Palliative Care Research and Clinical Practice Priorities in the United States as Identified by an Interdisciplinary Modified Delphi Approach.

Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services.

The Association of Unmet Palliative Care Needs and Physical Frailty With Clinical Outcomes: A Prospective Study of Adults With Heart Failure.

BACKGROUND: People with heart failure, particularly those who are physically frail, experience complex needs that can be addressed by palliative care (PC). However, we have a limited understanding of how the intersection of unmet PC needs and physical frailty contributes to health-related quality of life (HRQOL) and risk for hospitalization or mortality. OBJECTIVE: In this study, we sought to examine the association of unmet PC needs and physical frailty with clinical outcomes (baseline HRQOL and hospitalizations or mortality at 6 months). METHODS: We recruited a convenience sample of community-dwelling persons with heart failure from an urban hospital system who were older than 50 years and hospitalized in the last year. We measured physical frailty using the FRAIL scale (nonfrail, 0-2; frail, 3-5), PC needs using the Integrated Palliative Outcome Scale (range, 0-58; higher scores indicating higher needs), and HRQOL using the Kansas City Cardiomyopathy Questionnaire (range, 0-100; higher scores indicate higher HRQOL). We performed multivariable linear regression to test the relationships between physical frailty, PC needs, and HRQOL, and multivariable logistic regression for associations with all-cause 6-month hospitalization or mortality. We also performed an exploratory analysis of 4 PC needs/frailty groups (high PC needs/frail, high PC needs/nonfrail, low PC needs/frail, low PC needs/nonfrail) with outcomes. RESULTS: In our overall sample (n = 298), mean (SD) age was 68 (9.8) years, 37% were women (n = 108), 28% identified as Black/African American (n = 84), and 65% had heart failure with preserved ejection fraction (n = 194). Mean PC needs score was 19.7, and frail participants (n = 130, 44%) had a significantly higher mean PC needs score than nonfrail participants (P < .001). Those with higher PC needs (Integrated Palliative Care Outcome Scale ≥ 20) had significantly worse HRQOL (P < .001) and increased odds of hospitalization or mortality (odds ratio, 2.5; P < .01) compared with those with lower PC needs, adjusting for covariates. Physically frail participants had significantly worse HRQOL (P < .001) and higher odds of hospitalization or mortality at 6 months (odds ratio, 2.6; P < .01) than nonfrail participants, adjusting for covariates. In an exploratory analysis, physically frail participants with high PC needs had the lowest HRQOL score, with an average score of 28.6 points lower (P < .001) and 4.6 times higher odds of hospitalization or mortality (95% confidence interval, 2.03-10.43; P < .001) than low-needs/nonfrail participants. CONCLUSION: Higher unmet PC needs and physical frailty, separately and in combination, were associated with lower HRQOL and higher odds of hospitalization or mortality. Self-reported PC needs and physical frailty assessment in clinical settings may improve identification of patients at the highest risk for poor HRQOL and hospitalization or mortality amenable to PC intervention.

Relationship Status and Quality Are Associated With Perceived Benefits of Caregiving for People With Heart Failure.

BACKGROUND: "Benefit finding" is a strengths-based strategy for coping with medical illness that may be particularly useful for caregivers of people with heart failure given the highly fluctuating disease course. OBJECTIVE: The aim of this study was to investigate benefit finding's association with the caregiver-care recipient relationship, depression, and burden at baseline and longitudinally. METHODS: This is a longitudinal observational study of caregivers' benefit finding, relationship quality, depression, and burden. Correlation and multiple regression analyses identify baseline associations and predictors of 12-month change in benefit finding. RESULTS: At baseline (n = 100; median, 60 years [interquartile range, 46-69]; 81% female, 70% partner/spouse), increased benefit finding correlated with higher relationship quality (r = 0.53; 95% confidence interval [CI], 0.38-0.67), lower depression (r = -0.33; 95% CI, -0.49 to -0.14), and lower burden (r = -0.31; 95% CI, -0.47 to -0.11). Twelve-month change in benefit finding was predicted by change in relationship quality (ß = 7.12; 95% CI, 0.62-13.61) but not depression or burden. CONCLUSIONS: Relationship quality and benefit finding changed together over time. Interventions strengthening the caregiver-care recipient bond may be especially impactful for heart failure caregivers.

