Validación y resultados preliminares de un cuestionario a médicos acerca de los aspectos bioéticos relativos al uso de la alimentación enteral en pacientes con demencia
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https://doi.org/10.5294/pebi.2023.27.2.2Palabras clave:
Cuidados paliativos, demencia, encuesta, nutrición enteral, bioéticaResumen
Introducción: el uso de la alimentación enteral en pacientes con demencia resulta un desafío ético-clínico. El objetivo de este artículo es exponer el proceso de validación de un cuestionario para conocer la opinión de los médicos al respecto y sus resultados preliminares. Metodología: se desarrolló un cuestionario anónimo para conocer la opinión de médicos acerca del uso de la alimentación enteral, dirigido a especialistas de cuidados paliativos, geriatría, medicina interna y neurología, de los ámbitos público y privado. Se presentaban allí tres casos clínicos de pacientes con demencia en diferente grado de evolución. Las preguntas abordaban cuatro campos específicos: motivaciones del inicio o suspensión de la alimentación enteral, adecuación terapéutica, eutanasia y toma de decisiones. Resultados: se obtuvo un índice de respuesta del 64 %. El cuestionario resultó una herramienta con validez y fiabilidad aceptables. Los especialistas en cuidados paliativos y geriatría eran más propensos a adecuar el esfuerzo terapéutico y a integrar a la familia en las decisiones. Los profesionales de medicina interna y neurología tendían a ser más invasivos en los tratamientos. Conclusión: los resultados obtenidos permiten recomendar el cuestionario como metodología para valorar la actitud de los profesionales ante las cuestiones bioéticas más relevantes en la atención a pacientes con demencia.
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Mitchell S. Care of patients with advanced dementia [Internet]. Uptodate; 2021 June 2. Disponible en: https://www.uptodate.com/contents/care-of-patients-with-advanced-dementia
Radbruch L. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28(3):197-209. DOI: https://doi.org/10.1177/0269216313493685
Alzheimer’s Association Report. 2021 Alzheimer’s disease facts and figures. J Alzheimer’s Assoc. Alzheimer’s Dement. 2021;17(3):327-406. DOI: https://doi.org/10.1002/alz.12328
Finucane T. Tube feeding in patients with advanced dementia. A review of the evidence. Jama. 1999;282(14):1365-370. DOI: https://doi.org/10.1001/jama.282.14.1365
Davies N, Barrado-Martín Y. Enteral tube feeding for people with severe dementia (review). Cochrane Database of Systematic Reviews. 2021;13(8). DOI: https://doi.org/10.1002/14651858.CD013503.pub2
Barrado-Martín Y, Hatter L. Nutrition and hydration for people living with dementia near the end of life: a qualitative systematic review. J Adv Nurs. 2021;77(2):664-68. DOI: https://doi.org/10.1111/jan.14654
Post SG. The moral challenge of Alzheimer disease. Baltimore: Johns Hopkins University Press; 1995.
Hanson L, Kistler C, Lavin K, Gabriel S, Ernecoff N, Lin F, et al. Triggered palliative care for late-stage dementia: a pilot randomized trial. J Pain and Symptom Manage. 2019;57(1):10-9. DOI: https://doi.org/10.1016/j.jpainsymman.2018.10.494
Schlögl M, Riese F, O Little M, Blum D, Jox R, et al. Top ten tips palliative care clinicians should know about cognitive impairment and institutional care. J Palliat Med. 2020;23(11):1525-531. DOI: https://doi.org/10.1089/jpm.2020.0552
Walsh SC, Murphy E, Devane D, Sampson E, Connolly S, Carney P, et al. Palliative care interventions in advanced dementia. The Cochrane Database of Systematic Reviews. 2021;9(9). DOI: https://doi.org/10.1002/14651858.CD011513.pub3
