[show abstract][hide abstract] ABSTRACT: 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' 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' 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.
Journal of pain and symptom management 09/2013; · 2.42 Impact Factor
[show abstract][hide abstract] ABSTRACT: 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 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 patient's decision control was passive, shared, and active for 10 (11%), 45 (52%), and 32 (37%) Hispanic American caregivers and 54 (19%), 178 (62%), and 55 (19%) Hispanic Latin American caregivers (p = 0.0023), respectively. Caregiver acculturation level did not affect the preferences of the Hispanic American sample (p = 0.60).Conclusions:Most Hispanic family caregivers preferred the patient to make shared decisions. Hispanic Latin American caregivers more frequently preferred patients to assume a passive decisional role. Acculturation did not influence the preferences of Hispanic American caregivers.
[show abstract][hide abstract] ABSTRACT: PURPOSEThe vast majority of patients with cancer at the end of life receive parenteral hydration in hospitals and no hydration in hospice, with limited evidence supporting either practice. In this randomized controlled trial, we determined the effect of hydration on symptoms associated with dehydration, quality of life, and survival in patients with advanced cancer.Patients and methodsWe randomly assigned 129 patients with cancer from six hospices to receive parenteral hydration (normal saline 1 L per day) or placebo (normal saline 100 mL per day) daily over 4 hours. The primary outcome was change in the sum of four dehydration symptoms (fatigue, myoclonus, sedation and hallucinations, 0 = best and 40 = worst possible) between day 4 and baseline. Secondary outcomes included Edmonton Symptom Assessment Scale (ESAS), Memorial Delirium Assessment Scale (MDAS), Nursing Delirium Screening Scale (NuDESC), Unified Myoclonus Rating Scale (UMRS), Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F), Dehydration Assessment Scale, creatinine, urea, and overall survival. Intention-to-treat analysis was conducted to examine the change by day 4 ± 2 and day 7 ± 2 between groups.ResultsThe hydration (n = 63) and placebo (n = 66) groups had similar baseline characteristics. We found no significant differences between the two groups for change in the sum of four dehydration symptoms (-3.3 v -2.8, P = .77), ESAS (all nonsignificant), MDAS (1 v 3.5, P = .084), NuDESC (0 v 0, P = .13), and UMRS (0 v 0, P = .54) by day 4. Results for day 7, including FACIT-F, were similar. Overall survival did not differ between the two groups (median, 21 v 15 days, P = .83). CONCLUSION
Hydration at 1 L per day did not improve symptoms, quality of life, or survival compared with placebo.
Journal of Clinical Oncology 11/2012; · 18.04 Impact Factor
[show abstract][hide abstract] ABSTRACT: In the U.S., patients with advanced cancer who are dehydrated or have decreased oral intake almost always receive parenteral hydration in acute care facilities but rarely in the hospice setting.
To describe the meaning of hydration for terminally ill cancer patients in home hospice care and for their primary caregivers.
Phenomenological interviews were conducted at two time points with 85 patients and 84 caregivers enrolled in a randomized, double-blind, controlled trial examining the efficacy of parenteral hydration in patients with advanced cancer receiving hospice care in the southern U.S. Transcripts were analyzed hermeneutically by the interdisciplinary research team until consensus on the theme labels was reached.
Patients and their family caregivers saw hydration as meaning hope and comfort. Hope was the view that hydration might prolong a life of dignity and enhance quality of life by reducing symptoms such as fatigue and increasing patients' alertness. Patients and caregivers also described hydration as improving patients' comfort by reducing pain; enhancing the effectiveness of pain medication; and nourishing the body, mind, and spirit.
These findings differ from traditional hospice beliefs that dehydration enhances patient comfort, given that patients and their families in the study viewed fluids as enhancing comfort, dignity, and quality of life. Discussion with patients and families about their preferences for hydration may help tailor care plans to meet specific patient needs.
Journal of pain and symptom management 03/2012; 43(5):855-65. · 2.42 Impact Factor
[show abstract][hide abstract] ABSTRACT: Purpose
Commonly used terms such as “supportive care,” “best supportive care,” “palliative care,” and “hospice care” were rarely and inconsistently defined in the palliative oncology literature. We conducted a systematic review of the literature to further identify concepts and definitions for these terms.
We searched MEDLINE, PsycInfo, EMBASE, and CINAHL for published peer-reviewed articles from 1948 to 2011 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. Dictionaries/textbooks were also searched.
