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      Calidad de la muerte percibida por los cuidadores de pacientes en cuidados paliativos Translated title: The Quality of Death Perceived by Caregivers of Patients in Palliative Care

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          Abstract

          RESUMEN: Objetivo: Determinar la calidad de la muerte y del proceso del morir en población oncológica avanzada, y analizar su asociación con el sufrimiento y la calidad de la atención al final de la vida. Método: Estudio descriptivo, correlacional, de corte transversal en el que participaron los cuidadores principales de los pacientes oncológicos fallecidos en cuidados paliativos. Para la evaluación de la calidad de la muerte y del proceso del morir se utilizó la versión española del Quality of Dying and Death Questionnaire. El sufrimiento fue evaluado con el Mini-Suffering State Examination y la calidad de la atención al final de la vida con la Palliative care Outcome Scale. Resultados: 74 cuidadores familiares de pacientes paliativos fallecidos participaron en este estudio. La puntuación media de la versión española del Quality of Dying and Death Questionnaire fue de 65,58 (± 20,98). Se encontró una correlación negativa entre la calidad de la muerte y el sufrimiento (r=-0,63) y positiva entre la calidad de la muerte y la calidad de la atención al final de la vida (r=0,62). Conclusión: La calidad de la muerte de los enfermos oncológicos avanzados en cuidados paliativos se relaciona positivamente con la calidad de la atención al final de la vida y negativamente con el sufrimiento. La atención paliativa contribuye a alcanzar niveles satisfactorios en la calidad de la muerte y del proceso del morir de los pacientes oncológicos avanzados.

          Translated abstract

          ABSTRACT: Objective: To determine the quality of dying and death in an advanced oncology population, and to analyze the association with the suffering and the quality of attention at the end of life. Methods: A cross-sectional, descriptive, correlational design was used. For the evaluation of the quality of dying and death, the Spanish version of the Quality of Dying and Death Questionnaire was used. Suffering was assessed with the Mini-Suffering State Examination and the quality of end-of-life care was evaluated with the Palliative care Outcome Scale. Results: 74 relatives of deceased patients were included in this study. The mean total score of the Spanish version of the Quality of Dying and Death Questionnaire was 64.58 (± 20.98). A negative correlation between the quality of dying and death and the suffering was found (r = -0.63), and a positive correlation between the quality of dying and death and the quality of the attention at the end of life was found (r = 0.62). Conclusion: Quality of dying and death in advanced cancer population is positively related to the quality of of the attention at the end of life and negatively related to suffering. Palliative care can contribute to achieving a satisfactory quality of dying and death of advanced cancer patients.

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          Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health.

          To determine whether the place of death for patients with cancer is associated with patients' quality of life (QoL) at the end of life (EOL) and psychiatric disorders in bereaved caregivers. Prospective, longitudinal, multisite study of patients with advanced cancer and their caregivers (n = 342 dyads). Patients were followed from enrollment to death, a median of 4.5 months later. Patients' QoL at the EOL was assessed by caregiver report within 2 weeks of death. Bereaved caregivers' mental health was assessed at baseline and 6 months after loss with the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, and the Prolonged Grief Disorder interview. In adjusted analyses, patients with cancer who died in an intensive care unit (ICU) or hospital experienced more physical and emotional distress and worse QoL at the EOL (all P ≤ .03), compared with patients who died at home with hospice. ICU deaths were associated with a heightened risk for posttraumatic stress disorder, compared with home hospice deaths (21.1% [four of 19] v 4.4% [six of 137]; adjusted odds ratio [AOR], 5.00; 95% CI, 1.26 to 19.91; P = .02), after adjustment for caregivers' preexisting psychiatric illnesses. Similarly, hospital deaths were associated with a heightened risk for prolonged grief disorder (21.6% [eight of 37] v 5.2% [four of 77], AOR, 8.83; 95% CI, 1.51 to 51.77; P = .02), compared with home hospice deaths. Patients with cancer who die in a hospital or ICU have worse QoL compared with those who die at home, and their bereaved caregivers are at increased risk for developing psychiatric illness. Interventions aimed at decreasing terminal hospitalizations or increasing hospice utilization may enhance patients' QoL at the EOL and minimize bereavement-related distress.
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            Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer.

