Revistas
Autores:
Lamfre, L. (Autor de correspondencia); Hasdeu, S.; Coller, M.; et al.
Revista:
CADERNOS DE SAUDE PUBLICA
ISSN:
0102-311X
Año:
2023
Vol.:
39
N°:
2
Págs.:
e00081822
Home palliative care services of terminal patients may associate home care preferences with desir-able health outcomes. This study aimed to evalu-ate the cost-effectiveness of home palliative care of cancer patients in the last year of life in the pub-lic health subsector in a province of Argentina. A cost-effectiveness Markov model was developed from a social and the health funder's perspective in order to reflect the reality of home palliative care at the local level compared with usual care. Direct costs to the health system and indirect costs of unpaid informal care were estimated based on local information. Palliative care increased the likelihood of patients dying at home by 10.32% compared with usual care, with annual savings of USD 750 and USD 1,012 per patient, respectively, from both the social and the funder's perspec-tive in the public health subsector in Rio Negro. From both the social and financial perspective, the strategy to implement organized care services was more effective and lower-cost, measured by the percentage of patients who died at home. From a social perspective, the main cost inducer was the formal care provided by families, but from the funder's perspective, it refers to the salaries of the health team.
Revista:
JOURNAL OF PALLIATIVE MEDICINE
ISSN:
1096-6218
Año:
2023
Vol.:
26
N°:
12
Págs.:
1709 - 1714
Background: Despite a steady increase in palliative care (PC)-oriented research, authentic engagement of stakeholders with findings needs to be more used.Objective: This study aimed to explore how ATLANTES Observatory can effectively promote the global development of PC by engaging with stakeholders and addressing their specific needs and priorities.Design: An international e-survey among Observatory collaborators explored key audiences, best ways to reach them, and priority activities. Answers were evaluated according to respondents' roles (Academics, Policymakers, and clinicians) and toward impact on diverse key stakeholders. Correlation between respondents' roles with select products was studied.Results: One hundred fifty-five collaborators participated. The collaborators suggested addressing ATLANTES Global Observatory's activities to policymakers (5,6/7), professional associations (5,2/7), and health care practitioners (4,4/7). Preferred activity to reach all stakeholders is the use of websites and social networks, while particularly for policymakers, academics, and general practitioners, the conduction of atlases and articles stand out.Conclusions: Our study emphasizes prioritizing policymakers and all health care practitioners as key stakeholders in promoting PC and driving global development and integration into health care systems. By leveraging innovative web tools and social networks for dissemination, our aim is to extend the reach of our efforts beyond the PC community.
Revista:
ZEITSCHRIFT FUR EVIDENZ, FORTBILDUNG UND QUALITAT IM GESUNDHEITSWESEN
ISSN:
1865-9217
Año:
2023
Vol.:
180
Págs.:
50 - 55
The WHO Concept Model of Palliative Care emphasises empowering people and communities with Advance Care Planning (ACP). In Latin America, a more relational approach involving family members is suited to ACP. Improvements in doctor-patient-family relationships are needed. Policy efforts have been made to foster ACP in Argentina's healthcare system, but implementation barriers include a need for more communication skills and coordination between healthcare providers. The Shared Care Planning Group Argentina aims to promote ACP through research and training programs. It has sensitised and trained 236 healthcare providers in short courses to introduce basic information and skills. However, there needs to be specific documentation for ACP in Argentina. Research found obstacles to ACP implementation, such as the inability to converse with patients and the lack of coordination between healthcare teams. A new project will assess the self-efficacy of healthcare professionals who assist patients with Sclerosis Lateral Amyotrophic in ACP and evaluate a specific training program. Patient and public involvement in ACP remains limited in Argentina, with paternalistic medical culture and a need for more awareness and training among healthcare professionals as significant barriers. Collaborative research projects with Spain and Ecuador aim to train healthcare professionals and evaluate ACP implementation in other Latin American countries.
Autores:
van der Ham, M.; Korfage, I.; Mori, M.; et al.
