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.
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.
BACKGROUND/OBJECTIVE: The Centers for Medicare & Medicaid Services (CMS) reimburses clinicians for advance care planning (ACP) discussions with Medicare patients. The objective of the study was to examine the association of CMS-billed ACP visits with end-of-life (EOL) healthcare utilization.
DESIGN: Patient-level analyses of claims for the random 20% Medicare fee-for-service (FFS) sample of decedents in 2017. To account for multiple comparisons, Bonferroni adjusted P value <.008 was considered statistically significant.
SETTING: Nationally representative sample of Medicare FFS beneficiaries.
PARTICIPANTS: A total of 237,989 Medicare FFS beneficiaries who died in 2017 and included those with and without a billed ACP visit during 2016–17.
INTERVENTION: The key exposure variable was receipt of first billed ACP (none, >1 month before death).
MEASUREMENTS: Six measures of EOL healthcare utilization or intensity (inpatient admission, emergency department [ED] visit, intensive care unit [ICU] stay, and expenditures within 30 days of death, in-hospital death, and first hospice within 3 days of death). Analyses was adjusted for age, race, sex, Charlson Comorbidity Index, expenditure by Dartmouth hospital referral region (high, medium, or low), and dual eligibility.
RESULTS: Overall, 6.3% (14,986) of the sample had at least one billed ACP visit. After multivariable adjustment, patients with an ACP visit experienced significantly less intensive EOL care on four of six measures: hospitalization (odds ratio [OR] = .77; 95% confidence interval [CI] = .74–.79), ED visit (OR = .77; 95% CI = .75–.80), or ICU stay (OR = .78; 95% CI = .74–.81) within a month of death; and they were less likely to die in the hospital (OR = .79; 95% CI = .76–.82). There were no differences in the rate of late hospice enrollment (OR = .97; 95% CI = .92–1.01; P = .119) or mean expenditures ($242.50; 95% CI = -$103.63 to $588.61; P = .169).
CONCLUSION: Billed ACP visits were relatively uncommon among Medicare FFS decedents, but their occurrence was associated with less intensive EOL utilization. Further research on the variables affecting hospice use and expenditures in the EOL period is recommended to understand the relative role of ACP.
Palliative care has potential to improve quality of life and goal-concordant care for patients with adult congenital heart disease (ACHD). However, it is rarely employed prior to critical illness because the best methods for implementation are not well-defined. We qualitatively evaluated ACHD patients' understanding of and opinions regarding palliative care and advance care planning (ACP) to better define the needs of this population. We conducted a thematic analysis of 25 semi-structured interviews with patients with ACHD in which we assessed participants' perspectives on the need for, and barriers and facilitators to, the use of palliative care and ACP. In a group of participants with ACHD (mean age 38, 48% male) classified as simple (24%), moderate (32%), or complex (44%), we identified 4 major themes: 1) using knowledge to combat future uncertainties; 2) unfamiliarity with and limited exposure to palliative care and ACP; 3) facilitators and barriers to engaging in palliative care and ACP; and 4) importance of timing and presentation of ACP discussions. In conclusion, participants expressed a desire for knowledge about ACHD progression and treatment. They supported routine incorporation of palliative care and ACP and identified related facilitators and barriers to doing so. Importantly, timing and format of these discussions must be individualized using shared decision-making between clinicians, patients, and their families.
CONTEXT: Advance care planning is essential to enable informed medical decisions to be made and to reduce aggressiveness in EOL care.
OBJECTIVES: This study aimed to explore whether a Question Prompt List (QPL) adapted to French language and culture could promote discussions, particularly on prognosis and EOL issues, among advanced cancer patients attending outpatient palliative care (PC) consultations.
METHODS: In this multicentre randomised study, patients assigned to the intervention arm received a QPL to help them prepare for the next consultation one month later. The main inclusion criteria were advanced cancer patients referred to the PC team with an estimated life expectancy of less than one year. The primary endpoint was the number of questions raised, globally and by topic. The secondary objectives were the impact of the QPL on psychological symptoms, quality-of-life (QoL), satisfaction with care and coping styles at two months.