Morrison S, Meier D. Clinical practice. Palliative care. N Engl J Med. 2004;350:2582-590. DOI: https://doi.org/10.1056/NEJMcp035232
Mataqi M, Aslanpour Z. Factors influencing palliative care in advanced dementia: a systematic review. BMJ Support Palliat Care. 2020;10(2):145-56. DOI: https://doi.org/10.1136/bmjspcare-2018-001692
European Association for Palliative Care. Dementia white paper. Recommendations on palliative care and treatment of older people with Alzheimer’s disease and other progressive dementias. Palliat Med. 2013;0(0):1-13. Disponible en: https://doi.org/10.1177/0269216313493685
Fox S, Fitzgerald C, Dening K, Irving K, Kernohan W, Treolar A, et al. Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research. BMC Palliative Care. 2018;17(1):9. DOI: https://doi.org/10.1186/s12904-017-0221-0
Hanson L, Zimmerman S, Song M, Lin F, Rosemond C, Carey T, et al. Effect of the goals of care intervention for advanced dementia: a randomized clinical trial. JAMA Intern Med. 2017;177(1):24-31. DOI: https://doi.org/10.1001/jamainternmed.2016.7031
Finucane T, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA Intern Med. 1999; 282(14):1365-370. DOI: https://doi.org/10.1001/jama.282.14.1365
Gillick M. Rethinking the role of tube feeding in patients with advanced dementia. New Engl J Med. 2000;20:206-10. DOI: https://doi.org/10.1056/NEJM200001203420312
American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American Geriatrics Society feeding tubes in advanced dementia position statement. J Am Geriatr Soc, 2014;62:1590-593. DOI: https://doi.org/10.1111/jgs.12924
Eggenberger S, Nelms T. Artificial hydration and nutrition in advanced Alzheimer’s disease: facilitating family decision-making. J Clin Nurs, 2004;13,661-67. DOI: https://doi.org/10.1111/j.1365-2702.2004.00967.x
Davies N et al. Enteral tube feeding for people with severe dementia. A Cochrane review. Cochrane Database Syst Rev, 2021;13(8). DOI: https://doi.org/10.1002/14651858.CD013503.pub2
DeLegge M H, Saltzman J R, y Lipman T O. Gastrostomy tubes: complications and their management [Internet]. UpToDate; 2015 July. Disponible en: https://medilib.ir/uptodate/show/2552
Mitchell S. Advanced dementia. New Engl J Med. 2015;26:2533-2540. DOI: https://doi.org/10.1056/NEJMcp1412652
Steinbrook R, Lo B. Artificial feeding ― solid ground, not a slippery slope. New Engl J Med. 1988;318:286-90. DOI: https://doi.org/10.1056/NEJM198802043180505
Catholic Church National Conference of Catholic Bishops. Ethical and religious directives for catholic health care services. Washington, DC: U.S. Catholic Conference; 1995. 43 p.
Pereira A, Freire de Carvalho da Cunha S, Grunspun H, Scarpinella Bueno M. The difficult decision not to prescribe artificial nutrition by health professionals and family: bioethical aspects. Frontiers in Nutrition. 2022;3(9):781540. DOI: https://doi.org/10.3389/fnut.2022.781540
Brody H, Hermer LD, Scott LD, Grumbles LL, Kutac JE, McCammon SD. Artificial nutrition and hydration: the evolution of ethics, evidence, and policy. J Gen Inter Med. 2011;26:1053-058. DOI: https://doi.org/10.1007/s11606-011-1659-z
Muscaritoli M, Anker SD, Argilés J, Aversa Z, Bauer JM, Biolo G, et al. Consensus definition of sarcopenia, cachexia and pre-cachexia: joint document elaborated by special interest groups (SIG) “cachexia-anorexia in chronic wasting diseases” and “nutrition in geriatrics”. Clinic Nutr. 2010;29:154-59. DOI: https://doi.org/10.1016/j.clnu.2009.12.004
Peel M. Hunger strikes. BMJ. 1997;315:829-30. DOI: https://doi.org/10.1136/bmj.315.7112.829
De la Torre J et al, editores. La limitación del esfuerzo terapéutico. Dilemas éticos de la medicina actual. Madrid (España): Universidad Pontificia de Comillas; 2006.