Nine of 32 “SC/BSC,” 25 of 182 “PC,” and 12 of 42 “HC” articles focused on providing a conceptual framework/definition. Common concepts for all three terms were symptom control and quality-of-life for patients with life-limiting illness. “SC” focused more on patients on active treatment compared to other categories (9/9 vs. 8/37) and less often involved interdisciplinary care (4/9 vs. 31/37). In contrast, “HC” focused more on volunteers (6/12 vs. 6/34), bereavement care (9/12 vs. 7/34), and community care (9/12 vs. 6/34). Both “PC” and “SC/BSC” were applicable earlier in the disease trajectory (16/34 vs. 0/9). We found 13, 24, and 17 different definitions for “SC/BSC,” “PC,” and “HC,” respectively. “SC/BSC” was the most variably defined, ranging from symptom management during cancer therapy to survivorship care. Dictionaries/textbooks showed similar findings.
We identified defining concepts for “SC/BSC,” “PC,” and “HC” and developed a preliminary conceptual framework unifying these terms along the continuum of care to help build consensus toward standardized definitions.
Supportive Care Cancer 01/2012; 21(3). · 2.65 Impact Factor
[show abstract][hide abstract] ABSTRACT: Parenteral hydration at the end of life is controversial and has generated considerable debate for decades.
To identify palliative care physician parenteral hydration prescribing patterns and factors that influence prescribing levels (PLs) for patients during their last weeks of life.
A cross-sectional, representative online survey of Latin American palliative care physicians was conducted in 2010. Physicians were asked to report the percentage of their terminally ill patients for whom they prescribed parenteral hydration. Predictors of parenteral hydration PLs were identified using logistic regression analysis.
Two hundred thirty-eight of 320 physicians completed the survey (74% response rate). Sixty percent of physicians reported prescribing parenteral hydration to 40%-100% of their patients during the last weeks of life. Factors influencing moderate/high PLs were the following: agreeing that parenteral hydration is clinically and psychologically efficacious (odds ratio [OR] 3.5; 95% confidence interval [CI] 1.5-8.3), disagreeing that withholding parenteral hydration alleviates symptoms (OR 3.3, 95% CI 1.3-8.1), agreeing that parenteral hydration is essential for meeting the minimum standards of care (OR 3.2, 95% CI 1.4-7.5), preferring the subcutaneous route of parenteral hydration for patient comfort and home use (OR 2.9, 95% CI 1.3-6.5), and being younger than 45 years of age (OR 2.6, 95% CI 1.3-5.2).
The strongest determinant of prescribing patterns was agreement with the clinical/psychological efficaciousness of parenteral hydration. Our results reflect parenteral hydration prescribing patterns and perceptions that substantially differ from the conventional/traditional hospice philosophy. These findings suggest that the decision to prescribe or withhold parenteral hydration is largely based on clinical perceptions and that most palliative care physicians from this region of the world individualize treatment decisions.
Journal of pain and symptom management 08/2011; 43(1):47-58. · 2.42 Impact Factor
[show abstract][hide abstract] ABSTRACT: The purpose of this study was to identify factors associated with at-home death among patients with advanced cancer and create a decision-making model for discharging patients from an acute-care hospital.
We conducted an observational cohort study to identify the association between place of death and the clinical and demographic characteristics of patients with advanced cancer who received care from a palliative home care team (PHCT) and of their primary caregivers. We used logistic regression analysis to identify the predictors of at-home death.
We identified 380 patients who met the study inclusion criteria; of these, 245 patients (64%) died at home, 72 (19%) died in an acute-care hospital, 60 (16%) died in a palliative care unit, and three (1%) died in a nursing home. Median follow-up was 48 days. We included the 16 variables that were significant in univariate analysis in our decision-making model. Five variables predictive of at-home death were retained in the multivariate analysis: caregiver's preferred place of death, patients' preferred place of death, caregiver's perceived social support, number of hospital admission days, and number of PHCT visits. A subsequent reduced model including only those variables that were known at the time of discharge (caregivers' preferred place of death, patients' preferred place of death, and caregivers' perceived social support) had a sensitivity of 96% and a specificity of 81% in predicting place of death.
Asking a few simple patient- and family-centered questions may help to inform the decision regarding the best place for end-of-life care and death.
Journal of Clinical Oncology 02/2011; 29(9):1159-67. · 18.04 Impact Factor
[show abstract][hide abstract] ABSTRACT: Characterizing where people die is needed to inform palliative care programs in Mexico.
To determine whether access to health care influences the place of death of older Mexicans and examine the modifying effects of demographic and clinical characteristics.
We analyzed 2001 baseline and 2003 follow-up data from the Mexican Health and Aging Study. Cases included adults who completed the baseline interview and died before the follow-up interview and for whom a proxy interview was obtained in 2003. The main outcome variable was the place of death (hospital vs. home). The predictors of the place of death were identified using logistic regression analysis.
