RESUMO
BACKGROUND: People with dementia experience a decline in language skills required to self-report pain; researchers thus recommend the use of nonverbal behaviors to assess pain. Although multiple instruments exist for assessing nonverbal pain behaviors, psychometric data are lacking for African American nursing home residents with dementia. AIMS AND DESIGN: The purpose of this methodological study was to describe the development and testing of the Pain Assessment Tool in Cognitively Impaired Elders (PATCIE) in African American and Caucasian nursing home residents with dementia. SETTINGS/PARTICIPANTS: The convenience sample included 56 African American and 69 Caucasian residents with dementia in multiple nursing homes from three states. The research staff completed the pain assessments when the nursing home staff transferred the residents. RESULTS/CONCLUSIONS: Initially, 15 nonverbal pain behaviors were evaluated. Based on the alpha scores and additional literature review, the 15 nonverbal pain behaviors were expanded to 28 behaviors. The PATCIE had a Cronbach's alpha of .73 during movement. Construct validity for the pain behaviors was demonstrated because higher scores were noted during movement, and scores before movement were significantly higher than those obtained after movement. For movement over time, there was a significant difference in the PATCIE score, regardless of ethnicity or time (p < .0001). There were no significant differences found between ethnic groups, either overall or in change over time between movements or between the categories of cognitive function. African Americans were more likely to display frowning, and Caucasians to display irritability. The PATCIE demonstrates preliminary reliability and validity in assessing pain in African American and Caucasian nursing home residents with dementia.
Assuntos
Disfunção Cognitiva/complicações , Medição da Dor/normas , Idoso , Idoso de 80 Anos ou mais , População Negra/etnologia , População Negra/estatística & dados numéricos , Disfunção Cognitiva/fisiopatologia , Demência/complicações , Demência/fisiopatologia , Feminino , Georgia , Humanos , Iowa , Masculino , Casas de Saúde/organização & administração , Casas de Saúde/estatística & dados numéricos , Medição da Dor/métodos , Medição da Dor/estatística & dados numéricos , Reprodutibilidade dos Testes , Texas , População Branca/etnologia , População Branca/estatística & dados numéricosRESUMO
OBJECTIVE: Few decision aids emphasize active surveillance (AS) for localized prostate cancer. Concept mapping was used to produce a conceptual framework incorporating AS and treatment. METHODS: Fifty-four statements about what men need to make a decision for localized prostate cancer were derived from focus groups with African American, Latino and white men previously screened for prostate cancer and partners (n = 80). In the second phase, 89 participants sorted and rated the importance of statements. RESULTS: An eight cluster map was produced for the overall sample. Clusters were labelled Doctor-patient exchange, Big picture comparisons, Weighing the options, Seeking and using information, Spirituality and inner strength, Related to active treatment, Side-effects and Family concerns. A major division was between medical and home-based clusters. Ethnic groups and genders had similar sorting, but some variation in importance. Latinos rated Big picture comparisons as less important. African Americans saw Spirituality and inner strength most important, followed by Latinos, then whites. Ethnic- and gender-specific concept maps were not analysed because of high similarity in their sorting patterns. CONCLUSIONS: We identified a conceptual framework for management of early-stage prostate cancer that included coverage of AS. Eliciting the conceptual framework is an important step in constructing decision aids which will address gaps related to AS.
Assuntos
Tomada de Decisões , Técnicas de Apoio para a Decisão , Participação do Paciente , Neoplasias da Próstata/terapia , Conduta Expectante/métodos , Idoso , Gerenciamento Clínico , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Relações Médico-Paciente , Neoplasias da Próstata/etnologiaRESUMO
BACKGROUND: Recently, the Latin American Association for Palliative Care developed 10 indicators to monitor the development of palliative care and enhance the development of regional and national strategies. AIM: To compare the status of palliative care development across Latin American nations using the Latin American Association for Palliative Care indicators and to classify the countries into three levels of palliative care development. METHODS: A secondary analysis using the following indicators (number of indicators in each category): Policy (1), Education (3), Service Provision (3), and Opioids (3). A Latin American Association for Palliative Care Index was constructed adding the standard score (z-score) of each indicator. SETTING/PARTICIPANTS: Nineteen Spanish and Portuguese-speaking countries of Latin America. RESULTS: Indicators significantly associated with the number of palliative care services per million inhabitants included: the proportion of medical schools with palliative care at the undergraduate level (p = 0.003), the number of accredited physicians working in palliative care (p = 0.001), and opioids consumed per capita (p = 0.032). According to the Latin American Association for Palliative Care Index, Costa Rica registered the highest score (8.1). Three ranking groups were built to measure palliative care development; Costa Rica, Chile, Mexico, and Argentina ranked in the high group, while Bolivia, Honduras, Dominican Republic, and Guatemala ranked in the lowest group. CONCLUSION: Most of the Latin American Association for Palliative Care indicators are useful for assessing national levels of palliative care development. These indicators may be applicable to other world regions. Additional studies are needed to evaluate the specificity of each indicator.
