Medical end-of-life decision-making in a small resource-poor Caribbean country: a mortality follow-back study of home deaths.

BACKGROUND: In resource-poor countries, including in Latin American and the Caribbean, empirical information about the characteristics and incidence of medical end-of-life decisions (MELDs)-withholding or withdrawing potentially life-prolonging medical treatments-is largely absent. METHODS: The aim was to describe the incidence and decision-making characteristics of MELDs taken prior to the death of people who died at home in Trinidad and Tobago (T&T). A mortality follow-back study was used where a representative sample of deaths occurring at home in 2018 was drawn from death certificates at the national death registry. The general practitioners who certified the deaths were sent a questionnaire. RESULTS: The sample consisted of 309 adult deaths and the response rate was 31% (N=96). Physicians were: mostly male (79.2%), practiced medicine for more than twenty-years (63.5%), had no formal palliative care training (69.8%). Non-sudden deaths represented 76% (N=73), of these, medications to alleviate pain and symptoms in the last 7 days of life were administered in 65.8%, including opioids 21%. Potentially life-prolonging treatments were withheld in 9.6% but none withdrawn. No physician/patient discussions about various end-of-life treatment options occurred in 61.6%. Compared to physicians with no formal training in palliative care, those with training more often: prescribed or administered opioids in the last 7 days of life (35.7% vs. 11.1%, P=0.01), had discussions with patients about end-of-life treatment options (60.7% vs. 24.4%, P=0.002), and discussed medication use to alleviate pain and other symptoms with patients (50% vs. 17.8%, P=0.004). CONCLUSIONS: Differences in the care and treatment general practitioners provided to their patients could be associated with them having been formally trained in palliative care. The necessary support to further develop palliative care in T&T is needed.

Place of death in a small island state: a death certificate population study.

OBJECTIVES: Low/middle-income countries, particularly Small Island Developing States, face many challenges including providing good palliative care and choice in place of care and death, but evidence of the circumstances of dying to inform policy is often lacking. This study explores where people die in Trinidad and Tobago and examines and describes the factors associated with place of death. METHODS: A population-level analysis of routinely collected death certificate and supplementary health data where the unit of analysis was the recorded death. We followed the Reporting of Studies Conducted Using Observational Routinely Collected Health Data reporting guidelines, an extension of Strengthening the Reporting of Observational Studies in Epidemiology, on a deidentified data set on decedents (n=10 221) extracted from International Statistical Classification of Diseases version 10 coded death records for the most recent available year, 2010. RESULTS: Of all deaths, 55.4% occurred in a government hospital and 29.7% in a private home; 65.3% occurred in people aged 60 years and older. Cardiovascular disease (23.6%), malignancies (15.5%) and diabetes mellitus (14.7%) accounted for over half of all deaths. Dying at home becomes more likely with increasing age (70-89 years (OR 1.91, 95% CI 1.73 to 2.10) and 90-highest (OR 3.63, 95% CI 3.08 to 4.27)), and less likely for people with malignancies (OR 0.85, 95% CI 0.74 to 0.97), cerebrovascular disease (OR 0.61, 95% CI 0.51 to 0.72) and respiratory disease (OR 0.74, 95% CI 0.59 to 0.91). CONCLUSION: Place of death is influenced by age, sex, race/ethnicity, underlying cause of death and urbanisation. There is inequality between ethnic groups regarding place of care and death; availability, affordability and access to end-of-life care in different settings require attention.

Main themes, barriers, and solutions to palliative and end-of-life care in the English-speaking Caribbean: a scoping review

[ABSTRACT]. Objectives. To identify common themes documented in the literature on palliative and end-of-life care in English-speaking Caribbean small island developing states (SIDS), and to describe barriers, improvement strategies, and suggested ways forward. Methods. In 2015, we conducted a systematic scoping review of relevant literature identified through the MEDLINE and Web of Science databases. We supplemented that with searches of other electronic and hard-copy sources to map key concepts and summarize themes. Results. Primary data and other literature from and about English-speaking Caribbean nations are relatively scarce. The available literature offers an overview of the existing situation in the region and explores why palliative and end-of-life care is limited there. This review identified barriers in five main areas recurring across this literature: i) culture and attitudes of health care providers, patients, and those close to them towards terminal illness and death; ii) opioid availability and use; iii) limited development of palliative care services; iv) unmet palliative care needs; and v) limited research on palliative or end-of-life care. Conclusions. Our analysis helps to document the need for palliative and end-of-life care in Caribbean SIDS and highlights suggestions for moving forward with related practice, policy, and research.

