Araştırma Makalesi
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Informed Refusal in Pediatric Practice: a Single Center Experience of a Tertiary Care Children’s Hospital

Yıl 2021, Cilt: 21 Sayı: 3, 254 - 259, 14.01.2022
https://doi.org/10.26650/jchild.2021.1003850

Öz

Objective: Informed consent and refusal of medical procedure and treatment are patient rights that are used by parents or legal representatives of children. This study was conducted to determine the most common treatments and medical procedures refused by parents, their distribution according to clinics, and the frequency of reporting the refusal as child medical neglect to governmental and/or judicial authorities. Materials and Methods: In this cross-sectional study, the files in the hospital database of all patients who were admitted to the emergency department, intensive care units, all general pediatrics, pediatric subspecialities and surgery clinics of our hospital between 1 January and 30 June 2019 were retrospectively reviewed. All patients whose medical procedures and treatment were refused during the study period were included in our study. Results: The study group consisted of 348 patients whose medical procedure and treatment were refused by signing an informed refusal form during the study (median age: 1 year 9 months; Male/Female: 197/151). The overall refusal rate was 2.7%. Most of the refusals had occurred in the emergency department. The most common refused recommendation was hospitalization (303/348; 87%), while the most common refused invasive procedure was lumbar puncture (18/39; 46%). There were no cases who refused end-of-life support in the study group, including intensive care units and palliative care units. Only 7.5% of the patients were evaluated as child abuse and neglect, and reported to the governmental/judicial authorities. Conclusion: Discharge against medical advice, which has been reported to increase in recent years, is the most common form of refusal in our study group. Children whose medical procedures and treatment were refused should be carefully evaluated for child abuse and neglect.