Assuntos
Analgésicos Opioides/administração & dosagem , Educação Médica Continuada/organização & administração , Cuidados Paliativos/organização & administração , Atenção Primária à Saúde/organização & administração , Comparação Transcultural , Países em Desenvolvimento , Necessidades e Demandas de Serviços de Saúde , Humanos , América Latina/epidemiologiaRESUMO
Drug use among older adults is a growing concern, particularly for the burgeoning Hispanic population. Older adults seeking drug treatment will double over the next decade to almost 6 million. Cultural factors influence drug use, and more specifically, Hispanic cultural values influence heroin use. This study explored Mexican-American injection drug users' adherence to traditional Hispanic cultural values and their impact on cessation. Ethnographic interviews endorsed contextualized influences of values on heroin use. Cultural values functioned dichotomously, influencing both initiation and cessation. Understanding the impact of cultural values on substance abuse is critical given the changing demographics in American society.
Assuntos
Cultura , Dependência de Heroína/etnologia , Americanos Mexicanos/psicologia , Abuso de Substâncias por Via Intravenosa/etnologia , Síndrome de Abstinência a Substâncias/etnologia , Idoso , Idoso de 80 Anos ou mais , Dependência de Heroína/reabilitação , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Fatores de Risco , Abuso de Substâncias por Via Intravenosa/reabilitação , Síndrome de Abstinência a Substâncias/prevenção & controle , Inquéritos e Questionários , TexasRESUMO
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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
Assuntos
Neoplasias/terapia , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Cuidados Paliativos na Terminalidade da Vida/métodos , Humanos , Neoplasias/patologia , Qualidade de Vida , Terminologia como AssuntoRESUMO
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.
Assuntos
Aculturação , Cuidadores/psicologia , Tomada de Decisões , Cuidados Paliativos/organização & administração , Argentina/epidemiologia , Chile/epidemiologia , Feminino , Guatemala/epidemiologia , Hispânico ou Latino/estatística & dados numéricos , Humanos , América Latina/epidemiologia , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/normas , Estados Unidos/epidemiologia , População Branca/estatística & dados numéricosRESUMO
This article describes social capital in a cohort of 227 Mexican American men who are long-term injection heroin users. Social capital scores for current and former users were similar, suggesting equal absolute values of capital, but associated with illicit activities in current users and with cessation efforts in former users. Stable drug-using relationships provided high negative capital, whereas conventional relationships provided positive capital. Thus, social capital functions dichotomously in positive and negative contextualized roles. This study provides an alternative understanding of the dynamic interactions between individuals, environment, and drug abuse and can inform prevention and treatment interventions for an important demographic group.
Assuntos
Dependência de Heroína/epidemiologia , Americanos Mexicanos/estatística & dados numéricos , Apoio Social , Abuso de Substâncias por Via Intravenosa/epidemiologia , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Dependência de Heroína/etnologia , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Abuso de Substâncias por Via Intravenosa/etnologiaRESUMO
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.
Assuntos
Viés , Ensaios Clínicos como Assunto , Seleção de Pacientes , Formulação de Políticas , Idoso , Protocolos Clínicos/normas , Humanos , Estados Unidos , United States Food and Drug AdministrationRESUMO
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.
Assuntos
Lista de Checagem , Sedação Consciente , Serviços de Assistência Domiciliar , Neoplasias/tratamento farmacológico , Cuidados Paliativos , Doente Terminal , Idoso , Sedação Consciente/métodos , Sedação Consciente/normas , Feminino , Humanos , Hipnóticos e Sedativos/administração & dosagem , Masculino , Midazolam/administração & dosagem , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Cuidados Paliativos/métodos , Estudos Retrospectivos , Espanha/epidemiologiaRESUMO
This article examines comparative risk behaviors associated with methamphetamine use in a binational sample of women in the border cities of Tijuana, Mexico, and San Diego, California. Specifically, the study examined the differences and similarities in drug use and sexual risk behavior and the patterns of initiation to methamphetamine use. The binational pilot sample consisted of 70 adult women in Tijuana and 55 women in San Diego. Although there were important differences in the presentation of risk behavior and patterns of initiation between the two binational samples, women on both sides of the US-Mexico border also showed remarkable similarities in their risk profile. Results from this study suggest that despite significant cultural and socioeconomic differences between the study cities, certain specific substance abuse patterns (e.g., methamphetamine use) in border regions with an increasing demographic exchange and integration are emerging as an "equalizer" of risk, capable of dissolving context-based differentiating factors, and creating a more homogenous subpopulation of substance users.