Revista:
QUALITY OF LIFE RESEARCH
ISSN:
0962-9343
Año:
2022
Vol.:
31
Págs.:
S69 - S69
Autores:
Yildiz, B. (Autor de correspondencia); Allan, S.; Bakan, M.; et al.
Revista:
BMJ OPEN
ISSN:
2044-6055
Año:
2022
Vol.:
12
N°:
8
Págs.:
e057229
Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families.
Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights.
Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying.
Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights.
Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying.
Autores:
Seitz, K.; Cohen, J.; Deliens, L.; et al.
Revista:
JOURNAL OF GLOBAL HEALTH
ISSN:
2047-2978
Año:
2022
Vol.:
12
Págs.:
04031
Background Little is known about place of death in Latin America, although this data are crucial for health system planning. This study aims to describe place of death and associated factors in Latin America and to identify factors that contribute to inter-country differences in place of death. Methods We conducted a total population observa-tional study using death certificates of the total annu-al decedent populations in 12 countries (Argentina, Brazil, Chile, Colombia, Costa Rica, El Salvador, Gua-temala, Ecuador, Mexico, Paraguay, Peru, and Uru-guay) for the most recent available year (2016, 2017, or 2018). Data were analysed regarding place of death and multivariable logistic regression with place of death as the dependent variable was used to exam-ine associated clinical and sociodemographic factors (independent variables) in each of the countries. Results The total study sample was 2 994 685 deaths; 31.3% of deaths occurred at home, and 57.6% in hospitals. A strong variation was found among the countries with home deaths ranging from 20% (Bra-zil) to 67.9% (Guatemala) and hospital deaths from 22.3% (Guatemala) to 69.5% (Argentina). These differences between countries remained largely un-changed after controlling for sociodemographic fac-tors and causes of death. The likelihood of dying at home was consistently higher with increasing age, for those living in a rural area, and for those with a lower educational level (except in Argentina). Conclusions Most deaths in Latin America occur in hospitals, with a strong variation between countries. As clinical and sociodemographic factors included in this study did not explain country differences, other factors such as policy and health care system seem to have a crucial impact on where people die in Lat-in America.
Autores:
Seitz, K.; Deliens, L.; Cohen, J.; et al.
Revista:
REVISTA PANAMERICANA DE SALUD PUBLICA-PAN AMERICAN JOURNAL OF PUBLIC HEALTH
ISSN:
1020-4989
Año:
2021
Vol.:
45
Págs.:
e149
Objective. This paper assesses the availability and quality of death certificate data in Latin America and the feasibility of using these data to study place of death and associated factors. Methods. In this comparative study, we collected examples of current official death certificates and digital data files containing information about all deaths that occurred during 1 year in 19 Latin American countries. Data were collected from June 2019 to May 2020. The records for place of death and associated variables were studied. The criteria for data quality were completeness, number of ill-defined causes of death and timeliness. Results. All 19 countries provided copies of current official death certificates and 18 of these registered the place of death. Distinguishing among hospital or other health care institution, home and other was possible for all countries. Digital data files with death certificate data were available from 12 countries and 1 region. Three countries had data considered to be of high quality and seven had data considered to be of medium quality. Categories for place of death and most of the predetermined factors possibly associated with place of death were included in the data files. Conclusions. The quality of data sets was rated medium to high in 10 countries. Hence, death certificate data make it feasible to conduct an international comparative study on place of death and the associated factors in Latin America.
Autores:
Haugen, D. F.; Hufthammer, K. O.; Gerlach, C.; et al.
Revista:
ONCOLOGIST
ISSN:
1083-7159
Año:
2021
Vol.:
26
N°:
7
Págs.:
E1273 - E1284
Background Recognized disparities in quality of end-of-life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i-CODE) questionnaire 6-8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient's last days of life. Results Of 1,683 potential participants, 914 i-CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect always or most of the time; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3-17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. Conclusion This is the first study assessing quality of care for dying cancer patients from the bereaved relatives' perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732). Implications for Practice Previous studies have shown that bereaved relatives' views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement.
