Cultural Values Influence on Rural Family Caregivers' Decision-Making for Ill Older Adult Loved Ones.

CONTEXT: Rural older adult Americans receive more intense treatment at end of life. Studies indicate that those who participate in goals of care conversations receive care more concordant with their values. Yet, rates of documented goals of care discussions are lower in rural and Black communities. Although multi-factorial, the role that rural family caregivers (FCGs) play in decision-making for ill loved ones is understudied. OBJECTIVE: This study aimed to explore rural FCGs cultural values, beliefs, and attitudes about serious illness and treatment decision-making and to understand how these factors influence their decision-making around goals of care for their family members. METHODS: This is an embedded qualitative study within a tele-palliative care consult randomized trial that the PEN-3 theoretical model guided. Semi-structured interviews were conducted with FCGs who had completed study participation. Thematic analysis was used to analyze the data. RESULTS: Twelve rural FCGs center their decisions around core values, and the decision-making experience was supported by faith. A model of how the key themes and subthemes interact around the central space of supporting the seriously ill loved to demonstrate the complexity of caregiving when race and rurality intersect is presented. CONCLUSION: This study is a foundational step in understanding how rural FCGs beliefs and values influence decision-making. We recommend incorporating those constructs into the development of culturally responsive decision-support interventions.

Honoring What We Say We Do: Developing Real-World Tools for Routine Family Caregiver Assessment and Support in Outpatient Palliative Care.

Background: Family caregivers are essential to the care of patients with serious illness and supporting caregivers alongside patients is a core tenet of palliative care. While there is increasing recognition of the need to support family caregivers, there are limited resources to assess and support their needs in a systematic way in outpatient palliative care practice. Objectives: The aim of this study is to develop an approach to conducting assessments of routine needs and support of family caregivers in outpatient palliative care practice using a quality improvement framework. Setting: Seven, interdisciplinary, outpatient palliative care teams in California collaborated in this study. Measurements: Family caregivers were surveyed about levels of distress and support using a 10-point scale and asked about specific areas of need for support. Usefulness of a supportive caregiver resource was also measured on a 10-point scale, in addition to qualitative assessment of clinician satisfaction and feasibility of routine caregiver assessment and support. Results: Seven hundred thirty-six caregiver needs assessments were conducted and 44 supportive tool kits were distributed. A majority of family caregivers reported moderate or severe distress related to caregiving (score ≥4 on a 10-point scale). The most common sources of distress included emotional distress, worry caregiving was negatively impacting their own health, and planning for the future. Most caregivers reported feeling moderately or very well supported, most commonly by family, friends, and faith/spirituality. Caregivers rated the supportive tool kit an 8.4 on a 10-point usefulness scale and 92% would recommend it to others. Conclusions: We successfully developed and piloted practical clinical tools for routine family caregiver screening and support.

Unmet needs and health-related quality of life of dementia family caregivers transitioning from home to long-term care: A scoping review.

This scoping review is to identify experiences, unmet needs, and health-related quality of life (HRQoL) of family caregivers transitioning their care recipients with dementia into long-term care (LTC). The methodological framework of Arksey and O'Malley guided the review. Themes from nineteen selected studies were organized around three categories. First, caregiver experiences during LTC placement featured challenges around placement decision-making and distress and changes in relationships and responsibilities. Second, unmet needs of caregivers were desired emotional support and information about transitions. Finally, caregivers' HRQoL varies around transition. Family caregivers experience unique challenges and can have unmet needs during the LTC placement of their care recipients with dementia. Findings suggest the need for interventions that teach skills, care planning, assistance with conflict resolution, communication training, and guidance finding services and resources.

Examining Adherence and Dose Effect of an Early Palliative Care Intervention for Advanced Heart Failure Patients.

CONTEXT: Research priority guidelines highlight the need for examining the "dose" components of palliative care (PC) interventions, such as intervention adherence and completion rates, that contribute to optimal outcomes. OBJECTIVES: Examine the "dose" effect of PC intervention completion vs. noncompletion on quality of life (QoL) and healthcare use in patients with advanced heart failure (HF) over 32 weeks. METHODS: Secondary analysis of the ENABLE CHF-PC intervention trial for patients with New York Heart Association (NYHA) Class III/IV HF. "Completers" defined as completing a single, in-person outpatient palliative care consultation (OPCC) plus 6 weekly, PC nurse coach-led telehealth sessions. "Non-completers" were defined as either not attending the OPCC or completing <6 telehealth sessions. Outcome variables were QoL and healthcare resource use (hospital days; emergency department visits). Mixed models were used to model dose effects for "completers" vs "noncompleters" over 32 weeks. RESULTS: Of 208 intervention group participants, 81 (38.9%) were classified as "completers" with a mean age of 64.6 years; 72.8% were urban-dwelling; 92.5% had NYHA Class III HF. 'Completers' vs. "non-completers"" groups were well-balanced at baseline; however "noncompleters" did report higher anxiety (6.0 vs 7.0, P < 0.05, d = 0.28). Moderate, clinically significant, improved QoL differences were found at 16 weeks in "completers" vs. "non-completers" (between-group difference: -9.71 (3.18), d = 0.47, P = 0.002) but not healthcare use. CONCLUSION: Higher intervention completion rates of an early PC intervention was associated with QoL improvements in patients with advanced HF. Future work should focus on identifying the most efficacious "dose" of intervention components and increasing adherence to them. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02505425.

A Qualitative Study of Pulmonary and Palliative Care Clinician Perspectives on Early Palliative Care in Chronic Obstructive Pulmonary Disease.