Destekleyen Kurum

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Proje Numarası

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Teşekkür

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Kaynakça

  • 1. Katz AL, Webb SA; COMMITTEE ON BIOETHICS. Informed Consent in Decision-Making in Pediatric Practice. Pediatrics 2016;138(2):e20161485. doi: 10.1542/peds.2016-1485. google scholar
  • 2. Kaushik JS, Narang M, Agarwal N. Informed consent in pediatric practice. Indian Pediatr 2010;47(12):1039-46. doi: 10.1007/ s13312-010-0173-4. google scholar
  • 3. Steinberg A. Disclosure of information and informed consent: ethical and practical considerations. J Child Neurol 2009;24(12):1568-71. doi: 10.1177/0883073809337033. google scholar
  • 4. Appelbaum PS. Clinical practice. Assessment of patients’ competence to consent to treatment. N Engl J Med 2007;357(18):1834-40. doi: 10.1056/NEJMcp074045 google scholar
  • 5. Roberts LW. Informed consent and the capacity for voluntarism. Am J Psychiatry 2002;159(5):705-12. doi: 10.1176/appi.ajp.159.5.705 google scholar
  • 6. Entwistle VA, Carter SM, Cribb A, McCaffery K. Supporting patient autonomy: the importance of clinician-patient relationships. J Gen Intern Med 2010;25(7):741-5. doi: 10.1007/s11606-010-1292-2. google scholar
  • 7. De Lourdes Levy M, Larcher V, Kurz R. Informed Consent/ Assent in Children. Statement of The Ethics Working Group of the Confederation of European Specialists in Paediatrics (CESP). European Journal of Pediatrics 2003;162:629-33. google scholar
  • 8. McCabe MA. Involving children and adolescents in medical decision making: developmental and clinical considerations. J Pediatr Psychol 1996;21(4):505-16. doi: 10.1093/jpepsy/21.4.505. google scholar
  • 9. Spinetta JJ, Masera G, Jankovic M, Oppenheim D, Martins AG, Arush B, et al. Valid informed consent and participative decision-making in children with cancer and their parents: A report of the SIOP working committee on psychosocial issues in pediatric oncology. Pediatric Blood & Cancer 2003;40(4):244-6. google scholar
  • 10. Appelbaum PS, Roth LH. Patients who refuse treatment in medical hospitals. JAMA 1983;250(10):1296-301. google scholar
  • 11. Kuther TL. Medical decision-making and minors: issues of consent and assent. Adolescence 2003;38(150):343-58. google scholar
  • 12. American Academy of Pediatrics Committee on Bioethics. Informed Consent, Parental Permission and Assent in Pediatric Practice. Pediatrics 1995;95(2):314-7. google scholar
  • 13. Berger JE, Consent by proxy for nonurgent pediatric care. Pediatrics 2003;112(5):1186-95. google scholar
  • 14. Stultiens L, Goffin T, Borry P, Dierickx K, Nys H. Minors and informed consent: a comparative approach. European Journal of Health Law 2007;14(1):21-46. google scholar
  • 15. Alfandre DJ. “I’m Going Home”: Discharges against medical advice. Mayo Clinic Proceedings 2009;84(3):255-60. google scholar
  • 16. Macrohon BC. Pediatrician’s perspectives on discharge against medical advice (DAMA) among pediatric patients: a qualitative study. BMC Pediatr 2012;12:75. doi:10.1186/1471-2431-12-75. google scholar
  • 17. Spooner KK, Salemi JL, Salihu HM, Zoorob RJ. Discharge against medical advice in the United States, 2002-2011. Mayo Clin Proc 2017;92:525-35. google scholar
  • 18. Glasgow JM, Vaughn-Sarrazin M, Kaboli PJ. Leaving against medical advice (AMA): Risk of 30-day mortality and hospital readmission. J Gen Intern Med 2010;25:926-9. google scholar