Autores:
Hjorth, N. E. (Autor de correspondencia); Hufthammer, K. O.; Sigurdardottir, K.; et al.
Revista:
BMJ SUPPORTIVE & PALLIATIVE CARE
ISSN:
2045-435X
Objectives Advance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017-2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not. Methods Relatives after cancer deaths in hospitals answered the CODE questionnaire 6-8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient's remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models. Results 276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18-80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support. Conclusions Relatives who had been invited to a conversation about wishes for the patient's remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient's final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it.
Autores:
Goldraij, G. (Autor de correspondencia); Tripodoro, V; Aloisio, M.; et al.
Revista:
BMJ OPEN QUALITY
ISSN:
2399-6641
Año:
2021
Vol.:
10
N°:
3
Págs.:
e001436
Poor communication contributes to morbidity and mortality, not only in general medical care but also at the end oflife. This leads to issues relating to symptom control and quality of care. As part of an international project focused on bereaved relatives' perceptions about quality of end-of-life care, we undertook a quality improvement (QI) project in a general hospital in Cordoba city, Argentina. By using two iterative QI cycles, we launched an educational process and introduced a clinical mnemonic tool, I-PASS, during ward handovers. The introduction of the handover tool was intended to improve out-of-hours care. Our clinical outcome measure was ensuring comfort in at least 60% of dying patients, as perceived by family carers, during night shifts in an oncology ward during the project period (March-May 2019). As process-based measures, we selected the proportion of staff completing the I-PASS course (target 60%) and using I-PASS in at least 60% of handovers. Participatory action research was the chosen method. During the study period, 13/16 dying patients were included. We received 23 reports from family carers about the level of patient comfort during the previous night. Sixty-five per cent of healthcare professionals completed the I-PASS training. The percentage of completed handovers increased from 60% in the first Plan-Do-Study-Act (PDSA) cycle to 68% in the second one. The proportion of positive reports about patient comfort increased from 63% (end of the first PDSA cycle) to 87% (last iterative analysis after 3 months). Moreover, positive responses to 'Did doctors and nurses do enough for the patient to be comfortable during the night?' increased from 75% to 100% between the first and the second QI cycle. In conclusion, we achieved the successful introduction and staff training for use of the I-PASS tool. This led to improved perceptions by family carers, about comfort for dying patients.
Revista:
ECANCERMEDICALSCIENCE
ISSN:
1754-6605
Año:
2021
Vol.:
15
Págs.:
1316
Background: Early identification of palliative needs has proven benefits in quality of life, survival and decision-making. The NECesidades PALiativas (NECPAL) Centro Coordinador Organizacion Mundial de la Salud - Instituto Catalan de Oncologia (CCOMS-ICO (c)) tool combines the physician's insight with objective disease progression parameters and advanced chronic conditions. Some parameters have been independently associated with mortality risk in different populations. According to the concept of the 'prognostic approach' as a companion of the 'palliative approach', predictive models that identify individuals at high mortality risk are needed. Objective: We aimed to identify prognostic factors of mortality in cancer in our cultural context. Method: We assessed cancer patients with palliative needs until death using this validated predictive tool at three hospitals in Buenos Aires City. This multifactorial, quantitative and qualitative non-dichotomous assessment process combines subjective perception (the surprise question: Would you be surprised if this patient dies in the next year?) with other parameters, including the request (and need) for palliative care (PC), the assessment of disease severity, geriatric syndromes, psychosocial factors and comorbidities, as well as the use of healthcare resources. Results: 2,104 cancer patients were identified, 681 were NECPAL+ (32.3%). During a 2-year follow-up period, 422 NECPAL+ patients died (61.9%). The mean overall survival was 8 months. A multivariate model was constructed with significant indicators in univariate analysis. The best predictors of mortality were: nutritional decline (p < 0.000), functional decline (p < 0.000), palliative performance scale (PPS) <= 50 (p < 0.000), persistent symptoms (p < 0.002), functional dependence (p < 0.000), poor treatment response (p < 0.000), primary cancer diagnosis (p = 0.024) and condition (in/outpatients) (p < 0.000). Only three variables remained as survival predictors: low response to treatment (p < 0.001), PPS <= 50 (p < 0.000) and condition (in/outpatients) (p < 0.000). Conclusion: This prospective model aimed to improve cancer survival prediction and timely PC referral in Argentinian hospitals.
