How, when, and why individuals with stage IV cancer seen in an outpatient setting are referred to palliative care: a mixed methods study.

PURPOSE: Early palliative care (PC) for individuals with advanced cancer improves patient and family outcomes and experience. However, it is unknown when, why, and how in an outpatient setting individuals with stage IV cancer are referred to PC. METHODS: At a large multi-specialty group in the USA with outpatient PC implemented beginning in 2011, clinical records were used to identify adults diagnosed with stage IV cancer after January 1, 2012 and deceased by December 31, 2017 and their PC referrals and hospice use. In-depth interviews were also conducted with 25 members of medical oncology, gynecological oncology, and PC teams and thematically analyzed. RESULTS: A total of 705 individuals were diagnosed and died between 2012 and 2017: of these, 332 (47%) were referred to PC, with 48.5% referred early (within 60 days of diagnosis). Among referred patients, 79% received hospice care, versus 55% among patients not referred. Oncologists varied dramatically in their rates of referral to PC. Interviews revealed four referral pathways: early referrals, referrals without active anti-cancer treatment, problem-based referrals, and late referrals (when stopping treatment). Participants described PC's benefits as enhancing pain/symptom management, advance care planning, transitions to hospice, end-of-life experiences, a larger team, and more flexible patient care. Challenges reported included variation in oncologist practices, patient fears and misconceptions, and access to PC teams. CONCLUSION: We found high rates of use and appreciation of PC. However, interviews revealed that exclusively focusing on rates of referrals may obscure how referrals vary in timing, reason for referral, and usefulness to patients, families, and clinical teams.

Clocks Moving at Different Speeds: Cultural Variation in the Satisfaction With Wait Time for Outpatient Care.

OBJECTIVE: To explore racial/ethnic differences in satisfaction with wait time of scheduled office visits by comparing electronic health record (EHR)-based, patient-reported, and patient satisfaction with wait time STUDY SETTING: : A large multispecialty ambulatory care organization in Northern California. Patient experience surveys were collected between 2010 and 2014. Surveys were mailed after randomly selected nonurgent visits. Returned survey data were linked to EHR data for surveyed visits. STUDY DESIGN: Observational, retrospective study designed to assess differences in patient-reported wait time, wait-time satisfaction, and actual EHR-recorded wait time with respect to self-reported race/ethnicity. Multivariate regression models with provider random effects were used to evaluate differences. RESULTS: Asian subgroups (Chinese, Asian Indian, Filipino, Japanese, Korean, and Vietnamese) and Latinos gave poorer ratings for wait time than non-Hispanic whites (NHWs). The average wait time reported by Asians was longer than that reported by NHWs. On the basis of EHR data, however, no minority group was likely to wait longer, and all, except for Japanese (10%), were more likely to be late for the appointment (16%: Filipino and 23%: Asian Indian), than NHWs (13%). CONCLUSIONS: Given actual wait times, Asians perceive longer wait time and were less satisfied with wait times. Asians may have different expectations about wait time at the clinic.

Evolving Goals of Care Discussions as Described in Interviews With Individuals With Advanced Cancer and Oncology and Palliative Care Teams.

BACKGROUND: Individuals with advanced cancer and their families have negative end-of-life experiences when the care they receive is not aligned with their values and preferences. OBJECTIVE: To obtain in-depth information on how patients with advanced cancer and the oncology and palliative care (PC) clinicians who care for them discuss goals of care (GoC). DESIGN: The research team conducted in-depth interviews and qualitative data analysis using open coding to identify how perspectives on GoC discussions vary by stage of illness, and experience with PC teams. SETTING/SUBJECTS: Twenty-five patients and 25 oncology and PC team members in a large multi-specialty group in Northern California. RESULTS: At the time of diagnosis participants described having establishing GoC conversations about understanding the goal of treatment (e.g. to extend life), and prognosis ("How much time do I have?"). Patients whose disease progressed or pain/symptoms increased reported changing GoC conversations about stopping treatment, introducing hospice care, prognostic awareness, quality of life, advance care planning, and end-of-life planning. Participants believed in the fluidity of prognosis and preferences for prognostic communication varied. Patients appreciated how PC teams facilitated changing GoC conversations. Timing was challenging; some patients desired earlier conversations and PC involvement, others wanted to wait until things were "going downhill." CONCLUSION: Patients and clinical teams acknowledged the complexity and importance of GoC conversations, and that PC teams enhanced conversations. The frequency, quality, and content of GoC conversations were shaped by patient receptivity, stage of illness, clinician attitudes and predispositions toward PC, and early integration of PC.