BACKGROUND: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer's disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD).
OBJECTIVE: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team.
DESIGN: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA.
SUBJECTS: Hospice social workers currently practicing in the United States with at least 1 year of experience.
MEASUREMENTS: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form.
RESULTS: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p < .0001) and confidence in managing behavioral symptoms (16.86%, p = .01) and depression (25.18%, p < .0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program.
CONCLUSIONS: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.
Background: African Americans with lung cancer are diagnosed at later stages and have high mortality rates. Chemotherapy is considered aggressive treatment near the end of life and prevents enrollment in hospice.
Objectives: This study explored chemotherapy in the last 30 and 14 days of life among African Americans with lung cancer.
Methods: A retrospective chart review was used to gather sociodemographic and treatment data on persons newly diagnosed with lung cancer between January 1, 2016 and June 30, 2017. African Americans with a documented date of death were included.
Results: The mean age (N=74) was 64.0 years, 58.1% were rural dwellers, and 59.5% had Medicare. Most had advanced stage non-small cell lung cancer (Stage IIIB, 18.8%; Stage IV, 46.4%). In this study, 17.6% received chemotherapy in the last 14 days of life and 27.0% received chemotherapy in the last 30 days of life. No significant associations between age, sex, residence (rural vs urban) and receipt of chemotherapy in the last 14 or 30 days of life were found. A significant association was found between type of insurance and chemotherapy in the last 14 or 30 days of life: Medicare was associated with chemotherapy in both last 14 days of life 2(1) = 4.448, p = .035 and last 30 days of life 2(1) = 4.773, p = .029. A binomial logistic regression using demographic factors, including insurance, was not significant.
Conclusion: Our results indicate a need for improvement in the number of individuals who receive chemotherapy in the final month of life.
PURPOSE: Although some research has been done on end-of-life (EOL) preferences and wishes, our knowledge of racial differences in the EOL wishes of non-Hispanic White and non-Hispanic Black middle-aged and older adults is limited. Previous studies exploring such racial differences have focused mainly on EOL decision-making as reflected in advance healthcare directives concerning life-sustaining medical treatment. In need of examination are aspects of EOL care that are not decision-based and therefore not normally covered by written advance healthcare directives. This study focuses on racial differences in non-decision-based aspects of EOL care, that is, EOL care that incorporates patients' beliefs, culture, or religion.
AIM: To test the combined effects of race, socioeconomic status, health status, spirituality, perceived discrimination and medical mistrust on the EOL non-decision-based desires and wishes of a representative sample of non-Hispanic White and non-Hispanic Black older California adults.
METHODS: This cross-sectional study used data from the Survey of California Adults on Serious Illness and End-of-Life 2019. To perform data analysis, we used multiple logistic regression models.
RESULTS: Non-Hispanic Blacks reported more EOL non-decision-based desires and wishes than non-Hispanic Whites. In addition to gender, age, and education other determinants of EOL non-decision-based medical desires and wishes included perceived and objective health status, spirituality, and medical trust. Poverty level, perceived discrimination did not correlate with EOL medical wishes.
CONCLUSION: Non-Hispanic Blacks desired a closer relationship with their providers as well as a higher level of respect for their cultural beliefs and values from their providers compared with their White counterparts. Awareness, understanding, and respecting the cultural beliefs and values of older non-Hispanic Black patients, that usually are seen by non-Hispanic Black providers, is the first step for meaningful relationship between non-Hispanic Black patients and their providers that directly improve the end-of-life quality of life for this segment of our population.
Background: In the United States, the percentage of hospitals over 50 beds with palliative care programs has risen substantially from 7% of hospitals in 2001 to 72% in 2017. Yet the dynamic nature of program adoption and closure over time is not known.
Objective: To examine the rate of palliative care program adoption and closure and associated hospital and geographic characteristics in a national sample of U.S. hospitals.
Design: Adoption and closure rates were calculated for 3696 U.S. hospitals between 2009 and 2017. We used multivariable logistic regression models to examine the association between adoption and closure status and hospital, geographic, and community characteristics.
Setting/Subjects: All nonfederal general medical and surgical, cancer, heart, and obstetric or gynecological hospitals, of all sizes, in the United States in operation in both 2009 and 2017.
