I´m a Palliative Care Physician with 12 years of clinical experience. I`ve started and developed two important Palliative Care Units in Guatemala at the Cancer Institute and at the Spanish Beneficial Hospital. Also started the first Palliative Care mandatory course in a private faculty of medicine and have worked as a collaborator to improve access to opioid analgesics in Guatemala.
Objectives: The purpose of this multicenter study was to characterize the association between spi... more Objectives: The purpose of this multicenter study was to characterize the association between spirituality, religiosity, spiritual pain, symptom distress, coping, and quality of life (QOL) among Latin American advanced cancer patients. Methods: Three hundred twenty-five advanced cancer patients from palliative care clinics in Chile, Guatemala, and the United States completed validated assessments: Faith, Importance and Influence, Community, and Address (FICA) (spirituality/religiosity), Edmonton Symptom Assessment Scale-Financial/Spiritual (ESAS-FS), including spiritual pain, Penn State Worry Questionnaire-Abbreviated (PSWQ-A), Center for Epidemiologic Studies Depression Scale (CES-D), Brief-coping strategies (COPE) and Brief religious coping (RCOPE) and RCOPE, respectively, and Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being, Expanded version (FACIT-Sp-Ex). Results: Median age: 58 years (range: 19-85); 60% female; and 62% Catholic and 30% Christian, but not Catholic. Three hundred fifteen patients (97%) considered themselves spiritual and 89% religious, with median intensities of 7 (interquartile range [IQR]: 5-10) and 7 (5-9), respectively (0-10 scale, 10 = "very much"). Median importance of spirituality/religiosity was 10 (IQR: 8-10). The frequency and associations between spirituality/religiosity and various items were as follows: helps to cope with illness (98%; r = 0.66303; p < 0.0001), positive effect on physical symptoms (81%; r = 0.42067; p < 0.0001), and emotional symptoms (84%; r = 0.16577; p < 0.0001). One hundred ninety-five patients (60%) reported that their spiritual/religious needs had not been supported by the medical team. Spiritual pain was reported in 162/311 patients (52%), with median intensity of 6 (IQR: 5-8). Spiritual pain was associated with pain (p = 0.0225), depression (p < 0.0001), anxiety (p < 0.0001), worry (p < 0.001), behavioral disengagement (p = 0.0148), FACIT-Sp-Ex score (p = 0.0002), and negative RCOPE (p < 0.0001). Significance of Results: Spirituality and religiosity are frequent, intense, and rarely addressed among Latin American patients. Spirituality/religiosity was associated with positive COPE and higher QOL. Spiritual pain was also frequent and associated with physical and psychosocial distress. These patients need increased spiritual/religious support.
Background: Understanding family caregivers’ decisional role preferences is important for communi... more 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 decision 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 Hispanic Latin American and Hispanic American 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 decision control were evaluated using the Control Preference Scale. Caregivers’ and patients’ sociodemographic variables, patient performance status, and Hispanic American patient acculturation level were also col...
246 Background: The associations between spirituality (S), religiosity (R), spiritual pain (SP), ... more 246 Background: The associations between spirituality (S), religiosity (R), spiritual pain (SP), symptom, coping and quality of life (QOL) have not been well characterized in LAAdCa. The main purpose of this Multicenter study was to analyze these associations. Methods: We interviewed 325 LAAdCa at a Palliative Care clinic in Chile, Guatemala, and USA. They completed FICA (S/R assessment), ESAS–FS (including SP), PSWQ (Worry), B-COPE and B-R-COPE (coping), FACIT-sp-ex (Spiritual Well-being). Results: Median age 58 (range: 19-85), 60% women, 62% Catholic, 30% Christian not Catholics, and 2% with no religion. 97% of LAAdCa considered themselves spiritual and 89% religious, median 7(IQR: 5-10) and 7(5-9) respectively. Median Importance of S/R in life (score 0 = none, 10 = very important) was 10 (IQR:8-10). The frequency and associations among the importance of S/R and different items were: helps them to cope with their illness (98%, r = 0.73; p < 0.0001), is a source of strength and ...
9063 Background: To determine whether preferences in frequency of passive decision making differ ... more 9063 Background: To determine whether preferences in frequency of passive decision making differ between Hispanic patients from Latin America (HLA) and Hispanic-American (HA) patients. Methods: We conducted a survey of advanced cancer Hispanic patients referred to outpatient palliative care clinics in the U.S, Chile, Argentina, and Guatemala. Information on demographic variables, PS,andMarin Acculturation Assessment Tool (only U.S. patients) was collected. Decision-making preference was evaluated by the decision-making assessment tool. Results: A total of 387 patients with advanced cancer were surveyed: 91 (24%) in the US, 100 (26%) in Chile, 94 (25%) in Guatemala, and 99 (26%) in Argentina. Median age was 59 years, and 61% were female. HLA preferred passive decision-making strategies significantly more frequently with regard to involvement of the family (24% versus 10%, p=0.009) or the physician (35% versus 26%, p<0.001), even after controlling for age and education (OR 3.8, p&l...
180 Background: Caregivers of cancer patients often face significant physical, social, and emotio... more 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 the...
Studies to determine the decisional control preferences (DCPs) in Hispanic patients receiving pal... more Studies to determine the decisional control preferences (DCPs) in Hispanic patients receiving palliative care are limited. 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; DCPs and their self-reported decisions. 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. In this study, 182 patients (47.6%) preferred shared decisional control, 119 (31.2%) preferred active decisional control, and 81 (21.2%) preferred a passive approach. Concerning their 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; 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. 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.