[RESUMEN]. Objetivos. Establecer los temas comunes documentados en la bibliografía sobre los cuidados paliativos y al final de la vida en los pequeños estados insulares en desarrollo del Caribe de habla inglesa, y describir los obstáculos, las estrategias de mejora y los pasos futuros que se sugieren. Métodos. En el 2015, realizamos un examen sistemático exploratorio de la bibliografía pertinente encontrada por medio de MEDLINE y las bases de datos de Web of Science. Complementamos el examen con búsquedas de otras fuentes electrónicas e impresas para esquematizar los conceptos fundamentales y resumir los temas. Resultados. Los datos primarios y otra bibliografía sobre las naciones del Caribe de habla inglesa o provenientes de ellas son relativamente escasos. La bibliografía disponible ofrece un panorama de la situación existente en la región y explora las razones por las que los cuidados paliativos y al final de la vida son limitados en estas naciones. La presente revisión detectó obstáculos en cinco áreas principales, recurrentes en toda la bibliografía: a) factores culturales y actitud de los prestadores de atención de salud, los pacientes y las personas cercanas a ellos hacia la enfermedad terminal y la muerte; b) disponibilidad y uso de opioides ; c) desarrollo limitado de los servicios de cuidados paliativos; d) necesidades de cuidados paliativos no atendidas, y e) investigación limitada sobre los cuidados paliativos o al final de la vida. Conclusiones. Nuestro análisis ayuda a documentar la necesidad de cuidados paliativos y al final de la vida en los pequeños estados insulares en desarrollo del Caribe de habla inglesa, y pone de relieve sugerencias para avanzar en la práctica, la política y la investigación relacionadas.

[RESUMO]. Objetivos. Identificar temas comuns documentados na literatura científica sobre cuidados paliativos e de pacientes terminais nos pequenos Estados insulares em desenvolvimento do Caribe e descrever barreiras, estratégias de melhoria e rumos a serem tomados. Métodos. Em 2015, foi realizada uma revisão sistemática do tipo scoping review da literatura científica relevante identificada nas bases de dados MEDLINE e Web of Science. Para complementar, foram feitas buscas em outras fontes eletrônicas e impressas para mapear os conceitos básicos e resumir os temas. Resultados. Os dados primários e outros dados da literatura provenientes e acerca dos países de língua inglesa do Caribe são relativamente escassos. A literatura disponível oferece um panorama geral da situação da região e examina por que os cuidados paliativos e dos pacientes terminais são limitados. A revisão permitiu identificar barreiras em cinco áreas principais recorrentes nos estudos: i) cultura e atitudes dos profissionais da saúde, dos pacientes e das pessoas próximas que acompanham o paciente com doença terminal e morte; ii) disponibilidade e uso de opioides; iii) progresso restrito dos serviços de cuidados paliativos; iv) necessidades da atenção paliativa não atendidas e v) pesquisas pouco extensas sobre cuidados paliativos e dos pacientes terminais. Conclusões. Nossa análise contribui para documentar a necessidade de cuidados paliativos e dos pacientes terminais nos pequenos Estados insulares em desenvolvimento do Caribe e sugere o rumo a ser tomado com relação a práticas, políticas e pesquisas.

