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.
The Core Bereavement Items (CBI) is a commonly used measure that assesses core grief and bereavement experiences. Although previous psychometric testing has been conducted, no studies have assessed its use specifically aimed at adults aged 50 and older or for those who lost a loved one who was hospice care. This is critical, as losses and additional obstacles in bereavement compound throughout the aging process. The present study investigated reliability, content validity, and internal structure of the CBI in bereaved adults aged 50 and older whose loved one died while in hospice care (N = 205). Associations based on age, marital status, and relationship with the died patients were consistent with preexisting research. Results of a Cronbach a reliability test found that the CBI has excellent reliability in this population. Further, content validity was established based on the judgment of subject matter experts. Exploratory factor analysis supported a 1-factor structure, with all items loading as General Grief Experiences. Based on this analysis, the CBI is a valid and reliable tool when used with adults aged 50 and older.
Background: The opioid epidemic has spurred investigations for nonopioid options, yet limited research persists on medical marijuana's (MMJ) efficacy in managing cancer-related symptoms.
Objective: We sought to characterize MMJ's role on symptomatic relief and opioid consumption in the oncologic population.
Design: Retrospective chart review of MMJ-certified oncology patients was performed. Divided patients into MMJ use [MMJ(+)] versus no use [MMJ(-)], and Edmonton Symptom Assessment System (ESAS)-reported pain cohorts: “mild-moderate” versus “severe.”
Measurements: Medical records were reviewed for ESAS, to measure physical and emotional symptoms, and opiate consumption, converted into morphine milligram equivalents (MME). Minimal clinically important differences were determined. Wilcoxon signed-rank tests determined statistical significance between MMJ-certification and most recent palliative care visit.
Results: Identified 232 patients [95/232 MMJ(-); 137/232 MMJ(+)]. Pain, physical and total ESAS significantly improved for total MMJ(-) and MMJ(+); however, only MMJ(+) significantly improved emotional ESAS. MMJ(-) opioid consumption increased by 23% (97.5–120 mg/day MME, p = 0.004), while it remained constant (45–45 mg/day MME, p = 0.522) in MMJ(+). Physical and total ESAS improved in mild-moderate-MMJ(-) and MMJ(+). Pain and emotional symptoms worsened in MMJ(-); while MMJ(+)'s pain remained unchanged and emotional symptoms improved. MMJ(-) opioid consumption increased by 29% (90–126 mg/day MME, p = 0.012); while MMJ(+)'s decreased by 33% (45–30 mg/day MME, p = 0.935). Pain, physical, emotional, and total ESAS scores improved in severe-MMJ(-) and MMJ(+); opioid consumption reduced by 22% in MMJ(-) (135–106 mg/day MME, p = 0.124) and 33% in MMJ(+) (90–60 mg/day MME, p = 0.421).
Conclusions: MMJ(+) improved oncology patients' ESAS scores despite opioid dose reductions and should be considered a viable adjuvant therapy for palliative management.
Background: Incorporating patient narratives into the electronic health record (EHR) is an opportunity to integrate patients' values and beliefs into their care and improve patient–clinician communication.
Objective: The study's aims were to (1) identify barriers and facilitators influencing the implementation of a cocreated patient narrative intervention and (2) assess the acceptability/usability of the patient's narrative from the perspective of key stakeholders—the patient and acute care bedside nurse.
Design: We used an implementation design using mixed methods.
Setting/Subjects: Twenty patients and 18 nurses were enrolled from five units in an acute care hospital.
Results: For patients, the narrative intervention provided an avenue to discuss and share how illness has impacted their life in psychological, social, and spiritual belief domains. For nurses, the ability to read the patient's narrative provided benefits that fostered improved communication and more connection with their patients. Despite successfully meeting recruitment targets, time was the largest barrier for patient and nurse participants. Overall, the nurse participants gave high ratings on most of the items on the System Usability Scale with one exception—EHR integration. The lack of EHR integration on the System Usability Survey corresponds with the nurses' stated desire for a prominent location of patient narratives in the EHR.
Conclusions: The patient narrative intervention was acceptable and usable for hospitalized patients and nurse participants. Our study demonstrates that a cocreated patient narrative intervention provides avenues for patients and nurses to connect despite being in hectic acute care settings.
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: Outpatients with cancer commonly have nonmedical opioid use (NMOU) behaviors and use opioids to dull emotional and existential suffering. Buprenorphine is often used for cancer pain due to less reported euphoria when compared to other opioids.