Results: By 2017, 34.9% (812/2327) of the hospitals without palliative care in 2009 had adopted palliative care programs, and 15.0% (205/1369) of the hospitals with programs had closed them. In multivariable models, hospitals in metropolitan areas, nonprofit and public hospitals (compared to for-profit hospitals), and those with residency training approval by the Accreditation Council for Graduate Medical Education were significantly more likely to adopt and significantly less likely to close palliative care programs during the study period.
Conclusions: This study indicates that palliative care is not equitably adopted nor sustained by hospitals in the United States. Federal and state interventions may be required to ensure that high-quality care is available to our nation's sickest patients.
Objective: Develop and pilot-test a nurse-led primary palliative care intervention for patients with advanced hematologic malignancies.
Background: Nurse-led primary palliative care interventions may improve outpatient palliative care provision for patients with advanced hematologic malignancies.
Methods: This two-phase, single-arm pilot study involved patients with recurrent or resistant hematologic malignancies, their caregivers, and oncology clinicians at two US-based urban, university-affiliated oncology clinics. Measurements included feasibility (enrollment rates, intervention fidelity, and outcome assessment rates) and acceptability (patient, caregiver, and clinician surveys).
Results: In Phase 1 we developed and implemented an oncology nurse-led primary palliative care intervention for patients with recurrent or resistant hematologic malignancies and their caregivers. In Phase 2, we tested feasibility and acceptability. Twenty-six patient participants enrolled. Consent-to-approach rate was 78% and enrolled-to-consent rate was 84%. All enrolled participants received the intervention per protocol. Sixty-nine percent of patients and 100% of caregivers reported that the intervention helped them better understand the patient's illness and cope. Seventy-five percent of oncologists reported that the intervention improved their patients' quality of care, and 25% reported that it helped them take better care of patients.
Conclusions: Although our pilot of oncology nurse-led primary palliative care for patients with advanced hematologic malignancies met some of its secondary feasibility endpoints, it did not meet its primary feasibility endpoint (enrollment) and acceptability was mixed. Protecting nursing staff time, increasing patient and clinician involvement in intervention development, and identifying patients with highest supportive needs may improve feasibility and acceptability of future primary palliative care in hematologic malignancy trials.
Background: Integration of palliative care services into the surgical treatment plan is important for holistic patient care. We sought to examine the association between patient race/ethnicity and county-level vulnerability relative to patterns of hospice utilization.
Patients and Methods: Medicare Standard Analytic Files were used to identify patients undergoing lung, esophageal, pancreatic, colon, or rectal cancer surgery between 2013 and 2017. Data were merged with the Centers for Disease Control and Prevention’s social vulnerability index (SVI). Logistic regression was utilized to identify factors associated with overall hospice utilization among deceased individuals.
Results: A total of 54,256 Medicare beneficiaries underwent lung (n = 16,645, 30.7%), esophageal (n = 1427, 2.6%), pancreatic (n = 6183, 11.4%), colon (n = 26,827, 49.4%), or rectal (n = 3174, 5.9%) cancer resection. Median patient age was 76 years (IQR 71–82 years), and 28,887 patients (53.2%) were male; the majority of individuals were White (91.1%, n = 49,443), while a smaller subset was Black or Latino (racial/ethnic minority: n = 4813, 8.9%). Overall, 35,416 (65.3%) patients utilized hospice services prior to death. Median SVI was 52.8 [interquartile range (IQR) 30.3–71.2]. White patients were more likely to utilize hospice care compared with minority patients (OR 1.24, 95% CI 1.17–1.31, p < 0.001). Unlike White patients, there was reduced odds of hospice utilization (OR 0.97, 95% CI 0.96–0.99) and early hospice initiation (OR 0.94, 95% CI 0.91–0.97) as SVI increased among minority patients.
Conclusions: Patients residing in counties with high social vulnerability were less likely to be enrolled in hospice care at the time of death, as well as be less likely to initiate hospice care early. The effects of increasing social vulnerability on hospice utilization were more profound among minority patients.
OBJECTIVE: To understand the impact of the COVID-19 pandemic on the hospice and palliative workforce and service delivery.
DESIGN AND SAMPLE: This was a cross-sectional survey of 36 hospice and palliative care workforce members representing all United States geographic regions.
RESULTS: Most respondents (70%) reported an increase in specific palliative care services as a result of the pandemic. Two thirds (78%) of respondents reported their agency has cared for confirmed COVID-19 patients. Only half reported the agency had access to laboratory facilities for surveillance and detection of outbreaks in both patients and staff (58%) and that the agency could test patients and providers for COVID-19 (55%). Qualitative comments described the impact of the pandemic and resulting social distancing measures on the emotional well-being of patients, families, and staff.