Assuntos
Transtornos Relacionados ao Uso de Anfetaminas/epidemiologia , Metanfetamina/efeitos adversos , Assunção de Riscos , Comportamento Sexual/etnologia , Adulto , Transtornos Relacionados ao Uso de Anfetaminas/etnologia , California/epidemiologia , Comparação Transcultural , Coleta de Dados , Feminino , Humanos , México/epidemiologia , Projetos Piloto , Fatores SocioeconômicosRESUMO
OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Americanos Mexicanos/psicologia , Religião e Psicologia , Estresse Psicológico/etnologia , Atividades Cotidianas , Adulto , Idoso , California , Pessoas com Deficiência , Feminino , Nível de Saúde , Humanos , Entrevistas como Assunto , Masculino , Saúde Mental , Pessoa de Meia-Idade , Análise de Regressão , Adulto JovemRESUMO
Cancer is now a leading cause of death among adults in most Latin American nations. Yet, until recently, there has been limited research on the quality of, and access to, advanced cancer care in developing regions such as Latin America. This landmark, cross-national study assessed the quality of advanced cancer care in five Latin American countries by surveying a convenience sample of 777 physicians and nurses, and identifying the most salient influences on their quality-of-care assessments based on multiple linear regression analyses. Strategies for disseminating this survey included mass mailings, distribution at professional meetings/conferences, collaboration with Latin American institutions, professional organizations, and the Pan American Health Organization, and online posting. Results indicate that the respondents' assessments of the quality of, access to, and affordability of advanced cancer care varied significantly across nations (P<0.001). The strongest predictor of providers' national-level assessments of the quality of care was their ratings of access to advanced cancer care (Beta=0.647). Other predictors included affordability of care, country (Cuba vs. the other four countries), income-gap quintile, and institutional availability of opioid analgesics. Low prioritization of palliative care in both health care policy formulation and provider education also predicted the quality-of-care ratings. Findings from this study suggest that providers from five different nations hold similar equitable notions of quality care that are dependent on the provision of accessible and affordable care. Measures of social equity, such as the income-gap quintile of nations, and measures of policy barriers, such as the scale developed in this study, should be replicated in future studies to enable policy makers to assess and improve advanced cancer care in their countries.
Assuntos
Custos de Cuidados de Saúde , Acessibilidade aos Serviços de Saúde , Neoplasias/terapia , Qualidade da Assistência à Saúde , Argentina , Brasil , Cuba , Progressão da Doença , Humanos , América Latina , México , PeruRESUMO
OBJECTIVE: To assess colorectal cancer screening (CRCS) prevalence and psychosocial correlates of CRCS among Latinos in South Texas. METHOD: Using multivariable analyses, we examined the association of perceived susceptibility, self-efficacy, pros and cons, subjective norms, knowledge and fatalism on CRCS among 544 Latinos (50 years and older). RESULTS: In this socioeconomically disadvantaged population, 40% had never heard of any CRCS test, only 34% reported ever completing any type of CRCS, and only 25% were adherent to CRCS guidelines. Insurance status, gender, perceived cons, CRCS self-efficacy, and CRCS norms were significantly associated with CRCS. CONCLUSION: CRCS interventions in this population should focus on improving access, increasing self-efficacy and perceived norms, and decreasing negative perceptions of CRCS.
Assuntos
Colonoscopia/psicologia , Detecção Precoce de Câncer/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Hispânico ou Latino/psicologia , Cooperação do Paciente/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/diagnóstico , Detecção Precoce de Câncer/psicologia , Fezes/citologia , Feminino , Comportamentos Relacionados com a Saúde/etnologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Hispânico ou Latino/estatística & dados numéricos , Humanos , Entrevistas como Assunto , Masculino , México/etnologia , Pessoa de Meia-Idade , Análise Multivariada , Cooperação do Paciente/etnologia , Autoeficácia , Fatores Socioeconômicos , TexasRESUMO
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%) 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. 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.
