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PURPOSE: Immunotherapy has improved survival for patients with melanoma and non-small cell lung cancer (NSCLC). Yet, as responses vary widely, immunotherapy also introduces challenges in prognostic communication. In this study, we sought to explore how patients and caregivers learned about the goal of immunotherapy and their experience of living with uncertainty. MATERIALS AND METHODS: We conducted a qualitative study of patients with stage III or IV melanoma or stage IV NSCLC within 12 weeks of initiating or 12 months of discontinuing immunotherapy, and their caregivers. We conducted in-depth interviews with participants to explore how they learned about immunotherapy from oncology clinicians and how they experienced uncertainty. We used a framework approach to analyze interview transcripts and synthesized concepts into themes. RESULTS: Forty-two patients and 10 caregivers participated; median age was 67 years and most were male (68%), white (95%), married (61%), and had melanoma (62%). We identified four themes: (1) the oncology team shaped participants' hopeful expectations of immunotherapy, including as a potential cure among those with melanoma; (2) distress related to prognostic uncertainty particularly affected patients who experienced toxicity or progressive disease; (3) patients who did not have long-term responses experienced overwhelming disappointment; and (4) some patients and caregivers had conflicting preferences for prognostic information. Participants provided suggestions to improve education and underscored unmet psychosocial needs. CONCLUSION: Patients and caregivers held optimistic expectations of immunotherapy, which resulted in heightened disappointment among the subset with progression or toxicity. Clinicians should elicit information preferences of both patients and caregivers, as these may be disparate. Our results highlight the need to optimize prognostic communication and support for living with uncertainty among patients receiving immunotherapy.
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BACKGROUND: Although most patients with cancer prefer to know their prognosis, prognostic communication between oncologists and patients is often insufficient. Targeted therapies for lung cancer improve survival yet are not curative and produce variable responses. This study sought to describe how oncologists communicate about prognosis with patients receiving targeted therapies for lung cancer. METHODS: This qualitative study included 39 patients with advanced lung cancer with targetable mutations, 14 caregivers, and 10 oncologists. Semistructured interviews with patients and caregivers and focus groups or interviews with oncologists were conducted to explore their experiences with prognostic communication. One oncology follow-up visit was audio-recorded per patient. A framework approach was used to analyze interview transcripts, and a content analysis of patient-oncologist dialogue was conducted. Themes were identified within each source and then integrated across sources to create a multidimensional description of prognostic communication. RESULTS: Six themes in prognostic communication were identified: Patients with targetable mutations develop a distinct identity in the lung cancer community that affects their information-seeking and self-advocacy; oncologists set high expectations for targeted therapy; the uncertain availability of new therapies complicates prognostic discussions; patients and caregivers have variable information preferences; patients raise questions about progression by asking about physical symptoms or scan results; and patients' expectations of targeted therapy influence their medical decision-making. CONCLUSIONS: Optimistic patient-oncologist communication shapes the expectations of patients receiving targeted therapy for lung cancer and affects their decision-making. Further research and clinical guidance are needed to help oncologists to communicate uncertain outcomes effectively.
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Neoplasias Pulmonares , Neoplasias , Oncologistas , Comunicação , Humanos , Neoplasias Pulmonares/genética , Neoplasias Pulmonares/terapia , Neoplasias/terapia , Relações Médico-Paciente , Medicina de Precisão , PrognósticoRESUMO
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.
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Planejamento Antecipado de Cuidados , Estado Terminal , Comunicação , Estado Terminal/psicologia , Humanos , Atenção Primária à SaúdeRESUMO
Fowers et al. (2017) recently made a general argument for virtues as the characteristics necessary for individuals to flourish, given inherent human limitations. For example, people can flourish by developing the virtue of friendship as they navigate the inherent (healthy) human dependency on others. This general argument also illuminates a pathway to flourishing during the COVID-19 pandemic, the risks of which have induced powerful fears, exacerbated injustices, and rendered life and death decisions far more common. Contexts of risk and fear call for the virtue of courage. Courage has emerged more powerfully as a central virtue among medical personnel, first responders, and essential workers. Longstanding inequalities have been highlighted during the pandemic, calling for the virtue of justice. When important personal and public health decisions must be made, the central virtue of practical wisdom comes to the fore. Wise decisions and actions incorporate the recognition of relevant moral concerns and aims, as well as responding in fitting and practical ways to the specifics of the situation. Practicing courage, justice, and practical wisdom illuminates a path to flourishing, even in a pandemic.
