"The Patient Is Being Pressured!" Coercion Versus Relational Autonomy.

Relational autonomy is a concept that describes the interdependent nature of decision making by individuals. Relational autonomy is distinct from the traditional concept of autonomy, which asserts the need for each individual to make choices based on their own values and without influence by others. We present a case in which a patient made decisions that appeared contrary to his own desires. The case raises questions about the line between appropriate and coercive family influence. We also explore the moral distress generated by the attempt to reconcile his expressed desires and the decisions he made. We propose that examining the case with a relational autonomy lens may have helped clinical staff understand his decision and thus mitigate moral distress.

Top Ten Tips Palliative Care Clinicians Should Know About Leveraging the Electronic Health Record for Data Collection and Quality Improvement.

As palliative care (PC) programs rapidly grow and expand across settings, the need to measure, improve, and standardize high-quality PC has also grown. The electronic health record (EHR) is a key component of these efforts as a central hub of care delivery and a repository of patient and system data. Deliberate efforts to leverage the EHR for PC quality improvement (QI) can help PC programs and health systems improve care for patients with serious illnesses. This article, written by clinicians with experience in QI, informatics, and clinical program development, provides practical tips and guidance on EHR strategies and tools for QI and quality measurement.

Patients' and caregivers' experiences of hospitalization under COVID-19 visitation restrictions.

BACKGROUND: During the COVID-19 pandemic, hospitals did not allow caregiver visitation. Little is known about how caregivers' absence affected patients' care. OBJECTIVE: This study aimed to describe visitation restrictions' impact on patients and their caregivers experiences. DESIGN: We used a sequential explanatory mixed-methods study design. First, we randomly selected 200 adult patients with cancer or heart failure hospitalized before (n = 100) and during visitor restrictions (n = 100) and abstracted data from the electronic medical record on communication between medical teams and caregivers and the topics discussed. Results from the quantitative analysis guided our thematic analysis of semi-structured interviews conducted with a subsample of patients hospitalized during visitor restrictions and their caregivers to understand the impact of visitor restrictions on their experiences. RESULTS: Compared to prerestrictions, caregivers under visitation restrictions communicated less frequently with the medical team (29% vs. 37% of hospitalized days; p = .04), fewer received discharge counseling (37% vs. 52%; p = .04), and disproportionately more had no contact with the medical team (36% vs. 17%; p < .01). Video conferencing was documented for caregivers of only five patients. Qualitative analysis revealed that both caregivers and patients experienced emotional distress, increased conflict, and decreased perception of quality of care because of visitation restrictions. CONCLUSIONS: Hospital visitor restrictions significantly reduced caregivers' communication with patients' medical team, causing caregivers and patients emotional distress. Protocols that facilitate communication between caregivers and care teams may benefit caregivers who cannot be physically present at care facilities, including distance caregivers.

Heart to Heart Discussions: Characterizing Goals of Care Conversations for Advanced Heart Failure Patients Initiating Palliative Inotropes.

BACKGROUND: Guidelines recommend goals of care conversations (GOCC) and specialty palliative care at the time of initiation of palliative inotropes for patients with advanced heart failure. The extent to which GOCC are occurring, the content of the GOCC, and the frequency of palliative care involvement is unknown. METHODS AND RESULTS: We conducted a retrospective chart review of all patients discharged from a tertiary medical center between October 2015 and April 2020 initiated on continuous palliative inotropes. We identified 53 patients who were discharged on continuous palliative inotropes. Most patients (46/53 [87%]) had a documented GOCC, including discussions around preferences for life-sustaining treatments, hospice, and/or prognosis. However, just more than one-half of the patients (55% [15/27]) with an ICD had a documented discussion regarding preferences for ICD deactivation. Patients seen by palliative care were more likely to have a documented discussion about ICD deactivation (68% vs 0%, P = .0098). The frequency of palliative care consultation and documented GOCC conversations increased over time. CONCLUSIONS: Although we observed overall high rates of documented GOCC, there is room for improving the rate of discussions with patients about whether they wish to have their ICD deactivated. Future research should test interventions to improve the frequency of ICD discussions.

A Formative Mixed-Methods Study of Emotional Responsiveness in Telepalliative Care.

Background: It is unknown whether telemedicine-delivered palliative care (tele-PC) supports emotionally responsive patient-clinician interactions. Objectives: We conducted a mixed-methods formative study at two academic medical centers in rural U.S. states to explore the acceptability, feasibility, and emotional responsiveness of tele-PC. Design: We assessed clinicians' emotional responsiveness through questionnaires, qualitative interviews, and video coding. Results: We completed 11 tele-PC consultations. Mean age was 71 years, 30% did not complete high school, 55% experienced at least moderate financial insecurity, and 2/3 rated their overall health poorly. All patients rated tele-PC as equal to, or better than, in-person PC at providing emotional support. There was a tendency toward higher positive and lower negative emotions following the consultation. Video coding identified 114 instances of patients expressing emotions, and clinicians detected and responded to 98% of these events. Conclusion: Tele-PC appears to support emotionally responsive patient-clinician interactions. A mixed-methods approach to evaluating tele-PC yields useful, complementary insights.

