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DOI: 10.1055/a-1179-0530
Extending the Concept of Advance Care Planning to the Perinatal Period
Ausweitung des Konzeptes von Advance Care Planning in die PerinatologieAbstract
Easier access to prenatal diagnostic procedures led to its widespread use as a screening measure. Hence, today it is more common for life-limiting illnesses to be diagnosed during fetal life. The concept of Advance Care Planning (ACP) provides a framework for caregivers, families and their multidisciplinary teams to anticipate and plan ahead for potential future medical decisions so that the affected children are reliably treated according to their parents’ individual values and wishes. In the perinatal context, ACP also has the potential to tackle the needs of unborn or newborn children with life-limiting illnesses and their families better, avoid unnecessary and burdensome measures and focus upon goals that are valuable and meaningful to both child and family.
Zusammenfassung
Eine einfach zugängliche und hoch technisierte Schwangerenvorsorge hat die Anzahl von feindiagnostischen Maßnahmen deutlich zunehmen lassen. Dies hat dazu geführt, dass lebensverkürzende Erkrankungen immer häufiger schon in der Fetalzeit diagnostiziert werden. Die Ausweitung des Konzeptes von Advance Care Planning (ACP) in die Perinatologie bietet die Möglichkeit, zukünftige (Be-)Handlungsschritte mit der Schwangeren bzw. den Eltern vor und nach der Geburt unter Berücksichtigung sowohl medizinischer als auch nichtmedizinischer Aspekte individuell für verschiedene Phasen der Schwangerschaft, der Geburt und des kindlichen Krankheitsverlaufes zu planen. Ein angemessenes und rechtzeitiges Advance Care Planning hat somit das Potential, eine Verbesserung der Versorgung von ungeborenen bzw. neugeborenen Kindern mit lebensverkürzenden Erkrankungen und ihren Familien zu erreichen, unnötige und belastende Maßnahmen für betroffene Kinder zu vermeiden und den Fokus auf Ziele zu legen, die für Kind und Familie wertvoll und bedeutsam sind.
Key words
neonate - pregnancy - life-limiting disease - palliative care - birth plan - prenatal counsellingSchlüsselwörter
Neugeborene - Schwangerschaft - lebensverkürzende Erkrankung - Palliativmedizin - Geburtsplan - PränatalberatungPublication History
Article published online:
15 June 2020
© 2020. Thieme. All rights reserved.
© Georg Thieme Verlag KG
Stuttgart · New York
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References
- 1 Alderson P. Competent children? Minors’ consent to health care treatment and research. Soc Sci Med 1982 2007; 65: 2272-2283. DOI: 10.1016/j.socscimed.2007.08.005.
- 2 Bakhbakhi D, Siassakos D, Storey C. et al. PARENTS 2 study protocol: pilot of Parents’ Active Role and ENgagement in the review of Their Stillbirth/perinatal death. BMJ Open 2018; 8: e020164 DOI: 10.1136/bmjopen-2017-020164.
- 3 Balaguer A, Martín-Ancel A, Ortigoza-Escobar D. et al. The model of Palliative Care in the perinatal setting: a review of the literature. BMC Pediatr 2012; 12: 25. DOI: 10.1186/1471-2431-12-25.
- 4 Bennett J, Dutcher J, Snyders M. Embrace: addressing anticipatory grief and bereavement in the perinatal population: a palliative care case study. J Perinat Neonatal Nurs 2011; 25: 72-76 DOI: 10.1097/JPN.0b013e318208cb8e.
- 5 Beringer AJ, Heckford EJ. Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records. Child Care Health Dev 2014; 40: 176-183. DOI: 10.1111/cch.12020.
- 6 Bhatia J. Palliative care in the fetus and newborn. J Perinatol Off J Calif Perinat Assoc 2006; 26 (Suppl 1): S24-26; discussion S31-S33 DOI: 10.1038/sj.jp.7211468.
- 7 Boss R, Kavanaugh K, Kobler K. Textbook of Interdisciplinary Pediatric Palliative Care. 1. Auflage Elsevier Saunders; Philadelphia, USA: 2011
- 8 Breeze ACG, Lees CC, Kumar A. et al. Palliative care for prenatally diagnosed lethal fetal abnormality. Arch Dis Child Fetal Neonatal Ed 2007; 92: F56-F58 DOI: 10.1136/adc.2005.092122.
- 9 Caeymaex L, Jousselme C, Vasilescu C. et al. Perceived role in end-of-life decision making in the NICU affects long-term parental grief response. Arch Dis Child Fetal Neonatal Ed 2013; 98: F26-F31 DOI: 10.1136/archdischild-2011-301548.