RESULTS: Patients (n=71) in the QPL arm asked more questions (mean 21.8 versus 18.2, p-value=0.03) than patients in the control arm (n=71), particularly on PC (5.6 versus 3.7, p-value=0.012) and EOL issues (2.2 versus 1, p=0.018), but not on prognosis (4.3 versus 3.6, NS). At two months, there was no change in anxiety, depression or QoL in either arm; patient satisfaction with doctors' technical skills was scored higher (p-value=0.024) and avoidance coping responses were less frequent (self-distraction, p-value=0.015; behavioural disengagement, p-value=0.025) in the QPL arm.
CONCLUSIONS: Questions on PC and EOL issues in outpatient palliative care consultations were more frequent and patient satisfaction was better when a QPL was made available prior to the consultation.
BACKGROUND: Group visits can support health behavior change and self-efficacy. In primary care, an advance care planning (ACP) group visit may leverage group dynamics and peer mentorship to facilitate education and personal goal setting that result in ACP engagement.
OBJECTIVE: To determine whether the ENgaging in Advance Care Planning Talks (ENACT) group visits intervention improves ACP documentation and readiness in older adults.
METHODS: This randomized clinical trial was conducted among geriatric primary care patients from the University of Colorado Hospital Seniors Clinic, Aurora, CO, from August 2017 to November 2019. Participants randomized to ENACT group visits (n = 55) participated in two 2-hour sessions with discussions of ACP topics and use of ACP tools (i.e., Conversation Starter Kit, Medical Durable Power of Attorney form, and PREPARE videos). Participants randomized to the control arm (n = 55) received the Conversation Starter Kit and a Medical Durable Power of Attorney form by mail. The primary outcomes included presence of ACP documents or medical decision-maker documentation in the electronic health record (EHR) at 6 months, and a secondary outcome was ACP readiness (validated four-item ACP Engagement Survey) at 6 months.
RESULTS: Participants were a mean of 77 years old, 60% female, and 79% white. At 6 months, 71% of ENACT participants had an advance directive in the EHR (26% higher) compared with 45% of control arm participants (P < .001). Similarly, 93% of ENACT participants had decision-maker documentation in the EHR (29% higher) compared with 73% in the control arm (P < .001). ENACT participants trended toward higher readiness to engage in ACP compared with control (4.56 vs 4.13; P = .16) at 6 months.
CONCLUSION: An ACP group visit increased ACP documentation and readiness to engage in ACP behavior change. Primary care teams can explore implementation and adaptation of ACP group visits into routine care, as well as longer-term impact on patient health outcomes.
BACKGROUND: Cystic fibrosis (CF) is a life-limiting disease that results in premature death mainly due to respiratory failure. Literature suggests that for many people with CF end-of-life wishes are discussed too late or not at all, with most dying in hospital. The aim of this project was to improve end-of-life care for adults with CF.
DESIGN: Three improvement cycles were carried out over a 2-year period in one of the largest adult CF centres in Europe. The first cycle involved implementing regular multidisciplinary team (MDT) debriefs after a patient death with increased education. The second cycle involved codesigning a CF-specific advance care plan (ACP) with patients, families, bereaved relatives and experts across the UK, then implementing this into our service. The final cycle was designing a CF-specific end of life, online course for clinicians. Success was measured by: use of ACP and whether patients had died in their preferred location, patient feedback via a survey and satisfaction with the online course using a postcourse report.
RESULTS: The number of patients given the opportunity to discuss their end of life wishes increased from 10% to 85%. The number of patients who died in their preferred location increased from 7% to 85% over the 2-year project time. Patient feedback has been overwhelmingly positive. The key barrier has been changing MDT culture, overcoming this required the engagement of the whole team. The online course has been successful with 258 participants to date from 26 countries.
