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

Mine Korcum; Özlem Bağ; Sevay Alşen Güney

doi:10.26650/jchild.2021.1003850

Research Article

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

Year 2021, Volume: 21 Issue: 3, 254 - 259, 14.01.2022

Mine Korcum Özlem Bağ Sevay Alşen Güney

https://doi.org/10.26650/jchild.2021.1003850

Abstract

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.

Keywords

Refusal of treatment, refusal of medical procedures, child abuse and neglect, medical neglect, informed refusal

Supporting Institution

Project Number

Thanks

References

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

Year 2021, Volume: 21 Issue: 3, 254 - 259, 14.01.2022

Mine Korcum Özlem Bağ Sevay Alşen Güney

https://doi.org/10.26650/jchild.2021.1003850

Abstract

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.

Keywords

Tedavi reddi, tıbbi işlem reddi, çocuk istismarı ve ihmali, tıbbi ihmal, bilgilendirimiş ret

Project Number

References

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

There are 34 citations in total.

Details

Primary Language	English
Subjects	Paediatrics
Journal Section	Research Articles
Authors	Mine Korcum 0000-0002-7432-9453 Özlem Bağ 0000-0003-2178-4695 Sevay Alşen Güney 0000-0003-1064-6115
Project Number	-
Publication Date	January 14, 2022
Published in Issue	Year 2021 Volume: 21 Issue: 3

Cite

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. January 2022;21(3):254-259. doi:10.26650/jchild.2021.1003850
Chicago	Korcum, Mine, Özlem Bağ, and Sevay Alşen Güney. “Informed Refusal in Pediatric Practice: A Single Center Experience of a Tertiary Care Children’s Hospital”. Journal of Child 21, no. 3 (January 2022): 254-59. https://doi.org/10.26650/jchild.2021.1003850.
EndNote	Korcum M, Bağ Ö, Alşen Güney S (January 1, 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, and S. Alşen Güney, “Informed Refusal in Pediatric Practice: a Single Center Experience of a Tertiary Care Children’s Hospital”, Journal of Child, vol. 21, no. 3, pp. 254–259, 2022, doi: 10.26650/jchild.2021.1003850.
ISNAD	Korcum, Mine et al. “Informed Refusal in Pediatric Practice: A Single Center Experience of a Tertiary Care Children’s Hospital”. Journal of Child 21/3 (January 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 et al. “Informed Refusal in Pediatric Practice: A Single Center Experience of a Tertiary Care Children’s Hospital”. Journal of Child, vol. 21, no. 3, 2022, pp. 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.

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