Family Perceptions of Virtual Family-Centered Rounds in a Quaternary Cardiac Intensive Care Unit.

Background: Family-centered rounds (FCR) reduce the risk of psychological comorbidities of family members and improve the quality of communication between providers and families. Materials and methods: We conducted a pilot quality improvement study analyzing family perceptions of virtual FCR. Family members of previously admitted cardiac ICU patients who participated in at least one session of virtual FCR between April 2020 and June 2021 at Massachusetts General Hospital were surveyed post-ICU discharge. Results: During the study, 82 family members enrolled and participated in virtual FCR with 29 completing the post-admission telephone survey. Many cardiac ICU patients were male (n = 53), and a majority were discharged home (43%) with the patient's wives being the most common respondents to the questionnaire (n = 18). Across all questions in the survey, more than 75% of the respondents perceived the highest level of care in trust, communication, relationship, and compassion with their provider. Participants perceived the highest level of care in trust (96%), explanation (88%), as well as care and understanding (89%). Conclusions: Family members of cardiac ICU patients positively rated the quality of communication and perceived a high level of trust and communication between their providers on the virtual format.

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.

Aging is not an Illness: Exploring Geriatricians' Resistance to Serious Illness Conversations.

CONTEXT: Serious illness conversations help clinicians align medical decisions with patients' goals, values, and priorities and are considered an essential component of shared decision-making. Yet geriatricians at our institution have expressed reluctance about the serious illness care program. OBJECTIVES: We sought to explore geriatricians' perspectives on serious illness conversations. METHODS: We conducted focus groups with interprofessional stakeholders in geriatrics. RESULTS: Three key themes emerged that help explain the reluctance of clinicians caring for older patients to have or document serious illness conversations: 1) aging in itself is not a serious illness; 2) geriatricians often focus on positive adaptation and social determinants of health and in this context, the label of "serious illness conversations" is perceived as limiting; and 3) because aging is not synonymous with illness, important goals-of-care conversations are not necessarily documented as serious illness conversations until an acute illness presents itself. CONCLUSION: As institutions work to create system-wide processes for documenting conversations about patients' goals and values, the unique communication preferences of older patients and geriatricians should be specifically considered.

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.

Goals of Care Conversations Documented By an Embedded Emergency Department-Palliative Care Team During COVID.

Background: There has been growing interest around integrating palliative care (PC) into emergency department (ED) practice but concern about feasibility and impact. In 2020, as the COVID pandemic was escalating, our hospital's ED and PC leadership created a new service of PC clinicians embedded in the ED. Objectives: To describe the clinical work of the embedded ED-PC team, in particular what was discussed during goals of care conversations. Design: Prospective patient identification followed by retrospective electronic health record chart extraction and analysis. Settings/Subjects: Adult ED patients in an academic medical center in the United States. Measurements/Results: The embedded ED-PC team saw 159 patients, whose mean age was 77.5. Nearly all patients were admitted, 48.0% had confirmed or presumed COVID, and overall mortality was 29.1%. Of the patients seen, 58.5% had a serious illness conversation documented as part of the consult. The most common topics addressed were patient (or family) illness understanding (96%), what was most important (92%), and a clinical recommendation (91%). Clinicians provided a prognostic estimate in 57/93 (61.3%) of documented discussions. In the majority of cases where prognosis was discussed, it was described as poor. Conclusion: Specialist PC clinicians embedded in the ED can engage in high-quality goals of care conversations that have the potential to align patients' hospital trajectory with their preferences.

Patterns of Communication About Serious Illness in the Years, Months, and Days before Death.