Methods: A retrospective review was done in patients who were prescribed buprenorphine for cancer pain. Pain scores were reported on a Likert pain scale of 1 to 10. Nonmedical opioid use was defined as patients taking opioids for emotional pain at or above the maximum prescribed amount.
Results: For 16 patients, the mean pain score prior to buprenorphine (pain pre) was 8.3 (Standard deviation (Std) 1.6), and the mean pain score on follow-up post-buprenorphine (pain post) was 6.1 (Std 2.3) with a reduction in mean pain score (pain change) of -2.0 (Std 2.9, P = .059). Those patients without NMOU had a pain prescore of 9.5 (Std 1.0) and pain post of 4.3 (Std 2.5) with a mean pain change of -5.0 (Std 1.7, P = .20). The mean pain change in those with chemical coping (-1.3/Std 2.7), illicit drug use (-2.8/Std 1.0), or psychiatric comorbidity (-2.4/Std 2.7) were reduced after buprenorphine, however, not statistically significant. Outpatient rotation to buprenorphine was well tolerated.
Conclusions: The pain score in those patients without NMOU was significantly lower after rotation to buprenorphine than those with NMOU. We deduce that in those with NMOU, it is more challenging to achieve pain relief with buprenorphine. Overall, for all patients, rotation to buprenorphine resulted in a marginally significantly reduced pain score.
Deep brain stimulation (DBS) is an implanted neurological device effective in treating motor symptoms of Parkinson disease (PD), such as tremor, rigidity, and bradykinesia. More than 150,000 patients worldwide have been implanted DBS, including its continued benefit or potential complications, yet, no published articles provide guidance for hospice providers regarding the management of DBS devices in end-of-life care. With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to adress clinical and ethical challenges in optimizing DBS for patients with PD nearing the end of life.
Social workers provide unique knowledge and psychosocial skills for seriously ill patients and their family. Clinicians often collaborate with social workers when caring for seriously ill patients. In fact, the Medicare Hospice Benefit and the National Consensus Project (NCP) for Quality Palliative Care state that social workers are a core member of a hospice or palliative care (PC) interdisciplinary team (IDT). This Fast Fact will discuss the role of the hospice and palliative care social worker.
Background: Narrative medicine (NM) interventions have positively influenced empathy and burnout to varying degrees in health-care workers. We systematically reviewed the impact of poetry, a form of NM, on empathy and professional burnout.
Methods: A comprehensive search of Ovid MEDLINE(R) and Epub Ahead of Print, In-Process & Other Non-Indexed Citations, and Daily, Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus, from inception to September 25, 2018, for articles published in English, was conducted using search terms related to NM, empathy, professional burnout, and health-care personnel.
Results: Of the 401 abstracts independently screened for inclusion by 2 reviewers, 2 quantitative, 3 qualitative studies, and 1 research letter were included. One research letter, focusing on the use of poetry, found it to increase empathy as measured by a nonvalidated questionnaire. All other studies used mixed NM interventions: 2 quantitative studies, using validated surveys, showed an increase in empathy and 2 qualitative studies showed limited to a prominent finding of increased empathy. There were no studies that used poetry exclusively to assess impact on professional burnout. One quantitative study, utilizing a validated survey, revealed no overall reduced burnout among residents, although high attendance participants had moderately reduced burnout postintervention, and one qualitative study noted limited reduction in burnout.
Conclusion: There is evidence that poetry as part of a NM intervention may increase empathy and limited evidence that it may reduce professional burnout among health-care workers.
Nalbuphine (Nubain) is a unique opioid analgesic that was first manufactured in the 1970s. It is not a controlled substance in the United States as it was removed from the shedule II drug list in 1976 in response to assuring safety data. Considering ongooing opioid shortages in the acute settings, it is prudent to re-examine malbuphine as an analgesic for serious ill patients.
Context: Early integration of palliative care (PC) into adult oncology practice has been shown to improve quality of life and health care utilization; however, little is known about PC in young adults with cancer.
Objectives: Our primary objective was to determine rates and timing of PC consultation in young adult patients with advanced solid tumor cancer at a single institution.
Methods: We conducted a retrospective analysis of young adults of age 18–39 years with advanced solid tumor malignancy at an urban academic medical center between June 1, 2014 and June 30, 2015.