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PURPOSE: Molecularly targeted therapies have revolutionized non-small cell lung cancer (NSCLC) treatment. Many patients with metastatic NSCLC receiving targeted therapy may live several years with incurable cancer. We sought to describe how these metastatic cancer survivors and their caregivers experience uncertainty about the future and identify their unmet supportive care needs. METHODS: We conducted semi-structured interviews with patients with metastatic NSCLC receiving targeted therapy (n = 39) and their caregivers (n = 16). We used a framework approach to code and analyze the qualitative data. RESULTS: Metastatic lung cancer survivors described awareness of their mortality and the possibility that their cancer could progress at any time. Though some found ways to cope, many felt inadequately supported to manage their distress, especially since they were "doing fine medically." Survivors struggled with decisions about working and managing their finances given their uncertain life expectancy and sought trustworthy lung cancer information in plain language. They wished to compare experiences with other patients with their molecular subtype of NSCLC. Participants desired comprehensive cancer care that includes psychosocial support, preparation for the future, and ways to promote their own health, such as through lifestyle changes. CONCLUSIONS: Patients with metastatic NSCLC receiving targeted therapy and their caregivers experience distress related to living with uncertainty and desire more coping support, connection with peers, information, and healthy lifestyle guidance. IMPLICATIONS FOR CANCER SURVIVORS: Patients living with treatable yet incurable cancer and their caregivers are a growing population of cancer survivors. Recognition of their unmet needs may inform the development of tailored support services to help them live well with cancer.
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Sobreviventes de Câncer , Carcinoma Pulmonar de Células não Pequenas , Neoplasias Pulmonares , Carcinoma Pulmonar de Células não Pequenas/terapia , Humanos , Pulmão , Neoplasias Pulmonares/terapia , Qualidade de Vida , Sobreviventes , IncertezaRESUMO
Background: Understanding patients' goals and values is important to ensure goal-concordant care; however, such discussions can be challenging. Little is known about the impact of having these discussions on hospitalists. Objective: To assess the impact on hospitalists of a system that reminds them to have serious illness conversations with their patients identified with potential unmet palliative needs. Design: Two group cohort trial. Setting/Subjects: Single academic center. Internal medicine hospitalist physicians, nurse practitioners, and physician's assistants. Measurements: Before the trial, all participants received serious illness conversation training. During the trial, hospitalists on intervention units received verbal notification when their recently admitted patients were identified using a computer algorithm as having possible unmet palliative needs. Hospitalists on the control unit received no notifications. At baseline and three months, hospitalists completed questionnaires regarding communication skill acquisition, perception of the importance of these conversations, and sense of the meaning gained from having them. Results: Both groups had similar improvements in their self-reported communication skills and experienced a small decline in how important they felt the conversations were. Neither group perceived having the discussions as being affectively harmful to patients. The intervention hospitalists, over time, reported a slight reduction in the sense of meaning they achieved from the conversations. Conclusion: Routinely informing hospitalists when their patients were identified as being at increased risk for unmet palliative needs did not increase the sense of meaning these providers achieved. It is likely the pretrial training accounted for many of the positive outcomes in communication skills observed in both arms of the trial.
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Médicos Hospitalares , Cuidados Paliativos , Comunicação , Humanos , Pacientes , Análise de SistemasRESUMO
Background: Given the national shortage of palliative care specialists relative to the need for their services, engaging nonspecialists is important to ensure patients with serious illness have an opportunity to share their goals and values with their providers. Hospital medicine clinicians are well positioned to conduct these conversations given they care for many medically complex patients. Yet, little is known about the patient experience of inpatient goals and values conversations led by hospitalist teams. Objective: To assess patients' experience and perception of the quality of goals and values conversations. Design/Setting/Participation: Single center, tertiary care, nonrandomized, two group cohort trial of patients hospitalized on general medical inpatient units staffed by hospital medicine clinicians previously trained to conduct serious illness conversations. Intervention: An automated screening tool was used to identify patients at increased risk for unmet palliative needs. The multidisciplinary team was informed of the screen's results on the intervention units but not on the control units. Intervention unit clinicians were asked to consider talking with patients about their goals and values. Results: One hundred thirty patients participated in the study. The intervention patients reported improved quality of communication and fewer anxiety and depression symptoms compared with the control patients. Hospice utilization in addition to emergency department visits and hospital readmissions did not differ between the two groups. Conclusion: This study suggests that informing the care team regarding their patients' potential unmet palliative care needs is associated with patients reporting improved experience of their care without adverse effects on their mood.