Background: A 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).
Measures: Number of eligible patients who completed an ACP form.
Intervention: Projects were implemented over the course of two years that targeted patients, health care providers, the organization, and the community.
Outcomes: The 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%.
Conclusion: Multilevel interventions can increase ACP participation in a racially and ethnically pluralistic patient population.
Context: High-quality advance care planning (ACP) discussions are important to ensure patient receipt of goal-concordant care; however, there is no existing tool for assessing ACP communication quality.
Objectives: The objective of this study was to develop and validate a novel instrument that can be used to assess ACP communication skills of clinicians and trainees.
Methods: We developed a 20-item ACP Communication Assessment Tool (ACP-CAT) plus two summative items. Randomized rater pairs assessed residents' performances in video-recorded standardized patient encounters before and after an ACP training program using the ACP-CAT. We tested the tool for its 1) discriminating ability, 2) interrater reliability, 3) concurrent validity, 4) feasibility, and 5) raters' satisfaction.
Results: Fifty-eight pre/post-training video recordings from 29 first-year internal medicine residents at Mount Sinai Hospital were evaluated. ACP-CAT reliably discriminated performance before and after training (median score 6 vs. 11, P < 0.001). For both pre/post-training encounters, interrater reliability was high for ACP-CAT total scores (intraclass correlation coefficient or ICC = 0.83 and 0.82) and the summative items Overall impression of ACP communication skills (ICC = 0.73 and 0.80) and Overall ability to respond to emotion (ICC = 0.83 and 0.82). Concurrent validity was shown by the strong correlation between ACP-CAT total score and both summative items. Raters spent an average of 4.8 minutes to complete the ACP-CAT, found it feasible, and were satisfied with its use.
Conclusion: ACP-CAT provides a validated measure of ACP communication quality for assessing video-recorded encounters and can be further studied for its applicability with clinicians in different clinical contexts.
Objectives: This study aimed to reveal the features of older adults’ advance care planning (ACP) discussions by identifying psychosocial factors related to their discussions in Japan, where people value family-centered decision making.
Methods: A qualitative study using in-depth interviews was conducted with 39 participants (aged =65 years) recruited from the outpatient department of a community hospital in Fukushima, Japan. Data were analyzed using the grounded theory approach.
Results: Through experiences of family caregiving, participants became aware of their own feelings about the end of life. Equal relationship with family members was important for lowering the threshold for having discussions. Some participants and their families in the same generation reached agreements on ACP; however, they were willing to yield to children’s decision making despite these discussions.
Discussions: These findings provide insights into the psychosocial factors in relation to ACP discussions and support for the role of ACP discussions in the family-centered decision-making culture.
Background: Advance care planning conversations and preparations do not occur as frequently as they should. Framing advance care planning as a health behavior and an opportunity for community engagement can help improve community-dwellers’ intentions to have discussions and preparations regarding facing serious illness, death and dying.
Methods: A multi-setting confidential pre/post paper survey assessing advance care planning discussions and preparation intentions was given to community-dwelling citizens residing in the New York metropolitan area. Survey items were adapted from a previous end of life survey to include questions on chronic illnesses, important conversations, comfort levels and concerns about end of life. The intervention was a 1-hour presentation on advance care planning (importance, laws, effective communication and audience questions)
Results: Our study found significant interest in discussing advanced care planning across age groups. There were significant changes for participant intentions regarding: having conversations with loved ones, a health care proxy or similar document and none; as well as differences in participant intentions for discussions with caregiver, family, friends, primary physician and no-one.
Conclusion: Educating individuals on the importance of advance care planning may be effective in changing community dwellers’ intentions to start the conversation and put advanced care planning measures in place.
Background: Caregivers are decision stakeholders; yet, few interventions have been developed to help patients and caregivers collaborate on advance care planning (ACP).
Objective: To evaluate a theory-based ACP pilot intervention, Deciding Together, to improve decisional quality, readiness, collaboration, and concordance in ACP decisions for older adult home health (HH) patients and caregivers.
Design: A one-group, pre- and posttest study using matched questionnaires was conducted. The intervention consisted of a clinical vignette, theoretically guided conversation prompts, and a shared decision-making activity.
