The Hierarchy of Communication Needs: A Novel Communication Strategy for High Mistrust Settings Developed in a Brazilian COVID-ICU.

Context: The COVID-19 pandemic presented unique challenges for health care systems. Overcrowded units, extreme illness severity, uncertain prognoses, and mistrust in providers resulted in a "pressure cooker" where traditional communication strategies were often insufficient. Objectives: Building on well-studied traditional communication interventions, neurobiology principles were used to create a novel communication strategy designed in the COVID-ICU to respond to the unique communication needs of patients within the context of a high mistrust setting. Methods: The hierarchy of communication needs recognizes three specific levels of communication that are essential within high-emotion and low-trust settings. The first level is to establish trust. The second level is to resonate with patients' emotions, helping to reduce arousal and improve empathy. The third level includes the more traditional content of disclosing prognostic information and shared decision-making. When facing communication challenges, clinicians are taught to move back a level and reattune to emotions and/or reestablish trust. Discussion: The COVID pandemic revealed the shortcomings of a primarily cognitive communication style. The hierarchy of communication needs emphasizes trust building, and emotional resonance as prerequisites of effective cognitive discussions, resulting in more effective clinician-patient communication that more fully incorporates cultural humility and better meets the needs of diverse patient populations. Additional research is needed to further develop this strategy and evaluate its impact on patient experience and outcomes.

Supportive Care for Cancer Patients Via Telehealth: Breaking Bad News and Providing Palliative Care Virtually.

ABSTRACT: Delivering oncologic care via telemedicine has presented a unique set of benefits and challenges. Discussions of sensitive topics between patients and providers can be difficult on a virtual platform. Although it was imperative to utilize telemedicine to keep cancer patients safe during the height of the pandemic, its continued use in the postvaccination era has provided important conveniences to both providers and patients. In the case of breaking bad news and end-of-life discussions, however, in-person care has remained the overwhelming preference of both groups. If face-to-face consultation is not possible or feasible in these situations, virtual visits are a viable option to connect oncologists with their patients.

JPSM Controversies in Palliative Care: "What is the Most Important, Measurable Goal of Serious Illness Conversations in the Ambulatory Setting?"

There is widespread agreement that clinicians should talk to seriously ill patients and their families about their illnesses. However, advance directives as a quality metric have been called into question because of the lack of data that these conversations lead to goal-concordant care. The controversy has led many to reexamine the purpose of conversations with seriously ill patients and what should be discussed in ambulatory visits.  In this Controversies in Palliative care, experts in palliative care review the literature and suggest both how it influences their clinical practice and what research needs to be done to clarify the controversy. While there is not a single outcome that the experts agree on, they posit a variety of different ways to assess these conversations.

Lessons Learned About System-Level Improvement in Serious Illness Communication: A Qualitative Study of Serious Illness Care Program Implementation in Five Health Systems.

BACKGROUND: Serious illness communication is a key element of high-quality care, but it is difficult to implement in practice. The Serious Illness Care Program (SICP) is a multifaceted intervention that contributes to more, earlier, and better serious illness conversations and improved patient outcomes. This qualitative study examined the organizational and implementation factors that influenced improvement in real-world contexts. METHODS: The authors performed semistructured interviews of 30 health professionals at five health systems that adopted SICP as quality improvement initiatives to investigate the organizational and implementation factors that appeared to influence improvement. RESULTS: After SICP implementation across the organizations studied, approximately 4,661 clinicians have been trained in serious illness communication and 56,712 patients had had an electronic health record (EHR)-documented serious illness conversation. Facilitators included (1) visible support from leaders, who financially invested in an implementation team and champions, expressed the importance of serious illness communication as an institutional priority, and created incentives for training and documenting serious illness conversations; (2) EHR and data infrastructure to foster performance improvement and accountability, including an accessible documentation template, a reporting system, and customized data feedback for clinicians; and (3) communication skills training and sustained support for clinicians to problem-solve communication challenges, reflect on communication experiences, and adapt the intervention. Inhibitors included leadership inaction, competing priorities and incentives, variable clinician acceptance of EHR and data tools, and inadequate support for clinicians after training. CONCLUSION: Successful implementation appeared to rely on multilevel organizational strategies to prioritize, reward, and reinforce serious illness communication. The insights derived from this research may function as an organizational road map to guide implementation of SICP or related quality initiatives.