Main themes, barriers, and solutions to palliative and end-of-life care in the English-speaking Caribbean: a scoping review / Principales temas, obstáculos y soluciones en relación con los cuidados paliativos y al final de la vida en el Caribe de habla inglesa: examen sistemático exploratorio / Temas principais, barreiras e soluções aos cuidados paliativos e de pacientes terminais em países de língua inglesa do Caribe: uma scoping review

ABSTRACT Objectives To identify common themes documented in the literature on palliative and end-of-life care in English-speaking Caribbean small island developing states (SIDS), and to describe barriers, improvement strategies, and suggested ways forward. Methods In 2015, we conducted a systematic scoping review of relevant literature identified through the MEDLINE and Web of Science databases. We supplemented that with searches of other electronic and hard-copy sources to map key concepts and summarize themes. Results Primary data and other literature from and about English-speaking Caribbean nations are relatively scarce. The available literature offers an overview of the existing situation in the region and explores why palliative and end-of-life care is limited there. This review identified barriers in five main areas recurring across this literature: i) culture and attitudes of health care providers, patients, and those close to them towards terminal illness and death; ii) opioid availability and use; iii) limited development of palliative care services; iv) unmet palliative care needs; and v) limited research on palliative or end-of-life care. Conclusions Our analysis helps to document the need for palliative and end-of-life care in Caribbean SIDS and highlights suggestions for moving forward with related practice, policy, and research.

RESUMEN Objetivos Establecer los temas comunes documentados en la bibliografía sobre los cuidados paliativos y al final de la vida en los pequeños estados insulares en desarrollo del Caribe de habla inglesa, y describir los obstáculos, las estrategias de mejora y los pasos futuros que se sugieren. Métodos En el 2015, realizamos un examen sistemático exploratorio de la bibliografía pertinente encontrada por medio de MEDLINE y las bases de datos de Web of Science. Complementamos el examen con búsquedas de otras fuentes electrónicas e impresas para esquematizar los conceptos fundamentales y resumir los temas. Resultados Los datos primarios y otra bibliografía sobre las naciones del Caribe de habla inglesa o provenientes de ellas son relativamente escasos. La bibliografía disponible ofrece un panorama de la situación existente en la región y explora las razones por las que los cuidados paliativos y al final de la vida son limitados en estas naciones. La presente revisión detectó obstáculos en cinco áreas principales, recurrentes en toda la bibliografía: a) factores culturales y actitud de los prestadores de atención de salud, los pacientes y las personas cercanas a ellos hacia la enfermedad terminal y la muerte; b) disponibilidad y uso de opioides; c) desarrollo limitado de los servicios de cuidados paliativos; d) necesidades de cuidados paliativos no atendidas, y e) investigación limitada sobre los cuidados paliativos o al final de la vida. Conclusiones Nuestro análisis ayuda a documentar la necesidad de cuidados paliativos y al final de la vida en los pequeños estados insulares en desarrollo del Caribe de habla inglesa, y pone de relieve sugerencias para avanzar en la práctica, la política y la investigación relacionadas.

RESUMO Objetivos Identificar temas comuns documentados na literatura científica sobre cuidados paliativos e de pacientes terminais nos pequenos Estados insulares em desenvolvimento do Caribe e descrever barreiras, estratégias de melhoria e rumos a serem tomados. Métodos Em 2015, foi realizada uma revisão sistemática do tipo scoping review da literatura científica relevante identificada nas bases de dados MEDLINE e Web of Science. Para complementar, foram feitas buscas em outras fontes eletrônicas e impressas para mapear os conceitos básicos e resumir os temas. Resultados Os dados primários e outros dados da literatura provenientes e acerca dos países de língua inglesa do Caribe são relativamente escassos. A literatura disponível oferece um panorama geral da situação da região e examina por que os cuidados paliativos e dos pacientes terminais são limitados. A revisão permitiu identificar barreiras em cinco áreas principais recorrentes nos estudos: i) cultura e atitudes dos profissionais da saúde, dos pacientes e das pessoas próximas que acompanham o paciente com doença terminal e morte; ii) disponibilidade e uso de opioides; iii) progresso restrito dos serviços de cuidados paliativos; iv) necessidades da atenção paliativa não atendidas e v) pesquisas pouco extensas sobre cuidados paliativos e dos pacientes terminais. Conclusões Nossa análise contribui para documentar a necessidade de cuidados paliativos e dos pacientes terminais nos pequenos Estados insulares em desenvolvimento do Caribe e sugere o rumo a ser tomado com relação a práticas, políticas e pesquisas.