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Perinatal Palliative Care and Ethical Issues

Yıl 2024, Cilt: 7 Sayı: 1, 100 - 107, 26.04.2024

Beril Nisa Yaşar Füsun Terzioğlu

https://doi.org/10.54189/hbd.1293911

Öz

Perinatal palliative care is a specialty that covers the fields of obstetrics, fetal medicine, pediatric palliative medicine and neonatal medicine. In this care, healthcare professionals offer an individualized care plan based on the needs of the fetus/newborn and family members in a multidimensional way with an interdisciplinary team approach. Unlike adult, neonatal and pediatric palliative care, the patient is not only a single person but a mother-fetus couple in perinatal palliative care; therefore this care type is based on family-centered care philosophy. Due to lack of information about preferences or requests of the fetus, families are expected to make the best medical decision for their baby considering their wishes and values. In this respect, it is important for the team members to inform the families during this process and for multidisciplinary healthcare professionals to support them for making the most appropriate decision. This review article examined the importance of perinatal palliative care, ethical issues, and the roles and responsibilities of the nurse.

Anahtar Kelimeler

Ethics Fetal abnormality Nursing Perinatal Palliative Care

Kaynakça

  • ACOG (American College of Obstetricians and Gynecologists), Committee on Ethics, American Academy of Pediatrics, Committee on Bioethics. (2011). Maternal-fetal intervention and fetal care centers. Pediatrics, 128(2), 473–478. Erişim tarihi: 16.03.2024 https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2011/08/maternal-fetal-intervention-and-fetal-care-centers
  • ACOG (American College of Obstetricians and Gynecologists). (2019). Perinatal palliative care: ACOG Committee Opinion No.786. Obstetrics & Gynecology, 134(3), 84-89. doi:10.1097/AOG.0000000000003425
  • Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. (2012). The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatrics, 12, 25. doi:10.1186/1471-2431-12-25
  • Berry SN, Severtsen B, Davis A, Nelson L, Hutti MH, Oneal G. (2022). The impact of anencephaly on parents: A mixed-methods study, Death Studies, 46(9), 2198-2207. doi:10.1080/07481187.2021.1909669
  • Blumenthal-Barby JS, Loftis L, Cummings CL, Meadow W, Lemmon M, Ubel PA, et al. (2016). Should neonatologists give opinions withdrawing life-sustaining treatment?. Pediatrics, 138(6), e20162585. doi:10.1542/peds.2016-2585
  • Bosslet GT, Pope TM, Rubenfeld GD, Lo B, Truog RD, Rushton CH, et al. (2015). An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. American Journal of Respiratory and Critical Care Medicine, 191(11), 1318–1330. doi:10.1164/rccm.201505-0924ST
  • Bourdens M, Tadonnet J, Hostalery L, Renesme L, Tosello B. (2017). Severe fetal abnormality and outcomes of continued pregnancies: A French multicenter retrospective study. Maternal and Child Health Journal, 21(10), 1901–1910. doi:10.1007/s10995-017-2305-0
  • Can G. (2015). The implementation and advancement of palliative care nursing in Turkey. Journal of Palliative Care & Medicine, 5(1), 1-8. doi:10.4172/2165-7386.1000S5001
  • Cooling in after death care. The royal children’s hospital melbourne nursing guidelines. Erişim tarihi: 06.03.2024 https://www.rch.org.au/rchcpg/hospital_clinical_guideline_index/Cooling_in_after_death_care/
  • Cole J, Moldenhauer JS, Jones TR, Shaughnessy EA, Zarrin HE, Coursey AL, et al. (2017). A proposed model for perinatal palliative care. Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN, 46(6), 904–911. doi:10.1016/j.jogn.2017.01.014
