RESUMO
INTRODUCTION: Advance care planning (ACP) aims to ensure that patients receive goal-concordant care (GCC), which is especially important for racially or ethnically minoritized populations at greater risk of poor end-of-life outcomes. However, few studies have evaluated the impact of advance directives (i.e., formal ACP) or goals-of-care conversations (i.e., informal ACP) on such care. This study aimed to examine the relationship between each of formal and informal ACP and goal-concordant end-of-life care among older Americans and to determine whether their impact differed between individuals identified as White, Black, or Hispanic. METHODS: We conducted a retrospective cohort study using 2012-2018 data from the biennial Health and Retirement Study. We examined the relationships of interest using two, separate multivariable logistic regression models. Model 1 regressed a proxy report of GCC on formal and informal ACP and sociodemographic and health-related covariates. Model 2 added interaction terms between race/ethnicity and the two types of ACP. RESULTS: Our sample included 2048 older adults. There were differences in the proportions of White, Black, and Hispanic decedents who received GCC (83.1%, 75.3%, and 71.3%, respectively, p < 0.001) and in the use of each type of ACP by racial/ethnic group. In model 1, informal compared with no informal ACP was associated with higher odds of GCC (adjusted odds ratio = 1.38 [95% confidence interval, 1.05-1.82]). In model 2, Black decedents who had formal ACP were more likely to receive GCC than those who did not, but there were no statistically significant differences between decedents of different racial/ethnic groups who had no ACP, informal ACP only, or both types of ACP. CONCLUSIONS: Our results build on previous work by indicating the importance of incorporating goals-of-care conversations into routine healthcare for older adults and encouraging ACP usage among racially and ethnically minoritized populations who use ACP tools at lower rates.
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Planejamento Antecipado de Cuidados , Negro ou Afro-Americano , Hispânico ou Latino , População Branca , Humanos , Planejamento Antecipado de Cuidados/estatística & dados numéricos , Masculino , Feminino , Idoso , Hispânico ou Latino/estatística & dados numéricos , Estudos Retrospectivos , População Branca/estatística & dados numéricos , Negro ou Afro-Americano/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Idoso de 80 Anos ou mais , Estados Unidos , Diretivas Antecipadas/estatística & dados numéricos , Diretivas Antecipadas/etnologia , BrancosRESUMO
Patients with limited English proficiency (LEP) experience disparities in end-of-life decision making and advance care planning. Our objective was to conduct a systematic review to assess the literature about interventions addressing these issues. Our search strategy was built around end-of-life (EOL), LEP, ACP, and goals of care. The databases included Ovid MEDLINE(R), and Epub Ahead of Print, In-Process & Other Non-Indexed Citations and Daily from 1946 to November 9, 2018, Ovid EMBASE. Eight studies from the US and Australia were included (seven studies in Spanish and one study in Greek and Italian). Interventions used trained personnel, video images, web-based programs, and written materials. Interventions were associated with increased advance directive completion and decreased preferences for some life-prolonging treatments. Interventions were deemed to be feasible and acceptable. Few interventions exist to improve end-of-life care for patients with LEP. Data are limited regarding intervention effectiveness.
