Opinion of health professionals on a document to record guidelines for the adequacy of therapeutic efforts in pediatrics
DOI:
https://doi.org/10.29193/RMU.36.2.2Keywords:
PEDIATRIC PALLIATIVE CARE, DECISION MAKING, ADVANCE CARE PLANNING, ADEQUACY OF THERAPEUTIC EFFORTAbstract
Introduction: during the medical care of children with life-threatening or life-limiting conditions (EALV), sometimes is necessary to adequate the therapeutic effort (ATE). The pediatric palliative care unit of the Pereira Rossell Hospital Center (PPCU- PRHC) implemented a decision-making procedure on ATE and its registration in the clinical history.
Objective: to know: the opinion of health care professionals regarding the utility of the ATE registration document, the main difficulties found, and the interest in training activities.
Material and method: descriptive, cross-sectional study, by means of a survey of physicians and nurses working in the PRHC, between 23 / 10-12 / 11/2018. It was endorsed by the Ethics Committee.
Results: 75.4% (181/240) of the respondents had attended children with ATE documents, occasionally: 73.5%, frequently: 21.5%. They considered it useful to have ATE records: 30% and very useful: 58%. They expressed to find ethical, clinical and / or legal doubts, occasionally: 51.4%, frequently: 27.6%; the main doubts: responsibility when fulfilling the directives and the lack of signature of the parents. The main difficulties referred to were: that the parents do not have the document at the consultation, and that they are distressed and ask to “do everything”. Most professionals expressed that it would be useful or very useful to receive more information and/ or training on ATE.
Conclusions: most of the professionals surveyed had participated in the care of children with ATE registration. They considered it useful or very useful to have these records, but they expressed occasional clinical, ethical and/ or legal doubts.
References
(2) Beca Infante J. La toma de decisiones en ética clínica. Santiago de Chile: Facultad de Medicina CAS-UDD, Centro de Bioética, 2016. Disponible en: https://medicina.udd.cl/centro-bioetica/files/2014/05/La-Toma-de-decisiones-en-%C3%A9tica-cl%C3%ADnica.pdf. [Consulta: 13 abril 2018].
(3) Pereira I, Koziol S, Mauvezin J, Notejane M, Bernadá M. Directivas de adecuación del esfuerzo terapéutico en niños: experiencia de la Unidad de Cuidados Paliativos Pediátricos del Centro Hospitalario Pereira Rossell (2009-2015). Rev Méd Urug 2017; 33(1):24-33.
(4) Moreno F. Limitación del esfuerzo terapéutico, una herramienta para una muerte digna. En: Chuck J. Bioética en pediatría. México: Manual Moderno, 2015:133-52.
(5) Cabre L, Solsona J. Limitación del esfuerzo terapéutico en medicina intensiva. Med Intensiva 2002; 26(6):304-11.
(6) Lorda P, Barrio I, Alarcos F, Barbero J, Couserio A, Robles P. Ética y muerte digna: propuesta de consenso sobre el uso correcto de las palabras. Rev Calid Asist 2008; 23(6):271-85.
(7) Hoell J, Weber H, Balzer S, Danneberg M, Gagnon G, Trocan L, et al. Advance care planning and outcome in pediatric palliative home care. Oncotarget 2018; 9(25):17867-75.
(8) Weise K, Okun A, Carter B, Christian C. guidance on forgoing life-sustaining medical treatment. Pediatrics 2017; 140(3):e20171905. doi: 10.1542/peds.2017-1905
(9) Bernal J. Ciclo PDCA (Planificar, Hacer, Verificar y Actuar): el círculo de Deming de mejora continua. Grupo PDCA Home, 2018. Disponible en: https://www.pdcahome.com/5202/ciclo-pdca/. [Consulta: 13 abril 2018].
(10) Lakin J, Isaacs E, Sullivan E, Harris H, McMahan R, Sudore R. Emergency physicians’ experience with advance care planning documentation in the electronic medical record: useful, needed, and elusive. J Palliat Med 2016; 19(6):632-8.
(11) Lotz J, Jox R, Borasio G, Führer M. Pediatric advance care planning from the perspective of health care professionals: a qualitative interview study. Palliat Med 2015; 29(3):212-22.
(12) American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 2000; 106(2 Pt 1):351-7.
(13) Bradley C, Brasel K, Schwarze M. Physician attitudes regarding advance directives for high-risk surgical patients: a qualitative analysis. Surgery 2010; 148(2):209-16.
(14) Smith A, Fisher J, Schonberg M, Pallin D, Block S, Forrow L, et al. Am I doing the right thing? Provider perspectives on improving palliative care in the emergency department. Ann Emerg Med 2009; 54(1):86-93, 93.e1. doi: 10.1016/j.annemergmed.2008.08.022
(15) The Hastings Center. Los fines de la Medicina (The goals of Medicine). Cuad Fundac Víctor Grífols i Lucas 2005; 11. Disponible en: https://www.fundaciogrifols.org/es/web/fundacio/-/11-los-fines-de-la-medicina-the-goals-of-medicine-. [Consulta: mayo 2019].
(16) Dussel V, Kreicbergs U, Hilden J, Watterson J, Moore C, Turner B, et al. Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manage 2009; 37(1):33-43.
(17) DeCourcey D, Silverman M, Oladunjoye A, Wolfe J. advance care planning and parent-reported end-of-life outcomes in children, adolescents, and young adults with complex chronic conditions. Crit Care Med 2019; 47(1):101-8.
(18) Gómez M. Morir con dignidad. En: Conferencia dictada en el Palacio Legislativo, 24 de junio de 2012. Segunda semana de los cuidados paliativos. Montevideo.
