CHAPTER


DOI :10.26650/B/CH17CH24.2024.002.16   IUP :10.26650/B/CH17CH24.2024.002.16    Full Text (PDF)

End-of-Life Care and Ethics

Ayfer Aydın

End-of-life care is the care given for the child and family to spend their last periods in a comfortable and peaceful way. Pediatric palliative care nurse experiences some ethical dilemmas while caring for the child and her/ his family in the last period of his life. In the end-of-life period, the pediatric palliative care nurses are faced with many ethical dilemmas such as as terminating care and treatment, not being able to control pain and other symptoms, not being able to participate in the decisions of the child and his family, performing unnecessary procedures, “ do not resuscitate” order, giving intensive chemotherapy treatment and discontinuation of hydration and nutrition. These ethical dilemmas can further complicate the difficult circumstances associated with the often dying sick child. The application of ethical principles is an important component of nursing practice. The role of the nurse is very important in solving ethical dilemmas. The pediatric palliative care nurse maintains the communication between the child, the family and the palliative care team. In this process, healthy communication between the sick child, family and palliative care team is very important in solving ethical dilemmas. It is important that the palliative care team works in harmony in order to minimize and easily solve ethical problems. The pediatric palliative care nurse plays an active role in every stage of the process of informing the child and family about the disease and treatment. Choosing the appropriate medical and nursing interventions, evaluating the benefits and harms to the child appropriately, and fulfilling the wishes and needs of the child patient are among the most appropriate nursing practices.


DOI :10.26650/B/CH17CH24.2024.002.16   IUP :10.26650/B/CH17CH24.2024.002.16    Full Text (PDF)

Yaşam Sonu Bakım ve Eti̇k

Ayfer Aydın

Yaşam sonu bakım, çocuk ve ailenin son dönemlerini rahat ve huzurlu bir şekilde geçirmesi için verilen bakımdır. Pediatrik palyatif bakım hemşiresi, yaşamının son dönemindeki çocuk ve ailesine bakım verirken bazı etik ikilimler yaşamaktadır. Yaşam sonu dönemde, pediatrik palyatif bakım hemşiresi, bakım ve tedavinin sonlandırılması, ağrı ve diğer semptomların kontrol altına alınamaması, çocuk ve ailesinin kararlara katılamaması, gereksiz işlemlerin yapılması, “resüsitasyon uygulamayın” istemi, yoğun kemoterapi tedavisinin verilmesi, hidrasyon ve beslenmenin sürdürülmesi ve kesilmesi gibi birçok etik ikilemle karşılaşmaktadır. Bu etik ikilemler, genellikle ölmek üzere olan hasta çocukla ilgili zor olan koşulları daha da karmaşık hale getirebilir. Etik ilkelerin uygulanması hemşirelik uygulamalarının önemli bir bileşenidir. Etik ikilemlerin çözümünde, hemşirenin rolü oldukça önemlidir. Pediatrik palyatif bakım hemşiresi çocuk, aile ve palyatif bakım ekibi arasındaki iletişimin sürdürülmesini sağlamaktadır. Bu süreçte hasta çocuk, aile ve palyatif bakım ekibi arasındaki sağlıklı iletişim etik ikilemlerin çözümünde çok önemlidir. Etik sorunların en aza indirilmesi ve kolayca çözülebilmesi için palyatif bakım ekibinin uyum içinde çalışması önemlidir. Pediatrik palyatif bakım hemşiresi, çocuk ve ailenin hastalık ve tedavi konusunda bilgilendirilme sürecinin her aşamasında etkin bir rol oynamaktadır. Uygun tıbbi girişimlerin ve hemşirelik girişimlerin seçilmesi, çocuğa olan yarar ve zararlarının uygun bir şekilde değerlendirilmesi, çocuk hastanın isteklerinin ve gereksinimlerinin saygın bir şekilde yerine getirilmesi en uygun hemşirelik uygulamaları arasında yer almaktadır.