Rural disparities in end-of-life care for patients with heart failure: Are they due to geography or socioeconomic disparity?

PURPOSE: The impact of rurality and socioeconomic deprivation on end-of-life (EOL) care for patients with heart failure (HF) is unknown. We analyzed claims to describe the prevalence and predictors of EOL health care utilization for patients dying with HF in a predominantly rural state. METHODS: We used the MaineHealth Data Organization's All-Payer Claims Data to identify 15,168 patients ≥35 who died with HF between 2012 and 2017. The primary outcome was health care utilization during the last 180 days of life (EOL definition for this analysis), including emergency department (ED) visits, hospitalizations, intensive care unit (ICU) admissions, and hospice utilization. Patient characteristics analyzed included age, gender, comorbidities, area deprivation index (ADI), and rurality. FINDINGS: Among 15,168 patients ≥35 who died with HF, 48% had ≥2 hospitalizations, 72% had ≥2 ED visit, 29% had an ICU stay, 2% initiated dialysis during EOL, and 64% received hospice. Rural patients were more likely to have an ICU admission and have ≥2 hospitalizations. Patients residing in areas with higher ADI were more likely to be hospitalized, admitted to the ICU, and started on dialysis. Both rural patients and those living in higher ADI areas were less likely to receive hospice. After multivariable adjustment, rurality and ADI were independently associated with a decreased likelihood of receiving hospice (OR 0.62 [95% CI: 0.53-0.72] for the most rural patients and OR 0.64 [95% CI: 0.57-0.72] for the highest ADI). CONCLUSION: Both rurality and local area deprivation drive disparities in EOL care for patients dying with heart failure.

How Well Does the Surprise Question Predict 1-year Mortality for Patients Admitted with COPD?

BACKGROUND: Patients with chronic obstructive pulmonary disease (COPD) often receive burdensome care at end-of-life (EOL) and infrequently complete advance care planning (ACP). The surprise question (SQ) is a prognostic tool that may facilitate ACP. OBJECTIVE: To assess how well the SQ predicts mortality and prompts ACP for COPD patients. DESIGN: Retrospective cohort study. SUBJECTS: Patients admitted to the hospital for an acute exacerbation of COPD between July 2015 and September 2018. MAIN MEASURES: Emergency department (ED) and inpatient clinicians answered, "Would you be surprised if this patient died in the next 30 days (ED)/one year (inpatient)?" The primary outcome measure was the accuracy of the SQ in predicting 30-day and 1-year mortality. The secondary outcome was the correlation between SQ and ACP (palliative care consultation, documented goals-of-care conversation, change in code status, or completion of ACP document). KEY RESULTS: The 30-day SQ had a high specificity but low sensitivity for predicting 30-day mortality: sensitivity 12%, specificity 95%, PPV 11%, and NPV 96%. The 1-year SQ demonstrated better accuracy for predicting 1-year mortality: sensitivity 47%, specificity 75%, PPV 35%, and NPV 83%. After multivariable adjustment for age, sex, and prior 6-month admissions, 1-year SQ+ responses were associated with greater odds of 1-year mortality (OR 2.38, 95% CI 1.39-4.08) versus SQ-. One-year SQ+ patients were more likely to have a goals-of-care conversation (25% vs. 11%, p < 0.01) and complete an advance directive or POLST (46% vs. 23%, p < 0.01). After multivariable adjustment, SQ+ responses to the 1-year SQ were associated with greater odds of ACP receipt (OR 2.67, 95% CI 1.64-4.36). CONCLUSIONS: The 1-year surprise question may be an effective component of prognostication and advance care planning for COPD patients in the inpatient setting.

What is Quality End-of-Life Care for Patients With Heart Failure? A Qualitative Study With Physicians.

Background Advanced heart failure (AHF) carries a morbidity and mortality that are similar or worse than many advanced cancers. Despite this, there are no accepted quality metrics for end-of-life (EOL) care for patients with AHF. Methods and Results As a first step toward identifying quality measures, we performed a qualitative study with 23 physicians who care for patients with AHF. Individual, in-depth, semistructured interviews explored physicians' perceptions of characteristics of high-quality EOL care and the barriers encountered. Interviews were analyzed using software-assisted line-by-line coding in order to identify emergent themes. Although some elements and barriers of high-quality EOL care for AHF were similar to those described for other diseases, we identified several unique features. We found a competing desire to avoid overly aggressive care at EOL alongside a need to ensure that life-prolonging interventions were exhausted. We also identified several barriers related to identifying EOL including greater prognostic uncertainty, inadequate recognition of AHF as a terminal disease and dependence of symptom control on disease-modifying therapies. Conclusions Our findings support quality metrics that prioritize receipt of goal-concordant care over utilization measures as well as a need for more inclusive payment models that appropriately reflect the dual nature of many AHF therapies.