Ying I. Artificial nutrition and hydration in advanced dementia. Can Fam Physician. 2015;61(3):245-48,e125-8. Disponible en: https://pubmed.ncbi.nlm.nih.gov/25767168/
Begents D. Palliative feeding for comfort guidelines [Internet]; Buckinghamshire Healthcare NSH. 2019. Disponible en: https://www.buckshealthcare.nhs.uk/pifs/palliative-feeding-for-comfort
Alzheimer’s Disease facts and figures. Special report. Alzheimer’s & Dementia. 2022;18(4):700-89. DOI: https://doi.org/10.1002/alz.12638
Kaur P, Tan WS, Gunapal PPG, et al. Deaths in dementia: a scoping review of prognostic variables. BMJ Support Palliat Care. 2021;11:242-252. DOI: https://doi.org/10.1136/bmjspcare-2020-002217
American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement. J Am Geriatr Soc. 2014;62(8):1590-593. DOI: https://doi.org/10.1111/jgs.12924
Fox S, Fitzgerald C, Dening K, Irving K, Kernohan W, Treloar A, et al. Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research. BMC Palliat Care. 2017;17(1):3-11. DOI: https://doi.org/10.1186/s12904-017-0221-0
Pinho-Reis C, Sarmento A. Nutrition and hydration in the end-of-life care: ethical issues. Acta Portuguesa de Nutriçao. 2018;15:36-40. DOI: https://doi.org/10.21011/apn.2017.1507
Martins Pereira S, Hernández-Marrero P. Ethical challenges of outcome measurement in palliative care clinical practice: a systematic review of systematic reviews. Ann Palliat Med. 2018;7(3):207-18. DOI: https://doi.org/10.21037/apm.2018.06.05
Post S. Tube feeding and advanced progressive dementia. Hastings Cent Rep. 2002;31(1):36-42. DOI: https://doi.org/10.2307/3528732
Taboada P. Limitación del esfuerzo terapéutico y principio ético de proporcionalidad terapéutica [Internet]. Santiago de Chile: Pontificia Universidad Católica de Chile. Disponible en: https://enciclopediadebioetica.com/mod/page/view.php?id=3357
Vivanco Martínez A. El principio de proporcionalidad terapéutica y el rechazo a los tratamientos médicos. Bol. Cient. Asoc. Chil. Segur. 2001;3(5/6):68-76. Disponible en: https://pesquisa.bvsalud.org/portal/resource/pt/lil-318144
Rurup M, Onwuteaka-Philipsen B, Pasman H, Ribbe M, Van der Wal G. Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia. Patient Educ Counc. 2006;61(3):372-380. DOI: https://doi.org/10.1016/j.pec.2005.04.016
Miccinesi G, Fischer S, Paci E, Onwuteaka B, Cartwright C, Van der Heide A, et al. Physician’s attitudes towards end-of-life decisions: a comparison between seven countries. Soc Sci Med. 2005;60(9):1961-974. DOI: https://doi.org/10.1016/j.socscimed.2004.08.061
Bruera E, Neumann C, Mazzocato C. Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients. Palliat Med. 2000;14(4):287-98. DOI: https://doi.org/10.1191/026921600674582192
Van der Heide A, Deliens L, Faisst K, Nilstun T, Norup M, Paci E, et al. End-of-life decision making in six European countries: descriptive study. Lancet. 2003;362(9381):345-50. DOI: https://doi.org/10.1016/S0140-6736(03)14019-6
Fadul N, Elsayem A, Lynn Palmer J, Del Fabbro E, Swint K, Li Z, et al. Supportive vs Palliative care: what’s in a name? Cancer. 2009;115(9):2013-021. DOI: https://doi.org/10.1002/cncr.24206
Álvarez-Hernández J. Ética y tratamiento nutricional en el paciente con demencia. Nutr Hosp. 2009;2(2):114-121. Disponible en: https://medes.com/publication/54402
Terman S, Steinberg K, Hinerman N. Flaws in advance directives that request withdrawing assisted feeding in late-stage dementia may cause premature or prolonged dying. BMC Med Ethics. 2022;23(1):100. DOI: https://doi.org/10.1186/s12910-022-00831-7
Menzel P. Justifying a surrogate’s request to forgo oral feeding. Am J Bioeth. 2019;1:92-4. DOI: https://doi.org/10.1080/15265161.2018.1544307
Tarzian A. Foregoing spoon feeding in end-stage dementia. Am J Bioeth. 2019;1:88-9. DOI: https://doi.org/10.1080/15265161.2019.1545506
Schwarz J. Lessons from New York’s dementia directive and applications to withholding oral feedings. Am J Bioeth. 2019;1:95-7. DOI: https://doi.org/10.1080/15265161.2018.1544308
Wiksol D, Horn M, Pedersen R, Magelssen M. Citizen attitudes to not treatment decision making: a Norwegian survey. BMC Med Ethics. 2023;24(1):20. DOI: https://doi.org/10.1186/s12910-023-00900-5
Birchley G, Jones K, Huxtable R, Dixton J, Kitzinger J, Clare L. Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty. BMC Med Ethics. 2016; 17(1):46. DOI: https://doi.org/10.1186/s12910-016-0129-x
