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.
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.
On March 11, 2020 the World Health Organization classified COVID-19, caused by Sars-CoV-2, as a pandemic. Although not much was known about the new virus, the first outbreaks in China and Italy showed that potentially a large number of people worldwide could fall critically ill in a short period of time. A shortage of ventilators and intensive care resources was expected in many countries, leading to concerns about restrictions of medical care and preventable deaths. In order to be prepared for this challenging situation, national triage guidance has been developed or adapted from former influenza pandemic guidelines in an increasing number of countries over the past few months. In this article, we provide a comparative analysis of triage recommendations from selected national and international professional societies, including Australia/New Zealand, Belgium, Canada, Germany, Great Britain, Italy, Pakistan, South Africa, Switzerland, the United States, and the International Society of Critical Care Medicine. We describe areas of consensus, including the importance of prognosis, patient will, transparency of the decision-making process, and psychosocial support for staff, as well as the role of justice and benefit maximization as core principles. We then probe areas of disagreement, such as the role of survival versus outcome, long-term versus short-term prognosis, the use of age and comorbidities as triage criteria, priority groups and potential tiebreakers such as 'lottery' or 'first come, first served'. Having explored a number of tensions in current guidance, we conclude with a suggestion for framework conditions that are clear, consistent and implementable. This analysis is intended to advance the ongoing debate regarding the fair allocation of limited resources and may be relevant for future policy-making.
CONTEXT: We reviewed the Veterans Health Administration (VHA) Bereaved Family Survey's (BFS) open-ended responses to understand end of life care (EOL) best practices for Vietnam and pre-Vietnam Veterans.
OBJECTIVES: To identify: 1) recommendations for improved EOL care enhancements for older Veterans 2) a model of best practices in EOL care for Veterans, and 3) any relevant differences in best practices between Vietnam and prior war eras.
METHODS: We examined five years of BFS data (n=2,784), collected between 2013 and 2017, from bereaved family members of Veterans focusing on 2 open-ended questions: 1) Is there anything else you would like to share about the Veteran's care during his last month of life? 2) Is there anything else you would like to share about how the care could have been improved for the Veteran? Applied thematic analysis identified successes and challenges in the experience of the bereaved of Vietnam and pre-Vietnam era Veterans.
RESULTS: Regardless of war era and death venue, a patient-centered approach to EOL care with readily available staff who: 1) provide ongoing support, comfort, honor, and validation; 2) routinely adjust to the patient's changing needs; 3) and provide clear, honest, timely, compassionate communication, was important to the bereaved. Consideration of the uniqueness of Vietnam Veterans is beneficial.
CONCLUSIONS: Patient-centered EOL care should include assigning a point of contact that follows the patient, educates the family on expectations, ensures the patient's changing needs are met, ensures the family has appropriate support, and communicates updates to family throughout the patient's care continuum.
BACKGROUND: Coronavirus-2 (COVID-19) is a global pandemic. As of August 21, mortality from COVID-19 has reached almost 200,000 people, with the United States leading the globe in levels of morbidity and mortality. Large volumes of high-acuity patients, particularly those of advanced age and with chronic comorbidities, have significantly increased the need for palliative care resources beyond usual capacity. More specifically, COVID-19 has changed the way we approach patient and family member interactions.
DISCUSSION: Concern for nosocomial spread of this infection has resulted in strict visitation restrictions that have left many patients to face this illness, make difficult decisions, and even die, alone in the hospital. To meet the needs of COVID patients, services such as Emergency Medicine and Palliative Care have responded rapidly by adopting novel ways of practicing medicine. We describe the use of telepalliative medicine (TM) implemented in an emergency department (ED) setting to allow family members the ability to interact with their loved ones during critical illness, and even during the end of life. Use of this technology has helped facilitate goals of care discussions, in addition to providing contact and closure for both patients and their loved ones.
CONCLUSION: We describe our rapid and ongoing implementation of TM consultation for our ED patients and discuss lessons learned and recommendations for others considering similar care models.
BACKGROUND/OBJECTIVES: To describe the use of home-based medical care (HBMC) among Medicaid beneficiaries.
DESIGN: A systematic review of the peer-reviewed and gray literature of home-based primary care and palliative care programs among Medicaid beneficiaries including dual eligibles.
SETTING: HBMC including home-based primary care and palliative care programs.
PARTICIPANTS Studies describing Medicaid beneficiaries receiving HBMC.
MEASUREMENTS: Three groups of studies were included: those focused on HBMC specifically for Medicaid beneficiaries, studies that described the proportion of Medicaid patients receiving HBMC, and those that used Medicaid status as a dependent variable in studying HBMC.
RESULTS: The peer-reviewed and gray literature searches revealed 574 unique studies of which only 16 met inclusion criteria. Few publications described HBMC as an integral care delivery model for Medicaid programs. Data from the programs described suggest the use of HBMC for Medicaid beneficiaries can reduce healthcare costs. The addition of social supports to HBMC appears to convey additional savings and benefits.
CONCLUSION: This systematic literature review highlights the relative dearth of literature regarding the use and impact of HBMC in the Medicaid population. HBMC has great potential to reduce Medicaid costs, and innovative programs combining HBMC with social support systems need to be tested.
Background: Palliative care-related postdoctoral training opportunities are critical to increase the quantity and quality of palliative care research.
Objective: To describe the history, activities, challenges, and future goals of the National Postdoctoral Palliative Care Research Training Collaborative.
Design: National web-based survey of participating program leaders.
Measurements: Information about participating programs, trainees, challenges faced, and future goals.