Promising Impact of Telenovela Intervention for Caregivers of Hospice Patients: A Pilot Study.

BACKGROUND: Hospice family caregivers (HFCGs) support the needs of their loved ones but are at risk of developing distress and anxiety. NOVELA is a four-chapter telenovela-style educational video to support topics related to hospice caregiving. Telehealth visits are scheduled in 4 weekly sessions consisting of a chapter and subsequent discussion with an interventionist. This feasibility pilot study tested NOVELA's effect to change HFCGs' outcomes, session and outcome measure completion (defined a priori as >70%). METHODS: This is a single-group pretest-posttest study of HFCGs of care recipients with PPS score >20% from 3 hospices in the U.S. Mid-Atlantic region. At baseline and at final posttest, participants completed a web-based survey assessing 3 outcomes: anxiety, self-efficacy, and satisfaction with intervention. Descriptive, t-test, and chi-square statistics were computed. RESULTS: Participants in our study (N = 59) were mainly collage educated, White, female, adult children of home-bound people with a non-cancer diagnosis. Outcomes changed in the expected direction (P > .05) with higher self-efficacy (Cohen's d = -.08 [95% CI -.4 to .2) and lower anxiety (Cohen's d = .2 [95% CI -.1 to .5]) scores from final to baseline, 86% of HFCGs were satisfied or very satisfied with NOVELA, session (33/59) and outcome measure (43/59) completion averaged 68%. CONCLUSION: Encouraging trends in NOVELA's estimation of effect suggests that NOVELA may buffer stressful aspects of hospice caregiving. However, further refinement of NOVELA is needed. Supporting HFCGs through supportive educational interventions may reduce distress and anxiety with broad implications for quality improvement.

Identification of Fatigue Subtypes and Their Correlates in Prevalent Heart Failure: A Secondary Analysis of the Atherosclerosis Risk in Communities Study.

BACKGROUND: Among patients with heart failure (HF), fatigue is common and linked to quality of life and functional status. Fatigue is hypothesized to manifest as multiple types, with general and exertional components. Unique subtypes of fatigue in HF may require differential assessment and treatment to improve outcomes. We conducted this study to identify fatigue subtypes in persons with prevalent HF in the ARIC study (Atherosclerosis Risk in Communities) and describe the distribution of characteristics across subtypes. METHODS: We performed a cross-sectional analysis of 1065 participants with prevalent HF at ARIC visit 5 (2011-2013). We measured exertional fatigue using the Modified Medical Research Council Breathlessness scale and general fatigue using the Patient Reported Outcomes Measurement Information System fatigue scale. We used latent class analysis to identify subtypes of fatigue. Number of classes was determined using model fit statistics, and classes were interpreted and assigned fatigue severity rating based on the conditional probability of endorsing survey items given class. We compared characteristics across classes using multinomial regression. RESULTS: Overall, participants were 54% female and 38% Black with a mean age of 77. We identified 4 latent classes (fatigue subtypes): (1) high general/high exertional fatigue (18%), (2) high general/low exertional fatigue (27%), (3) moderate general/moderate exertional fatigue (20%), and (4) low/no general and exertional fatigue (35%). Female sex, Black race, lower education level, higher body mass index, increased depressive symptoms, and higher prevalence of diabetes were associated with higher levels of general and exertional fatigue. CONCLUSIONS: We identified unique subtypes of fatigue in patients with HF who have not been previously described. Within subtype, general and exertional fatigue were mostly concordant in severity, and exertional fatigue only occurred in conjunction with general fatigue, not alone. Further understanding these fatigue types and their relationships to outcomes may enhance our understanding of the symptom experience and inform prognostication and secondary prevention efforts for persons with HF.

Acceptability and Feasibility of a Pain and Depressive Symptoms Management Intervention in Middle-Aged and Older African American Women.