  • 19. T.C. Sağlık Bakanlığı Hasta hakları Yönetmeliği 24-26 Madde Resmi Gazete, Tarih: 01.08.1998; Sayı: 23420. Available at: https://www. mevzuat.gov.tr/mevzuat? MevzuatNo=4847&MevzuatTur=7&Mev zuatTertip=5 Accessed 21 March 2014. google scholar
  • 20. Yong TY, Fok JS, Hakendorf P, Ben-Tovim D, Thompson CH, Li JY. Characteristics and outcomes of discharges against medical advice among hospitalised patients. Intern Med J 2013;43:798-802. google scholar
  • 21. Kraut A, Fransoo R, Olafson K, Ramsey CD, Yogendran M, Garland A. A population-based analysis of leaving the hospital against medical advice: incidence and associated variables. BMC Health Serv Res. 2013 Oct 14;13:415. doi: 10.1186/1472-6963-13-415. google scholar
  • 22. Roodpeyma S, Hoseyni SA. Discharge of children from hospital against medical advice. World J Pediatr 2010;6(4):353-6. doi: 10.1007/s12519-010-0202-3. google scholar
  • 23. Sealy L, Zwi K, McDonald G, Saavedra A, Crawford L, Gunasekera H. Predictors of Discharge Against Medical Advice in a Tertiary Paediatric Hospital. Int J Environ Res Public Health 2019;16(8):1326. doi: 10.3390/ijerph16081326. google scholar
  • 24. Osuorah CD, Ndu IK, Asinobi IN, Ekwochi U. Discharge against medical advice (DAMA) among the paediatric age group in Enugu State University Teaching Hospital Parklane. Enugu J Exp Res 2016;4:55-62. google scholar
  • 25. Gündüz RC, Halil H, Gürsoy C, Çifci A, Özgün S, Kodaman T, Sönmez M. Refusal of medical treatment in the pediatric emergency service: analysis of reasons and aspects. Turk J Pediatr 2014;56(6):638-42. google scholar
  • 26. Narchi H, Ghatasheh G, Hassani NA, Reyami LA, Khan Q. Comparison of underlying factors behind parental refusal or consent for lumbar puncture. World J Pediatr 2013;9:336-41. doi:10.1007/s12519-013-0419-z google scholar
  • 27. Acoglu EA, Oguz MM, Sari E, Yucel H, Akcaboy M, Zorlu P, et al. Parental Attitudes and Knowledge About Lumbar Puncture in Children. Pediatr Emerg Care 2021;37(7):e380-e383. doi: 10.1097/ PEC.0000000000001594. google scholar
  • 28. Rothman MD, Van Ness PH, O’Leary JR, Fried TR. Refusal of medical and surgical interventions by older persons with advanced chronic disease. J Gen Intern Med 2007;22(7):982-7. doi: 10.1007/s11606-007-0222-4. google scholar
  • 29. American Academy of Pediatrics, Committee on Bioethics. Informed consent in decision-making in pediatric practice [policy statement]. Pediatrics 2016. google scholar
  • 30. Moritz D, Ebbs P. Consent and refusal of treatment by older children in emergency settings. Emerg Med Australas 2021;33(1):168-71. doi: 10.1111/1742-6723.13685. google scholar
  • 31. Kopelman LM. The best-interests standard as threshold, ideal, and standard of reasonableness. J Med Philos 1997;22(3):271-89. google scholar
  • 32. Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth 2004;25(4):243-64. doi: 10.1007/s11017- 004-3146-6. google scholar
  • 33. Diekema DS. Decision Making on Behalf of Children: Understanding the Role of the Harm Principle. J Clin Ethics 2019;30(3):207-12. google scholar
  • 34. Ahmed M, Ejaz M, Nasir S, Mainosh S, Jahangeer A, Bhatty M, et al. Parental Refusal to Lumbar Puncture: Effects on Treatment, Hospital Stay and Leave Against Medical Advice. Cureus 2020;12(4):e7781. doi: 10.7759/cureus.7781. google scholar