Results: Of 129 patients identified, 70 of 129 (54%) had a PC consult and 34 of 70 were inpatient-only consults. PC consults occurred for a median of 104 days before death, and for those with inpatient-only consults, PC consults occurred for a median of 18 days. Patients with worse recent Eastern Cooperative Oncology Group (ECOG) performance status were more likely to have had a PC consult (p < 0.001). Of the patients who died during the study period, patients with PC consults were more likely to have been hospitalized (72% vs. 47%), in the intensive care unit (21% vs. 0%), in the emergency room (ER) (72% vs. 47%), and have received chemotherapy (17% vs. 0%) within 30 days of death compared with those who did not have a consult; however, these differences were not statistically significant.
Conclusion: In this analysis, over half of young adults with advanced solid tumors received PC consults. PC consult typically occurred for one year after diagnosis and about three months before death. Additional research is needed to identify how to better integrate PC early in this patient population and assess the resulting impact.
Background: New Orleans, Louisiana served as a central location for a surge of novel coronavirus cases during the months of March 2020 to May 2020. To provide guidance to palliative care teams naive to the palliative care demand associated with a surge of coronavirus cases, we document our protocol to best optimize palliative care resources. This report aims to present this information and reflect upon what was most beneficial/least beneficial to serve as a roadmap for palliative teams facing this pandemic.
Objective: To pilot a team-based structured protocol to categorize severity of COVID-19 intensive care unit (ICU) admissions and subsequently collaborate with the palliative interdisciplinary team to assess physical, spiritual, and psychosocial needs.
Design: New ICU consults were categorized into color-coded clinical severity "pots" during daily ICU interdisciplinary rounds. Clinical decision making and communication with patient/next of kin were based on "pot" classification.
Settings/Subjects: Palliative medicine consults were placed on all COVID-19 positive patients admitted to the ICU between March 29, 2020, and May 1, 2020.
Measurements: A retrospective chart review was performed to analyze the effect of palliative care consultation on completion of goals-of-care conversations and the life-sustaining treatment (LST) document, an advance directive form specific to the Veterans Affairs hospital system between March 29, 2020 and May 1, 2020.
Results: Of the palliative consults evaluated by a palliative provider, 74% resulted in completion of a LST document, 58% resulted in video contact with family members, and 100% incorporated a goals-of-care discussion.
Conclusions: We found that standardizing palliative care consultation on all COVID-19 positive ICU admissions subjectively alleviated the burden on ICU providers and staff in the midst of a crisis, resulted in increased documentation of patient goals-of-care preferences/LSTs, facilitated clinical updates to family members, and better distributed clinical burden among palliative team members.
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.
BACKGROUND: A critical barrier to improving the quality of end-of-life (EOL) cancer care is our lack of understanding of the mechanisms underlying variation in EOL treatment intensity. This study aims to fill this gap by identifying 1) organizational and provider practice norms at major US cancer centers, and 2) how these norms influence provider decision making heuristics and patient expectations for EOL care, particularly for minority patients with advanced cancer.
METHODS: This is a multi-center, qualitative case study at six National Comprehensive Cancer Network (NCCN) and National Cancer Institute (NCI) Comprehensive Cancer Centers. We will theoretically sample centers based upon National Quality Forum (NQF) endorsed EOL quality metrics and demographics to ensure heterogeneity in EOL intensity and region. A multidisciplinary team of clinician and non-clinician researchers will conduct direct observations, semi-structured interviews, and artifact collection. Participants will include: 1) cancer center and clinical service line administrators; 2) providers from medical, surgical, and radiation oncology; palliative or supportive care; intensive care; hospital medicine; and emergency medicine who see patients with cancer and have high clinical practice volume or high local influence (provider interviews and observations); and 3) adult patients with metastatic solid tumors and whom the provider would not be surprised if they died in the next 12 months and their caregivers (patient and caregiver interviews). Leadership interviews will probe about EOL institutional norms and organization. We will observe inpatient and outpatient care for two weeks. Provider interviews will use vignettes to probe explicit and implicit motivations for treatment choices. Semi-structured interviews with patients near EOL, or their family members and caregivers will explore past, current, and future decisions related to their cancer care. We will import transcribed field notes and interviews into Dedoose software for qualitative data management and analysis, and we will develop and apply a deductive and inductive codebook to the data.
DISCUSSION: This study aims to improve our understanding of organizational and provider practice norms pertinent to EOL care in U.S. cancer centers. This research will ultimately be used to inform a provider-oriented intervention to improve EOL care for racial and ethnic minority patients with advanced cancer.