Autores:
Zambrano, S. C. (Autor de correspondencia); Haugen, D. F.; van der Heide, A.; et al.
Revista:
BMC PALLIATIVE CARE
ISSN:
1472-684X
Año:
2020
Vol.:
19
N°:
1
Págs.:
184
BackgroundIn contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life.In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person.MethodsFollowing the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set.DiscussionCore Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.
Revista:
MEDICINA (ARGENTINA)
ISSN:
0025-7680
Año:
2019
Vol.:
79
N°:
6
Págs.:
468 - 476
Las secuencias integradas de cuidado para últimos días de vida proponen estándares de calidad para optimizar la atención de pacientes y familias. Se implementó el Programa Asistencial Multidisciplinario Pallium (PAMPA©) basado en estándares del International Collaborative for Best Care for the Dying Person en cuatro fases: inducción, implementación, diseminación y sustentabilidad, en cinco centros de salud en Argentina, entre 2008 y 2018. Se incluyeron 1237 pacientes adultos en situación de últimos días de vida, en seguimiento por equipos de cuidados paliativos entrenados en el PAMPA©. Se efectuó una auditoría antes y después de la ejecución del programa, aún en curso. El rango de medianas de permanencia en los cinco centros desde el inicio de la secuencia hasta el fallecimiento fue de 16 a 178 horas. Se compararon objetivos de cuidado: control de síntomas, comunicación, necesidades multidimensionales, hidratación y nutrición, documentación de intervenciones y cuidados post mortem. El análisis conjunto mostró una mejoría del número de registros (p = 0.001). La comunicación del plan de cuidados con el paciente no mostró diferencias (p = 0.173). Se realizó capacitación y supervisión permanente a los equipos profesionales de quienes se registraron percepciones de la implementación. Los principales emergentes de este análisis cualitativo fueron: actitudes ante el programa, aportes fundamentales, fortalezas, debilidades y definición subjetiva del programa, reconocimiento de las singularidades culturales institucionales y su influencia en el cuidado. El PAMPA© demostró la factibilidad de un modelo de atención para pacientes y familias en final de vida, basado en estándares de calidad internacionales.
Autores:
Mayland, C. R. (Autor de correspondencia); Gerlach, C.; Sigurdardottir, K.; et al.
Revista:
PALLIATIVE MEDICINE
ISSN:
0269-2163
Año:
2019
Vol.:
33
N°:
3
Págs.:
357 - 368
Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the 'Care Of the Dying Evaluation' (CODETM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE. Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODETM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire. Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODETM. Revisions to the demographic section were needed to be culturally appropriate. Conclusion: Patient and public involvement and bereaved relatives' perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying.