Results: Nine participating programs at academic institutions across the United States focus on diverse aspects of palliative care research. The majority of 73 current and former fellows are female (75%) and white (84%). In total, 38% of fellows (n = 28) have MD backgrounds, of whom less than half (n = 12) completed hospice and palliative medicine fellowships. An additional 38% of fellows (n = 28) have nursing PhD backgrounds and 23% (n = 17) have other diverse types of PhD backgrounds. Key challenges relate to recruiting diverse trainees, fostering a shared identity, effectively advocating for trainees, and securing funding. Future goals include expanding efforts to engage clinician and nonclinician scientists, fostering the pipeline of palliative care researchers through expanded mentorship of predoctoral and clinical trainees, increasing the number of postdoctoral palliative care training programs, and expanding funding support for career development grants.
Conclusion: The National Postdoctoral Palliative Care Research Training Collaborative fills an important role in creating a community for palliative care research trainees and developing strategies to address shared challenges.
CONTEXT: Cancer patients' comfort near the end of life is often undermined by unnecessary and burdensome treatments. There is a need for more research examining racial disparities in end-of-life care, especially in regions with a history of racial discrimination.
OBJECTIVES: To examine whether Black adults received more burdensome end-of-life care than White adults in a population-based data set of cancer decedents in Louisiana, a state with a history of slavery and long-standing racial disparities.
METHODS: This was a retrospective analysis of end-of-life care from the Research Action for Health Network (REACHnet), a regional PCORI-funded database. The sample consisted of 875 White and 415 Black patients with metastatic cancer who died in Louisiana from 2011-2017. We used logistic regression to examine whether race was associated with five indicators of burdensome care in the last 30 days of life: chemotherapy use, inpatient hospitalization, intensive care unit (ICU) admission, emergency department (ED) admission, and mechanical ventilation.
RESULTS: Most patients (85.0%) received at least one indicator of burdensome care: hospitalization (76.5 %), ICU admission (44.1%), chemotherapy (29.1%), mechanical ventilation (23.0%), ED admission (18.3%). Odds Ratios (ORs) indicated that Black individuals were more likely than White individuals to be hospitalized (OR=1.66, 95% CI: 1.21 to 2.28, p=.002) or admitted to the ED (OR=1.57, 95% CI: 1.16 to 2.13, p=.004) during their last month of life.
CONCLUSIONS: Findings have implications for informing healthcare decision making near the end of life for patients, families, and clinicians, especially in regions with a history of racial discrimination and disparities.
Context: Palliative care programs are typically evaluated using observational data, raising concerns about selection bias.
Objective: To quantify selection bias due to observed and unobserved characteristics in a palliative care demonstration program.
Methods: Program administrative data and 100% Medicare claims data in two-states and a 20% sample in eight-states (2013-2017). The sample included 2983 Medicare fee-for-service beneficiaries age 65+ participating in the palliative care program and three matched cohorts: 1) regional 2) two-states and 3) eight-states. Confounding due to observed factors was measured by comparing patient baseline characteristics. Confounding due to unobserved factors was measured by comparing days of follow-up, and six-month and one-year mortality rates.
Results: After matching, evidence for observed confounding included differences in observable baseline characteristics including race, morbidity and utilization. Evidence for unobserved confounding included significantly longer mean follow-up in the regional, two-state, and eight-state comparison cohorts, with 207 (p<.001), 192 (p<.001), and 187 (p<.001) days, respectively, compared to the 162 days for the palliative care cohort. The palliative care cohort had higher 6 month and 1-year mortality rates of 53.5% and 64.5% compared to 43.5% and 48.0% in the regional comparison, 53.4% and 57.4% in the two-state comparison, and 55.0% and 59.0% in the eight-state comparison.
Conclusions: This case study demonstrates that selection of comparison groups impacts the magnitude of measured and unmeasured confounding, which may change effect estimates. The substantial impact of confounding on effect estimates in this study raises concerns about the evaluation of novel serious illness care models in the absence of randomization. We present key lessons learned for improving future evaluations of palliative care using observational study designs.
CONTEXT: One fundamental way to honor patient autonomy is to establish and enact their wishes for end of life care. Limited research exists regarding adherence with code status.
OBJECTIVES: This study aimed to characterize cardiopulmonary resuscitation attempts discordant with documented code status at the time of death in the United States and to elucidate potential contributing factors.
METHODS: The Cerner APACHE outcomes database, which includes 237 U.S. hospitals that collect manually abstracted data from all critical care patients, was queried for adults admitted to intensive care units with a documented code status at the time of death from January 2008 to December 2016. The primary outcome was discordant cardiopulmonary resuscitation at death. Multivariable logistic regression models were used to identify patient-, and hospital-level associated factors after adjustment for age, hospital, and illness severity (APACHE III score).
RESULTS: A total of 21,537 patients from 56 hospitals were included. Of patients with a do-not-resuscitate code status, 149 (0.8%) received cardiopulmonary resuscitation at death and associated factors included: Black race, higher APACHE III score or treatment in small or non-teaching hospitals. Of patients with a full code status, 203 (9.0%) did not receive cardiopulmonary resuscitation at death and associated factors included: higher APACHE III score, primary neurologic or trauma diagnosis, or admission in a more recent year.
CONCLUSION: At the time of death, 1.6% of patients received or did not undergo cardiopulmonary resuscitation in a manner discordant with their documented code statuses. Race, and institutional factors were associated with discordant resuscitation, and addressing these disparities may promote concordant end-of-life care in all patients.