Improving serious illness communication: a qualitative study of clinical culture.

OBJECTIVE: Communication about patients' values, goals, and prognosis in serious illness (serious illness communication) is a cornerstone of person-centered care yet difficult to implement in practice. As part of Serious Illness Care Program implementation in five health systems, we studied the clinical culture-related factors that supported or impeded improvement in serious illness conversations. METHODS: Qualitative analysis of semi-structured interviews of clinical leaders, implementation teams, and frontline champions. RESULTS: We completed 30 interviews across palliative care, oncology, primary care, and hospital medicine. Participants identified four culture-related domains that influenced serious illness communication improvement: (1) clinical paradigms; (2) interprofessional empowerment; (3) perceived conversation impact; (4) practice norms. Changes in clinicians' beliefs, attitudes, and behaviors in these domains supported values and goals conversations, including: shifting paradigms about serious illness communication from 'end-of-life planning' to 'knowing and honoring what matters most to patients;' improvements in psychological safety that empowered advanced practice clinicians, nurses and social workers to take expanded roles; experiencing benefits of earlier values and goals conversations; shifting from avoidant norms to integration norms in which earlier serious illness discussions became part of routine processes. Culture-related inhibitors included: beliefs that conversations are about dying or withdrawing care; attitudes that serious illness communication is the physician's job; discomfort managing emotions; lack of reliable processes. CONCLUSIONS: Aspects of clinical culture, such as paradigms about serious illness communication and inter-professional empowerment, are linked to successful adoption of serious illness communication. Further research is warranted to identify effective strategies to enhance clinical culture and drive clinician practice change.

Advancing Palliative Care Integration in Hematology: Building Upon Existing Evidence.

OPINION STATEMENT: Patients with hematologic malignancies and their families are among the most distressed of all those with cancer. Despite high palliative care-related needs, the integration of palliative care in hematology is underdeveloped. The evidence is clear that the way forward includes standard-of-care PC integration into routine hematologic malignancy care to improve patient and caregiver outcomes. As the PC needs for patients with blood cancer vary significantly by disease, a disease-specific PC integration strategy is needed, allowing for serious illness care interventions to be individualized to the specific needs of each patient and situation.

Assessing the Acceptability and Feasibility of Leveraging Emergency Department Social Workers' Advanced Communication Skills to Assess Elderly Patients' Goals and Values.

Background: The Emergency Department (ED) has increasingly been recognized as an important site of care for older adults with unmet palliative care needs. Despite this, no clear model of care delivery has emerged. Aim: To assess the acceptability and feasibility of a scripted palliative care communication intervention in the ED directed by social workers. We hypothesized that the intervention would be feasible, acceptable to patients and ED social workers, and that the collection of patient outcomes would be possible. Design: A prospective, unblinded, pilot randomized clinical trial of older adults with serious illness presenting to the ED. Patients were randomized to either receive a social worker-directed palliative care intervention (n-65), which consisted of a conversation focused on patients' goals, values, hopes and worries, or to usual care (n-52). The intervention was evaluated for feasibility and acceptability. Results: Of patients randomized to the intervention arm, 66% (43/65) completed a conversation with the social worker. Focus group feedback with the social workers further demonstrated the feasibility of these conversations. There was minimal (12%) loss to follow-up. Of the patients who received the intervention, the majority reported that they appreciated the social workers bringing up their goals for the future (77%), their social workers asking about their fears and worries (72%), and they liked the way the conversation was set up (81%). Social workers administered 95% of the conversation components. Conclusions: This pilot trial demonstrated the feasibility and acceptability of a social worker-directed, scripted palliative care communication intervention in a single urban, academic ED.