Revista:
MEDICINA (ARGENTINA)
ISSN:
0025-7680
Año:
2019
Vol.:
79
N°:
2
Págs.:
95 - 103
The early identification of patients with palliative needs has shown benefits in terms of quality of life and treatment goals. No prospective methods have been applied in Argentina to identify palliative needs in cancer patients. The NECPAL tool combines the physician's own insight with objective indicators of disease progression and indicators of chronic advanced conditions. The aim of this study was to identify prognostic factors of mortality in hospitalized and ambulatory patients with cancer and palliative needs according to the NECPAL tool in a University Hospital in Buenos Aires city. Study variables were obtained by interviews with 10 physicians in charge of 317 patients with cancer over a 2-year follow-up period. A total of 183 patients with palliative needs were labelled as NECPAL+. Of these, 137 died after a median 4-month follow-up period. The death rate was 11% patients/month. The mortality was higher in inpatients during the first month (p < 0.003). In the multivariate model, the best predictors of mortality combining relevant indicators were: inpatients (HR 1.87; 95% CI 1.24-2.84; p = 0.003), initial diagnosis other than breast cancer (HR 2.04; 95% CI 1.23-3.40; p = 0.006), metastatic disease (HR 1.67; 95% CI 1.15-2.42; p = 0.007), functional deterioration (HR 1.95; 95% CI 1.28-2.97; p = 0.002), and malnutrition (HR 1.53; 95% CI 1.04-2.23; p = 0.02 9). The major breakthrough was the systematic prospective identification of palliative needs in cancer patients for the first time in Argentina. The NECPAL tool can improve the prediction of mortality in hospital settings.
Revista:
CURRENT OPINION IN SUPPORTIVE AND PALLIATIVE CARE
ISSN:
1751-4258
Año:
2019
Vol.:
13
N°:
4
Págs.:
344 - 350
Purpose of review The purpose of this review is the 'when' and 'how' of the matter of withdrawing noninvasive ventilation (NIV) at end-of-life (EoL) setting, having in mind the implications for patients, families and healthcare team. Recent findings Several recent publications raised the place and potential applications of NIV at EoL setting. However, there are no clear guidelines about when and how to withdraw NIV in these patients. Continuing NIV in a failing clinical condition may unnecessarily prolong the dying process. This is particularly relevant as frequently, EoL discussions are started only when patients are in severe distress, and they have little time to discuss their preferences and decisions. Summary Better advanced chronic disease and EoL condition definitions, as well as identification of possible scenarios, should help to decision-making and find the appropriate time to initiate, withhold and withdraw NIV. This review emphasized the relevance of an integrated approach across illness' trajectories and key transitions of patients who will need EoL care and such sustaining support measure.
Autores:
Gabay, C.; Bonet, M.; Castro, M.; et al.
Revista:
JOURNAL OF THORACIC ONCOLOGY
ISSN:
1556-0864
Año:
2018
Vol.:
13
N°:
10
Págs.:
S391 - S392
Autores:
Grinberg, A. R. (Autor de correspondencia); Tripodoro, V
Revista:
MEDICINA (ARGENTINA)
ISSN:
0025-7680
Año:
2017
Vol.:
77
N°:
6
Págs.:
491 - 496
En las últimas décadas han aparecido múltiples publicaciones sobre obstinación terapéutica y futilidad en la Unidad de Terapia Intensiva. Sin embargo, poco se ha publicado sobre la ¿obstinación familiar¿ en continuar con medidas invasivas en pacientes graves, a pesar de una adecuada información sobre su muy mal pronóstico a corto plazo. En determinadas ocasiones, estos pacientes críticos no están en condiciones de tomar decisiones sobre los tratamientos propuestos y lamentablemente muchos de ellos no han dejado testimonio previo sobre sus preferencias en cuanto hasta dónde avanzar en medidas invasivas (directivas anticipadas). De esta manera, son los familiares quienes quedan a cargo de estas decisiones, que pueden no coincidir con lo que el paciente hubiera deseado. Con la medicina paliativa se ha generado una invalorable ayuda a la difícil tarea de la comunicación entre el médico, el paciente y la familia. Los límites de las intervenciones pueden ser difíciles e imprecisos, generando múltiples problemas en la toma de decisiones. En determinadas ocasiones, a pesar de una adecuada información de los médicos intensivistas y paliativistas, algunos familiares no aceptan las directivas de no avanzar con medidas invasivas. Comprender la justificación de la futilidad puede ser relevante para resolver disputas de la forma más adecuada. Este trabajo propone discutir el tema de la futilidad en Terapia Intensiva y cómo encarar el problema tan poco abordado de la ¿obstinación familiar¿ ante situaciones potencialmente irrecuperables, pese a una adecuada información médica.