Background: Communication with patients and families about serious illness impacts quality of life and helps facilitate decision-making. Objective: To elucidate the pattern of communication about serious illness for patients who have died in an inpatient setting. Design: Three hundred patients from the Swedish Registry of Palliative Care 2015-2017 were randomly selected for manual chart review. Setting: Patients who died in a palliative care, oncology, or internal medicine unit in Sweden were selected. Measurements: We report on the frequency of conversations at three time points, 6 months or longer before death ("Years"), 15 days-6 months before death ("Months"), and 0-14 days before death ("Days"). We also report the timing of the conversation about dying. Results: A total of 249 patients were included after exclusions; they had an average of 2.1 conversations (range 1-6). The first conversation took place a median of 53 days before death and the last conversation took place a median of 9 days before death. Separate conversations with the next of kin took place a median of two days before death. We could verify a conversation about dying in only 156/249 (63%) medical records. Conclusions: Communication about serious illness between clinicians, patients, and families occurs iteratively over a period before death. Measuring the quality of communication about serious illness using a years, months, and days framework may help ensure that patients and families have sufficient information for medical and personal decision making.

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.

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.

Patient Perspectives on Serious Illness Conversations in Primary Care.

Background: The Serious Illness Care Program has been shown to improve quality and feasibility of value-based end-of-life conversations in primary care. Objectives: To elicit patients' perspectives on serious illness conversations conducted by primary care clinicians. Subjects and Methods: Telephone interviews were conducted with patients at an academic center in the United States, who had a recent serious illness conversation with their primary care clinician. Interviews were audio-recorded and qualitatively analyzed using thematic analysis. Results: A total of eleven patients were enrolled. We identified three major themes: (1) positive emotional experiences are facilitated by established patient-clinician relationships and/or clinicians' skills in navigating emotional challenges, (2) patients appreciate a personalized conversation, and (3) clinicians should orchestrate the experience of the conversation, from preparation through follow-up. Conclusion: Patients appreciate having serious illness conversations in the primary care setting. Future efforts can be focused on improving clinicians' skills in navigating emotional challenges during conversations and implementing system changes to optimize orchestration.

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.

Turning the Lens Inward: The Psychological Elements of Clinician Well Being.

This is the seventh entry in the Psychological Elements of Palliative Care (PEPC) series. Previous articles have focused on the psychological elements of the care we provide patients and the relationships we build with our referring clinician colleagues. In this entry, we focus on how the PEPC also impact clinician well being. The PEPC are bidirectional: we impact patients, but patients also impact us. The reactions that we have to patients and the boundaries we set around the care we provide are two examples of psychological factors of care that can influence our well being. Creating spaces to explore and reflect on the psychological impact of the clinical care we provide is a key component of wellness. Such spaces vary in their configuration, but all share the opportunity to self-reflect and to experience emotional validation, normalization, and reality testing from peers or mentors. In mental health training, clinical supervision is one common format for creating such a space. While this can be replicated in the palliative care setting, other strategies include integrating a psychological orientation into interdisciplinary team meetings, creating peer support or process groups, and creating small groups within teams for longitudinal self-reflection.

(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.

One Hospital's Response to the Institute of Medicine Report, "Dying in America".

BACKGROUND: In response to the Institute of Medicine (IOM) report, Dying in America, we undertook an institution wide effort to improve the experience of patients and families facing serious illness by engaging leadership and developing a program to promote the practice of generalist palliative care. MEASURES: The impact of the program was measured with process measures related to its' three parts. INTERVENTION: We developed a three-part generalist palliative care program that focuses on 1) instructional design, 2) advance care planning, and 3) engagement. OUTCOMES: Over four years, the program trained 51 interprofessional clinicians in a two-week intensive palliative care course and 1,541 interprofessional clinicians in a 90-150 min skills-based training. Clinicians documented 15,791 serious illness conversations. Zoom community engagement sessions were attended by 411 live viewers, and subsequently, 1918 YouTube views. Additionally, we report on the impact of the COIVD-19 crisis on our efforts. Early in the pandemic, over two months, 464 interprofessional clinicians documented 5,168 conversations with patients. CONCLUSION/LESSONS LEARNED: A broad based strategy resulted wide institutional engagement with serious illness care.