References

  • AAP Committee on Bioethics. (1995). Informed consent, parental permission, and assent in pediatric practi-ce. Pediatrics, 95(2), 314-317. google scholar
  • Ahmedzai, S. H., Costa, A., Blengini, C., Bosch, A., Sanz-Ortiz, J., Ventafridda, V, ... International Working Group Convened by the European School of Oncology (2004). A new international framework for palliative care. European Journal of Cancer (Oxford, England: 1990), 40(15), 2192-2200. https://doi.org/10.1016Zj. ejca.2004.06.009 google scholar
  • Aksoy, Ş., Çevik, E., ve Edisan, Z. (2002). Yaşamın sonunda verilen kararlara ilişkin bir etik tartışma. Türkiye Klinikleri Tıp Etiği-Hukuku-Tarihi Özel Dergisi, 10, 263-268. google scholar
  • Alahmad, G., Al-Kamli, H., & Alzahrani, H. (2020). Ethical challenges of pediatric cancer care: Interviews with nurses in Saudi Arabia. Cancer Control, 27(1), 1-6. https://doi.org/10.1177/1073274820917210 google scholar
  • Ayhan Balık, C. H. ve Buzlu, S. (2020). Onkolojik problemi olan çocuk ve ailesine psikososyal yaklaşımlar. Journal ofAcademic Research in Nursing, 6(3), 592-597. google scholar
  • Baker, J. N., Hinds, P. S., Spunt, S. L., Barfield, R. C., Allen, C., Powell, B. C., ... Kane, J. R. (2008). Integration of palliative care practices into the ongoing care of children with cancer: individualized care planning and coordination. Pediatric clinics ofNorth America, 55(1), 223-xii. https://doi.org/10.1016/j.pcl.2007.10.011 google scholar
  • Bartholdson, C., Kreicbergs, U., Sveen, J., Lövgren, M., & Pohlkamp, L. (2022). Communication about diag-nosis and prognosis-A population-based survey among bereaved parents in pediatric oncology. Psycho-On-cology, 31(12), 2149-2158. https://doi.org/10.1002/pon.6058 google scholar
  • Benjamin, M., & Curtis, J. (2010). Ethics in nursing: cases, principles, and reasoning. USA: Oxford University Press. google scholar
  • Berlandi, J. L., & Duncan, J. (2008). Perioperative DNR orders, palliative surgery, and ethics. Perioperative Nursing Clinics, 3(3), 223-232. google scholar
  • Carvalho, A. S., Martins Pereira, S., Jacomo, A., Magalhâes, S., Araujo, J., Hernandez-Marrero, P., Costa Gomes, C., & Schatman, M. E. (2018). Ethical decision making in pain management: a conceptual framework. Jour-nal ofpain research, 11, 967-976. https://doi.org/10.2147/JPR.S162926 google scholar
  • Cesur, A. (2022). Pediatrik palyatif bakım hastalarının günlük yaşam aktiviteleri yönetiminde ailelerin ve hemşirelerin deneyimlerinin incelenmesi. (Yüksek lisans tezi). İzmir Katip Çelebi Üniversitesi, Sağlık Bilimleri Enstitüsü, İzmir. google scholar
  • Chen, Y., Jiang, J., Peng, W., & Zhang, C. (2022). Palliative sedation for children at end of life: a retrospective cohort study. BMC Palliative Care, 21(1), 1-8. google scholar
  • Cimino, J. E. (2003). A clinician’s understanding of ethics in palliative care: An American perspective. Critical Reviews in Oncology/Hematology, 46(1), 17-24. https://doi.org/10.1016/s1040-8428(03)00004-0 google scholar
  • Contro, N., Larson, J., Scofield, S., Sourkes, B., & Cohen, H. (2002). Family perspectives on the quality of pedi-atric palliative care. Archives of Pediatrics & Adolescent Medicine, 156(1), 14-19. https://doi.org/10.1001/ archpedi.156.1.14 google scholar
  • Coughlin K. W. (2018). Medical decision-making in paediatrics: Infancy to adolescence. Paediatrics & child health, 23(2), 138-146. https://doi.org/10.1093/pch/pxx127 google scholar
  • Czarnecki, M. L., Simon, K., Thompson, J. J., Armus, C. L., Hanson, T. C., Berg, K. A., ... Malin, S. (2011). Bar-riers to pediatric pain management: a nursing perspective. Pain Management Nursing: Official Journal of the American Society of Pain Management Nurses, 12(3), 154-162. https://doi.org/10.1016/j.pmn.2010.07.001 google scholar