Matthews S. Moral self-orientation in Alzheimer’s dementia. Kennedy Institute Ethics Journal. 2020;30(2):141-166. DOI: https://doi.org/10.1353/ken.2020.0009
Menzel P, Chandler-Cramer C. Advanced directives, dementia and withholding food and water by mouth. Hastings Cent Rep. 2014;44(3):23-37. DOI: https://doi.org/10.1002/hast.313
Furfari K, Abbott J. Withdrawing and withholding in the clinical arena. Am J Bioeth. 2019;19(3):45-47. DOI: https://doi.org/10.1080/15265161.2018.1563658
Post S. Tube feeding and advanced progressive dementia. The Hastings Cent Rep. 2001;31(1):36-42. DOI: https://doi.org/10.2307/3528732
English V, Sheather J. Withdrawing clinically assisted nutrition and hydration (CANH) in patients with prolonged disorders of consciousness: is there still a role for the courts? J Med Ethics. 2017;0:1-5. DOI: https://doi.org/10.1136/medethics-2017-104309
Clarke G, Galbraith S, Woodward J, Holland A, Barclay S. Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how? BMC Med Ethics. 2015;16:41. DOI: https://doi.org/10.1186/s12910-015-0034-8
Coyle N. Palliative Care, Hospice Care, and Bioethics. Journal of Hospice & Palliative Nursing. 2014;16(1)6-12. DOI: https://doi.org/10.1097/NJH.0000000000000032
Reisberg B, Ferris SH, De Leon MJ, Crook T. The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry. 1982;139(9):1136-139. DOI: https://doi.org/10.1176/ajp.139.9.1136
Hanson L, Kistler C, Lavin K, Gabriel S, Ernecoff N, Lin F, et al. Triggered palliative care for late-stage dementia: a pilot randomized trial. Journal of Pain and Symptom Management. 2019;57(1):10-9. DOI: https://doi.org/10.1016/j.jpainsymman.2018.10.494
López M, Charter R, Mostafavi B, Nibut L, Smith W. Psychometric properties of the Folstein Mini-Mental State Examination. Assessment. 2005;12(2):137-44. DOI: https://doi.org/10.1177/1073191105275412
Folstein MF, Folstein SE, McHugh PR. Mini-mental state. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12(3):189-98. DOI: https://doi.org/10.1016/0022-3956(75)90026-6
Buiza Bueno C, Navarro A, Díaz Orueta U, González M, Alaba Trueba J, Arriola Manchola E. Evaluación breve del estado cognitivo de la demencia en estadios avanzados: resultados preliminares de la validación española del Severe Mini-Mental State Examination. Rev Esp Geriatr Gerontol. 2011;46(3):131-138. DOI: https://doi.org/10.1016/j.regg.2010.09.006
Consejo de Certificación de Profesionales Médicos (CCPM) [Internet]. Argentina: Ministerio de Salud. Disponible en: http://www.ccpm.org.ar/index.php/listado-de-la-seleccion-solicitada/
Streiner D L, Norman G R. Health measurement scales: a practical guide to their development and use. Oxford University Press; 1994.
Moreno Villares JM, Álvarez Hernández J, García de Lorenzo Mateos A, Grupo de Ética de la Sociedad Española de Nutrición Parenteral y Enteral. Encuesta sobre aspectos éticos en nutrición artificial domiciliaria. Nutr Hosp. 2007;22(1):38-45. Disponible en: https://scielo.isciii.es/scielo.php?pid=S0212-16112007000100005&script=sci_arttext&tlng=pt
Falvy-Bockos I, Peralta Vargas C, Valdivia-Alcalde C, Chambergo-Michilot D. Conocimientos de médicos geriatras respecto a la terminalidad de pacientes con demencia avanzada. Horizonte Médico. 2022;22(2):e1747. DOI: https://doi.org/10.24265/horizmed.2022.v22n2.01
Sampson EL, Jones L, Thune-Boyle IC, Kukkastenvehmas R, King M, Leurent B, et al. Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliat Med. 2011;25(3):197-209. DOI: https://doi.org/10.1177/0269216310391691
Druml C, Ballmer PE, Druml W, Oehmichen F, Shenkin A, Singer P, et al. ESPEN guideline on ethical aspects of artificial nutrition and hydration. Clin Nutr. 2016;16:1-12. DOI: https://doi.org/10.1016/j.clnu.2016.02.006
Volkert D, Chourdakis M, Faxen-irving G, Frühwald T, Landi F, Suominen MH, et al. ESPEN guidelines on nutrition in dementia. Clin Nutr. 2015;34:1052-073. DOI: https://doi.org/10.1016/j.clnu.2015.09.004
Barker S, Lynch M, Hopkinson J. Decision making for people living with dementia by their carers at the end of life: a rapid scoping review. Int J Palliat Nurs. 2017;23(9):446-56. DOI:https://doi.org/10.12968/ijpn.2017.23.9.446
Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, Volicer L, Givens JL, Hamel MB. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529-538. DOI: https://doi.org/10.1056/NEJMoa0902234
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