Setting/Subjects:N = 36 participants (n = 18 HH patients; n = 18 family and nonfamily caregivers) were purposively recruited from a HH agency to participate in the intervention at patients' homes.
Measurements: Demographic and baseline measures were collected for relationship quality, health status, and previous ACP engagement. Outcome measures included perceptions of collaboration, readiness for ACP, concordance in life-sustaining treatment preferences (cardiopulmonary resuscitation, antibiotics, artificial nutrition and hydration, and mechanical ventilation), and decisional conflict. Descriptive statistics, Cohen's coefficients, paired t tests, McNemar's tests, and Wilcoxon signed-rank tests (and effect size estimates, r = z/vN) were calculated using R-3.5.1 (p < 0.05). Single value imputation was used for missing values.
Results: While no significant differences were found for perceptions of collaboration, and readiness for ACP, patients (r = 0.38, p = 0.02) and caregivers (r = 0.38, p = 0.02) had reduced decisional conflict at posttest. Patients' and caregivers' agreement increased by 27.7% for an item assessing patients' preference for artificial nutrition and hydration (p = 0.03).
Conclusions: This study suggests that collaborative ACP decision making may improve decisional conflict for older adult HH patients and their caregivers.
Introduction: Frail older people are known to have low rates of advance care planning (ACP). Many frail patients prefer less aggressive treatment, but these preferences are often not known or respected. Frail patients often have multiple hospital admissions, potentially providing opportunities for ACP.
Objective: To systematically review the literature concerning ACP with frail older people in the acute hospital, with particular reference to: (1) Does ACP improve outcomes? (2) What are the views of patients, relatives and healthcare professionals regarding ACP? (3) Does ACP currently occur? (4) What are the facilitators and barriers to ACP?
Design: Systematic literature review and narrative synthesis. Electronic search of MEDLINE, CINAHL, ASSIA, PsycINFO and Embase databases from January 1990 to May 2019 inclusive. Studies in the acute setting of populations with a mean age > 75 years, not focused on a disease-specific terminal condition were included.
Results: 16 133 articles were retrieved, 14 met inclusion criteria. No studies used an objective measure of frailty. One randomised controlled trial (RCT) found that ACP improves outcomes for older patients. Although 74%–84% of capacitous older inpatients are receptive to ACP, rates of ACP are 0%–5%; the reasons for this discrepancy have been little studied. The nature of ACP in clinical practice is unknown thus the extent to which it reflects the RCT intervention cannot be assessed. The outcomes that are important to patients are poorly understood and family and physician experiences have not been explored.
Conclusions: A better understanding of this area could help to improve end-of-life care for frail older people.
Family caregivers of people with dementia often must make crucial medical decisions for them that may increase the burden of care experienced. Although undertaking Advance Care Planning (ACP) might reduce their decision-making burden, completion rates remain very low. The present study aimed to explore the common beliefs of family caregivers of people with dementia about undertaking ACP for themselves. A qualitative study was conducted, using a semi-structured questionnaire based on the Theory of Planned Behavior. Face-to-face interviews were conducted with a convenience sample of 20 family caregivers of people with dementia in Israel. The behavioral beliefs expressed by the participants referred to the dual benefits of ACP, for the person who will not be able to make medical decisions at the end of life and for themselves. Participants mentioned that family members and friends were the main persons with whom they would consult in making decisions regarding ACP. Personal characteristics and instrumental factors were mentioned as enablers and barriers to undertaking ACP. Findings from the study provide an important basis for expanding research and for developing interventions that can encourage undertaking ACP.
Purpose of the review: To identify and assess factors that affect the decisions to initiate advance care planning (ACP) amongst people living with dementia (PwD).
Methods: A narrative review was conducted. A keyword search of Medline, CINAHL PsycINFO, and Web of Sciences databases produced 22,234 articles. Four reviewers independently applying inclusion/exclusion criteria resulted in 39 articles. Discrepancies were settled in discussion.