  • Cortezzo D, Ellis K, Schlegel A. (2020). Perinatal palliative care birth planning as advance care planning. Frontiers in Pediatrics, 8. Article 556. doi:10.3389/fped.2020.00556
  • Global Atlas of Palliative Care at the End of Life 2nd Edition. (2020). Worldwide Hospice Palliative Care Alliance.
  • Harrison H. (2008). The offer they can't refuse: parents and perinatal treatment decisions. Seminars in Fetal & Neonatal Medicine, 13(5), 329–334. doi:10.1016/j.siny.2008.03.004
  • Kiman R, Doumic L. (2014). Perinatal palliative care: a developing specialty. International Journal of Palliative Nursing, 20(3), 143–148. doi:10.12968/ijpn.2014.20.3.143
  • Kobler K, Limbo R. (2011). Making a case: creating a perinatal palliative care service using a perinatal bereavement program model. The Journal of Perinatal & Neonatal Nursing, 25(1), 32-43. doi:10.1097/JPN.0b013e3181fb592e
  • Lantos JD. (2016). Trisomy 13 and 18--treatment decisions in a stable Gray zone. JAMA, 316(4), 396-398. doi:10.1001/jama.2016.9470
  • Marty CM, Carter BS. (2018). Ethics and palliative care in the perinatal world. Seminars in Fetal & Neonatal Medicine, 23(1), 35–38. doi:10.1016/j.siny.2017.09.001
  • Mendes J, Wool J, Wool C. (2017). Ethical considerations in perinatal palliative care. Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN, 46(3), 367–377. doi:10.1016/j.jogn.2017.01.011
  • Mills TA, Ricklesford C, Cooke A, Heazell AE, Whitworth M, Lavender T. (2014). Parents' experiences and expectations of care in pregnancy after stillbirth or neonatal death: a metasynthesis. BJOG : An International Journal of Obstetrics and Gynaecology, 121(8), 943–950. doi:10.1111/1471-0528.12656
  • Opel DJ. (2017). A push for progress with shared decision-making in pediatrics. Pediatrics, 139(2), 20162526. doi:10.1542/peds.2016-2526
  • Rocha Catania T, Bernardes L, Guerra Benute GR, Bento Cicaroni Gibeli MA, Bertolassi do Nascimento N, Aparecida Barbosa TV, et al. (2017). When one knows a fetus is expected to die: palliative care in the context of prenatal diagnosis of fetal malformations. Journal of Palliative Medicine, 20(9), 1020–1031. doi:10.1089/jpm.2016.0430
  • Sarnaik AA. (2015). Neonatal and pediatric organ donation: ethical perspectives and implications for policy. Frontiers in Pediatrics, 3, 100. doi:10.3389/fped.2015.00100
  • Sidgwick P, Harrop E, Kelly B, Todorovic A, Wilkinson D. (2017). Fifteen-minute consultation: perinatal palliative care. Archives of Disease in Childhood. Education and Practice Edition, 102(3), 114–116. doi:10.1136/archdischild-2016-310873
  • Thornton R, Nicholson P, Harms L. (2019). Scoping review of memory making in bereavement care for parents after the death of a newborn. Journal of Obstetric, Gynecologic & Neonatal Nursing, 48(3), 351-360. doi:10.1016/j.jogn.2019.02.001
  • Wilkinson D, de Crespigny L, Xafis V. (2014). Ethical language and decision-making for prenatally diagnosed lethal malformations. Seminars in Fetal & Neonatal Medicine, 19(5), 306–311. doi:10.1016/j.siny.2014.08.007
  • Wool C. (2011). Systematic review of the literature: parental outcomes after diagnosis of fetal abnormality. Advances in Neonatal Care: Official Journal of the National Association of Neonatal Nurses, 11(3), 182-192. doi:10.1097/ANC.0b013e31821bd92d
  • Wool C. (2013). State of the science on perinatal palliative care. Journal Of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN, 42(3), 372-E55. doi:10.1111/1552-6909.12034
  • World Health Organization. (2013). WHO definition of palliative care. Erişim tarihi: 14.03.2024 http://www.who.int/cancer/palliative/definition/en/.