Pediatri Pratiğinde Bilgilendirilmiş Ret: Üçüncü Basamak Bir Çocuk Hastanesinin Tek Merkez Deneyimi

Yıl 2021, Cilt: 21 Sayı: 3, 254 - 259, 14.01.2022
https://doi.org/10.26650/jchild.2021.1003850

Öz

Amaç: Aydınlatılmış onam ve beraberinde gelen tıbbi işlem ve tedaviyi reddetme hakkı, çocukluk çağında ebeveynler veya yasal temsilciler tarafından kullanılmaktadır. Bu çalışma, çocukluk çağında reddedilen tıbbi işlem ve tedavilerin neler olduğu ve kliniklere göre dağılımı ile ret sonrası çocuk istismarı ve ihmali açısından bildirim sıklığının saptanması amacıyla yürütüldü. Gereç ve Yöntem: Bu kesitsel araştırma, üçüncü basamak olarak hizmet veren ve aynı zamanda eğitim araştırma hastanesi olan bir çocuk hastanesinde yapıldı. Hastanemiz acil servis, yoğun bakım üniteleri, tüm genel pediatri, yan dal ve cerrahi kliniklerinde 1 Ocak- 30 Haziran 2019 tarihleri arasında izlenmiş tüm hastaların, hastane veri tabanındaki dosyaları geriye dönük olarak incelendi. Belirtilen çalışma süresi boyunca tıbbi işlem ve tedavi reddi yapılan tüm hastalar çalışmamıza dahil edildi. Bulgular: Çalışma grubu, çalışma süresince tıbbi işlem ve tedavisi, bilgilendirilmiş ret formu imzalanarak reddedilen 348 hastadan oluştu (ortanca yaş: 1 yaş 9 ay; Erkek/Kız: 197/151). Genel ret oranı %2,7 (348/12844) olarak belirlendi. Tıbbi işlem ve reddin en çok oluştuğu birimin acil servis olduğu görüldü. En sık reddedilen durum, hastaneye yatırılarak izlem (303/348; %87), en sık reddedilen girişimsel işlem lomber ponksiyon (18/39; %46) idi. Yoğun bakımlar ve palyatif bakım ünitesi dahil olmak üzere, çalışma grubunda yaşam sonu desteği reddedilen olgu saptanmadı. Hastaların sadece %7,5’i çocuk ihmali olarak değerlendirilerek adli ve idari makamlara bildirilmişti. Sonuç: Son yıllarda giderek arttığı bildirilen, tıbbi öneriye rağmen hastaneden ayrılma, çalışma grubumuzda en sık rastlanan ret şeklidir. Tıbbi işlem ve tedavisi reddedilen çocuklar, çocuk istismarı ve ihmali açısından dikkatli değerlendirilmelidir.