Results: Twenty-eight primary studies and eleven review articles remained. Narrative analysis generated five categories of facilitating and inhibitory factors: people with dementia, family orientation, healthcare professionals (HCP), systemic and contextual factors, and time factors. Key facilitators of ACP initiation were (i) healthcare settings with supportive policies and guidelines, (ii) family members and HCPs who have a supportive relationship with PwD, and (iii) HCPs who received ACP education. Key inhibitors were: (i) lack of knowledge about the dementia trajectory in stakeholders, (ii) lack of ACP knowledge, and (iii) unclear timing to initiate an ACP.
Conclusion: This review highlighted the main challenges associated with optimal ACP initiation with PwD. To encourage effective ACP initiation with PwD, succinct policies and guidelines for clinical commissioners are needed. ACP also needs to be discussed with family members in an informal, iterative manner. More research is required on initiation timing given the disease trajectory and changing family dynamics.
Purpose: Advance care planning is an important component of quality palliative care. In Asian countries, few randomized clinical trials have been reported. This pilot randomized-controlled trial examined the effects of brief nurse intervention with visual materials on the goal-of-care preference, cardiopulmonary resuscitation (CPR) preference, and designation of a health care proxy.
Methods: This randomized clinical trial was performed from January to February 2018 on elderly Japanese patients with chronic disease. The patients were randomly assigned to a control group (brief nurse intervention using verbal descriptions) or intervention group (using visual materials). The primary endpoint was goal-of-care preference, and secondary outcomes included the following: (1) CPR preference, (2) presence of a designated health care proxy, (3) knowledge of CPR, and (4) readiness for advance care planning. Outcome measures were obtained at baseline and just after completion of the intervention.
Results: A total of 220 patients were enrolled (117 in the intervention group and 103 in the control group). All patients completed post-intervention measurement. There was no significant difference between the groups in any of the outcome measures, while <5% of the participants wanted life-prolonging care as the goal of care at the baseline. Before/after comparisons indicated that, in both groups, the number of participants who designated a health care proxy significantly increased (29% to 65% vs. 22% to 52%, respectively; p < 0.001 each); and the knowledge and readiness scores significantly increased. Moreover, there was a significant increase in the number of patients who did not want CPR (55% to 67% with a terminal condition, p = 0.003; 67% to 80% with a bedridden condition, p < 0.001) in the intervention group.
Conclusions: Brief nurse intervention increased documentation of a patient-designated health care proxy and improved the knowledge of CPR and patient readiness. Visual materials might help patients to imagine the actual situation regarding CPR.
Medical leaders have said it is “unacceptable” for advance care plans—with or without a completed “Do not attempt to resuscitate” (DNAR) form—to be applied in a blanket manner to whole groups of people during the covid-19 pandemic.
Context: Advance care planning (ACP) is used to prepare patients and caregivers for future “in the moment” decisions at the end-of-life. Patients with cancer generally do not engage in all 3 components of ACP (documented living will, health-care surrogate, end-of-life discussions); however, little is known about the impact of these varying levels of ACP engagement on caregivers postdeath.
Objective: To examine the relationship between varying levels of ACP engagement and caregivers’ perceptions of cancer decedents’ end-of-life experiences.
Methods: A secondary analysis of the 2002 to 2014 waves of the Health and Retirement Study data using structural equation modeling was conducted. Five levels of ACP engagement were defined: full (discussions/documents), augmented discussions, documents only, discussions only, and no engagement.
Results: Among the 2172 cancer death cases, the analyzed sample included 983 cases where end-of-life decisions occurred. Compared to no ACP, all levels of ACP were significantly associated with caregivers’ positive perceptions of cancer decedents’ end-of-life experiences (P = .001), controlling for sex, race, and Hispanic ethnicity (R 2 = .21). However, the relative impact of each level of ACP engagement was not equal; full engagement (ß = .61) was associated with a greater impact compared to each of the partial levels of engagement (augmented discussions [ß = .33], documents only [ß = .17], discussions only [ß = .17]).
Conclusion: Partial ACP engagement, not just nonengagement, serves as an important clinically modifiable target to improve the end-of-life care experience among patients with cancer and the perceptions of those experiences among bereaved caregivers.