CONCLUSIONS: Our findings suggest that the COVID-19 pandemic has strained the palliative and hospice care workforce as it provides increased services at an unprecedented rate to patients and families. The implications of these findings are important for public health nurses who are skilled in disaster management and quickly responding to emergencies. The expertise of public health nurses can be leveraged to support palliative care agencies as they strive to manage the pandemic in the communities they serve.
Aim: We validated the NUE rule, using three criteria (Non-shockable initial rhythm, Unwitnessed arrest, Eighty years or older) to predict futile resuscitation of patients with out-of-hospital cardiac arrest (OHCA).
Methods: We performed a retrospective cohort analysis of all recorded OHCA in Marion County, Indiana, from January 1, 2014 to December 31, 2019. We described patient, arrest, and emergency medical services (EMS) response characteristics, and assessed the performance of the NUE rule in identifying patients unlikely to survive to hospital discharge.
Results: From 2014 to 2019, EMS responded to 4370 patients who sustained OHCA. We excluded 329 (7.5%) patients with incomplete data. Median patient age was 62 years (IQR 49 - 73), 1599 (39.6%) patients were female, and 1728 (42.8%) arrests were witnessed. The NUE rule identified 290 (7.2%) arrests, of whom none survived to hospital discharge.
Conclusion: In external validation, the NUE rule (Non-shockable initial rhythm, Unwitnessed arrest, Eighty years or older) correctly identified 7.2% of OHCA patients unlikely to survive to hospital discharge. The NUE rule could be used in EMS protocols and policies to identify OHCA patients very unlikely to benefit from aggressive resuscitation.
Advance care planning (ACP) is a cornerstone of self-determination for the type of care provided at the end of life. Despite many national efforts to improve American adults' engagement in ACP, statistics indicate low engagement. Low engagement, especially among racial and ethnic minority populations, immigrants, people with lower socioeconomic status, young adults, rural residents, or non-English speakers, is common. Advance care planning engagement among Muslims living in the United States has been minimally studied. The purpose of this study was to explore Muslims' engagement in ACP. A cross-sectional descriptive design was used. Participants were recruited from Islamic organizations through convenience and snowball sampling. Engagement in ACP was measured by the Advance Care Planning Engagement Survey. A sample of 148 Muslims (18-79 years of age) participated in the study. The average engagement scores ranged from 1.97 to 2.09, with about two-thirds in the precontemplation stage. Significant differences in engagement scores were found according to health condition and end of life experiences. Results suggest a need for further collaborative efforts by health care providers, policymakers, and researchers to mitigate the disparities in ACP engagement in the American Muslim community.
BACKGROUND: Previous research has found racial differences in hospice knowledge and misconceptions about hospice care, which may hinder access to hospice care. Asian Indians are a rapidly growing population in the United States, yet limited research has focused on their beliefs toward end-of-life care. This project investigates Indian Americans' knowledge of and attitudes toward hospice care and advance care planning.
PROCEDURES: A cross-sectional design was employed using surveys about participants' knowledge of and attitudes toward hospice care and advance care planning. Surveys were conducted among Indian Americans, age 60 and over, recruited from Indian cultural centers in Northern California. The participants were first asked questions about hospice care. They were then given a summary explanation of hospice care and later asked about their attitudes toward hospice care. Data were analyzed using descriptive and bivariate analyses.
RESULTS: Surveys were completed by 82 participants. Findings revealed that 42.5% of respondents had an advance directive and 57.1% had named a health care proxy. Only 10% of respondents had known someone on hospice care and 10.4% correctly answered 4-5 of the knowledge questions. After being informed about hospice care, 69.6% of participants agreed that if a family member was extremely ill, they would consider enrolling him/her in hospice.
CONCLUSIONS: This study's results present a need for greater education about hospice services among older Asian Indians. Health practitioners should remain cognizant of potential misconceptions of hospice and cultural barriers that Asian Indians may have toward hospice care, so they can tailor conversations accordingly.
BACKGROUND: US hospitals typically provide a set of code status options that includes Full Code and Do Not Resuscitate (DNR) but often includes additional options. Although US hospitals differ in the design of code status options, this variation and its impacts have not been empirically studied.
