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.

Adapting the serious illness conversation guide for use in the emergency department by social workers.

OBJECTIVE: Although important treatment decisions are made in the Emergency Department (ED), conversations about patients' goals and values and priorities often do not occur. There is a critical need to improve the frequency of these conversations, so that ED providers can align treatment plans with these goals, values, and priorities. The Serious Illness Conversation Guide has been used in other care settings and has been demonstrated to improve the frequency, quality, and timing of conversations, but it has not been used in the ED setting. Additionally, ED social workers, although integrated into hospital and home-based palliative care, have not been engaged in programs to advance serious illness conversations in the ED. We set out to adapt the Serious Illness Conversation Guide for use in the ED by social workers. METHODS: We undertook a four-phase process for the adaptation of the Serious Illness Conversation Guide for use in the ED by social workers. This included simulated testing exercises, pilot testing, and deployment with patients in the ED. RESULTS: During each phase of the Guide's adaptation, changes were made to reflect both the environment of care (ED) and the clinicians (social workers) that would be using the Guide. A final guide is presented. SIGNIFICANCE OF RESULTS: This report presents an adapted Serious Illness Conversation Guide for use in the ED by social workers. This Guide may provide a tool that can be used to increase the frequency and quality of serious illness conversations in the 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.

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.

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.

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.

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.

The Meaning of Together: Exploring Transference and Countertransference in Palliative Care Settings.

Establishing an empathic clinical relationship is a cornerstone of high-quality palliative care. More than simply approaching patients with a pleasant affect or "being nice," we propose that skilled clinicians routinely employ distinct psychological elements when creating effective bonds with seriously ill patients and their families. Palliative care involvement has been shown to improve a variety of outcomes for patients with serious cancer, and yet the components of this salutary effect are still becoming known in the literature. Many believe that a successful interpersonal relationship is the essential factor. In this article, we will apply the psychological constructs of transference and countertransference to the unique arena of palliative care communication. Although most palliative care clinicians are not mental health clinicians and have not received training or certification in psychotherapeutic techniques, there are elements from these frameworks that may be advantageously applied. We will draw on sources from psychology and psychiatry to explore the in-between spaces of clinical encounter. Using the case of Gloria, a patient living with cancer drawn from our clinical experience, we will offer adapted definitions and novel applications of these psychological concepts. Branching from the theory to everyday practice, we will then offer practical suggestions to guide the palliative care clinician in recognizing and managing strong countertransference reactions. This article is the third installment of a series on the psychological elements of palliative care.

Exploring the Psychological Aspects of Palliative Care: Lessons Learned from an Interdisciplinary Seminar of Experts.

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. "Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care" was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the Journal of Palliative Medicine on a monthly basis during the fall and winter of 2021-2022.

Understanding and Addressing the Role of Coping in Palliative Care for Patients With Advanced Cancer.

Advanced cancer, with its considerable physical symptoms and psychosocial burdens, represents an existential threat and major stressor to patients and their caregivers. In response to such stress, patients and their caregivers use a variety of strategies to manage the disease and related symptoms, such as problem-focused, emotion-focused, meaning-focused, and spiritual/religious coping. The use of such coping strategies is associated with multiple outcomes, including quality of life, symptoms of depression and anxiety, illness understanding, and end-of-life care. Accumulating data demonstrate that early palliative care, integrated with oncology care, not only improves these key outcomes but also enhances coping in patients with advanced cancer. In addition, trials of home-based palliative care interventions have shown promise for improving the ways that patients and family caregivers cope together and manage problems as a dyad. In this article, we describe the nature and correlates of coping in this population, highlight the role of palliative care to promote effective coping strategies in patients and caregivers, and review evidence supporting the beneficial effects of palliative care on patient coping as well as the mechanisms by which improved coping is associated with better outcomes. We conclude with a discussion of the limitations of the state of science, future directions, and best practices on the basis of available evidence.

DNR, DNI, and DNO?

The addition of a do-not-operate (DNO) section to current medical orders for life-sustaining treatment (MOLST) and physician orders for life-sustaining treatment (POLST) medical order forms would more completely document patients' wishes for invasive interventions at the end of life. We propose a modification of the MOLST and POLST forms, in addition to hospital and electronic medical records, to include a DNO section, in addition to preexisting do-not-resuscitate (DNR) and do-not-intubate (DNI) orders, with the goal of reducing suffering from nonbeneficial surgical interventions in patients with severe illness at the end of life.

Role of Patient Coping Strategies in Understanding the Effects of Early Palliative Care on Quality of Life and Mood.