Background and Objectives: The intersection of race, gender, and age puts older African American women at high risk of experiencing comorbid pain and depressive symptoms. The purpose of this study was to assess the feasibility and acceptability of a 12-week behavioral activation intervention to target self-selected goals related to pain and depressive symptoms in middle-aged and older African American women. Research Design and Methods: This randomized waitlist control study included 34 self-identified African American women, 50 years of age or older, with moderate-to-severe chronic pain and depressive symptoms. The intervention consisted of 8 in-person or virtual 1-hour visits with a nurse. Follow-up acceptability assessments were conducted with 10 participants. Results: The average age of the participants was 64.8 (standard deviation [SD] 10.5). They reported an average pain intensity score of 7.0 (SD 1.9) out of 10 and an average Patient Health Questionnaire-9 depressive symptoms score of 11.9 (SD 4.0) at baseline. Of the 34 participants who consented, 28 (82.4%) women started the intervention and 23 (82.1%) completed the intervention. Participants described the study as useful and beneficial. Participants recommended including a group component in future iterations. Effect sizes at 12 weeks were -0.95 for depressive symptoms indicating a substantial decrease in experienced depressive symptoms, but pain intensity was virtually unchanged (+0.09). Discussion and Implications: The findings of this study demonstrate that the intervention is acceptable among middle-aged and older African American women and their personal goals were met. Including a group component and identifying effective ways to decrease attrition rates will be key in the next steps of development for this intervention. It is crucial to provide tailored, nonpharmacological approaches to pain, and depression symptom management in older adult populations who experience inequities in pain and mental health outcomes. This study emphasizes the importance of participant-driven goal-setting interventions.

Feasibility of a Multi-Component Strengths-Building Intervention for Caregivers of Persons With Heart Failure.

Caregivers of persons with heart failure (HF) navigate complex care plans, yet support strategies often focus solely on meeting the needs of patients. We conducted a randomized waitlist control trial (N = 38) to test the feasibility and gauge initial effect size of the Caregiver Support intervention on quality of life, caregiver burden, and self-efficacy among HF caregivers. The intervention includes up to five remote, nurse-facilitated sessions. Components address: holistic caregiver assessment, life purpose, action planning, resources, and future planning. Caregivers were 93.3% female, 60% White, and 63.3% spouses. Average age was 59.4. Participants who completed the intervention reported high satisfaction and acceptability of activities. Between-group effect sizes at 16 and 32 weeks suggest improvement in quality of life (mental health) (.88; 1.08), caregiver burden (.31; .37), and self-efficacy (.63; .74). Caregivers found Caregiver Support acceptable and feasible. Findings contribute evidence that this intervention can enhance caregiver outcomes. Clinicaltrials.gov Identifier NCT04090749.

The Context of Caregiving in Heart Failure: A Dyadic, Mixed Methods Analysis.

BACKGROUND: Caregiving for persons with heart failure (HF) varies based on the individual, family, and home contexts of the dyad, yet the dyadic context of HF caregiving is poorly understood. OBJECTIVE: The aim of this study was to explore dyadic perspectives on the context of caregiving for persons with HF. METHODS: Family caregivers and persons with HF completed surveys and semistructured interviews. Investigators also photographed caregiving areas to complement home environment data. Descriptive qualitative analysis resulted in 7 contextual domains, and each domain was rated as strength, need, or neutral. We grouped dyads by number of challenging domains of context, categorizing dyads as high (≥3 domains), moderate (1-2 domains), or minimal (0 domains) needs. Quantitative instruments included the 36-item Short Form Health Survey, ENRICHD Social Support, HF Symptom Severity, and Zarit Burden Interview. We applied the average score of each quantitative measure to the groups derived from the qualitative analysis to integrate data in a joint display. RESULTS: The most common strength was the dyadic relationship, and the most challenging domain was caregiving intensity. Every dyad had at least 2 domains of strengths. Of 12 dyads, high-needs dyads (n = 3) had the worst average score for 7 of 10 instruments including caregiver and patient factors. The moderate-needs dyads (n = 6) experienced the lowest caregiver social support and mental health, and the highest burden. CONCLUSION: Strengths and needs were evident in all patient-caregiver dyads with important distinctions in levels of need based on assessment of multiple contextual domains. Comprehensive dyadic and home assessments may improve understanding of unmet needs and improve intervention tailoring.

Analysis of action planning, achievement and life purpose statements in an intervention to support caregivers of persons with heart failure.