DESIGN AND METHODS: Multi-institutional qualitative study at 7 US hospitals selected for variability in geographical location, type of institution and design of code status options. We triangulated across three data sources (policy documents, code status ordering menus and in-depth physician interviews) to characterise the code status options available at each hospital. Using inductive qualitative methods, we investigated design differences in hospital code status options and the perceived impacts of these differences.
RESULTS: The code status options at each hospital varied widely with regard to the number of code status options, the names and definitions of code status options, and the formatting and capabilities of code status ordering menus. DNR orders were named and defined differently at each hospital studied. We identified five key design characteristics that impact the function of a code status order. Each hospital's code status options were unique with respect to these characteristics, indicating that code status plays differing roles in each hospital. Physician participants perceived that the design of code status options shapes communication and decision-making practices about resuscitation and life-sustaining treatments, especially at the end of life. We identified four potential mechanisms through which this may occur: framing conversations, prompting decisions, shaping inferences and creating categories.
CONCLUSIONS: There are substantive differences in the design of hospital code status options that may contribute to known variability in end-of-life care and treatment intensity among US hospitals. Our framework can be used to design hospital code status options or evaluate their function.
Context: Managing activities of daily living is important to people with advanced cancer or chronic obstructive pulmonary disease (COPD). Understanding disability in activities of daily living may inform service planning.
Objective: To identify the prevalence of disability in activities of daily living, associations and change over time, in older people with advanced cancer or COPD.
Methods: Secondary analysis of International Access, Rights and Empowerment (IARE) studies in adults aged =65 years with advanced disease in the UK, Ireland, and USA. Cross-sectional (IARE I & II) and longitudinal (IARE II, 3 timepoints over 6-months) data. Measures: disability in activities of daily living (Barthel Index), symptom severity (Palliative Outcome Scale), assistive device use (self-reported). Logistic regression was used to identify relationships between disability and age, sex, living alone, diagnosis, and symptom burden; Visual Graphical Analysis explores individual disability trajectories.
Results: 159 participants were included (140 cancer, 19 COPD). 65% had difficulty climbing stairs, 48% bathing, 39% dressing, 36% mobilising. Increased disability was independently associated with increased symptom burden (odds ratio [OR], 1.08 [95% CI:1.02-1.15], p=0.01) and walking unaided (z=2.35, p=0.02), but not with primary diagnosis (z=-0.47, p=0.64). Disability generally increased over time but with wide inter-individual variation.
Conclusion: Disability in activities of daily living in advanced cancer or COPD is common, associated with increased symptom burden, and may be attenuated by use of assistive devices. Individual disability trajectories vary widely, with diverse disability profiles. Services should include rehabilitative interventions, guided by disability in individual activities of daily living.
BACKGROUND: Moral distress is a state in which a clinician cannot act in accordance with their ethical beliefs because of external constraints. Physician trainees, who work within rigid hierarchies and who lack clinical experience, are particularly vulnerable to moral distress. We examined the dynamics of physician trainee moral distress in end-of-life care by comparing experiences in two different national cultures and healthcare systems.
OBJECTIVE: We investigated cultural factors in the US and the UK that may produce moral distress within their respective healthcare systems, as well as how these factors shape experiences of moral distress among physician trainees.
DESIGN: Semi-structured in-depth qualitative interviews about experiences of end-of-life care and moral distress.
PARTICIPANTS: Sixteen internal medicine residents in the US and fourteen junior doctors in the UK.
APPROACH: The work was analyzed using thematic analysis.
KEY RESULTS: Some drivers of moral distress were similar among US and UK trainees, including delivery of potentially inappropriate treatments, a poorly defined care trajectory, and involvement of multiple teams creating different care expectations. For UK trainees, healthcare team hierarchy was common, whereas for US trainees, pressure from families, a lack of guidelines for withholding inappropriate treatments, and distress around physically harming patients were frequently cited. US trainees described how patient autonomy and a fear of lawsuits contributed to moral distress, whereas UK trainees described how societal expectations around resource allocation mitigated it.
CONCLUSION: This research highlights how the differing experiences of moral distress among US and UK physician trainees are influenced by their countries' healthcare cultures. This research illustrates how experiences of moral distress reflect the broader culture in which it occurs and suggests how trainees may be particularly vulnerable to it. Clinicians and healthcare leaders in both countries can learn from each other about policies and practices that might decrease the moral distress trainees experience.
BACKGROUND: It is essential to high-quality medical care that life-sustaining treatment orders match the current, values-based preferences of patients or their surrogate decision-makers. It is unknown whether concordance between orders and current preferences is higher when a POLST form is used compared to standard documentation practices.