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Planejamento Antecipado de Cuidados/organização & administração , Tomada de Decisões , Promoção da Saúde/organização & administração , Proficiência Limitada em Inglês , Assistência Terminal/organização & administração , Diretivas Antecipadas/etnologia , Austrália , Características Culturais , Humanos , Estados UnidosRESUMO
BACKGROUND: Research in Taiwan has indicated that advance care planning is rarely undertaken in long-term care facilities. The purpose of this study was to develop an advance care planning interview guideline and care model to facilitate the process of advance care planning for residents and their families in long-term care facilities. METHODS: This study follows an action research design. Cycles of planning, action, observation, and reflection were planned and modified based on the results of interviews with residents and their families as well as meetings with staff. To establish the interview guideline and care model through this action research study, residents and their families were interviewed separately. The researcher subsequently held meetings with staff members to evaluate the results and identify problems during each advance care planning process. This information was synthesised and used to modify the care model for implementation with the next resident-family pair. This process was performed a total of ten times. RESULTS: This study included residents (N = 10), their families (N = 20), and medical staff (N = 4) at a long-term care facility. The interviews and meetings were audio recorded, transcribed, and subjected to a simple thematic analysis together with the field notes and reflection logs. Four themes emerged from the data related to: opening the conversation with the interview guidelines about the life story of residents; continuing life stories to the quality of remaining years of the residents; gradually changing the topic to the end-of-life care issues; and concluding the conversation by explaining the content of advance directives and hospice care. CONCLUSIONS: The advance care planning care model was implemented following logical thinking from a Chinese perspective. This consisted of opening, developing, changing, and concluding through the views of Confucianism, Buddhism, and Taoism. The research findings indicate that the model successfully facilitated the process of advance care planning for residents and their families.
Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Diretivas Antecipadas/etnologia , Assistência de Longa Duração/organização & administração , Casas de Saúde/organização & administração , Planejamento Antecipado de Cuidados/normas , China , Família/etnologia , Guias como Assunto , Pessoal de Saúde , Pesquisa sobre Serviços de Saúde , Humanos , Taiwan , Assistência Terminal/organização & administraçãoRESUMO
Introduction: Data-based research has rarely addressed advance directives (ADs) in community-dwelling Korean cancer survivors. The purpose of this study was to examine the relationship between AD treatment choices and decisional conflicts among low-income, home-based cancer management recipients. Method: This study uses a cross-sectional, correlational design. The cancer survivors completed the questionnaires (Korean-Advance Directive model and Decisional Conflict Scale). Results: Among the 103 participants (average age 67.92 years), 56.3% had solid cancer. Hospice care was the most desired (68.9%), followed by hemodialysis (18.4%), cardiopulmonary resuscitation/ventilation support (15.5% for each), and chemotherapy (12.6%). Patients who were older, unmarried, unemployed, or underweight/obese; lived alone; or had lower education experienced greater decisional conflicts. In the multivariate analyses, no hospice preference was associated with greater decisional conflicts (t = -2.63, p = .01). Discussion: Early integration of AD discussion with the nurse-led, home-based service for this vulnerable population could serve as a liaison for quality and continuity of cancer survivorship care.
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Diretivas Antecipadas/etnologia , Povo Asiático/psicologia , Tomada de Decisões , Serviços de Assistência Domiciliar , Neoplasias/terapia , Preferência do Paciente/etnologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/etnologia , Neoplasias/psicologia , Pobreza/psicologia , República da Coreia , Assistência TerminalRESUMO
BACKGROUND: Noncancer patients with life-limiting diseases often receive more intensive level of care in their final days of life, with more cardiopulmonary resuscitation performed and less do-not-resuscitate (DNR) orders in place. Nevertheless, death is still often a taboo across Chinese culture, and ethnic disparities could negatively affect DNR directives completion rates. OBJECTIVES: We aim to explore whether Chinese noncancer patients are willing to sign their own DNR directives in a palliative specialist clinic, under a multidisciplinary team approach. DESIGN: Retrospective chart review of all noncancer patients with life-limiting diseases referred to palliative specialist clinic at a tertiary hospital in Hong Kong over a 4-year period. RESULTS: Over the study period, a total of 566 noncancer patients were seen, 119 of them completed their own DNR directives. Patients had a mean age of 74.9. Top 3 diagnoses were chronic renal failure (37%), congestive heart failure (16%), and motor neuron disease (11%). Forty-two percent of patients signed their DNR directives at first clinic attendance. Most Chinese patients (76.5%) invited family caregivers at DNR decision-making, especially for female gender (84.4% vs 69.1%; P = .047) and older (age >75) age group (86.2% vs 66.7%; P = .012). Of the 40 deceased patients, median time from signed directives to death was 5 months. Vast majority (95%) had their DNR directives being honored. CONCLUSION: Health-care workers should be sensitive toward the cultural influence during advance care planning. Role of family for ethnic Chinese remains crucial and professionals should respect this family oriented decision-making.
