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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.
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Unidades de Cuidados Intensivos , Rondas de Enseñanza , Humanos , Masculino , Femenino , Familia/psicología , Comunicación , Relaciones Profesional-FamiliaRESUMEN
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.
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Comunicación , Enfermería de Cuidados Paliativos al Final de la Vida , Humanos , Investigación Cualitativa , Muerte , EmocionesRESUMEN
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.
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Neoplasias de la Mama , Cuidados Paliativos al Final de la Vida , Neoplasias , Cuidado Terminal , Neoplasias de la Mama/terapia , Femenino , Humanos , Neoplasias/terapia , Cuidados Paliativos , Calidad de VidaRESUMEN
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.
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Planificación Anticipada de Atención , Cuidado Terminal , Humanos , Trabajadores Sociales , Cuidados Paliativos , Comunicación , Servicio de Urgencia en Hospital , Enfermedad Crítica/terapiaAsunto(s)
Reanimación Cardiopulmonar , Toma de Decisiones Conjunta , Virus de la Influenza A , Gripe Humana/diagnóstico , Insuficiencia Respiratoria/etiología , Órdenes de Resucitación , Enfermedad Aguda , Anciano , COVID-19 , Infecciones por Coronavirus/diagnóstico , Infecciones por Coronavirus/terapia , Diagnóstico Diferencial , Resultado Fatal , Humanos , Virus de la Influenza A/aislamiento & purificación , Gripe Humana/complicaciones , Consentimiento Informado , Pulmón/diagnóstico por imagen , Masculino , Cuidados Paliativos , Pandemias , Participación del Paciente , Neumonía Viral/diagnóstico , Neumonía Viral/terapia , Radiografía TorácicaRESUMEN
BACKGROUND: The family and friends (caregivers) of patients with advanced cancer often experience tremendous distress. Although early integrated palliative care (PC) has been shown to improve patient-reported quality of life (QOL) and mood, its effects on caregivers' outcomes is currently unknown. MATERIALS AND METHODS: We conducted a randomized trial of early PC integrated with oncology care versus oncology care alone for patients who were newly diagnosed with incurable lung and noncolorectal gastrointestinal cancers and their caregivers. The early PC intervention focused on addressing the needs of both patients and their caregivers. Eligible caregivers were family or friends who would likely accompany patients to clinic visits. The intervention entailed at least monthly patient visits with PC from the time of diagnosis. Caregivers were encouraged, but not required, to attend the palliative care visits. We used the Hospital Anxiety and Depression Scale (HADS) and Medical Health Outcomes Survey Short-Form to assess caregiver mood and QOL. RESULTS: Two hundred seventy-five caregivers (intervention n = 137; control n = 138) of the 350 patients participated. The intervention led to improvement in caregivers' total distress (HADS-total adjusted mean difference = -1.45, 95% confidence interval [CI] -2.76 to -0.15, p = .029), depression subscale (HADS-depression adjusted mean difference = -0.71, 95% CI -1.38 to -0.05, p = .036), but not anxiety subscale or QOL at week 12. There were no differences in caregivers' outcomes at week 24. A terminal decline analysis showed significant intervention effects on caregivers' total distress (HADS-total), with effects on both the anxiety and depression subscales at 3 and 6 months before patient death. CONCLUSION: Early involvement of PC for patients with newly diagnosed lung and gastrointestinal cancers leads to improvement in caregivers' psychological symptoms. This work demonstrates that the benefits of early, integrated PC models in oncology care extend beyond patient outcomes and positively impact the experience of caregivers. IMPLICATIONS FOR PRACTICE: Early involvement of palliative care for patients with newly diagnosed lung and gastrointestinal cancers leads to improvement in caregivers' psychological symptoms. The findings of this trial demonstrate that the benefits of the early, integrated palliative care model in oncology care extend beyond patient outcomes and positively impact the experience of caregivers. These findings contribute novel data to the growing evidence base supporting the benefits of integrating palliative care earlier in the course of disease for patients with advanced cancer and their caregivers.
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Cuidadores/psicología , Neoplasias Gastrointestinales/psicología , Neoplasias Pulmonares/psicología , Pacientes/psicología , Depresión/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos/psicología , Calidad de VidaRESUMEN
BACKGROUND: Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early after diagnosis on patient-reported outcomes and end-of-life care among ambulatory patients with newly diagnosed disease. METHODS: We randomly assigned patients with newly diagnosed metastatic non-small-cell lung cancer to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone. Quality of life and mood were assessed at baseline and at 12 weeks with the use of the Functional Assessment of Cancer Therapy-Lung (FACT-L) scale and the Hospital Anxiety and Depression Scale, respectively. The primary outcome was the change in the quality of life at 12 weeks. Data on end-of-life care were collected from electronic medical records. RESULTS: Of the 151 patients who underwent randomization, 27 died by 12 weeks and 107 (86% of the remaining patients) completed assessments. Patients assigned to early palliative care had a better quality of life than did patients assigned to standard care (mean score on the FACT-L scale [in which scores range from 0 to 136, with higher scores indicating better quality of life], 98.0 vs. 91.5; P=0.03). In addition, fewer patients in the palliative care group than in the standard care group had depressive symptoms (16% vs. 38%, P=0.01). Despite the fact that fewer patients in the early palliative care group than in the standard care group received aggressive end-of-life care (33% vs. 54%, P=0.05), median survival was longer among patients receiving early palliative care (11.6 months vs. 8.9 months, P=0.02). CONCLUSIONS: Among patients with metastatic non-small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood. As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival. (Funded by an American Society of Clinical Oncology Career Development Award and philanthropic gifts; ClinicalTrials.gov number, NCT01038271.)
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Carcinoma de Pulmón de Células no Pequeñas/terapia , Neoplasias Pulmonares/terapia , Cuidados Paliativos , Calidad de Vida , Afecto , Anciano , Carcinoma de Pulmón de Células no Pequeñas/mortalidad , Carcinoma de Pulmón de Células no Pequeñas/psicología , Carcinoma de Pulmón de Células no Pequeñas/secundario , Depresión/epidemiología , Depresión/prevención & control , Femenino , Humanos , Estimación de Kaplan-Meier , Modelos Lineales , Neoplasias Pulmonares/mortalidad , Neoplasias Pulmonares/psicología , Masculino , Persona de Mediana Edad , Cuidado Terminal , Factores de TiempoRESUMEN
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.
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COVID-19 , Cuidados Paliativos , Adulto , Humanos , Anciano , Estudios Retrospectivos , Estudios Prospectivos , Servicio de Urgencia en Hospital , Planificación de Atención al PacienteRESUMEN
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.
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Comunicación , Geriatras , Humanos , Envejecimiento , Enfermedad Crítica/terapiaRESUMEN
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.
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Cuidados Críticos , Enfermedad Crítica , Humanos , Enfermedad Crítica/terapia , Comunicación , Personal de SaludRESUMEN
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.
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Objetivos , Trabajadores Sociales , Humanos , Anciano , Estudios Prospectivos , Estudios de Factibilidad , Servicio de Urgencia en Hospital , Cuidados Paliativos , ComunicaciónRESUMEN
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.
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Planificación Anticipada de Atención , Comunicación , Hospitales , Humanos , National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division , Cuidados Paliativos , Estados UnidosRESUMEN
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.
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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.
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Cuidados Críticos , Estudiantes de Medicina , Adulto , Comunicación , Enfermedad Crítica/terapia , Documentación , Humanos , Estudiantes de Medicina/psicologíaRESUMEN
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.