Pediatrik palyatif bakımda yaşam sonu bakım kavramı

Abstract

Bir çocuğun yaşam sonu bakımı sorunu çok önemlidir, çünkü bir ailenin ölümle ilgili sıkıntılarından ve kederinden kurtulması tamamen buna bağlıdır. Bu özellikli bakımın kalitesinin iyileştirilmesi için konjenital anomaliler, yaşamı tehdit eden hastalıklar ve yaşamı kısıtlayan durumlarda palyatif bakım birimlerinde beklenen yaşam süresinin ve mortalitenin belirlenmesi yararlı olacaktır. Sadece primer bakım verenler değil, aynı zamanda kardeşler, büyükanne/büyükbabalar, akrabalar ve sağlık profesyonelleri de çocuğun ölümünden etkilenmektedir ve onların ihtiyaçları da önemlidir. Ayrıca günümüzde ailelerin ‘güzel ölüm’ tabirini nasıl tanımladıkları ve bu kayıpla nasıl başa çıkılacağı konusunda daha fazla veriye ihtiyaç vardır. Gelişmekte olan ülkelerdeki pediatrik palyatif bakım personelinin, ölmekte olan çocuk ve ailelerine uygun bakımı verebilmek için yaşam sonu bakımı hakkında disiplinli bir eğitim almaya ihtiyacı vardır. Bir çocuğun hem yaşam hem de ölüm kalitesini artırırken, bununla birlikte konfor, anlam ve destek bulmalarına yardımcı olan aile merkezli bir yaşam sonu bakım sağlamak önemlidir. Pek çok hekim ve sağlık profeyoneli, ölmekte olan hasta ve aileleriyle iletişim kurarken, canlandırma işlemi ve çocuk palyatif bakıma geçiş noktasında deneyimsiz hissetmektedir. Bir çocuğun başına gelebilecek ‘güzel ölüm/saygın ölüm’, yaşam sonu bakımı iyileştirmek için ortaya çıkan bir kavramdır. Bu derlemenin amacı, sağlık bakım hizmetleri profesyonellerine ve hekimlere pediyatrik palyatif bakımda yaşam sonu bakım kavramıyla ilgili farkındalık oluşturmak ve daha geniş bir bakış açısı sağlamaktır.

Keywords

• Bakım
• çocuk
• palyatif
• pediatrik
• yaşam sonu

End-of-life care in pediatric palliative care

Abstract

The problem of EOL care of a child is very important because the recovery of a family from grief over a child’s death depends on that manner. For improving the quality of this specific care, it would be useful to assess the life expectancy/survival of congenital anomalies, life-threatening diseases, conditions that may shorten a child’s life, and the outcomes of palliative care units regarding mortality. Besides, there is an urgent need for more data on what families define as ‘good death’ and how to cope with the loss. Not only caregivers but also siblings, grandparents, relatives, and healthcare professionals are impacted by a child’s death and their needs must be explored. Pediatric palliative care staff in low/middle-income countries need educational assistance for skills of multidisciplinary training about end-of-life care to improve appropriate care for dying children and their families. It is important to provide sensitive and empathetic end-of-life care to children in a family-centered manner helping them to find comfort, meaning, and support while enhancing the quality of a child’s life and death. Many attending physicians felt inexperienced when communicating with dying patients and their families while discussing the transition to palliative care and resuscitation status. Also, the good death of a child is an emerging concept in this research domain to improve end-of-life care for dying children and their families. The goal of this review was to provide pediatric healthcare professionals and physicians with an overview of palliative care regarding end-of-life issues.

Keywords

• Care
• child
• end of life
• palliative
• pediatric

References

1. Crozier F, Hancock LE. Pediatric palliative care: beyond the end of life. Pediatr Nurs 2012; 38-4.
2. Feudtner C, Kang TI, Hexem KR, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics 2011; 127: 1094-101.
3. Michelson KN, Steinhorn DM. Pediatric end-of-life issues and palliative care. Clin Pediatr Emerg Med 2007; 8: 212-9.
4. Feudtner C, Hays RM, Haynes G, et al. Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics 2001; 107: e99.
5. Basu RK. End-of-life care in pediatrics: ethics, controversies, and optimizing the quality of death. Pediatr Clin 2013; 60: 725-39.
6. Liben S, Papadatou D, Wolfe J. Paediatric palliative care: challenges and emerging ideas. Lancet 2008; 371: 852-64.
7. Heron M, Sutton PD, Xu J, et al. Annual summary of vital statistics: 2007. Pediatrics 2010; 125: 4-15.
8. UNICEF. Under-five mortality. UNICEF data. September, 2019.

9. Contro NA, Larson J, Scofield S, et al. Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 2004; 114: 1248-52.
10. Cole JC, Moldenhauer JS, Jones TR, et al. A proposed model for perinatal palliative care. J Obstetr Gynecol Neonatal Nurs 2017; 46: 904-11.
11. Benini F, Congedi S, Rusalen F, et al. Barriers to perinatal palliative care consultation. Front Pediatr 2020; 8.
12. Welch SB. Can the death of a child be good? J Pediatr Nurs 2008; 23: 120-5.
13. Dussel V, Kreicbergs U, Hilden JM, et al. Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manag 2009; 37: 33-43.
14. Mack JW, Hilden JM, Watterson J, et al. Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 2005; 23: 9155-61.
15. Ito Y, Okuyama T, Ito Y, et al. Good death for children with cancer: a qualitative study. Japan J Clin Oncol 2015; 45: 349-55.
16. Graham J, Ramirez A, Cull A, et al. Job stress and satisfaction among palliative physicians. Palliat Med 1996; 10: 185-94.
17. Vazirani RM, Slavin SJ, Feldman JD. Longitudinal study of pediatric house officers’ attitudes toward death and dying. Critic Care Med 2000; 28: 3740-5.
18. Meert KL, Eggly S, Pollack M, et al. Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Critic Care Med 2008; 9: 2.
19. Meyer EC, Ritholz MD, Burns JP, et al. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics 2006; 117: 649-57.
20. Solomon MZ, Sellers DE, Heller KS, et al. New and lingering controversies in pediatric end-of-life care. Pediatrics 2005; 116: 872-83.
21. Wolfe J, Klar N, Grier HE, Duncan J, et al. Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. JAMA 2000; 284: 2469-75.
22. Graham RJ, Robinson WM. Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Development Behav Pediatr 2005; 26: 361-5.
23. Meert KL, Donaldson AE, Newth CJ, et al. Complicated grief and associated risk factors among parents following a child’s death in the pediatric intensive care unit. Arch Pediatr Adolesc Med 2010; 164: 1045-51.
24. Rusalen F, Ferrante A, Pò C, et al. Pain therapy, pediatric palliative care and end-of-life care: training, experience, and reactions of pediatric residents in Italy. Eur J Pediatr 2014; 173: 1201-7.
25. Browning DM, Solomon MZ, Team IfPPCI. The initiative for pediatric palliative care: An interdisciplinary educational approach for healthcare professionals. J Pediatr Nurs 2005; 20: 326-34.
26. Michelson KN, Ryan AD, Jovanovic B, et al. Pediatric residents’ and fellows’ perspectives on palliative care education. J Palliat Med 2009; 12: 451-7.
27. McCabe ME, Hunt EA, Serwint JR. Pediatric residents’ clinical and educational experiences with end-of-life care. Pediatrics 2008; 121: 731-7.
28. Peng N-H, Lee C-H, Lee M-C, et al. Effectiveness of pediatric palliative care education on pediatric clinicians. Western J Nurs Res 2017; 39: 1624-38.