Objectives: The purpose of this multicenter study was to characterize the association between spi... more Objectives: The purpose of this multicenter study was to characterize the association between spirituality, religiosity, spiritual pain, symptom distress, coping, and quality of life (QOL) among Latin American advanced cancer patients. Methods: Three hundred twenty-five advanced cancer patients from palliative care clinics in Chile, Guatemala, and the United States completed validated assessments: Faith, Importance and Influence, Community, and Address (FICA) (spirituality/religiosity), Edmonton Symptom Assessment Scale-Financial/Spiritual (ESAS-FS), including spiritual pain, Penn State Worry Questionnaire-Abbreviated (PSWQ-A), Center for Epidemiologic Studies Depression Scale (CES-D), Brief-coping strategies (COPE) and Brief religious coping (RCOPE) and RCOPE, respectively, and Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being, Expanded version (FACIT-Sp-Ex). Results: Median age: 58 years (range: 19-85); 60% female; and 62% Catholic and 30% Christian, but not Catholic. Three hundred fifteen patients (97%) considered themselves spiritual and 89% religious, with median intensities of 7 (interquartile range [IQR]: 5-10) and 7 (5-9), respectively (0-10 scale, 10 = "very much"). Median importance of spirituality/religiosity was 10 (IQR: 8-10). The frequency and associations between spirituality/religiosity and various items were as follows: helps to cope with illness (98%; r = 0.66303; p < 0.0001), positive effect on physical symptoms (81%; r = 0.42067; p < 0.0001), and emotional symptoms (84%; r = 0.16577; p < 0.0001). One hundred ninety-five patients (60%) reported that their spiritual/religious needs had not been supported by the medical team. Spiritual pain was reported in 162/311 patients (52%), with median intensity of 6 (IQR: 5-8). Spiritual pain was associated with pain (p = 0.0225), depression (p < 0.0001), anxiety (p < 0.0001), worry (p < 0.001), behavioral disengagement (p = 0.0148), FACIT-Sp-Ex score (p = 0.0002), and negative RCOPE (p < 0.0001). Significance of Results: Spirituality and religiosity are frequent, intense, and rarely addressed among Latin American patients. Spirituality/religiosity was associated with positive COPE and higher QOL. Spiritual pain was also frequent and associated with physical and psychosocial distress. These patients need increased spiritual/religious support.
Background: Understanding family caregivers’ decisional role preferences is important for communi... more 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 decision 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 Hispanic Latin American and Hispanic American 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 decision control were evaluated using the Control Preference Scale. Caregivers’ and patients’ sociodemographic variables, patient performance status, and Hispanic American patient acculturation level were also col...
246 Background: The associations between spirituality (S), religiosity (R), spiritual pain (SP), ... more 246 Background: The associations between spirituality (S), religiosity (R), spiritual pain (SP), symptom, coping and quality of life (QOL) have not been well characterized in LAAdCa. The main purpose of this Multicenter study was to analyze these associations. Methods: We interviewed 325 LAAdCa at a Palliative Care clinic in Chile, Guatemala, and USA. They completed FICA (S/R assessment), ESAS–FS (including SP), PSWQ (Worry), B-COPE and B-R-COPE (coping), FACIT-sp-ex (Spiritual Well-being). Results: Median age 58 (range: 19-85), 60% women, 62% Catholic, 30% Christian not Catholics, and 2% with no religion. 97% of LAAdCa considered themselves spiritual and 89% religious, median 7(IQR: 5-10) and 7(5-9) respectively. Median Importance of S/R in life (score 0 = none, 10 = very important) was 10 (IQR:8-10). The frequency and associations among the importance of S/R and different items were: helps them to cope with their illness (98%, r = 0.73; p < 0.0001), is a source of strength and ...
9063 Background: To determine whether preferences in frequency of passive decision making differ ... more 9063 Background: To determine whether preferences in frequency of passive decision making differ between Hispanic patients from Latin America (HLA) and Hispanic-American (HA) patients. Methods: We conducted a survey of advanced cancer Hispanic patients referred to outpatient palliative care clinics in the U.S, Chile, Argentina, and Guatemala. Information on demographic variables, PS,andMarin Acculturation Assessment Tool (only U.S. patients) was collected. Decision-making preference was evaluated by the decision-making assessment tool. Results: A total of 387 patients with advanced cancer were surveyed: 91 (24%) in the US, 100 (26%) in Chile, 94 (25%) in Guatemala, and 99 (26%) in Argentina. Median age was 59 years, and 61% were female. HLA preferred passive decision-making strategies significantly more frequently with regard to involvement of the family (24% versus 10%, p=0.009) or the physician (35% versus 26%, p<0.001), even after controlling for age and education (OR 3.8, p&l...
180 Background: Caregivers of cancer patients often face significant physical, social, and emotio... more 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 the...
Studies to determine the decisional control preferences (DCPs) in Hispanic patients receiving pal... more Studies to determine the decisional control preferences (DCPs) in Hispanic patients receiving palliative care are limited. 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; DCPs and their self-reported decisions. 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. In this study, 182 patients (47.6%) preferred shared decisional control, 119 (31.2%) preferred active decisional control, and 81 (21.2%) preferred a passive approach. Concerning their 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&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; 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. 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.
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