  • Davies, B., Sehring, S. A., Partridge, J. C., Cooper, B. A., Hughes, A., Philp, J. C., ... & Kramer, R. F. (2008). Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics, 121(2), 282-288. https://doi.org/10.1542/peds.2006-3153 google scholar
  • Denecke, K., & Deng, Y. (2015). Sentiment analysis in medical settings: New opportunities and challenges. Ar-tificial Intelligence in Medicine, 64(1), 17-27. google scholar
  • Devine, S., Dagher, R. N., Weiss, K. D., & Santana, V. M. (2008). Good clinical practice and the conduct of clinical studies in pediatric oncology. Pediatric Clinics of North America, 55(1), 187-xii. https://doi. org/10.1016/j.pcl.2007.10.008 google scholar
  • Downar, J., Luk, T., Sibbald, R. W., Santini, T., Mikhael, J., Berman, H., & Hawryluck, L. (2011). Why do patients agree to a “Do not resuscitate” or “Full code” order? Perspectives of medical inpatients. Journal of general internal medicine, 26(6), 582-587. https://doi.org/10.1007/s11606-010-1616-2 google scholar
  • Dubois, M. (2005). Ethical issues at the end of life. Techniques in Regional Anesthesia and Pain Manage-ment, 9(3), 133-138. https://doi.org/10.1053/j.trap.2005.06.007 google scholar
  • Durmuş İskender, M. (2018). Yararsız tedavi ve yoğun bakım hemşireleri üzerindeki etkileri. Van Tıp Dergisi, 25(3), 437-440. google scholar
  • Ely, B. (2001). Pediatric nurses’ pain management practice: barriers to change. Pediatric Nursing, 27(5), 473480. google scholar
  • Fallat, M. E., Deshpande, J. K., & American Academy of Pediatrics Section on Surgery, Section on Anesthesia and Pain Medicine, and Committee on Bioethics (2004). Do-not-resuscitate orders for pediatric patients who require anesthesia and surgery. Pediatrics, 114(6), 1686-1692. https://doi.org/10.1542/peds.2004-2119 google scholar
  • Foster, T. L., Lafond, D. A., Reggio, C., & Hinds, P. S. (2010). Pediatric palliative care in childhood cancer nursing: From diagnosis to cure or end of life. Seminars in Oncology Nursing, 26(4), 205-221. https://doi. org/10.1016/j.soncn.2010.08.003 google scholar
  • Friedman, D. L., Hilden, J. M., & Powaski, K. (2004). Issues and challenges in palliative care for children with cancer. Current Oncology Reports, 6(6), 431-437. https://doi.org/10.1007/s11912-004-0073-7 google scholar
  • Goethals, S., Gastmans, C., & de Casterle, B. D. (2010). Nurses’ ethical reasoning and behaviour: A litera-ture review. International Journal of Nursing Studies, 47(5), 635-650. https://doi.org/10.1016/j.ijnurs-tu.2009.12.010 google scholar
  • Grootens-Wiegers, P., Hein, I. M., van den Broek, J. M., & de Vries, M. C. (2017). Medical decision-making in children and adolescents: developmental and neuroscientific aspects. BMC pediatrics, 17(1), 1-10. https:// doi.org/10.1186/s12887-017-0869-x google scholar
  • Gündüz, T., Kırımlıoğlu, N., Eşiyok, B. ve Erdemir, A.D. (2001). Aydınlatılmış onam ve çocuk hastaya ilişkin hukuki düzenlemeler. Türkiye Klinikleri Tıp Etiği Dergisi, 9, 27-34. google scholar
  • Harris M. B. (2004). Palliative care in children with cancer: which child and when? Journal of the National Cancer Institute. Monographs, (32), 144-149. https://doi.org/10.1093/jncimonographs/lgh007 google scholar
  • Hinds, P. S., Drew, D., Oakes, L. L., Fouladi, M., Spunt, S. L., Church, C., & Furman, W. L. (2005). End-of-life care preferences of pediatric patients with cancer. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 23(36), 9146-9154. https://doi.org/10.1200/JCO.2005.10.538 google scholar
  • Hinds, P. S., Oakes, L. L, Hicks, J., Powell, B., Srivastava, D. K., Spunt, S. L., ... Furman, W. L. (2009). “Trying to be a good parent” as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. J Clin Oncol. 10;27(35):5979-85. ttps://doi.org/10.1200/JCO.2008.20.0204. google scholar
  • Jacobs H. H. (2005). Ethics in pediatric end-of-life care: a nursing perspective. Journal of Pediatric Nur-sing, 20(5), 360-369. https://doi.org/10.1016/j.pedn.2005.04.016 google scholar
