. The outcome measurements include the completion of ADs (yes/no), anxiety, quality of communication about end-of-life care, empowerment, quality of life and attitudes towards ADs.
Ethics and dissemination: The study protocol has been approved by the Human Research Ethics Committee of the Canton of Geneva, Switzerland (no. 2019–00922). The findings will be disseminated to practice (nurses, patients and relatives), to national and international scientific conferences, and peer-reviewed journals covering nursing science, psychology and medicine.
OBJECTIVES: To develop a generalizable advance care planning ACP intervention for children and children, adolescents, and young adults with serious illness using a multi-stage stakeholder driven approach.
STUDY DESIGN: We first convened an expert panel of multidisciplinary HCPs, researchers, and parents to delineate key ACP intervention elements. We then adapted an existing adult guide for use in pediatrics and conducted focus groups and interviews with HCPs, parents and seriously ill AYAs to contextualize perspectives on ACP communication and our pediatric serious illness communication program (PediSICP). Using thematic analysis, we identified guide adaptations, preferred content and barriers for PediSICP implementation. Expert panelists then reviewed, amended and finalized the guide.
RESULTS: Stakeholders (34 HCPs, 9 parents, and 7 seriously ill AYAs) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation including need for HCP training, competing demands, uncertainty regarding timing and documentation of ACP discussions.
CONCLUSION: The finalized PediSICP intervention includes a structured HCP and family ACP conversation occasion supported by a three-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine feasibility of the PediSICP and whether it improves care alignment with patient and family goals.
BACKGROUND: African Americans have low engagement in advance care planning (ACP). This has been attributed to healthcare distrust and skepticism about ACP. A better understanding of these attitudes is needed to address health disparities related to end-of-life care.
OBJECTIVE: To explore the ACP-related values and beliefs of diverse African American communities across the USA and then the perceived value of an inexpensive end-of-life conversational game.
DESIGN: Prospective, convergent, mixed methods cohort study involving fifteen underserved, African American communities across the USA.
PARTICIPANTS: Of the 428 who attended events at purposively sampled sites, 90% consented to the research; 37% participated in one of 15 focus groups (n = 141).
INTERVENTION: An end-of-life conversation game, played in groups of 4-6.
MAIN MEASURES: The validated, 7-item ACP values and beliefs questionnaire (scaled 7 = least skeptical, 49 = most skeptical) was administered pre-game. Post-game focus groups explored perceptions about ACP and the intervention.
KEY RESULTS: Participants had positive attitudes (low skepticism) about ACP with a median score of 12.00 (7.00, 20.00). Values and beliefs did not significantly differ by geographical region; however, rural areas were observed to be slightly more skeptical than urban areas (median score 14.00 vs. 11.00, p = 0.002). Themes from focus groups converged with survey data showing participants valued the ACP process and consider further engagement in ACP to be worthwhile. Subthemes emphasized the need for and value of ACP.
CONCLUSIONS: Skepticism about ACP may contribute to low rates of ACP engagement in underserved African American communities. The positive attitudes uncovered in our study either negate previous findings or suggest reduced skepticism.
Mobile applications that facilitate each stage of the advance care planning process (i.e., obtaining knowledge, contemplating options, and acting on decisions) may be one effective way to support patient-centered care and patient autonomy. The purpose of the current review was to identify and evaluate advance care planning mobile applications for patients. Our specific aim was to examine app features, design quality, content, and readability. We searched the Apple iOS and Google Play stores using keywords developed in conjunction with an academic librarian. Two coders with expertise in palliative care applied guidelines from a previous review and used a consensus coding procedure. We also calculated a Flesh Reading Ease score for each app. Nine apps met criteria and could be evaluated. Overall, apps are limited in features and poor in terms of design quality, layout, and functionality. Regarding content, most apps emphasize making decisions or taking action about advance care planning: 6 apps permit users to document a preferred decision maker, and 6 apps offer a mechanism to distribute and share advance care planning documentation. Three apps focus on knowledge about advance care planning, and only 4 support contemplation about advance care planning. Apps range in terms of readability, from very difficult to fairly easy. This review identifies limitations in features, design quality, and content of existing advance care planning mobile apps. We present recommendations based on the results of this review for the development of future advance care planning apps.