OBJECTIVE: To assess concordance between existing orders and current preferences for nursing facility residents with and without POLST forms.
DESIGN: Chart review and interviews.
SETTING: Forty Indiana nursing facilities (29 where POLST is used and 11 where POLST is not in use).
PARTICIPANTS: One hundred sixty-one residents able to provide consent and 197 surrogate decision-makers of incapacitated residents with and without POLST forms.
MAIN MEASUREMENTS: Concordance was measured by comparing life-sustaining treatment orders in the medical record (e.g., orders about resuscitation, intubation, and hospitalization) with current preferences. Concordance was analyzed using population-averaged binary logistic regression. Inverse probability weighting techniques were used to account for non-response. We hypothesized that concordance would be higher in residents with POLST (n = 275) in comparison to residents without POLST (n = 83).
KEY RESULTS: Concordance was higher for residents with POLST than without POLST (59.3% versus 34.9%). In a model adjusted for resident, surrogate, and facility characteristics, the odds were 3.05 times higher that residents with POLST had orders for life-sustaining treatment match current preferences in comparison to residents without POLST (OR 3.05 95% CI 1.67-5.58, p < 0.001). No other variables were significantly associated with concordance.
CONCLUSIONS: Nursing facility residents with POLST are significantly more likely than residents without POLST to have concordance between orders in their medical records and current preferences for life-sustaining treatments, increasing the likelihood that their treatment preferences will be known and honored. However, findings indicate further systems change and clinical training are needed to improve POLST concordance.
Background: Phase 1 clinical trials remain vital for oncology care. Patients on these trials require supportive care for quality-of-life (QOL) concerns.
Objective: To test a Palliative Care Intervention (PCI) for patients with solid tumors enrolled in Phase I therapeutic trials with a priori hypothesis that psychological distress, QOL, satisfaction, symptoms, and resource utilization would be improved in the PCI group.
Design: This unblinded randomized trial compared the PCI with usual care in patients accrued to Phase I Clinical Trials. Subjects (n = 479) were followed for 24 weeks, with 12 weeks as the primary outcome.
Setting: Two Comprehensive Cancer Centers in the United States.
Subjects: A consecutive sample, 21 years or older, English fluency, with solid tumors initiating a Phase 1 trial. Measurements: Psychological Distress (Distress Thermometer), QOL total and subscales (FACT-G), satisfaction (FAM-CARE), survival, and resource utilization (chart audit).
Results: PCI subjects showed improved Psychological Distress (-0.47, p = 0.015) and Emotional Well-Being (0.81, p = 0.045), with differences on variables of QOL and distress between sites. High rates of symptom-management admissions (41.3%) and low rates of Advance Directive completion (39.0%), and hospice enrollment (30.7%), despite a median survival in both groups of 10.1 months from initiating a Phase 1 study.
Conclusions: A nurse-delivered PCI can improve some QOL outcomes and distress for patients participating in Phase 1 trials. Greater integration of PC is needed to provide quality care to these patients and to support transitions from treatment to supportive care, especially at the end of life.
INTRODUCTION: Cancer prevalence (people alive on a certain date in a population who previously had a cancer diagnosis) is expected to increase in the United States and Europe due to improvements in survival and population aging. Examination of prevalence by phase of care allows us to identify subgroups of patients according to their care trajectories, thus allowing us to improve health care planning, resource allocation, and calculation of costs.
METHODS: A new method to estimate prevalence by phase of care using grouped data is illustrated. Prevalence is divided into 3 mutually exclusive phases: initial, continuing, and end-of-life. An application to US and Italian data is applied to prevalent cases diagnosed with colon-rectum, stomach, lung, or breast cancer.
RESULTS: The distribution of phase of care prevalence estimated by cancer type and sex and results from the two datasets are very similar. Most survivors are in the continuing phase; the end-of-life phase is larger for cancers with worse prognosis. All phases prevalence is generally higher in the Italian than in the US dataset, except for lung cancer in women, where prevalence proportion in the Italian dataset is 30% lower than in the United States.
DISCUSSION: Incidence, survival, and population age structure are the main determinants of prevalence and they can affect differences in all phases of prevalence, as well as in discrete phases. Incidence is the most influential determinant. Ours is the first study that compares prevalence by phase of care between two populations in Italy and the United States. Despite great differences in health care management in the two countries, we found extremely similar distribution of survivors by phase of care for most cancer sites under study.