  • Kim, S., Savage, T. A., Song, M. K., Vincent, C., Park, C. G., Ferrans, C. E., & Kavanaugh, K. (2019). Nurses’ roles and challenges in providing end-of-life care in neonatal intensive care units in South Korea. Applied Nursing Research, 50, 151204. https://doi.org/10.1016/j.apnr.2019.151204 google scholar
  • Kuvaki, B., Boztaş, N., Kaplan, M., Hacıoğlu, C., Yaprak, E. ve Ayaz, O. (2014). Hastanemizde cerrahi bölümlerde çalışan doktorların “Yeniden Canlandırma Yapmama” talimatı konusundaki görüşleri. DEÜ Tıp Fakültesi Dergisi, 28(1), 21-6. google scholar
  • Levi B. H. (2003). Withdrawing nutrition and hydration from children: legal, ethical, and professional issues. Cli-nical pediatrics, 42(2), 139-145. https://doi.org/10.1177/000992280304200207 google scholar
  • Marron, J. M., Cronin, A. M., Kang, T. I., & Mack, J. W. (2018). Intended and unintended consequences: Ethics, communication, and prognostic disclosure in pediatric oncology. Cancer, 124(6), 1232-1241. google scholar
  • Marron, J. M., Jones, E., & Wolfe, J. (2018). Is there ever a role for the unilateral do not attempt resuscitation or-der in pediatric care? Journal of Pain and Symptom Management, 55(1), 164-171. https://doi.org/10.1016/j. jpainsymman.2017.09.006 google scholar
  • Matzo, M. L., Sherman, D. W., Nelson-Marten, P., Rhome, A., & Grant, M. (2004). Ethical and legal issues in end-of-life care: content of the End-of-Life Nursing Education Consortium curriculum and teaching strategies. Journal for Nurses in StaffDevelopment: JNSD: Official Journal of the National Nursing Staff Development Organization, 20(2), 59-68. https://doi.org/10.1097/00124645-200403000-00001 google scholar
  • McCallum, D.E., Byrne, P., & Bruera, E. (2000). How children die in hospital. Journal of Pain and Symptom Management, 20(6), 417-423. https://doi.org/10.1016/s0885-3924(00)00212-8 google scholar
  • McCullough, L. B., & Chervenak, F. A. (2007). Informed consent. Clinics in perinatology, 34(2), 275-vi. https:// doi.org/10.1016/j.clp.2007.03.005 google scholar
  • Michelson, K. N., Patel, R., Haber-Barker, N., Emanuel, L., & Frader, J. (2013). End-of-life care decisions in the PICU: roles professionals play. Pediatric critical care medicine: A journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies, 14(1), e34-e44. https://doi.org/10.1097/PCC.0b013e31826e7408 google scholar
  • Molina-Mula, J., & Gallo-Estrada, J. (2020). Impact of nurse-patient relationship on quality of care and patient autonomy in decision-making. International Journal ofEnvironmental Research and Public Health, 17(3), 835. https://doi.org/10.3390/ijerph17030835 google scholar
  • Montgomery, K. E., Sawin, K. J., & Hendricks-Ferguson, V. (2017). Communication during palliative care and end of life: Perceptions of experienced pediatric oncology nurses. Cancer Nursing, 40(2), E47-E57. https:// doi.org/10.1097/NCC.0000000000000363 google scholar
  • Monturo, C., & Hook, K. (2009). From means to ends: artificial nutrition and hydration. The Nursing Clinics of North America, 44(4), 505-515. https://doi.org/10.1016/j.cnur.2009.07.005 google scholar
  • Morrison, W., & Berkowitz, I. (2007). Do not attempt resuscitation orders in pediatrics. Pediatric Clinics of North America, 54(5), 757-xii. https://doi.org/10.1016/j.pcl.2007.06.005 google scholar
  • Mu, P. F., Tseng, Y. M., Wang, C. C., Chen, Y. J., Huang, S. H., Hsu, T. F., & Florczak, K. L. (2019). Nurses’ ex-periences in end-of-life care in the PICU: A qualitative systematic review. Nursing science quarterly, 32(1), 12-22. https://doi.org/10.1177/0894318418807936 google scholar
  • Myatra, S. N., Salins, N., Iyer, S., Macaden, S. C., Divatia, J. V., Muckaden, M., Kulkarni, P., Simha, S., & Mani, R. K. (2014). End-of-life care policy: An integrated care plan for the dying: A Joint Position Statement of the Indian Society of Critical Care Medicine (ISCCM) and the Indian Association of Palliative Care (IAPC). In-dian Journal of Critical Care Medicine: Peer-reviewed, Official Publication of Indian Society of Critical Care Medicine, 18(9), 615-635. https://doi.org/10.4103/0972-5229.140155 google scholar