The study group included 473 deceased patients; 52.9% died at home. Factors associated with hospital death were having spent at least one night in a hospital during the last year of life (odds ratio [OR]: 6.73; 95% confidence interval [CI]: 3.29, 13.78) and dying in a city other than the city of usual residence (OR: 4.68, 95% CI: 2.56, 8.57). Factors associated with home death were not having health care coverage (OR: 2.78, 95% CI: 1.34, 5.88), living in a city of less than 100,000 residents (OR: 2.44, 95% CI: 1.43, 4.17), and older age (OR: 1.03, 95% CI: 1.01, 1.05).
Older Mexicans with access to health care services were more likely to die in the hospital even after controlling for important clinical and demographic characteristics. Findings from the study may be used to plan the provision of accessible end-of-life hospital and home-based services.
Journal of pain and symptom management 12/2010; 41(5):880-92. · 2.42 Impact Factor
[show abstract][hide abstract] ABSTRACT: Using a decision-making and treatment checklist developed to facilitate the at-home palliative sedation process, we assessed the incidence and efficacy of palliative sedation for end-of-life cancer patients with intractable symptoms who died at home. We retrospectively reviewed the medical records of 370 patients who were followed by a palliative home care team. Twenty-nine of 245 patients (12%) who died at home had received palliative sedation. The mean age of the patients who received palliative sedation was 58 +/- 17 years, and the mean age of the patients who did not receive palliative sedation was 69 +/- 15 years (p = 0.002). No other differences were detected between patients who did or did not receive palliative sedation. The most common indications for palliative sedation were delirium (62%) and dyspnea (14%). Twenty-seven patients (93%) received midazolam for palliative sedation (final mean dose of 74 mg), and two (7%) received levomepromazine (final mean dose of 125 mg). The mean time between palliative sedation initiation and time of death was 2.6 days. In 13 of the cases (45%), the palliative sedation decision was made with the patient and his or her family members, and in another 13 patients (45%), the palliative sedation decision was made only with the patient's family members. We concluded that palliative sedation may be used safely and efficaciously to treat dying cancer patients with refractory symptoms at home.
Palliative Medicine 07/2010; 24(5):486-92. · 2.61 Impact Factor
[show abstract][hide abstract] ABSTRACT: Older adults are vastly underrepresented in clinical trials in spite of shouldering a disproportionate burden of disease and consumption of prescription drugs and therapies, restricting treatments' generalizability, efficacy, and safety. Eliminating Disparities in Clinical Trials, a national initiative comprising a stakeholder network of researchers, community advocates, policymakers, and federal representatives, undertook a critical analysis of older adults' structural barriers to clinical trial participation. We present practice and policy change recommendations emerging from this process and their rationale, which spanned multiple themes: (1) decision making with cognitively impaired patients; (2) pharmacokinetic differences and physiological age; (3) health literacy, communication, and aging; (4) geriatric training; (5) federal monitoring and accountability; (6) clinical trial costs; and (7) cumulative effects of aging and ethnicity.
American Journal of Public Health 02/2010; 100 Suppl 1:S105-12. · 3.93 Impact Factor
[show abstract][hide abstract] ABSTRACT: The Center for Research on Minority Health has translated the biopsychosocial framework to address global cancer health disparities through the integration of biological (eg, endogenous steroids, genetic susceptibility, and pesticide levels) and behavioral (eg, dietary interventions) determinants, along with community-based research (eg, comprehensive involvement of community advisory boards) and educational approaches (eg, kindergarten through postgraduate training). Evidence of successful implementation of this framework includes health disparities training for >2000 individuals ranging from elementary to the postgraduate level, and conducting transdisciplinary projects that incorporate traditional and nontraditional health professionals to examine associations between biological and nonbiological determinants of health. Examples and recommendations for implementation of the biopsychosocial approach as it applies to cancer health disparities research are described.
Cancer 11/2009; 116(2):264-9. · 5.20 Impact Factor
[show abstract][hide abstract] ABSTRACT: We sought to explore the association of religious and spiritual coping with multiple measures of well-being in Latinos caring for older relatives with long-term or permanent disability, either with or without dementia.
Using a multi-dimensional survey instrument, we conducted in-home interviews with 66 predominantly Mexican-American Catholic family caregivers near the US-Mexico border. We assessed caregivers' intrinsic, organizational and non-organizational religiosity with the Duke Religiosity Index, as well as Pargament's brief positive and negative spiritual coping scale to determine the association of religiosity with caregivers' mental and physical health, depressive symptomatology and perceived burden.