Improving Serious Illness Communication: Testing the Serious Illness Care Program with Trainees.

BACKGROUND: Early conversations about patients' goals and values improve care, but clinicians struggle to conduct them. The systems-based Serious Illness Care Program (SICP) helps clinicians have more, better, and earlier conversations. Central to this approach is a clinician conversation guide for patient encounters. While the SICP works for practicing clinicians, it has not been tested with medical trainees. INTERVENTION: We adapted the SICP training to emphasize assessing prognostic awareness and responding to emotion. We developed a 2.5-hour SICP workshop for medical students and medical interns that included large- and small-group work, practice with an actor, and interdisciplinary clinician facilitators. We trained 81 students and 156 interns and obtained anonymous quantitative and qualitative feedback. OUTCOMES: Eighty-six percent of students and 91% of residents rated the session as "very good" or "excellent" and >90% of all learners would either recommend this training or intended to apply this to their practice. Post-session learner confidence increased in all communication skills. Learners said the training provided a helpful framework and useful language for these conversations. Resident documentation of serious illness conversations in the medical record increased dramatically during the year following training commencement. CONCLUSIONS: Grounded in principles of adult learning theory, this training was rated highly by trainees and resulted in demonstrable practice change. These early learners were more flexible and willing to try this approach than practicing clinicians who tend to resist or revert to old habits. A Guide represents a new paradigm for teaching communication skills and is valued by early learners.

Development of a Prognostic Awareness Impact Scale for Patients with Advanced Cancer.

Background: No reliable instruments exist to measure prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer. Methods: We developed the Prognostic Awareness Impact Scale (PAIS) using a qualitative approach. During phase 1, we convened a working group with a transdisciplinary team of clinicians from oncology (n = 2), psychology (n = 2), psychiatry (n = 1), palliative care (n = 3), and survey development (n = 1) to identify key domains of PAIS. Using a consensus-driven process, the team generated an item bank for each domain. During phase 2, we conducted cognitive interviews with 39 patients with advanced cancer to assess the understandability of the PAIS. Results: The working group developed a conceptual framework for PAIS, identifying three domains: (1) cognitive understanding of prognosis (capacity to understand intellectually one's prognosis), (2) emotional coping (capacity to process prognostic uncertainty and terminal prognosis), and (3) adaptive response (capacity to use prognostic awareness to inform life decisions). Cognitive interviews revealed that patients had an accurate understanding of most PAIS items. Patients reported difficulty with binary response options for questions pertaining to emotional coping. They expressed difficulty answering numerous questions regarding their cognitive understanding of their prognosis. We revised the PAIS by (1) replacing binary response options with ordinal agreement scales; and (2) reducing the number of items focused on cognitive understanding of prognosis. Conclusion: We developed a conceptual framework to capture prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer using the PAIS. Future work should focus on validating the PAIS by testing its psychometric properties.

Foundations for Psychological Thinking in Palliative Care: Frame and Formulation.

This is the second article in the psychological elements of palliative care (PEPC) 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 introduce two foundational concepts: frame and formulation. The frame is the context in which care is delivered; it includes concrete aspects of clinical care such as where it takes place, for how long, and with what frequency. It also includes the conceptual aspects of care, including the specific roles of the clinician and the patient, emergency contingencies, and the extent to which emotion is invited within the clinical encounter. Defining and discussing the frame with patients are especially important in palliative care because of the strong emotions that arise when talking about serious illness and because many patients may not be familiar with palliative care before they are in care. Formulation is the process by which we make judgment-neutral psychological hypotheses to understand the feelings and behaviors of our patients. It is an ongoing, dynamic process whereby as we learn more about our patients, we integrate that data to improve our explanatory model of who they are. This helps us tailor our interventions to meet their unique needs and respect their life experiences, aptitudes, and vulnerabilities. Both concepts are foundational PEPC; understanding them will prepare readers to continue to the next four articles in the series.