Survey on decisions in connection with the end of life in patients who require chronic dialysis

  • María Nieves Campistrús Centro de Diálisis Uruguayana. Co Directora. Médico Nefróloga e Internista
  • Carla Francolino Universidad de la República, Facultad de Medicina, Departamento de Psicología Médica. Profesora Agregada. Psicóloga
  • Emma Schwedt Universidad de la República, Facultad de Medicina, Cátedra de Nefrología. Ex Profesora Agregada. Médico Nefróloga
  • María García Taibo Centro de Diálisis de Canelones. Directora. Médico Nefróloga
  • Juan Dapueto Universidad de la República, Facultad de Medicina, Departamento de Psicología Médica. Profesor Director. Psiquiatra Psicoterapeuta. Médico Internista
Keywords: KIDNEY FAILURE CHRONIC, RENAL DIALYSIS, TERMINAL CARE, MEDICAL ETHICS

Abstract

Introduction: decisions in connection with the end of life are frequent in the context of nephrology. In spite of their arising in different contexts, only suspension of chronic dialysis has been quantified, accounting for 7% of deaths in dialysis.
Objective: to learn about attitudes and criteria of Uruguayan nephrologists upon the making of decisions in connection with the suspension of treatment or failing to include patients in chronic dialysis.
Method: online anonymous and volunteer survey among Uruguayan nephrologists. The following questions were made on three clinical situations: What would you do? and Who would you consult in each one of the cases?. The study explored demographic data, professional expertise, knowledge about legal provisions and degree of perceived skills to face such situations.
Results: sixty five nephrologists participated in the survey: 77% women, 84% of them with over ten years of practice as an expert. When asked: “one of your patients on dialysis has evolved into a severe and permanent dementia”, 66% answered “I probably decide suspension of dialysis”. Upon a competent patient who requests the suspension of dialysis, 86% of doctors try to continue with treatment. If “a request is made to initiate chronic dialysis in a patient under persistent vegetative state”; 100% answered: “I would probably not start dialysis”. Upon all situations described, they would consult the patient/family and other experts in the team. Twenty four out of 63 believe they are “prepared” or “very well prepared” to make these decisions. Knowledge about legal provisions proved to be scarce and they ignore protocols that provide guidelines for the making of these decisions.
Conclusions: Uruguayan nephrologists adopt rather uniform criteria for the treatment of patients on dialysis in severe or irreversible situations, and they act in agreement with family members and other professionals. We need guidelines with medical, ethical and legal criteria to approach these situations.