            Prior research shows that introducing palliative care soon after diagnosis for patients with metastatic non-small-cell lung cancer (NSCLC) is associated with improvements in quality of life, mood, and survival. We sought to investigate whether early palliative care also affects the frequency and timing of chemotherapy use and hospice care for these patients. This secondary analysis is based on a randomized controlled trial of 151 patients with newly diagnosed metastatic NSCLC presenting to an outpatient clinic at a tertiary cancer center from June 2006 to July 2009. Participants received either early palliative care integrated with standard oncology care or standard oncology care alone. By 18-month follow-up, 133 participants (88.1%) had died. Outcome measures included: first, number and types of chemotherapy regimens, and second, frequency and timing of chemotherapy administration and hospice referral. The overall number of chemotherapy regimens did not differ significantly by study group. However, compared with those in the standard care group, participants receiving early palliative care had half the odds of receiving chemotherapy within 60 days of death (odds ratio, 0.47; 95% CI, 0.23 to 0.99; P = .05), a longer interval between the last dose of intravenous chemotherapy and death (median, 64.00 days [range, 3 to 406 days] v 40.50 days [range, 6 to 287 days]; P = .02), and higher enrollment in hospice care for longer than 1 week (60.0% [36 of 60 patients] v 33.3% [21 of 63 patients]; P = .004). Although patients with metastatic NSCLC received similar numbers of chemotherapy regimens in the sample, early palliative care optimized the timing of final chemotherapy administration and transition to hospice services, key measures of quality end-of-life care.
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              A measure of the quality of dying and death. Initial validation using after-death interviews with family members.

              A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of family members after death and to identify clinical correlates of a high quality death, a retrospective cohort study evaluated the 31-item Quality of Dying and Death (QODD) questionnaire. The questionnaire was administered to family members of patients who died in Missoula county Montana in 1996 and 1997. The interview included questions assessing symptoms, patient preferences, and satisfaction with care. Measurement validity was examined for item and total scores and reliability analyses for the QODD total score were assessed. Construct validity was assessed using measures of concepts hypothesized to be associated with the quality of dying and death. There were 935 deaths, of which 252 (27.0%) family interviews were represented. Non-enrolled decedents were not significantly different from enrolled decedents on age, sex, cause of death, or location of death. We excluded sudden deaths (n = 45) and decedents under age 18 (n = 2), leaving 205 after-death interviews. A total QODD score, on a scale from 0 to 100 with higher scores indicating better quality, ranged from 26.0 to 99.6, with a mean of 67.4 and Cronbach's alpha of 0.89. The total QODD score was not associated with patient age, sex, education, marital status, or income. As hypothesized, higher QODD scores were significantly associated with death at home (P < 0.01), death in the location the patient desired (P < 0.01), lower symptom burden (P < 0.001), and better ratings of symptom treatment (P< 0.01). Although the total score was not associated with the presence of an advance directive, higher scores were associated with communication about treatment preferences (P < 0.01), compliance with treatment preferences (P < 0.001), and family satisfaction regarding communication with the health care team (P < 0.01). Availability of a health care team member at night or on weekends was also associated with a higher QODD score (P < 0.001). The QODD total score demonstrated good cross-sectional validity. Clinicians caring for dying patients should focus on improving communication with the patient and family and improving symptom assessment and treatment. Health care teams should focus on continuity of care, including having a team member familiar with the patient available for calls at nights and on weekends. Future work will assess the potential role of the QODD in improving the quality of the dying experience.
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                Author and article information

                Journal
                eg
                Enfermería Global
                Enferm. glob.
                Universidad de Murcia (Murcia, Murcia, Spain )
                1695-6141
                2020
                : 19
                : 60
                : 463-482
                Affiliations
                [1] Andalucía orgnameUniversidad de Málaga Spain danieltunie@ 123456hotmail.com
                [2] Andalucía orgnameUniversidad de Málaga Spain
                Article
                S1695-61412020000400463 S1695-6141(20)01906000463
                10.6018/eglobal.412211
                3ab0a132-8099-4509-80b7-8d6bb0e03dd3

                This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 International License.

                History
                : 29 January 2020
                : 22 March 2020
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 29, Pages: 20
                Product

                SciELO Spain

                Categories
                Originales

                Palliative care,End of life care,Nursing,Outcome measure,Quality of dying and death,Cuidados al final de la vida,Enfermería,Cuidados paliativos,Medida de resultados,Calidad de la muerte

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