Assuntos
Tomada de Decisões , Hispânico ou Latino/psicologia , Neoplasias/terapia , Cuidados Paliativos/psicologia , Participação do Paciente , Satisfação do Paciente/etnologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Argentina , Chile , Estudos Transversais , Feminino , Guatemala , Hispânico ou Latino/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/etnologia , Neoplasias/psicologia , Cuidados Paliativos/estatística & dados numéricos , Participação do Paciente/estatística & dados numéricos , Satisfação do Paciente/estatística & dados numéricos , Autorrelato , Estados Unidos , Adulto JovemRESUMO
PURPOSE: The 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 METHODS: We 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. RESULTS: The 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.
Assuntos
Desidratação/terapia , Hidratação , Cuidados Paliativos na Terminalidade da Vida , Recidiva Local de Neoplasia/complicações , Neoplasias/complicações , Nutrição Parenteral , Qualidade de Vida , Adulto , Idoso , Idoso de 80 Anos ou mais , Método Duplo-Cego , Fadiga/prevenção & controle , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/mortalidade , Recidiva Local de Neoplasia/terapia , Neoplasias/mortalidade , Neoplasias/terapia , Prognóstico , Taxa de Sobrevida , Avaliação de SintomasRESUMO
CONTEXT: 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. OBJECTIVES: To describe the meaning of hydration for terminally ill cancer patients in home hospice care and for their primary caregivers. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
Assuntos
Família/psicologia , Hidratação/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Qualidade de Vida/psicologia , Doente Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Desidratação/terapia , Método Duplo-Cego , Fadiga/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
PURPOSE: To identify whether advanced cancer patients receiving home hospice care and their primary caregivers view artificial hydration (AH) as food or medicine, and the demographic and clinical factors influencing these perceptions. METHODS: Participants were enrolled in a randomised, double-blind controlled trial examining the efficacy of AH in cancer hospice patients. In-depth interviews at days 1 and 4 of study enrolment explored the meanings attributed to AH at the end of life. Responses to the question, 'Are these fluids more like food or more like medicine?' were categorised as 'food', 'medicine', 'both' or 'other'. χ(2) analyses were conducted with data from 122 interviews (54 patients and 68 caregivers) to identify differences between patients and caregivers, and by gender, age, ethnicity and caregiver relationship. Predictors of perceptions were identified using logistic regression analysis. RESULTS: Overall, 47 participants (38%) understood the fluids to be more like food, 41 (34%) as medicine, 17 (14%) as both, and 17 (14%) as 'other'. Ethnic minority participants (n=34, 66%) were significantly more likely than non-Hispanic European Americans (n=30, 42%) to view AH as food, or both as food and medicine (p=0.034). Ethnic differences persisted in the final regression model (OR 2.7; 95% CI 1.3 to 5.7, p=0.010). No significant differences were detected between patients and caregivers, or across gender, age, caregivers' relationship to the patients, group assignment, disease severity or cancer type. CONCLUSIONS: AH was perceived as food/nutrition by many cancer patients and caregivers in the study, particularly among ethnic minorities. This perception may lead to greater distress if fluids are discontinued or withheld. Asking patients/caregivers about their AH perceptions may enhance patient/provider communication and culturally appropriate end-of-life care.
Assuntos
Cuidadores/psicologia , Ingestão de Líquidos , Ingestão de Alimentos/psicologia , Etnicidade/psicologia , Neoplasias/psicologia , Assistência Terminal/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Método Duplo-Cego , Feminino , Cuidados Paliativos na Terminalidade da Vida , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Adulto JovemRESUMO
CONTEXT: Parenteral hydration at the end of life is controversial and has generated considerable debate for decades. OBJECTIVES: To identify palliative care physician parenteral hydration prescribing patterns and factors that influence prescribing levels (PLs) for patients during their last weeks of life. METHODS: 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. RESULTS: 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). CONCLUSION: 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.
Assuntos
Atitude do Pessoal de Saúde , Hidratação/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Nutrição Parenteral/estatística & dados numéricos , Padrões de Prática Médica/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Saúde , Doença Crônica/mortalidade , Doença Crônica/enfermagem , Doença Crônica/psicologia , Feminino , Hidratação/ética , Humanos , América Latina/epidemiologia , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Nutrição Parenteral/psicologia , Assistência Terminal/psicologia , Doente Terminal/psicologiaRESUMO
CONTEXT: Characterizing where people die is needed to inform palliative care programs in Mexico. OBJECTIVES: 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. METHODS: 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. RESULTS: 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). CONCLUSION: 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.
Assuntos
Morte , Serviços Hospitalares de Assistência Domiciliar/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos , Idoso , Feminino , Humanos , Masculino , México/epidemiologiaRESUMO
PURPOSE: 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. PATIENTS AND METHODS: 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. RESULTS: 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. CONCLUSION: 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.