Video and In-Person Palliative Care Delivery Challenges before and during the COVID-19 Pandemic.

CONTEXT: Palliative care (PC) clinicians faced many challenges delivering outpatient care during the coronavirus-19 (COVID-19) pandemic. OBJECTIVES: We described trends for in-person and video visit PC delivery challenges before and during the COVID-19 pandemic in the U.S. METHODS: We performed a secondary data analysis of patient characteristics and PC clinician surveys from a multisite randomized controlled trial at 20 academic cancer centers. Patients newly diagnosed with advanced lung cancer (N = 653) were randomly assigned to receive either early in-person or telehealth PC and had at least monthly PC clinician visits. PC clinicians completed surveys documenting PC delivery challenges after each encounter. We categorized patients into 3 subgroups according to their PC visit dates relative to the onset of the COVID-19 pandemic in the U.S.-pre-COVID-19 (all visits before March 1, 2020), pre/post-COVID-19 (≥1 visit before and after March 1, 2020), and post-COVID-19 (all visits after March 1, 2020). We performed Pearson's chi-squared, Fisher's exact, and Kruskal-Wallis tests to examine associations. RESULTS: We analyzed 2329 surveys for video visits and 2176 surveys for in-person visits. For video visits, the pre-COVID-19 subgroup (25.8% [46/178]) had the most technical difficulties followed by the pre/post-COVID-19 subgroup (17.2% [307/1784]) and then the post-COVID-19 subgroup (11.4% [42/367]) (P = 0.0001). For in-person visits, challenges related to absent patients' family members occurred most often in the post-COVID-19 subgroup (6.2% [16/259]) followed by the pre/post-COVID-19 subgroup (3.6% [50/1374]) and then the pre-COVID-19 subgroup (2.2% [12/543]) (P = 0.02). CONCLUSION: Technical difficulties related to PC video visits improved, whereas in-person visit challenges related to absent patients' family members worsened during the pandemic.

Factors associated with psychological distress in caregivers of patients with malignant gliomas.

PURPOSE: Caregivers of patients with malignant gliomas are at risk for psychological distress. However, factors associated with distress in this population have not been well described. We conducted a prospective study evaluating psychological distress in patients with malignant gliomas and their caregivers and exploring factors associated with caregiver distress. METHODS: We enrolled patients with newly diagnosed malignant gliomas (N = 77) and their caregivers (N = 61). At baseline and 3, 6, and 9 months after diagnosis, we administered the Hospital Anxiety and Depression Scale to assess psychological distress and the Caregiver Reaction Assessment to evaluate caregiver burden. We performed multivariable regression analyses to investigate caregiver-related, patient-related, and tumor-related factors associated with caregivers' distress. RESULTS: At baseline, 48.3% (29/60) and 26.2% (16/61) of caregivers reported clinically significant anxiety and depression symptoms, respectively. Anxiety and depression symptoms persisted over time. Greater caregiver depression was associated with male gender (B = 1.48, 95% CI 0.16-2.81, p = 0.03), higher caregiver burden (B = 0.08, 95% CI 0.01-0.15, p = 0.02), caregiver anxiety (B = 0.53, 95% CI 0.38-0.68, p < 0.0001), patient depression (B = 0.34, 95% CI 0.13-0.55, p = 0.002), and caring for a younger patient (B = -0.07, 95% CI -0.15 to 0.00, p = 0.049). Factors associated with greater caregiver anxiety symptoms were caregiver depression (B = 0.91, 95% CI 0.71-1.12, p < 0.0001) and younger patient age (B = -0.15, 95% CI -0.24 to -0.05, p = 0.003). CONCLUSION: Male gender, higher caregiver burden, greater patient depression symptoms, and younger patient age are associated with increased distress among caregivers of patients with malignant gliomas, underscoring the need for tailored supportive care interventions targeting caregivers at highest risk for psychological distress.