Background: Guidelines recommend that pulmonary clinicians involve palliative care in chronic obstructive pulmonary disease (COPD); however, integration before advanced stage, that is, early palliative care, is rare. Objective: To explore and compare pulmonary and palliative care clinician perspectives on barriers, facilitators, and potential referral criteria for early palliative care in COPD. Design: Qualitative descriptive formative evaluation study. Setting/Subjects: Pulmonary and palliative care clinicians at a tertiary academic medical center. Measurements: Transcribed interviews were thematically analyzed by specialty to identify within- and across-specialty perspectives on barriers, facilitators, and referral criteria. Results: Twelve clinicians (n = 6 pulmonary, n = 6 palliative care) participated. Clinicians from both specialties agreed that early palliative care could add value to disease-focused COPD care. Perspectives on many barriers and facilitators were shared between specialties along broad educational, clinical, and operational categories. Pulmonary and palliative care clinicians shared concerns about the misconception that palliative care was synonymous to end-of-life care. Pulmonologists were particularly concerned about the potential risks of opioids and benzodiazepines in COPD. Both specialties stressed the need for clearly defined roles, consensus referral criteria, and novel delivery models. Although no single referral criterion was discussed by all, frequent hospitalizations and emotional symptoms were raised by most across disciplines. Multimorbidity and poor prognosis were discussed only by palliative care clinicians, whereas medication adherence was discussed only by pulmonary clinicians. Conclusions: Pulmonary and palliative care clinicians supported early palliative care in COPD. Continued needs include addressing pulmonologists' misconceptions of palliative care, establishing consensus referral criteria, and implementing novel early palliative care models.

Comparing Specialty and Primary Palliative Care Interventions: Analysis of a Systematic Review.

Background: Investigators have tested interventions delivered by specialty palliative care (SPC) clinicians, or by clinicians without palliative care specialization (primary palliative care, PPC). Objective: To compare the characteristics and outcomes of randomized clinical trials (RCTs) of SPC and PPC interventions. Design: Systematic review secondary analysis. Setting/Subjects: RCTs of palliative care interventions. Measurements: Interventions were classified SPC if delivered by palliative care board-certified or subspecialty trained clinicians, or those with extensive clinical experience; all others were PPC. We abstracted data for each intervention: delivery setting, delivery clinicians, outcomes measured, trial results, and Cochrane's Risk of Bias. We conducted narrative synthesis for quality of life, symptom burden, and survival. Results: Of 43 RCTs, 27 tested SPC and 16 tested PPC interventions. SPC interventions were more comprehensive (4.2 elements of palliative care vs. 3.1 in PPC, p = 0.02). SPC interventions were delivered in inpatient (44%) or outpatient settings (52%) by specialty physicians (44%) and nurses (44%); PPC interventions were delivered in inpatient (38%) and home settings (38%) by nurses (75%). PPC trials were more often of high risk of bias than SPC trials. Improvements were demonstrated on quality of life by SPC and PPC trials and on physical symptoms by SPC trials. Conclusions: Compared to PPC, SPC interventions were more comprehensive, were more often delivered in clinical settings, and demonstrated stronger evidence for improving physical symptoms. In the face of SPC workforce limitations, PPC interventions should be tested in more trials with low risk of bias, and may effectively meet some palliative care needs.

Top Ten Tips Palliative Care Clinicians Should Know About Telepalliative Care.

The field of telehealth is rapidly growing and evolving across medical specialties and health care settings. While additional data are needed, telepalliative care (the application of telehealth technologies to palliative care) may help address important challenges inherent to our specialty, such as geography and clinician staffing; the burden of traveling to brick-and-mortar clinics for patients who are symptomatic and/or functionally limited; and the timely assessment and management of symptoms. Telepalliative care can take many forms, including, but not limited to, video visits between clinicians and patients, smartphone applications to promote caregiver well-being, and remote patient symptom-monitoring programs. This article, created by experts in telehealth and palliative care, provides a review of the current evidence for telepalliative care and potential applications and practical tips for using the technology.

Disparities in Hospice Utilization for Older Cancer Patients Living in the Deep South.

CONTEXT: Hospice utilization is an end-of-life quality indicator. The Deep South has known disparities in palliative care that may affect hospice utilization. OBJECTIVES: The objective of this study was to evaluate the association among Deep South patient and hospital characteristics and hospice utilization. METHODS: This retrospective cohort study evaluated patient and hospital characteristics associated with hospice among Medicare cancer decedents aged ≥65 years in 12 southeastern cancer centers between 2012 and 2015. We examined patient-level characteristics (age, race, gender, cancer type, and received patient navigation) and hospital-level characteristics (board-certified palliative physician, inpatient palliative care beds, and hospice ownership). Outcomes included hospice (within 90 vs. three days of death). Relative risks (RRs) and 95% CIs evaluated the association between patient- and hospital-level characteristics and hospice outcomes using generalized log-linear models with Poisson distribution and robust variance estimates. RESULTS: Of 12,725 cancer decedents, 4142 (33%) did not utilize hospice. "No hospice" was associated with nonwhite (RR 1.24, 95% CI 1.17-1.32) and nonnavigated patients (RR 1.17, 95% CI 1.10-1.25), and those at a hospital with inpatient palliative care beds (RR 1.15, 95% CI 1.10-1.21). "Late hospice" (20%; n = 1458) was associated with being male (RR 1.31, 95% CI 1.19-1.44) and seen at a hospital without inpatient palliative care beds (RR 0.82, 95% CI 0.75-0.90). CONCLUSIONS: Hospice utilization differed by patient and hospital characteristics. Patients who were nonwhite, and nonnavigated, and hospitals with inpatient palliative care beds, were associated with no hospice. Research should focus on ways to improve hospice utilization in Deep South older cancer patients.