- 10 Calhoun BC, Napolitano P, Terry M. et al. Perinatal hospice. Comprehensive care for the family of the fetus with a lethal condition. J Reprod Med 2003; 48: 343-348
- 11 Carter BS. More than medication: perinatal palliative care. Acta Paediatr Oslo Nor 1992 2016; 105: 1255-1256 DOI: 10.1111/apa.13529.
- 12 Cole JCM, Moldenhauer JS, Jones TR. et al. A Proposed Model for Perinatal Palliative Care. J Obstet Gynecol Neonatal Nurs. JOGNN. 2017; 46: 904-911 DOI: 10.1016/j.jogn.2017.01.014.
-
13 Cortezzo DE, Bowers K, Cameron Meyer M. Birth Planning in Uncertain
or Life-Limiting Fetal Diagnoses: Perspectives of Physicians and
Parents. J Palliat Med 2019;22: 1337–1345. doi: 10.1089/
jpm.2018.0596
- 14 Côté-Arsenault D, Denney-Koelsch E. “Have no regrets:” Parents’ experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Soc Sci Med 1982 2016; 154: 100-109 DOI: 10.1016/j.socscimed.2016.02.033.
- 15 Davies B, Sehring SA, Partridge JC. et al. Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics. 2008; 121: 282-288 DOI: 10.1542/peds.2006-3153.
- 16 Durall A, Zurakowski D, Wolfe J. Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics. 2012; 129: e975-e982 DOI: 10.1542/peds.2011-2695.
- 17 Flaig F, Lotz JD, Knochel K. et al. Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors. Palliat Med 2019; DOI: 10.1177/0269216319834225.
- 18 Garten L, Ohlig S, Metze B. et al. Prevalence and Characteristics of Neonatal Comfort Care Patients: A Single-Center, 5-Year, Retrospective, Observational Study. Front Pediatr 2018; 6: 221 DOI: 10.3389/fped.2018.00221.
- 19 Guon J, Wilfond BS, Farlow B. et al. Our children are not a diagnosis: the experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18. Am J Med Genet A 2014; 164A: 308-318 DOI: 10.1002/ajmg.a.36298.
- 20 Haug S, Goldstein M, Cummins D. et al. Using Patient-Centered Care After a Prenatal Diagnosis of Trisomy 18 or Trisomy 13: A Review. JAMA Pediatr 2017; 171: 382-387 DOI: 10.1001/jamapediatrics.2016.4798.
- 21 Heckford E, Beringer AJ. Advance care planning: challenges and approaches for pediatricians. J Palliat Med 2014; 17: 1049-1053 DOI: 10.1089/jpm.2013.0374.
- 22 Horridge KA. Advance Care Planning: practicalities, legalities, complexities and controversies. Arch Dis Child 2015; 100: 380-385. DOI: 10.1136/archdischild-2014-305945.
- 23 Jack BA, Mitchell TK, O’Brien MR. et al. A qualitative study of health care professionals’ views and experiences of paediatric advance care planning. BMC Palliat Care 2018; 17: 93 DOI: 10.1186/s12904-018-0347-8.
- 24 Kenner C, Press J, Ryan D. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach. J Perinatol Off J Calif Perinat Assoc 2015; 35 (Suppl 1): S19-S23 DOI: 10.1038/jp.2015.145.
- 25 Kidszun A, Linebarger J, Walter JK. et al. What If the Prenatal Diagnosis of a Lethal Anomaly Turns Out to Be Wrong?. Pediatrics 2016; 137 DOI: 10.1542/peds.2015-4514.
- 26 La Puma J, Orentlicher D, Moss RJ. Advance directives on admission. Clinical implications and analysis of the Patient Self-Determination Act of 1990. JAMA 1991; 266: 402-405
- 27 Lathrop A, Vandevusse L. Affirming motherhood: validation and invalidation in women’s perinatal hospice narratives. Birth Berkeley Calif 2011; 38: 256-265 DOI: 10.1111/j.1523-536X.2011.00478.x.
- 28 Leuthner S, Jones ELF. et al. Concerns Program: a model for perinatal palliative care. MCN Am J Matern Child Nurs 2007; 32: 272-278 DOI: 10.1097/01.NMC.0000287996.90307.c6.
- 29 Loeffen EAH, Tissing WJE, Schuiling-Otten MA. et al. Individualised advance care planning in children with life-limiting conditions. Arch Dis Child 2018; 103: 480-485 DOI: 10.1136/archdischild-2017-312731.