Autores:
Rabadan, A. T. (Autor de correspondencia); Tripodoro, V
Revista:
MEDICINA (ARGENTINA)
ISSN:
0025-7680
Año:
2017
Vol.:
77
N°:
6
Págs.:
486 - 490
In healthcare, an ethical concern that arises during the decision making process is considered to be a bioethical dilemma. It is often the case that in the absence of proper deliberation, the problem is transferred to a bioethics committee, not even representing precisely a dilemma. Bioethics emerged as a discipline in the mid-20th century. It is defined as a support to decision-making in ethical dilemmas centered on two aspects: ethics of clinical investigation, focused on protecting the rights of research subjects, and bioethics in medical practice, of an advisory nature. To recognize the difference among difficult or complex clinical circumstances and ethical dilemmas could allow knowing when it is necessary to request for advice of a committee. It is not so much a question of deciding what is right or wrong, but which is the most advisable solution to a problem. We review the history of Bioethics Committees in Argentina that are facing today the challenge of promoting social responsibility and opening deliberations to community and health professionals. In the 20th century two historical moments are recognized: a pioneering and slow first period, and a second one of legal regulatory framework. Considering deliberation as a method of ethics, this Artículo proposes a case analysis procedure and the deliberative method to elucidate dilemmas, with or without the help of a Committee.
Revista:
MEDICINA (ARGENTINA)
ISSN:
0025-7680
Año:
2016
Vol.:
76
N°:
3
Págs.:
139 - 147
Alrededor del 75% de las personas morirá a causa de una o varias enfermedades crónicas progresivas. A partir de esta proyección, la OMS instó a los países a diseñar estrategias para el fortalecimiento de los cuidados paliativos como parte del tratamiento integral. En Cataluña, España, la medición de la prevalencia de estos pacientes según el debe decir NECPAL CCOMS-ICO© fue de 1.5% de la población. Es una evaluación cuali-cuantitativa, multifactorial indicativa y no dicotómica que completa el médico tratante. En Argentina no conocemos información sobre estos enfermos. Nuestro objetivo fue explorar y caracterizar en una población accesible de la Ciudad Autónoma de Buenos Aires la proporción de pacientes crónicos con necesidades de atención paliativa, mediante el NECPAL CCOMS-ICO©. Se relevaron los hospitales generales de la Región Sanitaria 2: (Piñero, Álvarez y Santojanni) y sus áreas programáticas. En la Región Sanitaria 1 se incorporó al hospital Udaondo de gastroenterología. Se entrevistaron 53 médicos (704 pacientes). Se identificó que 29.5% presentaba enfermedades crónicas avanzadas; el 72.1% de esos pacientes eran NECPAL positivos, más jóvenes que en otros estudios (mediana 64) y más del 98% tenían alto índice de comorbilidad. Se registró la demanda (31.4%) y necesidad (52.7%) de atención paliativa. Se describieron indicadores específicos de fragilidad, progresión y gravedad según enfermedad crónica. El principal hallazgo fue identificar, con un instrumento no basado en la mortalidad, que, en la ciudad de Buenos Aires, 1 de cada 3 pacientes con enfermedades crónicas podría morir en el próximo año y tenía necesidades de atención paliativa.