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Diretivas Antecipadas/etnologia , Povo Asiático/psicologia , Atitude Frente a Morte/etnologia , Cuidados Paliativos/psicologia , Ordens quanto à Conduta (Ética Médica)/psicologia , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Doenças Cardiovasculares/psicologia , Competência Cultural , Tomada de Decisões , Família , Feminino , Hong Kong , Humanos , Falência Renal Crônica/psicologia , Masculino , Pessoa de Meia-Idade , Doença dos Neurônios Motores/psicologia , Estudos Retrospectivos , Fatores Socioeconômicos , Assistência Terminal/psicologia , Fatores de TempoRESUMO
BACKGROUND: It is currently expected that about 20% of children with cancer will ultimately die. Writing advanced life directives sufficiently long before the actual death of a child ensues allows both parents and medical staff to develop optimal treatment plans in the best interests of the child. AIM OF THE STUDY: The aim of the study was to evaluate factors that may influence the process of decision-making regarding Do-Not-Resuscitate (DNR) status. METHODS: Retrospective single institution study. RESULTS: Totally, 79 patients died between September 01, 2011 and August 31, 2017. Median age of the children was 10.5 years (range, 1 to 24 y). Forty-five were males. There were 37 Muslims, 27 Jews, 9 Druze, and 6 Christians. Twenty-one patients had sarcomas, 20 had CNS tumors, 10 had neuroblastoma, 17 had leukemias/lymphomas, 11 had carcinomas, and other rare tumors as well as nonmalignant diseases. No statistically significant association between all evaluated factors and DNR order status was found. CONCLUSIONS: It is possible that, other than demographic, clinical-associated, or therapy-associated factors play an important role in the process of decision-making regarding DNR. We feel that sincere communication between parents, their child (when appropriate) and medical and psychosocial staff may have a more crucial role when such decisions have to be made.
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Diretivas Antecipadas , Ordens quanto à Conduta (Ética Médica) , Adolescente , Diretivas Antecipadas/etnologia , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Estudos Retrospectivos , Adulto JovemRESUMO
Advance care directives situate persons as rational and self-determining actors who can make anticipatory plans about their futures. This paper critically examines how people interpret individual and future-oriented approaches to medical decision-making with limited access to information and knowledge, and reduced opportunities to prepare and document their care preferences. Based on ethnographic research with Asian migrant families living in Adelaide, South Australia (August 2015-July 2018), it reveals a discord between planning for a finite future and the contingencies and continuities of social life. It unsettles the detached reasoning that is privileged in end-of-life decision-making and reveals limitations to "do-it-yourself" approaches to advance care directives which, it will be argued, not only forecasts potential futures but also forecloses them. Taking Derrida's critique of death and decision-making as a point of departure, it develops the concept of temporal dissonance as a theoretical framework to articulate the tensions that are constituted in advance care directives. The paper suggests that attention to temporal incongruities may help to shed light on the many complex interpretations of advance care directives and the difficulties of promoting them in diverse contexts.