- 30 Lotz JD, Daxer M, Jox RJ. et al. “Hope for the best, prepare for the worst”: A qualitative interview study on parents’ needs and fears in pediatric advance care planning. Palliat Med 2017; 31: 764-771 DOI: 10.1177/0269216316679913.
- 31 Lotz JD, Jox RJ, Borasio GD. et al. Pediatric advance care planning: a systematic review. Pediatrics 2013; 131: e873-e880 DOI: 10.1542/peds.2012-2394.
- 32 Lyon ME, D’Angelo LJ, Dallas RH. et al. A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning. AIDS Care 2017; 29: 1287-1296 DOI: 10.1080/09540121.2017.1308463.
- 33 Marty CM, Carter BS. Ethics and palliative care in the perinatal world. Semin Fetal Neonatal Med 2018; 23: 35-38. DOI: 10.1016/j.siny.2017.09.001.
- 34 Michelson KN, Koogler T, Sullivan C. et al. Parental views on withdrawing life-sustaining therapies in critically ill children. Arch Pediatr Adolesc Med 2009; 163: 986-992 DOI: 10.1001/archpediatrics.2009.180.
- 35 Miles SH, Koepp R, Weber EP. Advance end-of-life treatment planning. A research review. Arch Intern Med 1996; 156: 1062-1068
- 36 Mitchell S, Dale J. Advance Care Planning in palliative care: a qualitative investigation into the perspective of Paediatric Intensive Care Unit staff. Palliat Med 2015; 29: 371-379 DOI: 10.1177/0269216315573000.
- 37 Munson D, Leuthner SR. Palliative care for the family carrying a fetus with a life-limiting diagnosis. Pediatr Clin North Am 2007; 54: 787-798 xii DOI: 10.1016/j.pcl.2007.06.006.
- 38 Penny Simkin P. Birth plans: after 25 years, women still want to be heard. Birth Berkeley Calif 2007; 34: 49-51. DOI: 10.1111/j.1523-536X.2006.00126.x.
- 39 Redlinger-Grosse K, Bernhardt BA, Berg K. et al. The decision to continue: the experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly. Am J Med Genet 2002; 112: 369-378 DOI: 10.1002/ajmg.10657.
- 40 Rietjens JAC, Sudore RL, Connolly M. et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol 2017; 18: e543-e551 DOI: 10.1016/S1470-2045(17)30582-X.
- 41 Sabnis A, Fojo S, Nayak SS. et al. Reducing parental trauma and stress in neonatal intensive care: systematic review and meta-analysis of hospital interventions. J Perinatol Off J Calif Perinat Assoc 2019; 39: 375-386 DOI: 10.1038/s41372-018-0310-9.
- 42 Singer PA, Robertson G, Roy DJ. Bioethics for clinicians: 6. Advance care planning. CMAJ Can Med Assoc J J Assoc Medicale Can 1996; 155: 1689-1692
- 43 Taylor B. We must give children a voice in advance care planning. BMJ 2012; 345: e5111. DOI: 10.1136/bmj.e5111.
- 44 Teno J, Lynn J, Wenger N. et al. Advance directives for seriously ill hospitalized patients: effectiveness with the patient self-determination act and the SUPPORT intervention. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc 1997; 45: 500-507
- 45 Walker LV, Miller VJ, Dalton VK. The health-care experiences of families given the prenatal diagnosis of trisomy 18. J Perinatol Off J Calif Perinat Assoc 2008; 28: 12-19. DOI: 10.1038/sj.jp.7211860.
- 46 Whitford HM, Entwistle VA, van Teijlingen E. et al. Use of a birth plan within woman-held maternity records: a qualitative study with women and staff in northeast Scotland. Birth Berkeley Calif 2014; 41: 283-289 DOI: 10.1111/birt.12109.
- 47 Wilkinson D, de Crespigny L, Xafis V. Ethical language and decision-making for prenatally diagnosed lethal malformations. Semin Fetal Neonatal Med 2014; 19: 306-311. DOI: 10.1016/j.siny.2014.08.007.
- 48 Wool C. Instrument Psychometrics: Parental Satisfaction and Quality Indicators of Perinatal Palliative Care. J Palliat Med 2015; 18: 872-877 DOI: 10.1089/jpm.2015.0135.
- 49 Wool C. State of the science on perinatal palliative care. J Obstet Gynecol Neonatal Nurs JOGNN. 2013; 42: 372-382 quiz E54-E55 DOI: 10.1111/1552-6909.12034.
- 50 Wool C, Catlin A. Perinatal bereavement and palliative care offered throughout the healthcare system. Ann Palliat Med 2019; 8 (Suppl 1) S22-S29 DOI: 10.21037/apm.2018.11.03.