To Accompany, Always: Psychological Elements of Palliative Care for the Dying Patient.

Palliative care clinicians provide psychological support throughout their patients' journeys with illness. Throughout our series exploring the psychological elements of palliative care (PEPC), we suggested that the quality of care is enhanced when clinicians have a deeper understanding of patients' psychological experience of serious illness. Palliative care clinicians are uniquely poised to offer patients a grounded, boundaried, and uplifting relationship to chart their own course through a life-altering or terminal illness. This final installment of our series on PEPC has two aims. First, to integrate PEPC into a comfort-focused or hospice setting and, second, to demonstrate how the core psychological concepts previously explored in the series manifest during the dying process. These aspects include frame/formulation, attachment, attunement, transference/countertransference, the holding environment, and clinician wellness.

Study protocol for a randomised trial evaluating the non-inferiority of stepped palliative care versus early integrated palliative care for patients with advanced lung cancer.

INTRODUCTION: Integrating palliative care (PC) early in the illness course for patients with serious cancers improves their outcomes and is recommended by national organisations such as the American Society of Clinical Oncology. However, monthly visits with PC clinicians from the time of diagnosis can be challenging to implement due to the lack of specialty-trained PC clinicians and resources. Therefore, we developed a stepped care model to triage PC service based on patients' needs. METHODS AND ANALYSIS: We are conducting a non-blinded, randomised trial to evaluate the non-inferiority of a stepped PC model compared with an early integrated PC model for improving patients' quality of life (QOL) at 24 weeks (primary outcome). Patients assigned to early integrated PC meet with PC every 4 weeks throughout their illness. Patients assigned to stepped PC have PC visits only at clinically significant points in their illness (eg, cancer progression) unless their QOL decreases, at which time they are 'stepped up' and meet with PC every 4 weeks throughout the remainder of their illness. Secondary aims include assessing whether stepped PC is non-inferior to early integrated PC regarding patient-clinician communication about end of life care and length of stay on hospice as well as comparing resource utilisation. Patients are recruited from the Massachusetts General Hospital Cancer Center, Boston, Massachusetts; Duke Cancer Center, Durham, North Carolina and University of Pennsylvania Abramson Cancer Center, Philadelphia, Pennsylvania. The target sample size is 510 patients. ETHICS AND DISSEMINATION: The study is funded by the National Cancer Institute, approved by the Dana-Farber/Harvard Cancer Center Institutional Review Board and will be reported in accordance with the Consolidated Standards of Reporting Trials statement. We will disseminate results through professional society meetings, peer-reviewed publications and presentations to patient organisations. TRIAL REGISTRATION NUMBER: NCT03337399.

Associations of patient-reported care satisfaction with symptom burden and healthcare use in hospitalized patients with cancer.

BACKGROUND: Hospitalized patients with cancer often experience a high symptom burden, which may impact care satisfaction and healthcare utilization. METHODS: We prospectively enrolled patients with cancer and unplanned hospitalizations from September 2014 to April 2017. Upon admission, we assessed patients' care satisfaction (FAMCARE items: satisfaction with care coordination and speed with which symptoms are treated) and physical (Edmonton Symptom Assessment System [ESAS]) and psychological (Patient Health Questionnaire-4 [PHQ-4]) symptoms. We used regression models to identify factors associated with care satisfaction and associations of satisfaction with symptom burden and hospital length of stay (LOS). RESULTS: Among 1,576 participants, most reported being "satisfied"/ "very satisfied" with care coordination (90%) and speed with which symptoms are treated (89%). Older age (coordination: B < 0.01, P = 0.02, speed: B = 0.01, P < 0.01) and admission to a dedicated oncology service (B = 0.20, P < 0.01 for each) were associated with higher satisfaction. Higher satisfaction with care coordination was associated with lower ESAS-physical (B = - 1.28, P < 0.01), ESAS-total (B = - 2.73, P < 0.01), PHQ4-depression (B = - 0.14, P = 0.02), and PHQ4-anxiety (B = - 0.16, P < 0.01) symptoms. Higher satisfaction with speed with which symptoms are treated was associated with lower ESAS-physical (B = - 1.32, P < 0.01), ESAS-total (B = - 2.46, P < 0.01), PHQ4-depression (B = - 0.14, P = 0.01), and PHQ4-anxiety (B = - 0.17, P < 0.01) symptoms. Satisfaction with care coordination (B = - 0.48, P = 0.04) and speed with which symptoms are treated (B = - 0.44, P = 0.04) correlated with shorter LOS. CONCLUSIONS: Hospitalized patients with cancer report high care satisfaction, which correlates with older age and admission to a dedicated oncology service. Significant associations among higher care satisfaction, lower symptom burden, and shorter hospital LOS highlight the importance of improving symptom management and care coordination in this population.