Background: Nearly 3 million U.S. family caregivers support someone with cancer. However, oncology clinic-based service lines that proactively screen, assess, and support cancer caregivers are nearly nonexistent.
Objective: To examine first-year experiences of a nurse-led clinic-based telehealth support service (FamilyStrong) for family caregivers of patients with recently diagnosed grade IV brain tumors.
Methods: This is a retrospective evaluation of operational outcomes from initial implementation of the FamilyStrong Service, developed in partnership with Caregiver and Bereavement Support Services at the University of Alabama at Birmingham (UAB) and the UAB Center for Palliative and Supportive Care. From August 2018 to December 2019, 53 family caregivers were proactively identified and enrolled by a palliative care nurse, working approximately one day/week, who performed monthly caregiver distress thermometer screenings by phone and provided emotional, educational, problem-solving, and referral support.
Results: Enrolled family caregivers were a mean age of 53.5 years and mostly female (62.3%), full- or part-time employed (67.9%), and the patient's spouse/partner (79.3%). Caregivers provided support 6.7 days/week for 11.2 hours/day. The palliative care nurse performed 235 distress screenings and provided support that included 68 documented instances of emotional, problem-solving, and educational support, 41 nurse-facilitated communications with the neuro-oncology team about patient issues, and 24 referrals to UAB and community services (e.g., counseling). The most common problems caregivers wanted assistance with included: managing their relative's health condition and symptoms (51%), coordinating care/services (21%), and planning for the future/advance care planning (17%).
Discussion: The FamilyStrong Program is among the first "real world" oncology clinic-based formal support services for advance cancer family caregivers.
Background: Patients living in rural areas experience a variety of unmet needs that result in healthcare disparities. The triple threat of rural geography, racial inequities, and older age hinders access to high-quality palliative care (PC) for a significant proportion of Americans. Rural patients with life-limiting illness are at risk of not receiving appropriate palliative care due to a limited specialty workforce, long distances to treatment centers, and limited PC clinical expertise. Although culture strongly influences people’s response to diagnosis, illness, and treatment preferences, culturally based care models are not currently available for most seriously ill rural patients and their family caregivers. The purpose of this randomized clinical trial (RCT) is to compare a culturally based tele-consult program (that was developed by and for the rural southern African American (AA) and White (W) population) to usual hospital care to determine the impact on symptom burden (primary outcome) and patient and care partner quality of life (QOL), care partner burden, and resource use post-discharge (secondary outcomes) in hospitalized AA and White older adults with a life-limiting illness.
Methods: Community Tele-pal is a three-site RCT that will test the efficacy of a community-developed, culturally based PC tele-consult program for hospitalized rural AA and W older adults with life-limiting illnesses (n = 352) and a care partner. Half of the participants (n = 176) and a care partner (n = 176) will be randomized to receive the culturally based palliative care consult. The other half of the patient participants (n = 176) and care partners (n = 176) will receive usual hospital care appropriate to their illness.
Discussion: This is the first community-developed, culturally based PC tele-consult program for rural southern AA and W populations. If effective, the tele-consult palliative program and methods will serve as a model for future culturally based PC programs that can reduce patients’ symptoms and care partner burden.
Objectives: Geriatric palliative care approaches support deprescribing of antihypertensives in older nursing home (NH) residents with limited life expectancy and/or advanced dementia (LLE/AD) who are intensely treated for hypertension (HTN), but information on real-world deprescribing patterns in this population is limited. We examined the incidence and factors associated with antihypertensive deprescribing.
Design: National, retrospective cohort study.
Setting and Participants: Older Veterans with LLE/AD and HTN admitted to VA NHs in fiscal years 2009-2015 with potential overtreatment of HTN at admission, defined as receiving at least 1 antihypertensive class of medications and mean daily systolic blood pressure (SBP) <120 mm Hg.
Measures: Deprescribing was defined as subsequent dose reduction or discontinuation of an antihypertensive for =7 days. Competing risk models assessed cumulative incidence and factors associated with deprescribing.
Results: Within our sample (n = 10,574), cumulative incidence of deprescribing at 30 days was 41%. Veterans with the greatest level of overtreatment (ie, multiple antihypertensives and SBP <100 mm Hg) had an increased likelihood (hazard ratio 1.75, 95% confidence interval 1.59, 1.93) of deprescribing vs those with the lowest level of overtreatment (ie, one antihypertensive and SBP =100 to <120 mm Hg). Several markers of poor prognosis (ie, recent weight loss, poor appetite, dehydration, dependence for activities of daily living, pain) and later admission year were associated with increased likelihood of deprescribing, whereas cardiovascular risk factors (ie, diabetes, congestive heart failure, obesity), shortness of breath, and admission source from another NH or home/assisted living setting (vs acute hospital) were associated with decreased likelihood.