BACKGROUND: Caregivers of persons living with heart failure (HF) experience uncertainty related to heart failure trajectory and caregiving demands. Caregiver Support is a nurse-led intervention consisting of a well-being assessment, development of a life purpose statement, and action planning related to self-care and support for caregivers. OBJECTIVES: The goal of this study was to describe the caregivers' action plans, action plan achievement and life purpose statements. METHODS: We used inductive content analysis to code life purpose statements and action plans by 2 coders. Descriptive statistics were used to describe the average number of action plans set per caregiver, the average number of themes coded per action plan and life purpose statement, and the status of goal achievement (i.e., by thematic domain, subdomains). Goal achievement was defined categorically: Achieved, not achieved, and not assessed. The achievement rate was calculated as the proportion of achieved action plans out of the total number of assessed action plans. RESULTS: The sample (n = 22) was predominantly women, spousal caregivers, and an average age of 62±14.2 years. Thirty-six percent of caregivers were Black and 41% reported financial strain. Action plans comprised five categories: personal health and well-being, social support, home environment, instrumental support and other. The most common topics of life purpose statements were faith and self-care/actualization. Of 85 action plans, 69 were assessed and 66.7% were achieved. CONCLUSIONS: These findings highlight the diversity of values and needs of caregivers and provides insights for additional person-centered support.

TIMS: A Mixed Methods Evaluation of the Impact of a Novel Chaplain Facilitated Recorded Interview Placed in the Medical Chart for the Medical Staff in an ICU During the COVID-19 Pandemic.

The purpose of this study is to examine how a novel intervention known as TIMS, "This is My Story," impacted clinicians caring for patients during the COVID-19 pandemic in the medical intensive care unit (MICU) at the Johns Hopkins Hospital. An eight-question survey was administered to MICU staff on their experience with TIMS files for pre- and post-listening reflections. Qualitative interviews were conducted with 17 staff members who prospectively agreed to participate. A total of 97 pre-listening and 88 post-listening questionnaires were completed. Responses indicated that the audio recording was appropriate to discover more about the patient beyond the immediately observable and useful (98%), "considerably" increased staff empathy for the patient (74%), and thought it would "some" or "considerably" improve subsequent interactions with the patient's loved ones (99%). The qualitative analysis revealed that medical staff found the audio format easy to use and helpful in humanizing patients in their clinical practice. The study demonstrates that TIMS audio files are an important addition to the electronic medical record, enabling clinicians to practice with greater awareness of the patient's context and increased empathy for patients and families.

Providers' Perceptions of Neurology Care Delivered Through Telemedicine Technology.

Background: The COVID-19 pandemic and subsequent acceleration of telemedicine usage allowed many neurologists to trial telemedicine for neurological care. The purpose of this study is to explore neurology providers' experiences with delivering telemedicine care during the COVID-19 pandemic. Methods: Semistructured video interviews were conducted with 27 neurology providers who practice at a single, urban academic center. Interviews were transcribed and analyzed for content and themes. Results: Five major themes were identified: virtual examination subspecialty differences, tips and tricks for the virtual examination, improved infrastructure needs, future technologies that could support the virtual examination, and preferences for the postpandemic telemedicine protocol. Subspecialists who described their visits as more focused on behavioral examination and obtaining patient history reported fewer limitations with delivering neurological care through telemedicine platforms. Conclusions: The implementation of a telemedicine system should reflect the needs of each neurology subspecialty. Funding is needed to improve logistical infrastructure for health providers' telemedicine visits, such as technical and administrative assistance, as well as creation and testing of technologies to support physical examination in the virtual environment.

Recruitment, Retention and Intervention Delivery Experiences With Hospice Family Caregivers.

BACKGROUND: Recruitment and attrition are inherently challenging issues in hospice research. We sought to describe strategies of recruitment, retention, and delivery of NOVELA (short for telenovela), an intervention for hospice family caregivers (HFCG). METHODS: Statistics were kept of every referral, consenting participant, visit session, and intervention activity. We used the Social Marketing Mix Framework to describe recruiting strategies employed and lessons learned. RESULTS: Two hospices in the U.S. Mid-Atlantic region referred 47 HFCG and N = 20 agreed to participate, out of which 50% (N = 10) completed all 4 sessions with an average of 2.8 sessions per person, each lasting an average duration of 13.5 minutes (range 8.0-25.7). The main reason for missing a session was a patient's death (N = 8). Successful recruitment strategies employed in NOVELA included: (a) intensive start-up hospice engagement, (b) remote recruitment and delivery of NOVELA, and (c) scheduling flexibility to work around caregivers' other demands. CONCLUSION: The recruitment and intervention delivery had successes and challenges resulting in the identification of multiple opportunities to strengthen our strategy and inform future studies with HFCGs.