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Diretivas Antecipadas/tendências , Atitude Frente a Morte , Tomada de Decisões , Previsões/métodos , Diretivas Antecipadas/etnologia , Diretivas Antecipadas/estatística & dados numéricos , Povo Asiático/etnologia , Povo Asiático/psicologia , Povo Asiático/estatística & dados numéricos , Barreiras de Comunicação , Emigrantes e Imigrantes/estatística & dados numéricos , Humanos , Austrália do Sul/etnologiaRESUMO
OBJECTIVES: To elicit decisions that diverse older adults and surrogates perceive as serious, difficult, or important and explore what helped them make those decisions. DESIGN: Focus groups (N=13) in which participants were asked to recall serious, difficult, or important medical decisions and what helped them make those decisions. SETTING: Clinics, support groups and senior centers. PARTICIPANTS: Diverse English- and Spanish-speaking older adults (age: mean 78, range 64-89) and surrogates (age: mean 57, range 33-76) (29% African American, 26% white, 26% Asian or Pacific Islander, 19% Hispanic) (N=69). MEASUREMENTS: We used thematic analysis to analyze transcripts. RESULTS: We identified 168 decisions. Older adults from all racial and ethnic groups frequently recalled cancer treatment decisions and decisions about chronic illness management. Surrogates described decisions about transitions in care and medical crises. Older adults valued self-sufficiency and maximizing survival and relied on personal experiences as often as medical advice. In all racial and ethnic groups, surrogates valued avoiding suffering for loved ones. CONCLUSION: Diverse older adults and surrogates perceive life-threatening illness and day-to-day decisions about chronic disease to be serious, difficult, and important. The surrogates' goal of avoiding suffering of older adults may differ from older adults' priorities of self-sufficiency and maximizing survival. Clinicians should support older adults and surrogates in identifying important and difficult decisions and learn about the values and information sources they bring to decision-making. With this knowledge, clinicians can customize decision support and achieve person-centered care.
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Negro ou Afro-Americano/psicologia , Tomada de Decisões , Hispânico ou Latino/psicologia , Assistência Terminal/psicologia , População Branca/psicologia , Adulto , Planejamento Antecipado de Cuidados , Diretivas Antecipadas/etnologia , Diretivas Antecipadas/psicologia , Idoso , Idoso de 80 Anos ou mais , Doença Crônica/etnologia , Doença Crônica/psicologia , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Racial/ethnic minority patients with nonhematologic malignancies (non-HM) have lower rates of hospice care, advance directive use, and palliative care utilization than non-Hispanic white (NHW) patients. Less is known regarding racial/ethnic minority patients with hematologic malignancies (HM). OBJECTIVES: To study hospital utilization among racial/ethnic minority patients with HM and compare end-of-life outcome measures to patients with non-HM. METHODS: We performed a retrospective cohort study (2010-2015) using electronic health records from an integrated academic health center to study differences in hospital utilization patterns and documentation of advance care planning between patients with HM and non-HM. In the subgroup with hematologic malignancy, we examined outcomes associated with racial/ethnic minority status. RESULTS: Among all patients in the last 30 days of life, those with HM had higher rates of inpatient care (odds ratio [OR], 1.96; 95% CI: 1.74-2.20; p < 0.001) and intensive care unit (ICU) care (OR, 3.50; 95% CI: 3.05-4.03; p < 0.001). Patients with HM were more likely to die in a hospital (OR, 2.75; 95% CI: 2.49-3.04; p < 0.001) than those with non-HM. Furthermore, during the last 30 days of life, among patients with HM, racial/ethnic minority patients were more likely to have more than one emergency room visit (OR, 6.81; 95% CI: 1.34-33.91; p = 0.02), 14+ days of inpatient care (OR, 1.60; 95% CI: 1.08-2.35; p = 0.02), longer stays in the ICU (OR, 1.26; 95% CI: 1.04-1.52; p = 0.02), and lower rates of advance directive documentation (OR, 0.60; 95% CI: 0.44-0.82; p < 0.01) than NHWs. CONCLUSION: Our findings suggest that racial/ethnic minority patients with HM have higher utilization of care at the end-of-life and lower rates of advance directives compared with NHW patients.