Autores:
Veloso, V. I. (Autor de correspondencia); Tripodoro, V
Revista:
CURRENT OPINION IN SUPPORTIVE AND PALLIATIVE CARE
ISSN:
1751-4258
Año:
2016
Vol.:
10
N°:
4
Págs.:
330 - 335
Purpose of reviewTo revise the family caregiver's burden concept and to understand the implications for the patient, family and healthcare system. We analyzed recent literature in three main areas: the role of family caregiver at the end of life, the family caregiver's burden and the involvement of social care networks.Recent findingsThe family caregiver often accepts the caring as a natural action, presumably imposed by the society. A recent review described seven main roles of care which, according to family system and society, consist of different tasks and activities. To assume this role is not stress free. It is likely to develop a burden' by the assumed task.SummaryFamily members who are close to the patient may play the role of caregiver, well-being enhancer, diversity of tasks fulfiller, minimizer and managing suffering, palliative care facilitator and responsible for the continuity of care, apprentice and participant of health teams. The family caregiver often gives priority to the problems of his dependent family member, becoming almost invisible' to the health system. It should also be consider the relevance of this issue into future bereavement process. Considering all these aspects, the family caregiver is often considered by the healthcare teams as overall tasks' performers'.
Revista:
MEDICINA (ARGENTINA)
ISSN:
0025-7680
Año:
2015
Vol.:
75
N°:
2
Págs.:
113 - 118
Autores:
Tripodoro, V; De Vito, E. L. (Autor de correspondencia)
Revista:
CURRENT OPINION IN SUPPORTIVE AND PALLIATIVE CARE
ISSN:
1751-4258
Año:
2015
Vol.:
9
N°:
4
Págs.:
361 - 368
Purpose of review To revise the definition of end stage in the setting of neuromuscular disease (NMD), to understand the implications for the patient, family and healthcare team, and to address the obstacles involved in the lack of definition. Recent findings Unlike several conditions such as cancer, kidney or liver disease, the literature reveals no clear definition or categorization for NMD. Many Artículos mention end stage without defining it. Many years ago an expert consensus panel defined it based on functional criteria (forced vital capacity values and hypercapnic events). Only for amyotrophic lateral sclerosis/motoneurone disease has a wider criteria been proposed. As a consequence, the management of this heterogeneous group of disorders is often fragmented compared with the well organized palliative care program for cancer patients. Summary Better end-stage NMD definitions should help to identify the goals of care, but a broad range in time and intensity of deterioration make a valid definition difficult for end-stage NMD. Respiratory care, life-prolonging therapies, and structured care planning should be seen as complementary rather than dichotomous. This Artículo emphasized the relevance of an integrated approach through the whole trajectories of NMD patients considering key transitions.
Autores:
Luxardo, N. (Autor de correspondencia); Vindrola-Padros, C.; Tripodoro, V
Revista:
JOURNAL OF HOSPICE AND PALLIATIVE NURSING
ISSN:
1522-2179
Año:
2014
Vol.:
16
N°:
3
Págs.:
165 - 172
This article has 3 goals: To describe the attitudes and experiences of staff on end-of-life care treatment of dying persons, to examine how the staff view their terminally ill patients, and to gather professionals' opinions on how their experiences impact their daily lives. It is a qualitative research inquiry based on a constructivist-grounded theory design. The study subjects were professionals who were part of palliative care services in Buenos Aires city during 2012. A purposive sample of 30 personnel answered an open-ended questionnaire assessing attitudes and perceptions concerning end-of-life. The results showed the following: (a) Good deaths were considered those in which physical symptoms were dealt with, where the patient was surrounded or on good terms with family members, and where they were at peace with themselves, any unfinished business, or God. Bad deaths were believed to be those where the patient was physically uncomfortable, were within a conspiracy-silence atmosphere, and died alone. (b) The factors in common that staff members identified regarding deaths were the need for spiritual comfort, peace, and acceptance and the need for attaining a deep connection with others. (c) The unexpected issues identified among end-of-life trajectories were the varying attitudes that patients had regarding death. (d) The personal life of the staff was affected by being in charge of end-of-life care decision making.
Revista:
MEDICINA (ARGENTINA)
ISSN:
0025-7680
Año:
2013
Vol.:
73
N°:
6
Págs.:
601 - 604
Autores:
Tripodoro, V; Von Petery, G.; De Simone, G.; et al.
Revista:
JOURNAL OF PALLIATIVE CARE
ISSN:
0825-8597
Año:
2010
Vol.:
26
N°:
3
Págs.:
214 - 214