Cause or Effect? The Role of Prognostic Uncertainty in the Fear of Cancer Recurrence.

BACKGROUND: Fear of cancer recurrence (FCR) is an important cause of suffering for cancer survivors, and both empirical evidence and theoretical models suggest that prognostic uncertainty plays a causal role in its development. However, the relationship between prognostic uncertainty and FCR is incompletely understood. OBJECTIVE: To explore the relationship between prognostic uncertainty and FCR among patients with ovarian cancer (OC). DESIGN: A qualitative study was conducted utilizing individual in-depth interviews with a convenience sample of patients with epithelial ovarian cancer who had completed first-line treatment with surgery and/or chemotherapy. Semi-structured interviews explored participants' (1) understanding of their prognosis; (2) experiences, preferences, and attitudes regarding prognostic information; and (3) strategies for coping with prognostic uncertainty. Inductive qualitative analysis and line-by-line software-assisted coding of interview transcripts was conducted to identify key themes and generate theoretical insights on the relationship between prognostic uncertainty and FCR. RESULTS: The study sample consisted of 21 participants, nearly all of whom reported experiencing significant FCR, which they traced to an awareness of the possibility of a bad outcome. Some participants valued and pursued prognostic information as a means of coping with this awareness, suggesting that prognostic uncertainty causes FCR. However, most participants acknowledged fundamental limits to both the certainty and value of prognostic information, and engaged in various strategies aimed not at reducing but constructing and maintaining prognostic uncertainty as a means of sustaining hope in the possibility of a good outcome. Participants' comments suggested that prognostic uncertainty, fear, and hope are connected by complex, bi-directional causal pathways mediated by processes that allow patients to cope with, construct, and maintain their uncertainty. A provisional dual-process theoretical model was developed to capture these pathways. CONCLUSION: Among patients with OC, prognostic uncertainty is both a cause and an effect of FCR-a fear-inducing stimulus and a hope-sustaining response constructed and maintained through various strategies. More work is needed to elucidate the relationships between prognostic uncertainty, fear, and hope, to validate and refine our theoretical model, and to develop interventions to help patients with OC and other serious illnesses to achieve an optimal balance between these states.

Variations in Hospice Utilization and Length of Stay for Medicare Patients With Melanoma.

CONTEXT: Timely hospice referral is an indicator of high-quality end-of-life care for cancer patients. Variations in patient characteristics associated with hospice utilization and length of stay have been demonstrated in studies of other malignancies but not melanoma. OBJECTIVES: We sought to understand hospice utilization and patient characteristics associated with variability in use for the older melanoma population. METHODS: We used the Surveillance, Epidemiology, and End Results-Medicare database to identify 13,393 melanoma patients aged 65+ years at time of diagnosis between 2000 and 2009, who died by 12/31/10. The primary outcome was enrollment in hospice with secondary outcome of hospice duration. Patient characteristics associated with variations in hospice enrollment were examined. RESULTS: Among 13,393 patients who died with melanoma, 5298 (40%) received hospice care. Of these, 17% were enrolled in hospice for three days or less, while 13% had ≥90 days of hospice care. Despite improvements over time in the proportion of patients who received hospice and those who received at least 90 days of hospice care, late hospice enrollments did not change. Multivariable analysis revealed that patients of older age, with distant disease at time of diagnosis, and residing in rural areas or in census tracts with higher rates of high school completion were more likely to enroll in hospice. CONCLUSION: Rates of hospice enrollment increased over time but remained under accepted quality benchmarks with variations evident in those who receive hospice services. Efforts to increase access to earlier hospice care for all patients dying with melanoma are essential.

Assessment of t(2;5)(p23;q35) translocation and variants in pediatric ALK+ anaplastic large cell lymphoma.

To evaluate t(2;5) and its variants, we studied 21 pediatric cases of anaplastic lymphoma kinase (ALK)+ anaplastic large cell lymphoma (ALCL) by using immunohistochemical staining, fluorescence in situ hybridization, cytogenetics, and reverse transcriptase-polymerase chain reaction. Results showed 7 (33%) cases with t(2;5), 6 (29%) with variant gene rearrangements, 7 (33%) with uncharacterized rearrangements, and 1 with ALK protein expression but no ALK rearrangement. Among 6 variant gene rearrangements, 1 had TPM4-ALK/t(2;19)(p23;p13) and 2 had inv(2) with the breakpoint proximate to ATIC-ALK and an unknown partner gene separately. The genetic features of the remaining 3 cases were as follows: ins(8;2) with an unknown partner gene; conversion from ALK- at diagnosis to ALK+ at recurrence with unspecified gene rearrangement; complex karyotype without involvement of 2p23, suggesting a cryptic translocation. Concordance between different laboratory results varied from 47% to 81%. These data suggest that ALK variants are not uncommon and underscore the necessity of integrating immunohistochemical, cytogenetic, and molecular genetic approaches to detect, characterize, and confirm t(2;5) and its variant translocations.