PURPOSE: Opportunities for advance care planning (ACP) discussions continue to be missed despite the demonstrated benefit of such conversations. This is in part because of a poor understanding of patient preferences. We aimed to determine oncology patients’ preferences surrounding ACP with a focus on the choice of which health care providers to have the conversation with and the timing of conversations.
METHODS: cross-sectional 19-question survey of surgical and medical oncology patients in a tertiary care hospital was conducted that assessed knowledge, experience, and preferences surrounding ACP. Quantitative variables were reported with descriptive statistics, and a coding structure was developed to analyze qualitative data.
RESULTS: Two hundred patients were surveyed. Only 24% of patients reported previously having ACP discussions with their physicians despite 82.5% reporting a wish to do so. Patients felt that these discussions were a priority for them (to alleviate familial guilt, maintain control, and prevent others’ values from guiding end-of-life care), but they reported that previous experiences with ACP had been neither comprehensive nor effective. Most patients (43.5%) preferred to have ACP discussions with their primary care providers (PCPs) compared with 7% preferring their surgeon and 5.5% preferring their oncologist. Trust and familiarity with PCPs arose as the dominant theme underlying this selection. Most patients (94%) preferred to have ACP discussions early, with 45% wishing such a discussion had been initiated before their cancer diagnosis.
CONCLUSION: Patients with cancer prefer to have ACP discussions with their PCPs and prefer to do so early in their disease course.
Purpose: Palliative care is recommended for patients with metastatic cancer, but there has been limited research about embedded palliative care for specific patient populations. We describe the impact of a pilot program that provided routine, early, integrated palliative care to patients with metastatic colorectal cancer.
Methods: Mixed methods pre-post intervention cohort study at an academic cancer center. Thirty control then 30 intervention patients with metastatic colorectal cancer were surveyed at baseline and 1, 3, 6, 9, and 12 months thereafter about symptoms, quality-of-life, and likelihood of cure. We compared survey responses, trends over time, rates of advance care planning, and healthcare utilization between groups. Patients, family caregivers, and clinicians were interviewed.
Results: Patients in the intervention group were followed for an average of 6.5 months and had an average of 3.5 palliative care visits. At baseline, symptoms were mild (average 1.85/10) and 78.2% of patients reported good/excellent quality-of-life. Half (50.9%) believed they were likely to be cured of cancer. Over time, symptoms and quality-of-life metrics remained similar between groups, however intervention patients were more realistic about their likelihood of cure (p = 0.008). Intervention patients were more likely to have a surrogate documented (83.3% vs. 26.7%, p < 0.0001), an advance directive completed (63.3% vs. 13.3%, p < 0.0001), and non-full code status (43.3% vs. 16.7%, p < 0.03). All patients and family caregivers would recommend the program to others with cancer.
Conclusions: We describe the impact of an embedded palliative care program for patients with metastatic colorectal cancer, which improved prognostic awareness and rates of advance care planning.
The importance of advance care planning (ACP) has been increasingly recognized by health systems. However, 46-76% of patients report engaging in ACP with lawyers, while only a minority report doing so with physicians. In the U.S. ACP with lawyers focuses on advance directive documents, naturally occurs outside of healthcare contexts, and is often uninformed by the clinical context, such one’s prognosis and clinical trajectory. These forms are regularly stored at home or at a lawyer’s office and not available at the bedside when needed in a medical crisis. Yet, in contrast to clinicians, lawyers hold sophisticated knowledge about their states’ advance directive law. Lawyers may also understand clients’ socioeconomic context and plans more broadly, which are known to be critical for contextualizing and personalizing patient care but are often not well-captured in healthcare. Aligning medical and legal approaches to ACP is important to ensuring the quality and value of those efforts. As an important first step toward this goal, we convened an interprofessional panel of medical and legal experts to elucidate the state of medical-legal ACP and begin to identify strategies to improve and align practices within and across professions. This article describes the historical disconnects between the medical and legal practice of ACP, recommendations and products of the interprofessional panel, and recommendations for future medical-legal collaboration.