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Diretivas Antecipadas/etnologia , Neoplasias Hematológicas/etnologia , Neoplasias Hematológicas/terapia , Hospitalização/estatística & dados numéricos , Assistência Terminal , Idoso , Feminino , Mortalidade Hospitalar , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , WashingtonRESUMO
In traditional Chinese culture, death was sensitive and mentioning it was sacrilegious and to be avoided. Many Chinese families object to telling the patient a "bad" diagnosis or prognosis, which may hinder the chance in advance care planning (ACP) discussion. While death remains an inevitable consequence of being born, as such, it is important that human beings recognize its inevitability and plan ahead of a good death. Advance care planning enables patients to assert their care preferences in the event that they are unable to make their own medical decisions. In China, a rapidly aging demographic presents additional challenges to quality end-of-life care. The adoption of palliative care in China has been slow, with a curative approach dominating health-care strategies. In this article, we would summarize China's current situation in population aging, palliative care development, and Chinese cultural values on death and dying and review the advance directive and end-of-life care preferences among Chinese elderly patients. Current literature recommended the use of indirect communication approaches to determine Chinese seniors' readiness. In individual practice, using depersonalized communication strategies to initiate the discussion was recommended to determine older Chinese seniors' readiness.
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Diretivas Antecipadas/etnologia , Diretivas Antecipadas/psicologia , Povo Asiático/psicologia , Tomada de Decisões , Cuidados Paliativos/psicologia , Preferência do Paciente/psicologia , Assistência Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Morte , Atitude Frente a Saúde , China/etnologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
Advance care planning (ACP) does not readily occur in medical settings and often gets missed. Older Latinos need ACP information to encourage advance directive (AD) completion indicating preferences for end-of-life (EOL) care. OBJECTIVE: To explore the experiences with counseling using motivational interviewing (MI) techniques and social workers to encourage ACP communication among older Latinos with advance chronic diseases. This study describes stages of readiness to plan for EOL care. DESIGN: We conducted a qualitative study with older Latinos who participated in a community-based intervention in Southern New Mexico. METHODS: Participants in the intervention were selected because they received ACP education plus counseling involving MI to address resistance to ACP. Motivational interviewing counseling involved the following: (1) engaging in structured dialogue about ACP, (2) using and completing AD documentation, (3) encouraging ACP communication with providers and families, and (4) applying AD information into actionable behavior. We utilized a constant comparative method and thematic analysis to explore the meaning of older Latinos' experiences with MI counseling and stages of change. RESULTS: Participants (n = 32) were mostly women (74.3%), half born in the United States and half from Mexico in the United States on average for 31.75 (standard deviation 16.22) years. Many had less than sixth grade education (31.3%) or had not completed high school (21.9%). Key themes indicate the following stages of change: (1) precontemplation, (2) contemplation, (3) preparation, (4) ACP action, and (5) maintenance. CONCLUSION: This study contributes to the literature by identifying areas for adaption to enhance understanding and increase information to ultimately achieve the completion of ACP among Latinos.
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Planejamento Antecipado de Cuidados/organização & administração , Doença Crônica/etnologia , Hispânico ou Latino/psicologia , Entrevista Motivacional/métodos , Serviço Social/métodos , Diretivas Antecipadas/etnologia , Idoso , Comunicação , Escolaridade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , New Mexico , Estudos Prospectivos , Pesquisa QualitativaRESUMO
Allogeneic hematopoietic cell transplantation (HCT) is associated with significant morbidity and mortality, making advance care planning (ACP) and management especially important in this patient population. A paucity of data exists on the utilization of ACP among allogeneic HCT recipients and the relationship between ACP and intensity of healthcare utilization in these patients. We performed a retrospective review of patients receiving allogeneic HCT at our institution from 2008 to 2015 who had subsequently died after HCT. Documentation and timing of advance directive (AD) completion were abstracted from the electronic medical record. Outcomes of interest included use of intensive care unit (ICU) level of care at any time point after HCT, within 30 days of death, and within 14 days of death; use of mechanical ventilation at any time after HCT; and location of death. Univariate logistic regression was performed to explore associations between AD completion and each outcome. Of the 1031 patients who received allogeneic HCT during the study period, 422 decedents (41%) were included in the analysis. Forty-four percent had AD documentation prior to death. Most patients (69%) indicated that if terminally ill, they did not wish to be subjected to life-prolonging treatment attempts. Race/ethnicity was significantly associated with AD documentation, with non-Hispanic white patients documenting ADs more frequently (51%) compared with Hispanic (22%) or Asian patients (35%; P = .0007). Patients with ADs were less likely to use the ICU during the transplant course (41% for patients with ADs versus 52% of patients without ADs; P = .03) and also were less likely to receive mechanical ventilation at any point after transplantation (21% versus 37%, P < .001). AD documentation was also associated with decreased ICU use at the end of life; relative to patients without ADs, patients with ADs were more likely to die at home or in hospital as opposed to in the ICU (odds ratio, .44; 95% confidence interval, .27 to .72). ACP remains underused in allogeneic HCT. Adoption of a systematic practice to standardize AD documentation as part of allogeneic HCT planning has the potential to significantly reduce ICU use and mechanical ventilation while improving quality of care at end of life in HCT recipients.