"You think you got it down and then the moment comes": The certainty of uncertainty in end-of-life decision making.

OBJECTIVES: Some observers have proposed that physicians may die differently compared with the average patient. Semi-structured interviews with family members of physicians who died offer an opportunity to better understand how patient preferences and wishes are perceived and acted on by family members at the end of life. The decision-making experiences of these family members for a loved one who was a physician may have implications for the lay person at end of life. METHODS: The Johns Hopkins Precursors Study includes individuals who matriculated into the graduating classes of 1948 to 1964 of the Johns Hopkins University School of Medicine. From this cohort, we interviewed 26 family members of physicians who died. Interviews were coded and analyzed using a comparative, iterative process. RESULTS: We found that family members of physicians who died described the uncertainty at end of life. This overarching theme was organized into the following: (a) the certainty of uncertainty; (b) the preparation for uncertainty; and (c) brokering of decisions in the face of uncertainty. Despite careful end-of-life preparation by well-informed physicians, family members were still left to broker decisions as they navigated the wishes of the physician and what the family and medical care team believed to be in the best interest of the physician. SIGNIFICANCE OF RESULTS: Our findings suggest that our family members were not immune to uncertainty. The clinical momentum at the end of life may contribute to challenges faced by patients and family members when brokering decisions. Normalizing uncertainty in medical training and for families may aid in addressing the stress of uncertainty at end of life.

Multi-level correlates of received social support among heart transplant recipients in the international BRIGHT Study: a secondary analysis.

AIMS: Social support is critical in follow-up of patients after heart transplant (HTx) and positively influences well-being and clinical outcomes such as medication adherence. The purpose of this study was to (i) explore received social support variation (emotional and practical) in HTx recipients at country and centre level and (ii) to assess multi-level correlates. METHODS AND RESULTS: Secondary data analysis of the multi-level cross-sectional BRIGHT study was conducted in 36 HTx centres in 11 countries. Received social support related to medication adherence was measured with emotional and practical sub-scales. The Conceptual Model of Social Networks and Health guided selection of patient, micro (interpersonal and psychosocial), meso (HTx centre) and macro-level (country health system) factors. Descriptive statistics, intraclass correlations, and sequential multiple ordinal mixed logistic regression analysis were used. A total of 1379 adult HTx recipients were included. Patient level correlates (female sex, living alone, and fewer depressive symptoms) and micro-level correlates (higher level of chronic disease management and trust in the healthcare team) were associated with better emotional social support. Similarly, patient level (living alone, younger age, and male sex), micro-level and meso-level (patient and clinician-rated higher level of chronic disease management) were associated with better practical social support. Social support varied at country and centre levels for emotional and practical dimensions. CONCLUSIONS: Social support in HTx recipients varies by country, centre, and was associated with multi-level correlates. Qualitative and longitudinal studies are needed to understand influencing factors of social support for intervention development, improvement of social support, and clinical outcomes.

Strengths-building through life purpose, self-care goal setting and social support: Study protocol for Caregiver Support.

Background: For caregivers of people with heart failure, addressing a range of care recipient needs at home can potentially be burdensome, but caregivers may also gain meaning from caregiving. The Caregiver Support Program, a multicomponent strengths-based intervention, is designed to improve outcomes of heart failure caregivers. Objectives: 1) Test the feasibility and gauge an initial effect size of the Caregiver Support Program to improve caregiver quality of life (primary outcome), and fatigue and burden (secondary outcomes) from baseline to 16 weeks, 2) test whether fatigue and caregiver burden are associated with objective measures of resilience (sweat inflammatory cytokines (Il-6 and IL-10) and self-reported resilience, 3) evaluate changes in heart rate variability, IL-6 and IL-10, pre- and post-intervention. Methods: This is a single-blind, two group, waitlist control trial. Eligible caregivers are 1) ≥ 18 years, 2) English speaking, 3) live with the person with heart failure or visit them at least 3 days per week to provide care, 4) provide support for at least 1 instrumental activity of daily living (IADL), 5) live within a 1 h driving radius of the Johns Hopkins Hospital, and 6) the care-recipient has been hospitalized within the last 6 months. Trial participants are randomized into the immediate intervention (n = 24) or waitlist control group (n = 24). Data collection is at baseline, 16 weeks, and 32 weeks. Conclusion: The Caregiver Support program has the potential to increase quality of life and decrease fatigue and caregiver burden for caregivers of people with heart failure and multiple co-morbidities.