Purpose The early integration of oncology and palliative care (EIPC) improves quality of life (QOL) and mood for patients with advanced cancer. However, the mechanisms by which EIPC benefits these outcomes remain unclear. We therefore examined whether EIPC improved patients' coping strategies and if changes in coping accounted for intervention effects on QOL and depressive symptoms. Patients and Methods For this secondary analysis of an EIPC trial, we examined data from 350 patients with newly diagnosed incurable lung or GI cancer. Participants completed assessments of QOL (Functional Assessment of Cancer Therapy-General), depressive symptoms (Patient Health Questionnaire-9), and coping (Brief COPE) at baseline and 24 weeks. We used linear regression to test intervention effects on use of coping strategies and mediation regression models with bias-corrected bootstrapping to examine whether improvements in coping mediated the effects of early palliative care on patient-reported outcomes. Results Compared with usual oncology care, EIPC significantly increased patient use of approach-oriented coping strategies ( B = 1.09; SE = 0.44; P = .01) and slightly reduced use of avoidant strategies ( B = -0.44; SE = 0.23; P = .06) from baseline to 24 weeks. Also, the increased use of approach-oriented coping and reduction in avoidant coping were associated with higher QOL and lower depressive symptoms at 24 weeks. The positive changes in approach-oriented coping, but not avoidant coping, significantly mediated the effects of EIPC on QOL (indirect effect, 1.27; 95% CI, 0.33 to 2.86) and depressive symptoms (indirect effect, -0.39; 95% CI, -0.87 to -0.08). Conclusion Patients with incurable cancer who received EIPC showed increased use of approach-oriented coping, which was associated with higher QOL and reduced depressive symptoms. Palliative care may improve these outcomes by providing patients with the skills to cope effectively with life-threatening illness.

Coping and Prognostic Awareness in Patients With Advanced Cancer.

Purpose Patients' understanding of their illness is key for making informed treatment decisions, yet studies suggest an association between prognostic awareness and worse quality of life (QOL) and mood among patients with advanced cancer. We sought to explore the relationships among prognostic awareness, coping, QOL, and mood in patients with newly diagnosed, incurable cancer. Methods We assessed patients' self-reported health status and treatment goal (Prognosis and Treatment Perceptions Questionnaire), coping (Brief COPE), QOL (Functional Assessment of Cancer Therapy-General), and mood (Hospital Anxiety and Depression Scale) within 8 weeks of incurable lung or GI cancer diagnosis. We used linear regression to examine associations and interaction effects among patients' health status and treatment goal, coping strategies, QOL, and mood. Results Patients who reported a terminally ill health status had worse QOL (unstandardized coefficient [B] = -6.88; P < .001), depression (B = 1.60; P < .001), and anxiety (B = 1.17; P = .007). Patients who reported their oncologist's treatment goal was "to cure my cancer" had better QOL (B = 4.33; P = .03) and less anxiety (B = -1.39; P = .007). We observed interaction effects between self-reported health status and treatment goal and certain coping strategies. Specifically, subgroup analyses showed that greater use of positive reframing was related to better QOL (B = 2.61; P < .001) and less depression (B = -0.78; P < .001) among patients who reported a terminally ill health status. Active coping was associated with better QOL (B = 3.50; P < .001) and less depression (B = -1.01; P < .001) among patients who acknowledged their oncologist's treatment goal was not "to cure my cancer." Conclusion Prognostic awareness is related to worse QOL and mood in patients with newly diagnosed, incurable cancer; however, the use of certain coping strategies may buffer these relationships. Interventions to improve patients' prognostic awareness should seek to cultivate more adaptive coping strategies in order to enhance QOL and mood.

Clinician roles in early integrated palliative care for patients with advanced cancer: a qualitative study.

BACKGROUND: Early palliative care provides better quality of life, increased prognostic awareness, and even improved survival for patients with advanced cancer but how the integrated care model achieves these outcomes has not been completely explained. METHODS: To better understand the clinical approach to early outpatient care from the clinicians' perspective, we conducted focus groups with the palliative care clinicians who had participated in a randomized trial of early palliative care for metastatic lung cancer. RESULTS: Clinicians described their role in providing early palliative care as having three distinct roles in the outpatient setting: (1) managing symptoms to improve functional status and as a bridge to other issues; (2) engaging patients in emotional work to facilitate coping, accepting, and planning; and (3) interpreting the oncologist for the patient and the patient for the oncologist. CONCLUSIONS: These data lay the foundation for developing training programs for clinicians in early integrated palliative care.