The novel coronavirus disease 2019 (COVID-19) pandemic is challenging health care systems worldwide and raising important ethical issues, especially regarding the potential need for rationing health care in the context of scarce resources and crisis capacity. Even if capacity to provide care is sufficient, one priority should be addressing goals of care in the setting of acute life threatening illness, especially for patients with chronic, life-limiting disease.
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INTRODUCTION: Advance care planning (ACP) discussions help guide future medical care consistent with patient wishes. These discussions should be a part of routine care and should be readdressed frequently as a patient's medical condition changes. Limited literature exists supporting structured processes for identifying persons who may benefit from these conversations. The purpose of this integrative review was to understand whether targeting patients with episodic disease trajectories in the acute care setting will increase their willingness to participate in ACP discussions.
METHODS: Using the Johns Hopkins Nursing Evidence-Based Practice Model as a guideline, this integrative review focused on the research query "In the acute care setting, does targeting patients with heart failure or chronic obstructive pulmonary disease for ACP lead to increased willingness to participate in these discussions." Articles from 2009 to September 2019 were considered for review.
RESULTS: Six articles met inclusion criteria for final analysis. Articles outside of the United States were excluded. Four themes emerged from the literature: (1) improved patient attitudes toward ACP, (2) effective communication surrounding care preferences, (3) strengthened connection between preferred and delivered care, and (4) increased patient involvement in ACP.
CONCLUSION: Chronic diseases such as heart failure and COPD have a high symptom burden punctuated by exacerbations, making it difficult to know when introduction of ACP discussions would be most beneficial. Future research should focus on a deeper evaluation of when to introduce ACP conversations in this population and which ACP interventions are effective to facilitate these discussions.
Objectives: To estimate the probability of a substitute decision maker choosing to withdraw life-sustaining therapy after hearing an affirmative patient response to the phrase "Do you want everything done?"
Design: Discrete choice experiment.
Setting: Single community hospital in Ontario.
Subjects: Nonrandom sampling of healthcare providers and the public.
Intervention: Online survey.
Measurements and Main Results: Of the 1,621 subjects who entered the survey, 692 consented and 432 completed the survey. Females comprised 73% of subjects. Over 95% of subjects were under 65 years old, and 50% had some intensive care-related exposure. Healthcare providers comprised 29% of the subjects. The relative importance of attributes for determining the probability of withdraw life-sustaining therapy by substitute decision makers was as follows: stated patient preferences equals to 23.4%; patient age equals to 20.6%; physical function prognosis equals to 15.2%; length of ICU stay equals to 14.4%; survival prognosis equals to 13.8%; and prognosis for communication equals to 12.6%. Using attribute level utilities, the probability of an substitute decision maker choosing to withdraw life-sustaining therapy after hearing a patient answer in the affirmative "Do you want everything done?" compared with "I would not want to live if I could not take care of myself" was 18.8% (95% CI, 17.2-20.4%) versus 59.8% (95% CI, 57.6-62.0%) after controlling for all the other five attribute levels in the scenario: age greater than 80 years; survival prognosis less than 1%; length of ICU stay greater than 6 months; communication equals to unresponsive; and physical equals to bed bound.
Conclusions: Using a discrete choice experiment survey, we estimated the impact of a commonly employed and poorly understood phrase physicians may use when discussing advance care plans with patients and their substitute decision makers on the subsequent withdraw life-sustaining therapies. This phrase is predicted to dramatically reduce the likelihood of withdraw life-sustaining therapy even in medically nonbeneficial scenarios and potentially contribute to low-value end-of-life care and outcomes. The immediate cessation of this term should be reinforced in medical training for all healthcare providers who participate in advance care planning.
OBJECTIVE: The "surprise question" ("Would you be surprised if this patient died in the next year?") has been shown to be predictive of 12-month mortality in multiple populations, but has not been studied in gynecologic oncology (GO) patients. We sought to evaluate the prognostic performance of the surprise question in GO patients among physician and non-physician providers.