Background: Portable Orders for Life-Sustaining Treatment (POLST) are increasingly utilized to assist patients approaching the end of life in documenting goals of care. We evaluated the association of POLST, resource utilization, and costs to 1 year among injured older adults requiring emergency services.
Methods: This was a retrospective cohort of injured older adults =65 years with continuous Medicare fee-for-service coverage transported by emergency medical services (EMS) in 2011 across 4 counties in Oregon. Data sources included EMS, Medicare claims, vital statistics, and state POLST, inpatient and trauma registries. Outcomes included hospital admission, receipt of aggressive medical interventions, costs, and hospice use. We matched patients on patient characteristics and comorbidities to control for bias.
Results: We included 2116 patients of which 484 (22.9%) had a POLST form prior to 911 contact. Of POLST patients, 136 (28.1%) had orders for full treatment, 194 (40.1%) for limited interventions, and 154 (31.8%) for comfort measures. There were no significant associations for care during the index event. However, in the year after the index event, patients with care limitations had higher adjusted hospice use (limited interventions OR 1.7 [95% CI: 1.2–2.6]; comfort OR, 2.0 [95% CI: 1.3–3.0]) and lower adjusted post-discharge costs (no POLST, $32,399 [95% CI: 30,041–34,756]; limited interventions, $18,729 [95% CI: 12,913–24,545]; and comfort $15,593 [95% CI: 12,091–19,095]). There were no significant associations for all other outcomes.
Conclusions: Care limitations specified in POLST forms among injured older adults transported by EMS are associated with increased use of hospice and decreased costs to 1 year.
Background/Objectives: Advance care planning (ACP) has shown benefit in some, but not all, studies. It is important to understand the utility of ACP. We conducted a scoping review to identify promising interventions and outcomes.
Design : Scoping review.
Measurements: We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for ACP randomized controlled trials from January 1, 2010, to March 3, 2020. We used standardized Preferred Reporting Items for Systematic Review and Meta-Analyses methods to chart study characteristics, including a standardized ACP Outcome Framework: Process (e.g., readiness), Action (e.g., communication), Quality of Care (e.g., satisfaction), Health Status (e.g., anxiety), and Healthcare Utilization. Differences between arms of P < .05 were deemed positive.
Results : Of 1,464 articles, 69 met eligibility; 94% were rated high quality. There were variable definitions, age criteria (=18 to =80 years), diseases (e.g., dementia and cancer), and settings (e.g., outpatient and inpatient). Interventions included facilitated discussions (42%), video only (20%), interactive, multimedia (17%), written only (12%), and clinician training (9%). For written only, 75% of primary outcomes were positive, as were 69% for multimedia programs; 67% for facilitated discussions, 59% for video only, and 57% for clinician training. Overall, 72% of Process and 86% of Action outcomes were positive. For Quality of Care, 88% of outcomes were positive for patient-surrogate/clinician congruence, 100% for patients/surrogate/clinician satisfaction with communication, and 75% for surrogate satisfaction with patients' care, but not for goal concordance. For Health Status outcomes, 100% were positive for reducing surrogate/clinician distress, but not for patient quality of life. Healthcare Utilization data were mixed.
Conclusion : ACP is complex, and trial characteristics were heterogeneous. Outcomes for all ACP interventions were predominantly positive, as were Process and Action outcomes. Although some Quality of Care and Health Status outcomes were mixed, increased patient/surrogate satisfaction with communication and care and decreased surrogate/clinician distress were positive. Further research is needed to appropriately tailor interventions and outcomes for local contexts, set appropriate expectations of ACP outcomes, and standardize across studies.
Background: Traditionally, system leaders, service line managers, researchers, and program evaluators hire specifically dedicated implementation staff to ensure that a healthcare quality improvement effort can "go to scale." However, little is known about the impact of hiring dedicated staff and whether funded positions, amid a host of other delivered implementation strategies, are the main difference among sites with and without funding used to execute the program, on implementation effectiveness and cost outcomes.