Effect of a Symptom Monitoring Intervention for Patients Hospitalized With Advanced Cancer: A Randomized Clinical Trial.

IMPORTANCE: Symptom monitoring interventions are increasingly becoming the standard of care in oncology, but studies assessing these interventions in the hospital setting are lacking. OBJECTIVE: To evaluate the effect of a symptom monitoring intervention on symptom burden and health care use among hospitalized patients with advanced cancer. DESIGN, SETTING, AND PARTICIPANTS: This nonblinded randomized clinical trial conducted from February 12, 2018, to October 30, 2019, assessed 321 hospitalized adult patients with advanced cancer and admitted to the inpatient oncology services of an academic hospital. Data obtained through November 13, 2020, were included in analyses, and all analyses assessed the intent-to-treat population. INTERVENTIONS: Patients in both the intervention and usual care groups reported their symptoms using the Edmonton Symptom Assessment System (ESAS) and the 4-item Patient Health Questionnaire-4 (PHQ-4) daily via tablet computers. Patients assigned to the intervention had their symptom reports displayed during daily oncology rounds, with alerts for moderate, severe, or worsening symptoms. Patients assigned to usual care did not have their symptom reports displayed to their clinical teams. MAIN OUTCOMES AND MEASURES: The primary outcome was the proportion of days with improved symptoms, and the secondary outcomes were hospital length of stay and readmission rates. Linear regression was used to evaluate differences in hospital length of stay. Competing-risk regression (with death treated as a competing event) was used to compare differences in time to first unplanned readmission within 30 days. RESULTS: From February 12, 2018, to October 30, 2019, 390 patients (76.2% enrollment rate) were randomized. Study analyses to assess change in symptom burden included 321 of 390 patients (82.3%) who had 2 or more days of symptom reports completed (usual care, 161 of 193; intervention, 160 of 197). Participants had a mean (SD) age of 63.6 (12.8) years and were mostly male (180; 56.1%), self-reported as White (291; 90.7%), and married (230; 71.7%). The most common cancer type was gastrointestinal (118 patients; 36.8%), followed by lung (60 patients; 18.7%), genitourinary (39 patients; 12.1%), and breast (29 patients; 9.0%). No significant differences were detected between the intervention and usual care for the proportion of days with improved ESAS-physical (unstandardized coefficient [B] = -0.02; 95% CI, -0.10 to 0.05; P = .56), ESAS-total (B = -0.05; 95% CI, -0.12 to 0.02; P = .17), PHQ-4-depression (B = -0.02; 95% CI, -0.08 to 0.04; P = .55), and PHQ-4-anxiety (B = -0.04; 95% CI, -0.10 to 0.03; P = .29) symptoms. Intervention patients also did not differ significantly from patients receiving usual care for the secondary end points of hospital length of stay (7.59 vs 7.47 days; B = 0.13; 95% CI, -1.04 to 1.29; P = .83) and 30-day readmission rates (26.5% vs 33.8%; hazard ratio, 0.73; 95% CI, 0.48-1.09; P = .12). CONCLUSIONS AND RELEVANCE: This randomized clinical trial found that for hospitalized patients with advanced cancer, the assessed symptom monitoring intervention did not have a significant effect on patients' symptom burden or health care use. These findings do not support the routine integration of this type of symptom monitoring intervention for hospitalized patients with advanced cancer. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03396510.