References

(1) Cohen LM, Germain MJ, Poppel DM. Practical considerations in dialysis withdrawal: “to have that option is a blessing”. JAMA 2003; 289(16):2113-9.
(2) Sindicato Médico del Uruguay. Código de ética médica: aprobado el 27 de abril de 1995. Montevideo: SMU, 1999.
(3) Colegio Médico del Uruguay. Anteproyecto del Código de Ética del Colegio Médico del Uruguay. Montevideo: CMU, 2012: 16. Disponible en: http://www.suc.org.uy/CodigoEtica/CodEt_AnteproyectoFinal_10Ene2012.pdf. Consulta: 20 setiembre 2013.
(4) Fondo Nacional de recursos. Tratamiento dialítico: normativa de cobertura. Montevideo: FNR, 2006:3. Disponible en: http://www.fnr.gub.uy/sites/default/files/normativas/tecnicas/n_dialisis_0.pdf. Consulta: 18 octubre 2012.
(5) United States. National Institute of Health. National Insitutte of Diabetes and Digestive and Kidney Diseases. US Renal Data System. USRDS 2013 Annual Data Report Reference Tables: mortality and causes of death. Table H 12. Bethesda, MD: USRDS, 2013. Disponible en: http://www.usrds.org/reference.aspx. Consulta: 2 abril 2014.
(6) Holley JL. A single-center review of the death notification form: discontinuing dialysis before death is not a surrogate for withdrawal from dialysis. Am J Kidney Dis 2002; 40(3):525-30.
(7) Birmelé B, François M, Pengloan J, Français P, Testou D, Brillet G, et al. Death after withdrawal from dialysis: the most common cause of death in a French dialysis population. Nephrol Dial Transplant 2004; 19(3):686-91.
(8) Sociedad Española de Nefrología. Informe de diálisis y trasplante 2009: registros autonómicos de enfermos renales. Causas de fallecimiento. Granada: SEN, 2010. Disponible en: http://www.senefro.org/modules/webstructure/files/ 4reercongsengranada2010.pdf. Consulta: 17 setiembre 2013.
(9) Rodríguez Jornet A, García García M, Hernando P, Ramírez Vaca J, Padilla J, Ponz E, et al. Pacientes con insuficiencia renal crónica terminal retirados de diálisis bajo protocolización. Nefrología 2001; 21(2):150-9.
(10) González C, Ferreiro A, Schwedt E, Pinato M. Registro uruguayo de diálisis: informe anual 2009. Montevideo: Sociedad Uruguaya de Nefrología, 2011. Disponible en: http://www.nefrouruguay.com/content/informeRUD2009.pdf. Consulta: 10 setiembre 2013.
(11) Kurella Tamura M, Goldstein MK, Pérez-Stable EJ. Preferences for dialysis withdrawal and engagement in advance care planning within a diverse sample of dialysis patients. Nephrol Dial Transplant 2010; 25(1):237-42.
(12) Van Biesen W, Lameire N, Veys N, Vanderhaegen B. From curing to caring: one character change makes a world of difference. Issues related to withholding/withdrawing renal replacement therapy (RRT) from patients with important co-morbidities. Nephrol Dial Transplant 2004; 19(3):536-40.
(13) Ley Nº 18.335. Pacientes y usuarios de los Servicios de salud. Publicada 26 de agosto de 2008. Disponible en: http://www.parlamento.gub.uy/leyes/AccesoTextoLey.asp?Ley=18335&Anchor=. Consulta: 13 febrero 2012.
(14) Ley Nº 18.473. Voluntad Anticipada. Publicada 21 de Abril de 2009. Disponible en: http://www.parlamento.gub.uy/leyes/AccesoTextoLey.asp?Ley=18473&Anchor=. Consulta: 13 febrero 2012.
(15) Perry E, Swartz R, Smith-Wheelock L, Westbrook J, Buck C. Why is it difficult for staff to discuss advance directives with chronic dialysis patients? J Am Soc Nephrol 1996; 7(10):2160-8.
(16) Holley JL, Davison SN, Moss AH. Nephrologists’ changing practices in reported end-of-life decision-making. Clin J Am Soc Nephrol 2007; 2(1):107-11.
(17) Galla JH. Clinical practice guideline on shared decision-making in the appropriate initiation of and withdrawal from dialysis. The Renal Physicians Association and the American Society of Nephrology. J Am Soc Nephrol 2000; 11(7):1340-2.
(18) Renal Physicians Association. Shared decision-making in the appropriate initiation of and withdrawal from dialysis: clinical practice guideline. 2 ed. Rockville: RPA, 2010. Disponible en: http://www.renalmd.org/catalogue-item.aspx?id= 682. Consulta: 20 julio 2012.
(19) Kainer G, Fetherstonhaugh D; CARI. The CARI guidelines: ethical considerations. Nephrology (Carlton) 2010; 15(Suppl 1):S12-4.
(20) Leiva-Santos JP, Sánchez-Hernández R, García-Llana H, Fernández-Reyes MJ, Heras-Benito M, Molina-Ordas A, et al. Cuidados de soporte renal y cuidados paliativos renales: revisión y propuesta en terapia renal sustitutiva. Nefrología 2012; 32(1):20-7.
(21) Gherardi C. Vida y muerte en terapia intensiva: estrategias para conocer y participar en las decisiones. Buenos Aires: Biblos, 2007.
(22) Comisión Honoraria de Salud Renal. Guías de Práctica clínica en el diagnóstico y tratamiento de la Enfermedad Renal Crónica. Uurguay setiembre 2013. Montevideo: CHSR, 2013. Disponible en: http://www.infectologia.edu.uy/publicaciones/guias-clinicas/control-de-infecciones/guias-de- practica-clinica-en-el-diagnostico-y-tratamiento-de-la-enfermedad-renal-cronica. Consulta: 5 abril 2014.
(23) World Health Organization. National cancer control programmes: policies and managerial guidelines. WHO definition of palliative care. 2ed. Geneva: WHO, 2002:84. Disponible en: http://www.who.int/cancer/media/en/408.pdf. Consulta: 5 abril 2014.
Published
2014-06-30
How to Cite
1.
Campistrús MN, Francolino C, Schwedt E, García Taibo M, Dapueto J. Survey on decisions in connection with the end of life in patients who require chronic dialysis. Rev. Méd. Urug. [Internet]. 2014Jun.30 [cited 2024Nov.8];30(2):93-103. Available from: http://www2.rmu.org.uy/ojsrmu311/index.php/rmu/article/view/248