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Diretivas Antecipadas , Transplante de Células-Tronco Hematopoéticas/métodos , Assistência Terminal/normas , Adulto , Diretivas Antecipadas/etnologia , Idoso , Feminino , Humanos , Unidades de Terapia Intensiva/provisão & distribuição , Masculino , Pessoa de Meia-Idade , Respiração Artificial , Estudos Retrospectivos , Transplante HomólogoRESUMO
AIM: We aimed to determine the factors influencing attitudes toward advance directives in Korean older adults with consideration of an Asian cultural background. METHODS: We recruited community-dwelling older adults aged 60 years or older at a regional senior welfare center in Korea. Demographic factors and mental and physical health status were examined using questionnaires and a physical examination. The questionnaire also assessed perceived necessity of advance directives and related experiences. RESULTS: Most participants (79.32%) agreed that advance directives were necessary. Older adults with high education levels (odds ratio [OR] 2.31, 95% confidence interval [CI] 0.84-6.34), low economic status (OR 2.09, 95% C.I. 0.60-7.27), and poor cognitive function (adjusted odds ratio [aOR] 2.10, 95% CI 0.89-4.97) had a greater odds of agreeing that advance directives are necessary. All participants with self-care problems (9/9) and most participants with at risk status of physical functioning (13/14) reported agreement. Death-related experiences were also associated. Notably, individuals who had discussions on end-of-life care with family members showed a greater odds of agreeing that advance directives are necessary (aOR 2.12, 95% CI 0.88-5.11). CONCLUSIONS: The factors associated with increased agreement that advance directives are necessary were high education level, low economic status, poor cognitive function, problems in self-care, poor physical functioning, death-related experiences. Especially, discussions of end-of-life care with family members increased the agreement. Thus, discussion on end-of-life care should be encouraged and the factors influencing older adults' attitudes toward advance directives should be considered in developing policies for such discussion.
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Diretivas Antecipadas/psicologia , Atitude Frente a Saúde , Diretivas Antecipadas/etnologia , Idoso , Idoso de 80 Anos ou mais , Povo Asiático , Atitude Frente a Saúde/etnologia , Cultura , Feminino , Humanos , Vida Independente , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , República da Coreia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: On a daily basis, healthcare providers, especially those dealing with terminally ill patients, such as hospice workers, witness how advance directives help ensure the wishes of patients. They also witness the deleterious consequences when patients fail to document the care they desire at their end of life. To the best of our knowledge there are no data concerning the prevalence of advance directives among hospice healthcare providers. We therefore explored the prevalence and factors influencing completion rates in a survey of hospice healthcare providers. METHODS: Surveys that included 32 items to explore completion rates, as well as barriers, knowledge, and demographics, were e-mailed to 2097 healthcare providers, including employees and volunteers, at a nonprofit hospice. RESULTS: Of 890 respondents, 44% reported having completed an advance directive. Ethnicity, age, relationship status, and perceived knowledge were all significant factors influencing the completion rates, whereas years of experience or working directly with patients had no effect. Procrastination, fear of the subject, and costs were common reasons reported as barriers. Upon completion of the survey, 43% said they will now complete an advance directive, and 45% will talk to patients and families about their wishes. CONCLUSION: The majority of hospice healthcare providers have not completed an advance directive. These results are very similar to those for other healthcare providers treating patients with terminal diseases, specifically oncologists. Because, at completion, 43% said that they would now complete an advance directive, such a survey of healthcare providers may help increase completion rates.