Perinatal Palyatif Bakım ve Etik Konular

Yıl 2024, Cilt: 7 Sayı: 1, 100 - 107, 26.04.2024

Beril Nisa Yaşar Füsun Terzioğlu

https://doi.org/10.54189/hbd.1293911

Öz

Perinatal palyatif bakım, obstetrik, fetal tıp, pediatrik palyatif tıp ve yenidoğan tıbbı alanlarını kapsayan bir uzmanlık alanıdır. Bu bakımda, sağlık profesyonelleri disiplinler arası bir ekip yaklaşımı ile fetüs/yenidoğan ve aile bireylerinin ihtiyaçlarına göre çok boyutlu ve bireyselleştirilmiş bir bakım planı sunar. Erişkin, neonatal ve pediatrik palyatif bakımdan farklı olarak perinatal palyatif bakımda hasta sadece tek bir kişi değil, anne-fetus çiftidir; bu nedenle bu bakım türü aile merkezli bakım felsefesine dayanmaktadır. Fetüsün tercihleri veya istekleri hakkında bilgi eksikliği nedeniyle, ailelerin kendi istek ve değerlerini göz önünde bulundurarak bebekleri için en iyi tıbbi kararı vermeleri beklenmektedir. Bu açıdan ekip üyelerinin bu süreçte aileleri bilgilendirmesi ve multidisipliner sağlık profesyonellerinin aileleri destekleyerek en doğru kararı vermeleri önemlidir. Bu derlemenin amacı perinatal palyatif bakımda karşılaşılan bazı etik konular ve hemşirenin rol ve sorumluluklarını tartışmaktır.