CONCLUSION: Education, staff support and a CF-specific ACP document empowered healthcare professionals to initiate difficult conversations to improve end-of-life care.
OBJECTIVES: A qualitative interpretive-systemic focus group study was conducted to examine the developmental and implementational underpinnings of Asia's first national Advance Care Planning (ACP) programme constituted in Singapore.
METHODS: 63 physicians, nurses, medical social workers, and allied health workers who actively rendered ACP were purposively recruited across seven major public hospitals and specialist centers.
RESULTS: Framework analysis revealed 19 themes, organized into 5 categories including Life and Death Culture, ACP Coordination, ACP Administration, ACP Outcomes, and Sustainability Shift. These categories and themes formed an Interpretive-Systemic Framework of Sustainable ACP, which reflects the socio-cultural, socio-political, and socio-spiritual contexts that influence ACP provision, highlighting the need to adopt a public health strategy for enhancing societal readiness for end-of-life conversations.
SIGNIFICANCE OF RESULTS: The Interpretive-Systemic Framework of Sustainable ACP underscores the importance of health policy, organizational structure, social discourse, and shared meaning in ACP planning and delivery so as to support and empower care decision-making among terminally ill Asian patients and their families facing mortality.
End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members' experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians' compassionate caring for both patients and families through the "little things" or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient's death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient's death. Most importantly, the notion that ACP as a social process may be a "gift" to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.
Ageing has been recognized as one of the most critically important health-care issues worldwide. It is relevant to Asia, where the increasing number of older populations has drawn attention to the paramount need for health-care investment, particularly in end-of-life care. The advocacy of advance care planning is a mean to honor patient autonomy. Since most East Asian countries are influenced by Confucianism and the concept of 'filial piety,' patient autonomy is consequently subordinate to family values and physician authority. The dominance from family members and physicians during a patient's end-of-life decision-making is recognized as a cultural feature in Asia. Physicians often disclose the patient's poor prognosis and corresponding treatment options to the male, family member rather to the patient him/herself. In order to address this ethical and practical dilemma, the concept of 'relational autonomy' and the collectivism paradigm might be ideally used to assist Asian people, especially older adults, to share their preferences on future care and decision-making on certain clinical situations with their families and important others. In this review article, we invited experts in end-of-life care from Hong Kong, Indonesia, Japan, South Korea, Singapore and Taiwan to briefly report the current status of advance care planning in each country from policy, legal and clinical perspectives. According to the Asian experiences, we have seen different models of advance care planning implementation. The Asian Delphi Taskforce for advance care planning is currently undertaken by six Asian countries and a more detailed, culturally sensitive whitepaper will be published in the near future.
PURPOSE: Monitoring and improving the quality of palliative and end-of-life cancer care remain pressing needs in the United States. Among existing measures that assess the quality of palliative and end-of-life care, many operationalize similar concepts. We identified existing palliative care process measures and synthesized these measures to aid stakeholder prioritization that will facilitate health system implementation in patients with advanced cancer.
METHODS: We reviewed MEDLINE/PubMed-indexed articles for process quality measures related to palliative and end-of-life care for patients with advanced cancer, supplemented by expert input. Measures were inductively grouped into "measure concepts" and higher-level groups.
RESULTS: Literature review identified 226 unique measures from 23 measure sources, which we grouped into 64 measure concepts within 12 groups. Groups were advance care planning (11 measure concepts), pain (7), dyspnea (9), palliative care-specific issues (6), other specific symptoms (17), comprehensive assessment (2), symptom assessment (1), hospice/palliative care referral (1), spiritual care (2), mental health (5), information provision (2), and culturally appropriate care (1).
CONCLUSION: Measure concepts covered the spectrum of care from acute symptom management to advance care planning and psychosocial needs, with variability in the number of measure concepts per group. This taxonomy of process quality measure concepts can be used by health systems seeking stakeholder input to prioritize targets for improving palliative and end-of-life care quality in patients with advanced cancer.