Randomized Trial of a Palliative Care Intervention to Improve End-of-Life Care Discussions in Patients With Metastatic Breast Cancer.

BACKGROUND: Studies show that early, integrated palliative care (PC) improves quality of life (QoL) and end-of-life (EoL) care for patients with poor-prognosis cancers. However, the optimal strategy for delivering PC for those with advanced cancers who have longer disease trajectories, such as metastatic breast cancer (MBC), remains unknown. We tested the effect of a PC intervention on the documentation of EoL care discussions, patient-reported outcomes, and hospice utilization in this population. PATIENTS AND METHODS: Patients with MBC and clinical indicators of poor prognosis (n=120) were randomly assigned to receive an outpatient PC intervention (n=61) or usual care (n=59) between May 2, 2016, and December 26, 2018, at an academic cancer center. The intervention entailed 5 structured PC visits focusing on symptom management, coping, prognostic awareness, decision-making, and EoL planning. The primary outcome was documentation of EoL care discussions in the electronic health record (EHR). Secondary outcomes included patient-report of discussions with clinicians about EoL care, QoL, and mood symptoms at 6, 12, 18, and 24 weeks after baseline and hospice utilization. RESULTS: The rate of EoL care discussions documented in the EHR was higher among intervention patients versus those receiving usual care (67.2% vs 40.7%; P=.006), including a higher completion rate of a Medical Orders for Life-Sustaining Treatment form (39.3% vs 13.6%; P=.002). Intervention patients were also more likely to report discussing their EoL care wishes with their doctor (odds ratio [OR], 3.10; 95% CI, 1.21-7.94; P=.019) and to receive hospice services (OR, 4.03; 95% CI, 1.10-14.73; P=.035) compared with usual care patients. Study groups did not differ in patient-reported QoL or mood symptoms. CONCLUSIONS: This PC intervention significantly improved rates of discussion and documentation regarding EoL care and delivery of hospice services among patients with MBC, demonstrating that PC can be tailored to address the supportive care needs of patients with longer disease trajectories. ClinicalTrials.gov identifier: NCT02730858.

Referral Relationship: Illuminating the Ways Palliative Care Creates a Holding Environment for Referring Clinicians.

Palliative care supports referring colleagues in multiples ways. This support to referring colleagues is not often explored in the literature, yet the psychological concept that best describes it is the holding environment. The holding environment is the relational space palliative care offers referring clinicians for processing emotions and information. Using the case of Gloria, a patient living with cancer, this article discusses ways palliative care creates a holding environment for her referring oncologist, Dr. Ko. As palliative care clinicians, we create this relational space for referring clinicians when we change the dynamic, accompany the clinician, recognize challenges, establish expectations, and share a clinical second look. This article is the sixth in a series exploring the psychological elements of palliative care.

(Don't) Leave Me Alone: Attachment in Palliative Care.

This is the fifth article in the psychological elements of palliative care series. This series focuses on how key concepts from psychotherapy can be used in the context of palliative care to improve communication and fine tune palliative care interventions. In this article, we discuss attachment-the system by which people form bonds in relationships. The different styles that people have in navigating relationships such as clinician-patient relationships develop from early life onward. Attachment styles are not pathological. But they are helpful to understand because they are a relatively stable factor that impacts how people relate to caregivers like clinicians. Our patients all express unique relational needs to us; some of our patients need closeness and reassurance to feel comfortable, others value independence and space. These needs are highly significant to palliative care clinicians; they inflect our patients' goals of care and values, they modulate our patients' psychosocial needs, and they elucidate the ways our patients respond to a range of therapeutic interventions. Understanding attachment gives us a window into these individual care needs and empowers us to tailor the care we provide for a wide range of patients.