Proje Numarası

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Kaynakça

  • 1. Katz AL, Webb SA; COMMITTEE ON BIOETHICS. Informed Consent in Decision-Making in Pediatric Practice. Pediatrics 2016;138(2):e20161485. doi: 10.1542/peds.2016-1485. google scholar
  • 2. Kaushik JS, Narang M, Agarwal N. Informed consent in pediatric practice. Indian Pediatr 2010;47(12):1039-46. doi: 10.1007/ s13312-010-0173-4. google scholar
  • 3. Steinberg A. Disclosure of information and informed consent: ethical and practical considerations. J Child Neurol 2009;24(12):1568-71. doi: 10.1177/0883073809337033. google scholar
  • 4. Appelbaum PS. Clinical practice. Assessment of patients’ competence to consent to treatment. N Engl J Med 2007;357(18):1834-40. doi: 10.1056/NEJMcp074045 google scholar
  • 5. Roberts LW. Informed consent and the capacity for voluntarism. Am J Psychiatry 2002;159(5):705-12. doi: 10.1176/appi.ajp.159.5.705 google scholar
  • 6. Entwistle VA, Carter SM, Cribb A, McCaffery K. Supporting patient autonomy: the importance of clinician-patient relationships. J Gen Intern Med 2010;25(7):741-5. doi: 10.1007/s11606-010-1292-2. google scholar
  • 7. De Lourdes Levy M, Larcher V, Kurz R. Informed Consent/ Assent in Children. Statement of The Ethics Working Group of the Confederation of European Specialists in Paediatrics (CESP). European Journal of Pediatrics 2003;162:629-33. google scholar
  • 8. McCabe MA. Involving children and adolescents in medical decision making: developmental and clinical considerations. J Pediatr Psychol 1996;21(4):505-16. doi: 10.1093/jpepsy/21.4.505. google scholar
  • 9. Spinetta JJ, Masera G, Jankovic M, Oppenheim D, Martins AG, Arush B, et al. Valid informed consent and participative decision-making in children with cancer and their parents: A report of the SIOP working committee on psychosocial issues in pediatric oncology. Pediatric Blood & Cancer 2003;40(4):244-6. google scholar
  • 10. Appelbaum PS, Roth LH. Patients who refuse treatment in medical hospitals. JAMA 1983;250(10):1296-301. google scholar
  • 11. Kuther TL. Medical decision-making and minors: issues of consent and assent. Adolescence 2003;38(150):343-58. google scholar
  • 12. American Academy of Pediatrics Committee on Bioethics. Informed Consent, Parental Permission and Assent in Pediatric Practice. Pediatrics 1995;95(2):314-7. google scholar
  • 13. Berger JE, Consent by proxy for nonurgent pediatric care. Pediatrics 2003;112(5):1186-95. google scholar
  • 14. Stultiens L, Goffin T, Borry P, Dierickx K, Nys H. Minors and informed consent: a comparative approach. European Journal of Health Law 2007;14(1):21-46. google scholar
  • 15. Alfandre DJ. “I’m Going Home”: Discharges against medical advice. Mayo Clinic Proceedings 2009;84(3):255-60. google scholar
  • 16. Macrohon BC. Pediatrician’s perspectives on discharge against medical advice (DAMA) among pediatric patients: a qualitative study. BMC Pediatr 2012;12:75. doi:10.1186/1471-2431-12-75. google scholar
  • 17. Spooner KK, Salemi JL, Salihu HM, Zoorob RJ. Discharge against medical advice in the United States, 2002-2011. Mayo Clin Proc 2017;92:525-35. google scholar
  • 18. Glasgow JM, Vaughn-Sarrazin M, Kaboli PJ. Leaving against medical advice (AMA): Risk of 30-day mortality and hospital readmission. J Gen Intern Med 2010;25:926-9. google scholar
  • 19. T.C. Sağlık Bakanlığı Hasta hakları Yönetmeliği 24-26 Madde Resmi Gazete, Tarih: 01.08.1998; Sayı: 23420. Available at: https://www. mevzuat.gov.tr/mevzuat? MevzuatNo=4847&MevzuatTur=7&Mev zuatTertip=5 Accessed 21 March 2014. google scholar
  • 20. Yong TY, Fok JS, Hakendorf P, Ben-Tovim D, Thompson CH, Li JY. Characteristics and outcomes of discharges against medical advice among hospitalised patients. Intern Med J 2013;43:798-802. google scholar
  • 21. Kraut A, Fransoo R, Olafson K, Ramsey CD, Yogendran M, Garland A. A population-based analysis of leaving the hospital against medical advice: incidence and associated variables. BMC Health Serv Res. 2013 Oct 14;13:415. doi: 10.1186/1472-6963-13-415. google scholar
  • 22. Roodpeyma S, Hoseyni SA. Discharge of children from hospital against medical advice. World J Pediatr 2010;6(4):353-6. doi: 10.1007/s12519-010-0202-3. google scholar
  • 23. Sealy L, Zwi K, McDonald G, Saavedra A, Crawford L, Gunasekera H. Predictors of Discharge Against Medical Advice in a Tertiary Paediatric Hospital. Int J Environ Res Public Health 2019;16(8):1326. doi: 10.3390/ijerph16081326. google scholar
  • 24. Osuorah CD, Ndu IK, Asinobi IN, Ekwochi U. Discharge against medical advice (DAMA) among the paediatric age group in Enugu State University Teaching Hospital Parklane. Enugu J Exp Res 2016;4:55-62. google scholar
  • 25. Gündüz RC, Halil H, Gürsoy C, Çifci A, Özgün S, Kodaman T, Sönmez M. Refusal of medical treatment in the pediatric emergency service: analysis of reasons and aspects. Turk J Pediatr 2014;56(6):638-42. google scholar
  • 26. Narchi H, Ghatasheh G, Hassani NA, Reyami LA, Khan Q. Comparison of underlying factors behind parental refusal or consent for lumbar puncture. World J Pediatr 2013;9:336-41. doi:10.1007/s12519-013-0419-z google scholar
  • 27. Acoglu EA, Oguz MM, Sari E, Yucel H, Akcaboy M, Zorlu P, et al. Parental Attitudes and Knowledge About Lumbar Puncture in Children. Pediatr Emerg Care 2021;37(7):e380-e383. doi: 10.1097/ PEC.0000000000001594. google scholar
  • 28. Rothman MD, Van Ness PH, O’Leary JR, Fried TR. Refusal of medical and surgical interventions by older persons with advanced chronic disease. J Gen Intern Med 2007;22(7):982-7. doi: 10.1007/s11606-007-0222-4. google scholar
  • 29. American Academy of Pediatrics, Committee on Bioethics. Informed consent in decision-making in pediatric practice [policy statement]. Pediatrics 2016. google scholar
  • 30. Moritz D, Ebbs P. Consent and refusal of treatment by older children in emergency settings. Emerg Med Australas 2021;33(1):168-71. doi: 10.1111/1742-6723.13685. google scholar
  • 31. Kopelman LM. The best-interests standard as threshold, ideal, and standard of reasonableness. J Med Philos 1997;22(3):271-89. google scholar
  • 32. Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth 2004;25(4):243-64. doi: 10.1007/s11017- 004-3146-6. google scholar
  • 33. Diekema DS. Decision Making on Behalf of Children: Understanding the Role of the Harm Principle. J Clin Ethics 2019;30(3):207-12. google scholar
  • 34. Ahmed M, Ejaz M, Nasir S, Mainosh S, Jahangeer A, Bhatty M, et al. Parental Refusal to Lumbar Puncture: Effects on Treatment, Hospital Stay and Leave Against Medical Advice. Cureus 2020;12(4):e7781. doi: 10.7759/cureus.7781. google scholar
Toplam 34 adet kaynakça vardır.

