Context Studies to determine the decisional control preferences (DCPs) in Hispanic patients receiving palliative care are limited. Objectives The aims of this study were to describe DCPs, disclosure of information, and satisfaction with decision making among Hispanics, and to determine the degree of concordance between patients’ DCPs and their self-reported decisions. Methods We surveyed 387 cancer patients referred to outpatient palliative care clinics in Argentina, Chile, Guatemala, and the U.S. DCPs were measured with the Control Preference Scale, disclosure preferences with the Disclosure of Information Preferences questionnaire, and satisfaction with care with the Satisfaction with Decision Scale. Results In this study, 182 patients (47.6%) preferred shared decisional control, 119 (31.2%) active decisional control, and 81 (21.2%) preferred a passive approach. Concerning diagnosis and prognosis, 345 (92%) patients wanted to know their diagnosis, and 355 (94%) wanted to know their prognosis. Three hundred thirty-seven (87%) patients were satisfied with the decision-making process. DCPs were concordant with the self-reported decision-making process in 264 (69%) patients (weighted kappa, 0.55). Patients’ greater satisfaction with the decision-making process was correlated with older age (P≤0.001) and with a preference for enhanced diagnostic disclosure (P≤0.024). Satisfaction did not correlate with concordance in the decision-making process. Conclusion The vast majority preferred a shared or active decision-making process and wanted information about their diagnosis and prognosis. Older patients and those who wanted to know their diagnosis seemed to be more satisfied with the way treatment decisions were made.

HUSs had more active DCPs than HLAs did. Among HUSs, acculturation did not seem to play a role in DCP determination. Our findings confirm the importance of family participation for both HUSs and HLAs. However, HUSs were less likely to want family members to make decisions on their behalf.

Background Understanding family caregivers’ decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient’s decisional role preferences. There are limited studies on family caregivers’ preferences of the patient’s decisional control at the end of life among Hispanics. Aims To identify Hispanic caregivers’ preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Latin America (HLA) and Hispanic American (HUSA) caregivers. Design We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient’s decisional control were evaluated using the Control Preference Scale. Caregivers’ and patients’ socio-demographic variables, patient performance status, and HUSA patient acculturation level was also collected. Participants A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. Results Caregiver preference of patients decisions control was passive, shared, and active by 10 (11%), 45 (52%) and 32 (37%) HUSA caregivers and 54 (19%), 178 (62%) and 55 (19%) HLA caregivers (p=0.0023). Caregiver acculturation level did not affect the preferences of the HUSA sample (p=0.60). Conclusions Most Hispanic family caregivers preferred the patient to make shared decisions. HLA caregivers preferred more frequently patients to assume a passive decisional role. Acculturation did not influence the preferences of HUSA caregivers.

The ESAS-r is a valid instrument with adequate psychometric characteristics. This version is preferred by patients with advanced cancer. The Spanish version of the ESAS-r can, therefore, replace the use of the ESAS.

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180 Background: Caregivers of cancer patients often face significant physical, social, and emotional distress. There has been limited research on the association between Latino Caregivers’ spirituality/religiosity, meaning, and spiritual pain. Methods: We interviewed 336 Latino Caregivers of patients at Palliative Care clinics in Chile, Guatemala, and the US. Five open-ended questions were asked about spirituality, religion, meaning, and spiritual pain. Answers were transcribed and data analyzed. The analytic framework was based on an interpretive phenomenological analysis. Initial themes were grouped into themes, connections between themes were developed until a thematic rationale was achieved. Results: Latino caregivers’spirituality and religious beliefs were described as an anchor during the painful witnessing of a loved-ones’suffering. Main themes emerged about relationships, inner strength, hope, and acceptance/reconciliation. It was reported as an integrative force to help them to cultivate hope and love walking through their love one’s illness and their journey as caregivers. They expressed meaning as a manifestation of spirituality together with their love to others(spouse, family, others). The presence of Spiritual Pain was common and manifested as suffering and potential loss of loved ones, and broken relationship with Higher Power, that triggered a profound experience of their own pain(both spiritual and emotional) and their own quality of life. This was expressed in physical terms such as “heartache” and “soul ache.” Through discernment, prayer, and relationships with loved-ones, spirituality was integrated as a healing force during the caregiver journey. Spirituality was reported as a substance of hope weaved into an integrative process, as caregivers reconciled the tension of faith with sorrow. Conclusions: Spirituality and religious beliefs are reported as fundamental for Latino Caregivers. Despite these elements, Spiritual Pain is common and affects all aspects of their humanity. Most of them experienced a reconciliation experience with the broken relationships with themselves, with others or with Higher Power.

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