Hospice Family Caregiver Perceptions of Benefits and Challenges of a Telenovela Educational Intervention.

Background: Telenovelas show significant promise as a mode of education that could potentially enhance hospice family caregivers' (HFCG) ability to manage distress or pain for themselves and the care recipient. Objectives: We sought to understand HFCGs' perceived benefits and challenges of NOVELA using the Levels of Kirkpatrick as a conceptual framework. Setting/Subjects: HFCGs from two hospices in the Mid-Atlantic region of the United States. Measurements: Semistructured interviews were conducted to understand perceptions of HFCGs on the benefits and challenges of the NOVELA intervention. Results: Participants (N = 20) in our study were mainly homebound, well educated, White female, and adult children of people with advanced cancer who reported mild anxiety and moderate self-efficacy at baseline. Three unique themes were identified: acceptability of NOVELA, usability and relevance of NOVELA, and the effect of NOVELA. According to our conceptual model, the intervention positively affects all three adult learning categories: reaction, learning, and behavior. Conclusion: Our findings suggest that HFCGs support the proposed NOVELA intervention and it appears to be an acceptable educational tool during hospice care (NCT04533594).

Exploring the Experiences of Co-morbid Pain and Depression in Older African American Women and Their Preferred Management Strategies.

The intersection of race, gender, and age places older African American women at an increased risk for untreated physical pain and depression that can significantly diminish their quality of life. The objectives of this study were to (1) explore older African American women's perceptions of pain and depressive symptoms and how these symptoms influence each other, and (2) explore effective pain and depression alleviation strategies used by the women. We conducted five focus groups with older African American women (N = 18). We used deductive coding to analyze focus group transcripts and qualitative description to summarize themes. We identified five major themes: (1) Spiritual Suffering from Linked Pain and Depression, (2) Lack of Understanding from Healthcare Providers, (3) Push Through and Live Through, (4) Medications Not Worth the Risk and, (5) Strategies for Pain and Depression. This study offers insight into the experiences of pain and depression in older African American women, and alleviation strategies they perceive as effective. These qualitative findings may be used to inform interventions for older African American women who experience pain and depressive symptoms.

Mitigating End-of-Life Burden: Parallel Perspectives of Physician-Patients & Family Caregivers.

CONTEXT: Patients and family caregivers perceive burden in care at the end of life differently even when the patient is a physican. OBJECTIVES: We describe how older adult physicians as prospective patients (hereafter "physician-patients") and family caregivers of physician-patients view burden in care at the end of life. METHODS: Interviews with physician-patients (n = 28) and family caregivers (n = 26) of physician-patients who had died were conducted as part of a shared decision-making study. Both groups expressed concerns with burden at the end of life. We coded and analyzed descriptions of burden using inductive and deductive approaches to coding sub-themes as in qualitative description. We then created a conceptual model depicting the relationships among the concepts, returning to the interviews to verify respective contexts. RESULTS: Unilateral actions taken at different points in the illness trajectory by both groups suggested different concerns about burden occurring in parallel. While everyone anticipated burden associated with care at the end of life, physician-patients made legal and financial arrangements to minimize this burden. Nevertheless several family caregivers described the burden that they experienced. We propose a conceptual model to guide future research and care. CONCLUSION: Physician-Patients ' clinical insights drive their attempts to alleviate burden on their families. However, family caregivers still experienced burden. Recognizing the parallel perspectives of burden may inform the type and timing of interventions to effectively minimize burden and provide compassionate care to both patients and families at the end of life.