Advance care planning is considered an important part of high-quality end-of-life care. Its cost-effectiveness is currently unknown. In this study, we explore the cost-effectiveness of a strategy, in which advance care planning is offered systematically to older people at the end-of-life compared with standard care. We conducted decision-analytic modelling. The perspective was health and social care and the time horizon was 1 year. Outcomes included were quality-adjusted life years as they referred to the surviving carers. Data sources included published studies, national statistics and expert views. Average total cost in the advance care planning versus standard care group was £3,739 versus £3,069. The quality-adjusted life year gain to carers was 0.03 for the intervention in comparison with the standard care group. Based on carer's health-related quality-of-life, the average cost per quality-adjusted life year was £18,965. The probability that the intervention was cost-effective was 55% (70%) at a cost per quality-adjusted life year threshold of £20,000 (£30,000). Conducting cost-effectiveness analysis for advance care planning is challenging due to uncertainties in practice and research, such as a lack of agreement on how advance care planning should be provided and by whom (which influences its costs), and about relevant beneficiary groups (which influences its outcomes). However, even when assuming relatively high costs for the delivery of advance care planning and only one beneficiary group, namely, family carers, our analysis showed that advance care planning was probably cost-effective.
BACKGROUND: Advanced care planning (ACP) provides an opportunity for individuals to explore and document their values concerning medical care decisions prior to an acute event. This manuscript explores the value of ACP and compares and contrasts 2 ACP models currently in practice.
METHODS: This hypothetical case describes an elderly, frail patient with end-stage chronic obstructive pulmonary disease who is also a high user of health care resources. A new palliative care-led outpatient ACP clinic model is described using this example.
RESULTS: Using the ACP clinic model in this case reveals how different a patient's end of life experience may be when proper, proactive planning measures are in place. With proper education and discussion around this patient and family's wishes pertaining to the end of his life, this man was able to change his plan of care from aggressive resuscitation treatment in hospital to a peaceful palliative experience at home.
CONCLUSIONS: In this case description, the valuable role of ACP in preserving quality of life for patients, increasing satisfaction with care, and decreasing distress among family members during a medical event is demonstrated.
The coronavirus disease 2019 (COVID-19) pandemic has highlighted the central importance of palliative care to our increasingly strained healthcare system. Palliative care is specialized care for people struggling with serious illnesses. Its aim is to improve the patient's quality of life by providing expert-level symptom management and skilled communication and by supporting caregivers to ensure patients and their families receive goal-concordant care. Faced with a reality that patients with frailty and serious illness are the most vulnerable to critical illness and death, early inquiries into patient and family wishes were essential to avoid preventable suffering. To prevent spread of the virus, patients' loved ones were not allowed inside of hospitals across New York, further emphasizing the importance of proficient communication between patients, their families, and the healthcare teams.
COVID-19 has highlighted the reality of an impending serious illness for many, particularly for older persons. Those faced with severe COVID-19 infection or other serious illness will be faced with decisions regarding admission to intensive care and use of mechanical ventilation. Past research has documented substantial medical errors regarding the use or non-use of life-sustaining treatments in older persons. While some experts advocate that advance care planning may be a solution to the problem, I argue that the prevailing understanding and current practice of advance care planning perpetuates the problem and results in patients not receiving optimal patient-centered care. Much of the problem centers on the framing of advance care planning around end of life care, the lack of use of decision support tools, and inadequate language that does not support shared decision-making. I posit that a new approach and new terminology is needed. Advance Serious Illness Preparations and Planning (ASIPP) consists of discrete steps using evidence-based tools to prepare people for future clinical decision-making in the context of shared decision-making and informed consent. Existing tools to support this approach have been developed and validated. Further dissemination of these tools is warranted.
Advance care planning (ACP) is associated with benefits for seriously ill patients, caregivers, and clinicians. As ACP usage expands, there should be greater emphasis on supporting an ongoing communication process among patients, families, and clinicians, as well as removing barriers for advance directive document completion and retrieval.