Conclusions and Implications: Real-world deprescribing patterns of antihypertensives among NH residents with HTN and LLE/AD appear to reflect variation in recommendations for HTN treatment intensity and individualization of patient care in a population with potential overtreatment. Factors facilitating deprescribing included treatment intensity and markers of poor prognosis. Comparative effectiveness and safety studies are needed to guide clinical decisions around deprescribing and HTN management.
BACKGROUND: The COVID-19 pandemic has highlighted the essential role of palliative care to support the delivery of compassionate, goal-concordant patient care. We created the web-based application, PalliCOVID (https://pallicovid.app/), in April 2020 to provide all clinicians with convenient access to palliative care resources and support. PalliCOVID features evidence-based clinical guidelines, educational content, and institutional protocols related to palliative care for COVID-19 patients. It is a publicly available resource accessible from any mobile device or desktop computer that provides clinicians with access to palliative care guidance across a variety of care settings, including the emergency department, hospital ward, intensive care unit, and primary care practice.
OBJECTIVE: The primary objective of this study was to evaluate usage patterns of PalliCOVID to understand user behavior in relation to this palliative care content platform during the period of the local peak of COVID-19 infection in Massachusetts.
DESIGN: We retrospectively analyzed de-identified usage data collected by Google Analytics from the first day of PalliCOVID's launch on April 7, 2020 until May 1, 2020, the time period that encompassed the local peak of the COVID-19 surge in Massachusetts.
MEASURE: ments: User access data was collected and summarized by Google Analytics software that had been integrated into the PalliCOVID web application.
RESULTS: 2,042 users accessed PalliCOVID and viewed 4,637 pages from April 7 to May 1, 2020. Users spent an average of 2 minutes and 6 seconds per session. 81% of users were first-time visitors, while the remaining 19% were return visitors. The majority of users accessed PalliCOVID from the United States (87%), with a large proportion of users coming from Boston and the surrounding cities (32% of overall users).
CONCLUSIONS: PalliCOVID is one example of a scalable digital health solution that can bring palliative care resources to frontline clinicians. Analysis of PalliCOVID usage patterns has the potential to inform the improvement of the platform to better meet the needs of its user base and guide future dissemination strategies. The quantitative data presented here, although informative about user behavior, should be supplemented with future qualitative research to further define the impact of this tool and extend our ability to deliver clinical care that is compassionate, rational, and well-aligned with patients' values and goals.
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.
OBJECTIVE: The diagnosis of an advanced cancer in young adulthood can bring one's life to an abrupt halt, calling attention to the present moment and creating anguish about an uncertain future. There is seldom time or physical stamina to focus on forward-thinking, social roles, relationships, or dreams. As a result, young adults (YAs) with advanced cancer frequently encounter existential distress, despair, and question the purpose of their life. We sought to investigate the meaning and function of hope throughout YAs' disease trajectory; to discern the psychosocial processes YAs employ to engage hope; and to develop a substantive theory of hope of YAs diagnosed with advanced cancer.
METHOD: Thirteen YAs (ages 23-38) diagnosed with a stage III or IV cancer were recruited throughout the eastern and southeastern United States. Participants completed one semi-structured interview in-person, by phone, or Skype, that incorporated an original timeline instrument assessing fluctuations in hope and an online socio-demographic survey. Glaser's grounded theory methodology informed constant comparative methods of data collection, analysis, and interpretation.
RESULTS: Findings from this study informed the development of the novel contingent hope theoretical framework, which describes the pattern of psychosocial behaviors YAs with advanced cancer employ to reconcile identities and strive for a life of meaning. The ability to cultivate the necessary agency and pathways to reconcile identities became contingent on the YAs' participation in each of the psychosocial processes of the contingent hope theoretical framework: navigating uncertainty, feeling broken, disorienting grief, finding bearings, and identity reconciliation.
SIGNIFICANCE OF RESULTS: Study findings portray the influential role of hope in motivating YAs with advanced cancer through disorienting grief toward an integrated sense of self that marries cherished aspects of multiple identities. The contingent hope theoretical framework details psychosocial behaviors to inform assessments and interventions fostering hope and identity reconciliation.