BACKGROUND: Individuals with advanced cancer and their families have negative end-of-life experiences when the care they receive is not aligned with their values and preferences.
OBJECTIVE: To obtain in-depth information on how patients with advanced cancer and the oncology and palliative care (PC) clinicians who care for them discuss goals of care (GoC).
DESIGN: The research team conducted in-depth interviews and qualitative data analysis using open coding to identify how perspectives on GoC discussions vary by stage of illness, and experience with PC teams.
SETTING/SUBJECTS: Twenty-five patients and 25 oncology and PC team members in a large multi-specialty group in Northern California.
RESULTS: At the time of diagnosis participants described having establishing GoC conversations about understanding the goal of treatment (e.g. to extend life), and prognosis ("How much time do I have?"). Patients whose disease progressed or pain/symptoms increased reported changing GoC conversations about stopping treatment, introducing hospice care, prognostic awareness, quality of life, advance care planning, and end-of-life planning. Participants believed in the fluidity of prognosis and preferences for prognostic communication varied. Patients appreciated how PC teams facilitated changing GoC conversations. Timing was challenging; some patients desired earlier conversations and PC involvement, others wanted to wait until things were "going downhill."
CONCLUSION: Patients and clinical teams acknowledged the complexity and importance of GoC conversations, and that PC teams enhanced conversations. The frequency, quality, and content of GoC conversations were shaped by patient receptivity, stage of illness, clinician attitudes and predispositions toward PC, and early integration of PC.
BACKGROUND: National oncology guidelines recommend early integration of palliative care for patients with cancer. However, drivers for this integration remain understudied. Understanding illness concerns at the time of cancer treatment may help facilitate integration earlier in the cancer illness trajectory.
OBJECTIVE: To describe cancer patients' concerns while undergoing cancer treatment, and determine if concerns differ among African Americans and Whites.
METHODS: A 1-time, semi-structured qualitative interview was conducted with a purposive subsample of cancer patients participating in a larger study of illness concerns. Eligible patients were undergoing cancer treatments and had self-reported moderate-to-severe pain in the last week. Analysis encompassed a qualitative descriptive approach with inductive thematic analysis.
RESULTS: Participants (16 African American, 16 White) had a median age of 53 and were predominantly females (72%) with stage III/IV cancer (53%). Illness concerns were largely consistent across participants and converged on 3 themes: symptom experience (pain, options to manage pain), cancer care delivery (communication, care coordination and care transitions), and practical concerns (access to community and health system resources, financial toxicity).
CONCLUSIONS: The findings extend the scope of factors that could be utilized to integrate palliative care earlier in the cancer illness trajectory, moving beyond the symptoms- and prognosis-based triggers that typify current referrals to also consider diverse logistical concerns. Using this larger set of concerns aids anticipatory risk mitigation and planning (e.g. care transitions, financial toxicity), helps patients receive a larger complement of support services, and builds cancer patients' capacity toward a more patient-centered treatment and care experience.
Objective: Antibiotic use at the end of life (EoL) may introduce physiological as well as psychological stress and be incongruent with patients’ goals of care. Advance care planning (ACP) related to antibiotic use at the EoL helps improve goal-concordant care. Many nursing home (NH) residents are seriously ill. Therefore, we aimed to examine whether state and regional ACP initiatives play a role in the presence of “do not administer antibiotics” orders for NH residents at the EoL.
Methods: We surveyed a random, representative national sample of 810 U.S. NHs (weighted n = 13,983). The NH survey included items on “do not administer antibiotics” orders in place and participation in infection prevention collaboratives. The survey was linked to state Physician Orders for Life-Sustaining Treatment (POLST) adoption status and resident, facility, and county characteristics data. We conducted multivariable regression models with state fixed effects, stratified by state POLST designation.
Results: NHs in mature POLST states reported higher rates of “do not administer antibiotics” orders compared to developing POLST states (10.1% vs. 4.6%, respectively, p = 0.004). In mature POLST states, participation in regional collaboratives and smaller NH facilities (<100 beds) were associated with having “do not administer antibiotics” orders for seriously ill residents (ß = 0.11, p = 0.006 and ß = 0.12, p = 0.003, respectively).
Discussion: NHs in states with mature POLST adoption that participated in infection control collaboratives were more likely to have “do not administer antibiotics” orders. State ACP initiatives combined with regional antibiotic stewardship initiatives may improve inappropriate antibiotic use at the EoL for NH residents.
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.