"I think that she would have wanted. . .": Qualitative interviews with bereaved caregivers reveal complexity in measuring goal-concordant care at the end of life.

BACKGROUND: Experts consider goal-concordant care an important healthcare outcome for individuals with serious illness. Despite their relationship to the patient and knowledge about the patient's wishes and values, little is known about bereaved family caregivers' perceptions of how end-of-life care aligns with patient goals and preferences. AIM: To understand caregivers' perceptions about patients' care experiences, the extent to which care was perceived as goal-concordant, and the factors that contextualized the end-of-life care experience. DESIGN: Qualitative interview study employing a semi-structured interview guide based on the National Health and Aging Trends Survey end-of-life planning module. Template analysis was used to identify themes. SETTING/PARTICIPANTS: Nineteen recently bereaved family caregivers of people with serious illness in two academic medical centers in the Northeastern United States. RESULTS: Most caregivers reported goal-concordant care, though many also recalled experiences of goal discordance. Three themes characterized care perceptions and related to perceived quality: communication, relationships and humanistic care, and care transitions. Within communication, caregivers described the importance of clear communication, inadequate prognostic communication, and information gaps that undermined caregiver confidence in decision making. Patient-clinician relationships enriched care and were considered higher-quality when felt to be humanistic. Finally, care transitions impacted goal discordance when marked by logistical barriers, a need to establish relationships with new providers, inadequate information transfer, and poor care coordination. CONCLUSIONS: Bereaved caregivers commonly rated care as goal-concordant while also identifying areas of disappointing and low-quality care. Communication, relationships and humanistic care, and care transitions are modifiable quality improvement targets for patients with advanced cancer.

What is empathy? Oncology patient perspectives on empathic clinician behaviors.

BACKGROUND: Oncology patients and physicians value empathy because of its association with improved health outcomes. Common measures of empathy lack consistency and were developed without direct input from patients. Because of their intense engagement with health care systems, oncology patients may have unique perspectives on what behaviors signal empathy in a clinical setting. METHODS: As part of a cross-sectional study of patient perspectives on clinician empathy at an academic cancer center in the northeastern United States, the authors solicited up to 10 free-text responses to an open-ended question about what clinician behaviors define empathy. RESULTS: The authors categorized open-ended responses from 89 oncology patients into 5 categories representing 14 themes. These categories were relationship sensitivity, focus on the whole person, communication, clinician attributes, and institutional resources and care processes. Frequently represented themes, including listening, understanding, and attention to emotions and what matters most, aligned with existing measures of empathy; behaviors that were not well represented among existing measures included qualities of information sharing and other communication elements. Patients also associated clinician demeanor, accessibility, and competence with empathy. CONCLUSIONS: Oncology patients' perspectives on empathy highlight clinician behaviors and attributes that may help to refine patient experience measures and may be adopted by clinicians and cancer centers to enhance patient care and outcomes. High-quality communication skills training can promote active listening and paying attention to the whole person. A system-level focus on delivering empathic care may improve patients' experiences and outcomes. LAY SUMMARY: Oncology patients' responses to an open-ended question about empathic clinician behavior have revealed insights into a variety of behaviors that are perceived as demonstrative of empathy. These include behaviors that imply sensitivity to the clinician-patient relationship, such as listening and understanding and attention to the whole person. Participants valued caring communication and demeanor and clinician accessibility. Perspective taking was not common among answers. Many existing measures of clinical care quality do not include the behaviors cited by patients as empathic. These results can inform efforts to refine quality measures of empathy-associated behaviors in clinical practice. Cancer centers can use skills training to improve elements of communication.

Early serious illness communication in hospitalized patients: A study of the implementation of the Speaking About Goals and Expectations (SAGE) program.

BACKGROUND: Early conversations about patients' goals and values in advancing serious illness (serious illness conversations) can drive better healthcare. However, these conversations frequently happen during acute illness, often near death, without time to realize benefits of early communication. METHODS: The Speaking About Goals and Expectations (SAGE) Program, adapted from the Serious Illness Care Program, is a multicomponent intervention designed to foster earlier and more comprehensive serious illness conversations for patients admitted to the hospital. We present a quality improvement study of the SAGE Program assessing older adults admitted to a general medicine service at the Brigham & Women's Hospital in Boston, Massachusetts. Our primary outcomes included the proportion of patients with at least one documented conversation, the timing between first conversation documented and death, the quality of conversations, and their interprofessional nature. Secondary outcomes assessed evaluations of the training and hospital utilization. RESULTS: We trained 37 clinicians and studied 133 patients split between the SAGE intervention and a comparison population. Intervention patients were more likely to have documented serious illness conversations (89.1% vs. 26.1%, p < 0.001); these conversations occurred earlier (mean of 598.9 vs. 180.8 days before death, p < 0.001) and included more key elements of conversation (mean of 6.56 vs. 1.78, p < 0.001). CONCLUSIONS: This study demonstrated significant differences in the frequency and quality of serious illness conversations completed earlier in the illness course for hospitalized patients. IMPLICATIONS: Programs designed to drive serious illness conversations earlier in the hospital may be an effective way to improve care for patients not reached in the ambulatory setting. LEVEL OF EVIDENCE: Prospectively designed trial, non-randomized sample.