Using regression analysis, we controlled for sociocultural factors (e.g. familism, acculturation), other forms of formal and informal support, care recipients' functional status and characteristics of the caregiving dyad. Intrinsic and organizational religiosity was associated with lower perceived burden, while non-organizational religiosity was associated with poorer mental health. Negative religious coping (e.g. feelings that the caregiver burden is a punishment) predicted greater depression.
Measures of well-being should be evaluated in relation to specific styles of religious and spiritual coping, given our range of findings. Further investigation is warranted regarding how knowledge of the positive and negative associations between religiosity and caregiving may assist healthcare providers in supporting Latino caregivers.
Aging and Mental Health 02/2009; 13(1):84-91. · 1.68 Impact Factor
[show abstract][hide abstract] ABSTRACT: Colorectal cancer (CRC) screening rates are comparatively low for U.S. Hispanics. To learn more about the factors influencing CRC screening among Hispanics living along the U.S.-Mexico border, 12 focus groups were conducted with Hispanic men and women aged 50 years and older in three Texas counties; Cameron County (Brownsville), Webb County (Laredo), and El Paso County, (El Paso). The focus group guide contained questions about health care behavior, knowledge about CRC, experiences with cancer, and factors that influence CRC screening. A total of 92 individuals participated with the majority aged 50-69 (75%). Twenty percent were born in the United States and 51% had lived in the United States for more than 20 years. Participants had low levels of education, income, and insurance coverage. The analysis revealed several overarching and contextual themes relating to knowledge, attitudes, beliefs, and emotions about cancer and CRC screening. A prevalent theme that emerged from all groups was frustration and a lack of confidence in the U.S. healthcare system. Few participants had been advised by their providers to obtain CRC screening. Lack of patient knowledge about colorectal cancer and screening appeared to be a critical factor influencing screening. Themes about death and pain due to cancer were prevalent as were cultural factors such as machismo and embarrassment. System level barriers such as cost, medical insurance and transportation also impacted screening. These findings suggest that strategies are needed to educate Hispanic residents of border communities about CRC and to motivate them to undergo CRC screening.
Cancer Causes and Control 04/2008; 19(2):195-206. · 3.20 Impact Factor
[show abstract][hide abstract] ABSTRACT: This paper describes an innovative Pan-American survey on advanced-cancer care and examines the quality-of-care provided by Latin American institutions. A convenience sample of 777 physicians and nurses who treat cancer patients in Argentina, Brazil, Cuba, Mexico, and Peru were surveyed. Providers were identified through mass mailings, distribution at professional meetings and conferences, collaboration with regional institutions, professional organizations, and PAHO and online posting. Multiple linear regression analyses were conducted to identify predictors of quality-of-care assessments in each country. The five predictive models were subsequently compared descriptively. Higher access to care ratings and greater availability of end-of-life services corresponded with improved institutional quality-of-care ratings for all five countries. Barring respondents from Cuba, providers from the other four nations who practice in public institutions rated the quality of advanced-cancer care in their own institutions lower than those practicing in private hospitals or specialized cancer centers. Other institutional quality-of-care predictors included type of city, affordability-of-care ratings, availability of opioid analgesics, where patients die, barriers to cancer pain management, and the provider's specialty and gender. These findings highlight the need for providing accessible care and services to improve the quality of advanced-cancer care in Latin American institutions. Efforts should be aimed at improving the care offered in public institutions and addressing other types of disparities that may exist within countries by creating supportive and palliative cancer care programs that are accessible and affordable to those most in need.
Journal of Pain & Palliative Care Pharmacotherapy 02/2008; 22(1):7-20.
[show abstract][hide abstract] ABSTRACT: This study sought to explore cultural attitudes toward caregiving and long-term care and their influence on patterns of long-term care use among Mexican American family caregivers of relatives aged 50 and older. Using a cross-sectional design, the researchers used mixed methods and conducted interviews with 66 Mexican American family caregivers in San Diego, California. They applied the Andersen behavioral model of health service utilization to examine familism, gender roles, acculturation, religiosity, and knowledge and perceptions of long-term care as factors in usage. Caregivers with greater long-term care use displayed lower levels of familism, were knowledgeable about services, had a care recipient with health insurance, shared caregiving responsibilities, and were less acculturated. Medicaid coverage for low-income care recipients was associated with higher long-term care use. Although familism may deter service use, caregivers empowered with resources and knowledge or Medicaid coverage are inclined to use long-term care services.
Journal of Applied Gerontology 01/2008; 27(2):141-165. · 0.97 Impact Factor