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Diretivas Antecipadas , Estado Terminal , Pessoal de Saúde , Cuidados Paliativos na Terminalidade da Vida , Adulto , Diretivas Antecipadas/etnologia , Diretivas Antecipadas/psicologia , Diretivas Antecipadas/estatística & dados numéricos , Tomada de Decisão Clínica , Barreiras de Comunicação , Estado Terminal/psicologia , Estado Terminal/terapia , Demografia , Feminino , Pesquisas sobre Atenção à Saúde , Pessoal de Saúde/psicologia , Pessoal de Saúde/estatística & dados numéricos , Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos na Terminalidade da Vida/psicologia , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Relações Profissional-Paciente , Estados Unidos/epidemiologiaRESUMO
AIM: Enduring power of attorney (EPA) is a simple and easy-to-set-up legal document which protects the wishes of the donor, as well as preventing significant psychological and social cost for the patient and their family when long-term residential care needs to be arranged due to the patient's increasing care requirements. It also reduces the significant cost in hospital beds days for the district health board involved while awaiting the Protection of Personal and Property Rights order. However, the prevalence of EPA is low in the geriatric population who arguably need it the most. This study aims to identify the barriers in obtaining an EPA in this population. METHODS: Using a cross-sectional design, 100 individuals seen in community geriatric clinics or home visits in Counties Manukau Health between June to September 2015 were surveyed. RESULTS: There was no significant difference in prevalence of EPA between those with cognitive impairment and those without (40.4% and 35% respectively with difference in proportion 5% (95% CI: -14% to 24%, p 0.61)). New Zealand Europeans were more likely than other ethnic groups to have EPA (63.5% vs 10.4%, with difference in proportion of 53% (95% CI: 37% to 69%, p<0.001)). Forty-three participants without EPA gave lack of information as their reason for not having obtained one. The majority of those without EPA (49 participants) felt that their doctor or lawyer would be the best person to convey such information to them, as opposed to mass media such as TV or internet. CONCLUSION: EPA has not been widely acknowledged as an important aspect of health and legal planning by the participants of this survey, predominantly due to the lack of knowledge in the general public and financial barriers. Increased efforts to educate and support uptake could have positive personal and social outcomes.
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Diretivas Antecipadas/etnologia , Diretivas Antecipadas/estatística & dados numéricos , Disfunção Cognitiva/epidemiologia , Havaiano Nativo ou Outro Ilhéu do Pacífico/estatística & dados numéricos , População Branca/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Comportamento de Busca de Informação , Conhecimento , Masculino , Competência Mental , Pessoa de Meia-Idade , Nova Zelândia/epidemiologia , Testamentos/estatística & dados numéricosRESUMO
Having an Advance Directive (AD) can help to guide medical decision-making. Asian Americans (AA) are less likely than White Americans to complete an AD. This pilot study investigated the feasibility and efficacy of a church-based intervention to increase knowledge and behavior change related to AD among Chinese and Vietnamese Americans. This study utilized a single group pre- and post-intervention design with 174 participants from 4 churches. Domain assessed: demographics; AD-related knowledge, beliefs, attitudes, and intentions; AD completion; and conversations with a healthcare proxy. Data were analyzed using Chi square and multiple logistic regression techniques. We observed significant increases in participants' AD-related knowledge, intentions, and a gain in supportive beliefs and attitudes about AD, resulting in 71.8 % AD completion, and 25.0 % having had a proxy conversation. Providing culturally-tailored intervention and step-by-step guidance can help to achieve significant changes in AD related knowledge and behavior in AA church goers.