  • Örnek Büken, N. (2021). Ağrı yönetiminde etik konular. N. Örnek Çelebi. (Ed.), Ağrı tedavisinde güncel yaklaşımlar ve yenilikler kitabı (1. bs.) içinde (s.31-38). Ankara: Türkiye Klinikleri. google scholar
  • Rost, M. (2019). Palliative care in pediatric oncology: Ethical considerations surrounding shared decision-ma-king (Doctoral thesis). University of Basel, Switzerland. google scholar
  • Rushton, C. H. (2005). A framework for integrated pediatric palliative care: being with dying. Journal of Pedi-atric Nursing, 20(5), 311-325. https://doi.org/10.1016/j.pedn.2005.03.003 google scholar
  • Sabouneh, R., Lakissian, Z., Hilal, N., Sharara-Chami, R. (2020). The state of the Do-Not-Resuscitate Order in a pediatric intensive care unit in the Middle East: A Retrospective Study. Journal of Palliative Care, 37(2),99-106. doi:10.1177/08258597211073228 google scholar
  • Solomon, M. Z., Sellers, D. E., Heller, K. S., Dokken, D. L., Levetown, M., Rushton, C., ... & Fleischman, A. R. (2005). New and lingering controversies in pediatric end-of-life care. Pediatrics, 116(4), 872-883. https:// doi.org/10.1542/peds.2004-0905 google scholar
  • Stanley, K.J., Sawrun, D., & Treantafilos, M. (2008). Ethical issues and clinical expertise at the end of life. The Nursing Clinics of North America, 43(2), 259-vi. https://doi.org/10.1016/j.cnur.2008.02.001 google scholar
  • Taşdelen, Y. & Kürtüncü, M. (2022). Çocuklarda yaşam sonu bakım ve iyi ölüm kavramı. Batı Karadeniz Tıp Dergisi, 6(1), 1-8. https://doi.org/10.29058/mjwbs.1037391 google scholar
  • THD. (2009). Hemşireler için etik ilke ve sorumluluklar: Yaşamını duyuyorum. Erişim adresi: https://www.thder. org.tr/uploads/files/hemsire-brosur.pdf google scholar
  • Tomlinson, D., Capra, M., Gammon, J., Volpe, J., Barrera, M., Hinds, P.S., .. Sung, L. (2006). Parental decision making in pediatric cancer end-of-life care: using focus group methodology as a prephase to seek participant design input. European journal of oncology nursing: the official journal of European Oncology Nursing Society, 10(3), 198-206. https://doi.org/10.1016/j.ejon.2005.11.003 google scholar
  • Utlu, N. (2016). Hastane ortamında hemşirelerin etik yaklaşımı ve etik ikilemler. İstanbul Aydın Üniversitesi Dergisi, 8(29), 17-35. google scholar
  • Van Hulle Vincent, C., & Denyes, M.J. (2004). Relieving children’s pain: nurses’ abilities and analgesic admi-nistration practices. Journal of Pediatric Nursing, 19(1), 40-50. https://doi.org/10.1016/j.pedn.2003.09.006 google scholar
  • Ventovaara, P., Sandeberg, M. af, Râsânen, J., & Pergert, P. (2021). Ethical climate and moral distress in pa-ediatric oncology nursing. Nursing Ethics, 28(6):1061-1072. https://doi.org/10.1177/0969733021994169 google scholar
  • Waske, A., Kühnöl, C. D., & Kramm, C. M. (2019). The use of Do-Not-Resuscitate-Order equivalents in pedi-atric palliative care medicine in Germany. Annals of Palliative Medicine, 8(2), 11220-11120. google scholar
  • Wood, J. (2001). Ethical decision making. Journal of PeriAnesthesia Nursing, 16(1), 6-10. https://doi. org/10.1053/jpan.2001.18202 google scholar
  • Yıldırım, G., Baltacı Göktaş, S., Köse, S. ve Yıldız, T. (2015). Kemoterapi tedavisi gören çocukların annelerindeki kaygı düzeyleri. International Journal of Basic and Clinical Medicine, 2(2), 69-76. google scholar


SHARE




Istanbul University Press aims to contribute to the dissemination of ever growing scientific knowledge through publication of high quality scientific journals and books in accordance with the international publishing standards and ethics. Istanbul University Press follows an open access, non-commercial, scholarly publishing.