Anahtar Kelimeler

Etik Fetal Anomali Hemşirelik Perinatal Palyatif Bakım

Kaynakça

  • ACOG (American College of Obstetricians and Gynecologists), Committee on Ethics, American Academy of Pediatrics, Committee on Bioethics. (2011). Maternal-fetal intervention and fetal care centers. Pediatrics, 128(2), 473–478. Erişim tarihi: 16.03.2024 https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2011/08/maternal-fetal-intervention-and-fetal-care-centers
  • ACOG (American College of Obstetricians and Gynecologists). (2019). Perinatal palliative care: ACOG Committee Opinion No.786. Obstetrics & Gynecology, 134(3), 84-89. doi:10.1097/AOG.0000000000003425
  • Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. (2012). The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatrics, 12, 25. doi:10.1186/1471-2431-12-25
  • Berry SN, Severtsen B, Davis A, Nelson L, Hutti MH, Oneal G. (2022). The impact of anencephaly on parents: A mixed-methods study, Death Studies, 46(9), 2198-2207. doi:10.1080/07481187.2021.1909669
  • Blumenthal-Barby JS, Loftis L, Cummings CL, Meadow W, Lemmon M, Ubel PA, et al. (2016). Should neonatologists give opinions withdrawing life-sustaining treatment?. Pediatrics, 138(6), e20162585. doi:10.1542/peds.2016-2585
  • Bosslet GT, Pope TM, Rubenfeld GD, Lo B, Truog RD, Rushton CH, et al. (2015). An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. American Journal of Respiratory and Critical Care Medicine, 191(11), 1318–1330. doi:10.1164/rccm.201505-0924ST
  • Bourdens M, Tadonnet J, Hostalery L, Renesme L, Tosello B. (2017). Severe fetal abnormality and outcomes of continued pregnancies: A French multicenter retrospective study. Maternal and Child Health Journal, 21(10), 1901–1910. doi:10.1007/s10995-017-2305-0
  • Can G. (2015). The implementation and advancement of palliative care nursing in Turkey. Journal of Palliative Care & Medicine, 5(1), 1-8. doi:10.4172/2165-7386.1000S5001
  • Cooling in after death care. The royal children’s hospital melbourne nursing guidelines. Erişim tarihi: 06.03.2024 https://www.rch.org.au/rchcpg/hospital_clinical_guideline_index/Cooling_in_after_death_care/
  • Cole J, Moldenhauer JS, Jones TR, Shaughnessy EA, Zarrin HE, Coursey AL, et al. (2017). A proposed model for perinatal palliative care. Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN, 46(6), 904–911. doi:10.1016/j.jogn.2017.01.014
  • Cortezzo D, Ellis K, Schlegel A. (2020). Perinatal palliative care birth planning as advance care planning. Frontiers in Pediatrics, 8. Article 556. doi:10.3389/fped.2020.00556
  • Global Atlas of Palliative Care at the End of Life 2nd Edition. (2020). Worldwide Hospice Palliative Care Alliance.
  • Harrison H. (2008). The offer they can't refuse: parents and perinatal treatment decisions. Seminars in Fetal & Neonatal Medicine, 13(5), 329–334. doi:10.1016/j.siny.2008.03.004
  • Kiman R, Doumic L. (2014). Perinatal palliative care: a developing specialty. International Journal of Palliative Nursing, 20(3), 143–148. doi:10.12968/ijpn.2014.20.3.143
  • Kobler K, Limbo R. (2011). Making a case: creating a perinatal palliative care service using a perinatal bereavement program model. The Journal of Perinatal & Neonatal Nursing, 25(1), 32-43. doi:10.1097/JPN.0b013e3181fb592e
  • Lantos JD. (2016). Trisomy 13 and 18--treatment decisions in a stable Gray zone. JAMA, 316(4), 396-398. doi:10.1001/jama.2016.9470
  • Marty CM, Carter BS. (2018). Ethics and palliative care in the perinatal world. Seminars in Fetal & Neonatal Medicine, 23(1), 35–38. doi:10.1016/j.siny.2017.09.001
  • Mendes J, Wool J, Wool C. (2017). Ethical considerations in perinatal palliative care. Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN, 46(3), 367–377. doi:10.1016/j.jogn.2017.01.011
  • Mills TA, Ricklesford C, Cooke A, Heazell AE, Whitworth M, Lavender T. (2014). Parents' experiences and expectations of care in pregnancy after stillbirth or neonatal death: a metasynthesis. BJOG : An International Journal of Obstetrics and Gynaecology, 121(8), 943–950. doi:10.1111/1471-0528.12656
  • Opel DJ. (2017). A push for progress with shared decision-making in pediatrics. Pediatrics, 139(2), 20162526. doi:10.1542/peds.2016-2526
  • Rocha Catania T, Bernardes L, Guerra Benute GR, Bento Cicaroni Gibeli MA, Bertolassi do Nascimento N, Aparecida Barbosa TV, et al. (2017). When one knows a fetus is expected to die: palliative care in the context of prenatal diagnosis of fetal malformations. Journal of Palliative Medicine, 20(9), 1020–1031. doi:10.1089/jpm.2016.0430
  • Sarnaik AA. (2015). Neonatal and pediatric organ donation: ethical perspectives and implications for policy. Frontiers in Pediatrics, 3, 100. doi:10.3389/fped.2015.00100
  • Sidgwick P, Harrop E, Kelly B, Todorovic A, Wilkinson D. (2017). Fifteen-minute consultation: perinatal palliative care. Archives of Disease in Childhood. Education and Practice Edition, 102(3), 114–116. doi:10.1136/archdischild-2016-310873
  • Thornton R, Nicholson P, Harms L. (2019). Scoping review of memory making in bereavement care for parents after the death of a newborn. Journal of Obstetric, Gynecologic & Neonatal Nursing, 48(3), 351-360. doi:10.1016/j.jogn.2019.02.001
  • Wilkinson D, de Crespigny L, Xafis V. (2014). Ethical language and decision-making for prenatally diagnosed lethal malformations. Seminars in Fetal & Neonatal Medicine, 19(5), 306–311. doi:10.1016/j.siny.2014.08.007
  • Wool C. (2011). Systematic review of the literature: parental outcomes after diagnosis of fetal abnormality. Advances in Neonatal Care: Official Journal of the National Association of Neonatal Nurses, 11(3), 182-192. doi:10.1097/ANC.0b013e31821bd92d
  • Wool C. (2013). State of the science on perinatal palliative care. Journal Of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN, 42(3), 372-E55. doi:10.1111/1552-6909.12034
  • World Health Organization. (2013). WHO definition of palliative care. Erişim tarihi: 14.03.2024 http://www.who.int/cancer/palliative/definition/en/.
Toplam 28 adet kaynakça vardır.

Ayrıntılar

Birincil Dil İngilizce
Konular Hemşirelik
Bölüm Derleme
Yazarlar

Beril Nisa Yaşar 0000-0003-4071-1950

Füsun Terzioğlu 0000-0002-4082-7059

Yayımlanma Tarihi 26 Nisan 2024
Gönderilme Tarihi 8 Mayıs 2023
Yayımlandığı Sayı Yıl 2024 Cilt: 7 Sayı: 1

Kaynak Göster

APA Yaşar, B. N., & Terzioğlu, F. (2024). Perinatal Palliative Care and Ethical Issues. Hemşirelik Bilimi Dergisi, 7(1), 100-107. https://doi.org/10.54189/hbd.1293911
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