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Diretivas Antecipadas/etnologia , Asiático , Cristianismo , Emigrantes e Imigrantes , Promoção da Saúde/organização & administração , Idoso , China/etnologia , Competência Cultural , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Intenção , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Fatores Socioeconômicos , Estados Unidos/epidemiologia , Vietnã/etnologiaRESUMO
CONTEXT: Differences among patient populations that present to consultative palliative care are not known. Such an appreciation would inform health-care delivery tailored to unique populations. OBJECTIVES: We aimed to compare characteristics and palliative care needs of African Americans (AAs) and whites during initial palliative care consultation. METHODS: We analyzed patient-reported, clinician-entered clinical encounter data from a large, multisite community-based, nonhospice palliative care collaborative. We included first specialty palliative care consultations from January 1, 2014, to July 2, 2015, across 15 sites within the Global Palliative Care Quality Alliance registry. Demographics, disease, performance status, advance care planning, and symptom prevalence/severity were compared. RESULTS: Of 775 patients, 12.9% (N = 100) were AA. African Americans were younger (63 vs 75.4 years, P < .0001). A larger proportion of AAs had a diagnosis of cancer (45.0% vs 36.3%, P = .09) and in the hospital (71% vs 61.8%, P = .07). African Americans were more likely to have a Palliative Performance Score of 0 to 30 (35.6% vs 23.7%, P = .049). Around 50% in both racial groups were full code; slightly more than 40% had an advance directive. Nearly two-thirds in both racial groups reported 3 or more symptoms of any severity; one-third reported 3 or more moderate or severe symptoms. A larger proportion of Africans than whites reported pain of any severity (66.0% vs 56.1%, P = .06). CONCLUSION: All patients present to palliative care consultations with significant symptom and advance care planning needs. Further research is needed to identify how to deliver palliative care: earlier, in noncancer conditions, and improve pain management in AA populations.
Assuntos
Negro ou Afro-Americano , Cuidados Paliativos/organização & administração , População Branca , Diretivas Antecipadas/etnologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Índice de Gravidade de DoençaRESUMO
OBJECTIVES: The purposes of the present study were (1) to explore the completion rate of advance directives (ADs) in a sample of Asian Americans and (2) to examine the direct and moderating effects of knowledge of AD, education, and acculturation in predicting AD completion. Education and acculturation were conceptualized as moderators in the link between knowledge and completion of ADs. METHODS: Using data from 2609 participants in the 2015 Asian American Quality of Life survey (aged 18-98), logistic regression analyses on AD completion were conducted, testing both direct and moderating effects. RESULTS: The overall AD completion rate in sample was about 12%. The AD knowledge and acculturation independently predicted AD completion. No direct effect of education was found; however, it interacted with AD knowledge. The AD knowledge was more likely to be translated into completion in the group with higher education. CONCLUSIONS: The AD completion rate observed in the present sample of Asian Americans was much lower than that of the US general population (26%-36%). The interactive role of education helps to explain the gap between AD knowledge and completion and suggests intervention strategies.
Assuntos
Diretivas Antecipadas/etnologia , Asiático/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Aculturação , Adolescente , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Escolaridade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores Sexuais , Fatores Socioeconômicos , Adulto JovemRESUMO
This study investigated sociodemographic and psychosocial factors that enhance or impede the completion of advance care planning, analyzing data from the Health and Retirement Study. The analytic subsample included the panel participants who died between 2006 and 2010 and who had answered the psychosocial and lifestyle questionnaire when they were alive. Multinomial logistic regression was executed to answer the research question (N = 1,056). The study found that persons who were older, who were women, who identified themselves as White, and who had higher levels of income and education were more likely to be motivated to complete advance care planning. Having greater sense of control was found to weaken the adverse relationship between being African American and the completion of advance directives. Having cancer, suffering from the illnesses for longer periods of time, and having experience of nursing home institutionalization also predicted the completion of advance care planning. Implications include incorporating a culturally tailored approach for racial/ethnic minorities and using advance directives that are clear and easily understood. In addition, future research needs to include a larger minority population and examine the extent to which variations between racial/ethnic groups exist in relation to advance care planning.