METHODS: GO providers at two tertiary care centers were asked the surprise question about a cohort of their patients undergoing chemotherapy or radiation. Demographic and clinical information was chart abstracted. Mortality data were collected at one year; relative risk of death at one year based on response to the surprise question was then calculated.
RESULTS: 32 providers (12 MDs, 7 APPs, 13 RNs) provided 942 surprise question assessments for 358 patients. Fifty-seven % had ovarian cancer and 54% had recurrent disease. Eighty-three (24%) patients died within a year. Patients whose physician answered "No" to the surprise question had a 43% one-year mortality (compared to 10% for "Yes"). Overall RR of 12-month mortality for "No" was 3.76 (95% CI 2.75-5.48); this association remained significant in all provider types. Among statistically significant predictors of 12-month mortality (including recurrent disease and >2 prior lines of chemotherapy), the surprise question had the highest RR.
CONCLUSIONS: The surprise question is a simple, one question tool that effectively identifies GO patients increased risk of 12-month mortality. The surprise question could be used to identify patients for early referral to palliative care and initiation advance care planning.
Background: Multiple chronic conditions (MCCs) are associated with increased intensity of end-of-life (EOL) care, but their effect is not well explored in patients with cancer.
Objective: we examined EOL health care intensity and advance care planning (ACP) documentation to better understand the association between MCCs and these outcomes.
Design: Retrospective cohort study.
Setting/Subjects: Patients aged 18+ years at UW Medicine who died during 2010-2017 with poor prognosis cancer, with or without chronic liver disease, chronic pulmonary disease, coronary artery disease, dementia, diabetes with end-stage organ damage, end-stage renal disease, heart failure, or peripheral vascular disease.
Measurements: ACP documentation 30+ days before death, in-hospital death, and inpatient or intensive care unit (ICU) admission in the last 30 days. We performed logistic regression for outcomes.
Results: Of 15,092 patients with cancer, 10,596 (70%) had 1+ MCCs (range 1-8). Patients with cancer and heart failure had highest odds of hospitalization (odds ratio [OR] 1.67, 95% confidence interval [CI] 1.46-1.91), ICU admission (OR 2.06, 95% CI 1.76-2.41), or in-hospital death (OR 1.62, 95% CI 1.43-1.84) versus patients with cancer and other conditions. Patients with ACP 30+ days before death had lower odds of in-hospital death (OR 0.65, 95% CI 0.60-0.71), hospitalization (OR 0.67, 95% CI 0.61-0.74), or ICU admission (OR 0.71, 95% CI 0.64-0.80).
Conclusions: Patients with ACP 30+ days before death had lower odds of high-intensity EOL care. Further research needs to explore how to best use ACP to ensure patients receive care aligned with patient and family goals for care.
Background/Objectives: Older homeless-experienced adults have low rates of advance care planning (ACP) engagement despite high rates of morbidity and mortality. To inform intervention development, we examined potential barriers and solutions to ACP engagement.
Design: Cross-sectional qualitative study.
Setting: We recruited adults who were homeless in the prior three years and =50 years of age in the San Francisco Bay Area, and recruited clinical stakeholders from a national meeting of homeless providers. We analyzed qualitative data using thematic analysis.
Measurements: We conducted semistructured interviews with homeless-experienced older adults (n = 20) and focus groups with clinical stakeholders (n = 24) about perceived barriers and solutions to ACP engagement.
Results: Participants considered ACP important, reflecting on deaths of people in their networks who had died. Participant-identified barriers to ACP included poor ACP knowledge, lack of familial ties and social isolation, competing priorities, avoidance and lack of readiness, fatalism and mistrust, and lack of ACP training for clinical and nonclinical staff. They identified solutions that included framing ACP as a way to provide meaning and assert choice, providing easy-to-read written documents focused on the populations' unique needs, tailoring content and delivery, initiating ACP in nonclinical settings, such as permanent supportive housing, and providing incentives.
Conclusions: Both older homeless-experienced adults and clinical stakeholders believe that ACP is important, but acknowledge multiple barriers that impede engagement. By focusing on potential solutions, including capitalizing on opportunities outside of health care settings, focusing on the period after housing, and tailoring content, there are opportunities to improve ACP uptake.