Methods/design: In this mixed methods program evaluation, we will determine the impact of funding staff positions to implement, sustain, and spread a program, Advance Care Planning (ACP) via Group Visits (ACP-GV), nationally across the entire United States Department of Veterans Affairs (VA) healthcare system. In ACP-GV, veterans, their families, and trained clinical staff with expertise in ACP meet in a group setting to engage in discussions about ACP and the benefits to veterans and their trusted others of having an advance directive (AD) in place. To determine the impact of the ACP-GV National Program, we will use a propensity score-matched control design to compare ACP-GV and non-ACP-GV sites on the proportion of ACP discussions in VHA facilities. To account for variation in funding status, we will document and compare funded and unfunded sites on the effectiveness of implementation strategies (individual and combinations) used by sites in the National Program on ACP discussion and AD completion rates across the VHA. In order to determine the fiscal impact of the National Program and to help inform future dissemination across VHA, we will use a budget impact analysis. Finally, we will purposively select, recruit, and interview key stakeholders, who are clinicians and clinical managers in the VHA who offer ACP discussions to veterans, to identify the characteristics of high-performing (e.g., high rates or sustainers) and innovative sites (e.g., unique local program design or implementation of ACP) to inform sustainability and further spread.
Discussion: As an observational evaluation, this protocol will contribute to our understanding of implementation science and practice by examining the natural variation in implementation and spread of ACP-GV with or without funded staff positions.
Background: Prognostication is important for patients and their family members as they need this information for the preparation and planning of their future. It is important for physicians as they desire to be accurate in their prognostication skills in order to plan and deliver better care to their patients; healthcare managers require it as they need this information for planning and distribution of hospital resources. We intended to study the accuracy of imminent death diagnosis (IDD) in a palliative care setting in all patients who died at the Palliative Care Unit (PCU) at King Fahad Medical City between December 2012 and December 2014.
Methods: We conducted a retrospective chart review of all consecutive patients who died in the PCU between 2012 and 2014. We studied the percentage of patients who were diagnosed with imminent death. We further looked at the accuracy of IDD by calculating the time between the diagnosis of imminent death and death. The primary outcomes were the percentage of patients who had an IDD and the proportion of those who died within 14 days of IDD. The secondary outcomes were the difference between patients who die after IDD and patients who die without imminent death diagnosis (NIDD) at the end of life interventions.
Results: During the period from December 2012 until December 2014, 48 patients died in the PCU. The majority of 28/48 (58%) died with IDD. However, 20/48 (42%) died NIDD. In the IDD group, 25/28 (89.3%) died within 14 days of diagnosis while 3/28 (10.3%) died after 14 days Conclusions: IDD is a critical skill for palliative care physicians to make an advance care plan. Our study showed a high degree of accuracy of prediction of fourteen-day mortality in PCU patients. The median survival was two days. However, a large proportion of patients still died without a documented IDD. Multidisciplinary team input improves the accuracy of IDD. We recommend further studies be done to explore how IDD could improve care planning for dying patients and families.
The majority of states require the signature of a surrogate decision maker on a POLST form for a patient who lacks decisional capacity. While commendable in its intention to ensure informed consent, in some cases this may lead the surrogate to feel that they are signing their loved one's "death warrant," adding to their emotional and spiritual distress. In this paper we argue that such a signature should be recommended rather than required, as it is neither a sufficient nor necessary condition of informed consent. Additional steps-such as requiring the attestation and documentation of the signing health care professional that verbal consent was fully informed and voluntary-can achieve the ultimate goal of respecting patient autonomy without adding to the surrogate's burden.
Survival prospects in adults with congenital heart disease (CHD), although improved in recent decades, still remain below expectations for the general population. Patients and their loved ones benefit from preparation for both unexpected and predictable deaths, sometimes preceded by a prolonged period of declining health. Hence, advance care planning (ACP) is an integral part of comprehensive care for adults with CHD. This position paper summarizes evidence regarding benefits of and patients' preferences for ACP and provides practical advice regarding the implementation of ACP processes within clinical adult CHD practice. We suggest that ACP be delivered as a structured process across different stages, with content dependent upon the anticipated disease progression. We acknowledge potential barriers to initiate ACP discussions and emphasize the importance of a sensitive and situation-specific communication style. Conclusions presented in this article reflect agreed expert opinions and include both patient and provider perspectives.