Il tempo dell’attesa. L’infermiere di fronte alle scelte di fine vita

Friedel, Marie [UCL]

Although, palliative care is a quite recent field of neonatology, several clinical experiences were published (1-3). The clinical uncertainty combined with the risk of dying are present in the units of neonatal intensive care. Professionals are confronted with very complex situations where emotional and ethical aspects are major and request a specific interdisciplinary approach. Models of paediatric palliative care in neonatology focus on several characteristics: the aim is to provide family-centred care (4), in which all family emotions are acknowledged and their needs addressed, comprehensive and integrative care, in which antenatal and postnatal care is included. Systematic individualized bereavement care can represent such postnatal care. According to the British Association of Perinatal Medicine, Perinatal palliative care is defined “as the planning and provision of supportive care during life and end-of-life care for a foetus, new born infant or infant and their family in the management of an appropriate candidate condition. Candidate conditions for perinatal palliative care can be considered in five broad Categories. Category 1: An antenatal or postnatal diagnosis of a condition which is not compatible with long term survival, e.g. bilateral renal agenesis or anencephaly. Category 2: An antenatal or postnatal diagnosis of a condition which carries a high risk of significant morbidity or death, e.g. severe bilateral hydronephrosis and impaired renal function. Category 3: Babies born at the margins of viability, where intensive care has been deemed inappropriate. Category 4: Postnatal clinical conditions with a high risk of severe impairment of quality of life and when the baby is receiving life support or may at some point require life support, e.g. severe hypoxic ischemic encephalopathy. Category 5: Postnatal conditions which result in the baby experiencing “unbearable suffering” in the course of their illness or treatment, e.g. severe necrotizing enterocolitis, where palliative care is in the baby’s best interests.” (5) Jay Milstein (6) proposes a change of paradigm where accompaniment is preponderant during the whole journey, whatever the prognosis turns to. She compares 3 models. The first one “series model of care” (a), once curative care has become futile, palliative care is initiated. In the second one called “parallel model of care” (b) curative measures progressively decreases and palliative measures are introduced simultaneously. In the so-called “integrative model of care”(c), healing and palliation are introduced in parallel with curative measures. As she writes: “Since a loss can be experienced even in the absence of death, bereavement is represented as a continual process from the outset. It usually undergoes an increase after death. In this paradigm, healing and bereavement are facilitated with a mindset of "being with" while curing is facilitated with the usual mindset of "doing to." Some terms such as “lethal malformations” or “incompatible with life” ae not any more convenient (7), because some neonates with life-limiting diseases (eg. Hypoplasia left ventricle or trisomy 18) actually survive and will have a higher expectancy of life than before. The possibility to decide as parents to continue a pregnancy, despite a fetus’ life limiting diagnosis, requires a specific education of teams who accompany these families (8). Recommendations and guidelines can help teams on this tough journey (9, 10). (1) Lindley LC, Cozad MJ. Nurse Knowledge, Work Environment, and Turnover in Highly Specialized Pediatric End-of-Life Care. Am J Hosp Palliat Care. 2016 May 17. (2) Wool C, State of the science on perinatal palliative care. J Obstet Gynecol Neonatal Nurs. 2013 May-Jun;42(3):372-82 (3) Tosello B, Dany L, Bétrémieux P, Le Coz P, Auquier P, Gire C, Einaudi MA.Barriers in referring neonatal patients to perinatal palliative care: a French multicenter survey. PLoS One. 2015 May 15;10(5):e0126861. (4) Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of Palliative Care in the perinatal setting: a review of the literature. BMC Pediatr. 2012 Mar 12;12:25. (5) British Association of Perinatal Medicine, Palliative Care (Supportive and End of Life Care). A Framework for Clinical Practice in Perinatal Medicine. 2010. p.2 (6) Milstein J. A Paradigm of Integrative Care: Healing with Curing Throughout Life, "Being with" and "Doing to" Journal of Perinatology (2005) 25, 563–568. (7) Wilkinson D, de Crespigny L, Xafis V. Ethical language and decision-making for prenatally diagnosed lethal malformations Semin Fetal Neonatal Med. 2014 Oct;19(5):306-11. (8) Twamley K, Kelly P, Moss R, Mancini A, Craig F, Koh M, Polonsky R, Bluebond-Langner M. Palliative care education in neonatal units: impact on knowledge and attitudes. BMJ Support Palliat Care. 2013 Jun;3(2):213-20. (9) Mancini A, Uthaya S, Beardsley C, Wood D and Modi N, Practical Guidance for the management of palliative care on neonatal units. RCPCH and NHS. 1st Edition. February 2014. (10) Association for Children’s Palliative Care (ACT). A neonatal pathway for babies with palliative care needs. Bristol, 2009.