Ayrıntılar

Birincil Dil İngilizce
Konular Çocuk Sağlığı ve Hastalıkları
Bölüm Araştırma Makaleleri
Yazarlar

Mine Korcum 0000-0002-7432-9453

Özlem Bağ 0000-0003-2178-4695

Sevay Alşen Güney 0000-0003-1064-6115

Proje Numarası -
Yayımlanma Tarihi 14 Ocak 2022
Yayımlandığı Sayı Yıl 2021 Cilt: 21 Sayı: 3

Kaynak Göster

APA Korcum, M., Bağ, Ö., & Alşen Güney, S. (2022). Informed Refusal in Pediatric Practice: a Single Center Experience of a Tertiary Care Children’s Hospital. Journal of Child, 21(3), 254-259. https://doi.org/10.26650/jchild.2021.1003850
AMA Korcum M, Bağ Ö, Alşen Güney S. Informed Refusal in Pediatric Practice: a Single Center Experience of a Tertiary Care Children’s Hospital. Journal of Child. Ocak 2022;21(3):254-259. doi:10.26650/jchild.2021.1003850
Chicago Korcum, Mine, Özlem Bağ, ve Sevay Alşen Güney. “Informed Refusal in Pediatric Practice: A Single Center Experience of a Tertiary Care Children’s Hospital”. Journal of Child 21, sy. 3 (Ocak 2022): 254-59. https://doi.org/10.26650/jchild.2021.1003850.
EndNote Korcum M, Bağ Ö, Alşen Güney S (01 Ocak 2022) Informed Refusal in Pediatric Practice: a Single Center Experience of a Tertiary Care Children’s Hospital. Journal of Child 21 3 254–259.
IEEE M. Korcum, Ö. Bağ, ve S. Alşen Güney, “Informed Refusal in Pediatric Practice: a Single Center Experience of a Tertiary Care Children’s Hospital”, Journal of Child, c. 21, sy. 3, ss. 254–259, 2022, doi: 10.26650/jchild.2021.1003850.
ISNAD Korcum, Mine vd. “Informed Refusal in Pediatric Practice: A Single Center Experience of a Tertiary Care Children’s Hospital”. Journal of Child 21/3 (Ocak 2022), 254-259. https://doi.org/10.26650/jchild.2021.1003850.
JAMA Korcum M, Bağ Ö, Alşen Güney S. Informed Refusal in Pediatric Practice: a Single Center Experience of a Tertiary Care Children’s Hospital. Journal of Child. 2022;21:254–259.
MLA Korcum, Mine vd. “Informed Refusal in Pediatric Practice: A Single Center Experience of a Tertiary Care Children’s Hospital”. Journal of Child, c. 21, sy. 3, 2022, ss. 254-9, doi:10.26650/jchild.2021.1003850.
Vancouver Korcum M, Bağ Ö, Alşen Güney S. Informed Refusal in Pediatric Practice: a Single Center Experience of a Tertiary Care Children’s Hospital. Journal of Child. 2022;21(3):254-9.