How do physicians perceive quality of life? Ethical questioning in neonatology

BMC Medical Ethics

Pierre Le Coz³  Pascal Auquier¹  Catherine Gire²  Marie-Ange Einaudi³ 

[1] Aix-Marseille University, EA 3279 Self Perceived Health Assessment Research Unit, Marseille, France;Department of Neonatology, North University Hospital, Marseille, France;UMR 7268 ADéS, Aix-Marseille University-EFS-CNRS, Espace Ethique Méditerranéen, Timone University Hospital, Marseille, 13385, France

关键词: Responsability;    Prematurity;    Perception;    Quality of life;    Neonatology;    Ethics;    Autonomy;   

Others  :  1221387
DOI  :  10.1186/s12910-015-0045-5

 received in 2015-03-13, accepted in 2015-07-16,  发布年份 2015

【 摘 要 】

Background

The outcome of very preterm infants is marked by the development of complications that can have an impact on the quality of life of the children and their families. The concept of quality of life and its evaluation in the long term raise semantic and ethical problems for French physicians in perinatal care. Our reflection aims to gain a better understanding of the representations surrounding quality of life in neonatal medicine.

Discussion

If French physicians hesitate to face this concept (through self-interest and apprehension), it is because the debate has become more complex. Formerly, the dilemma was between respect for life versus quality of life. Today, although this dilemma is still with us, the questions raised by French physicians show us that autonomy is given increasing importance. The equation to be solved now contains three variables: respect for life, well-being, autonomy. So we find ourselves between three positions and no longer two: respect for life (the ethics of conviction), quality of life based on autonomy (rationalist and secular deontologism), and quality of life based on the differential between well-being and suffering (utilitarianism).

Summary

A solution could lie in consequentialism, which integrates the consequences for future generations in terms of both safeguarding of autonomy and quality of life, and puts the sacredness of life in second place but without sacrificing it. By evaluating their future quality of life, we can better respond to the needs of these children.

【 授权许可】

   
2015 Einaudi et al.

【 参考文献 】

• [1]Tyson JE, Parikh NA, Langer J, Green C, Higgins RD. Intensive care for extreme prematurity--moving beyond gestational age. N Engl J Med. 2008; 358(16):1672-81.
• [2]Larroque B, Ancel PY, Marret S, Marchand L, André M, Arnaud C et al.. Neurodevelopmental disabilities and special care of 5-year-old children born before 33 weeks of gestation (the EPIPAGE study): a longitudinal cohort study. Lancet. 2008; 371(9615):813-20.
• [3]Ancel PY, Goffinet F, the EPIPAGE-2 Writing Group. Survival and Morbidity of Preterm Children Born at 22 Through 34 Weeks’ Gestation in France in 2011: Results of the EPIPAGE-2 Cohort Study. JAMA Pediatr. 2015;26. doi:10.1001/jamapediatrics.2014.3351
• [4]Boland RA, Davis PG, Dawson JA, Doyle LW. Predicting death or major neurodevelopmental disability in extremely preterm infants born in Australia. Arch Dis Child Fetal Neonatal Ed. 2013; 98(3):F201-4.
• [5]Costeloe KL, Hennessy EM, Haider S, Stacey F, Marlow N, Draper ES. Short term outcomes after extreme preterm birth in England: comparison of two birth cohorts in 1995 and 2006 (the EPICure studies). BMJ. 2012; 4(345):e7976.
• [6]Moriette G, Rameix S, Azria E, Fournié A, Andrini P et al.. Naissances très prématurées: dilemmes et propositions de prise en charge. Seconde partie: enjeux éthiques, principes de prise en charge et recommandations. Arch Pediatr. 2010; 17(5):527-39.
• [7]Van Zuuren FJ, Van Manen E. Moral dilemmas in neonatology as experienced by health care practitioners: a qualitative approach. Med Health Care Philos. 2006; 9(3):339-47.
• [8]Saigal S, Doyle LW. An overview of mortality and sequelae of preterm birth from infancy to adulthood. Lancet. 2008; 371(9608):261-9.
• [9]Saigal S, Tyson J. Measurement of quality of life of survivors of neonatal intensive care: critique and implications. Semin Perinatol. 2008; 32(1):59-66.
• [10]Berbis J, Einaudi MA, Simeoni MC, Brévaut-Malaty V, Auquier P, d’Ercole C et al.. Quality of life of early school-age French children born preterm: a cohort study. Eur J Obstet Gynecol Reprod Biol. 2012; 162(1):38-44.
• [11]Einaudi MA, Gire C, Loundou A, Le Coz P, Auquier P. Quality of life assessment in preterm children: physicians’ knowledge, attitude, belief, practice--a KABP study. BMC Pediatr. 2013; 13:58. BioMed Central Full Text
• [12]Zwicker JG, Harris SR. Quality of life of formerly preterm and very low birth weight infants from preschool age to adulthood: a systematic review. Pediatrics. 2008; 121(2):e366-76.
• [13]Moatti JP. Recherche Clinique et Qualité de Vie. Flammarion Médecine Sciences, Paris; 1996.
• [14]Marino BS, Tomlinson RS, Drotar D, Claybon ES, Aguirre A, Ittenbach R et al.. Quality-of-life concerns differ among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease. Pediatrics. 2009; 123(4):e708-15.
• [15]Saigal S, Stoskopf B, Boyle M, Paneth N, Pinelli J, Streiner D et al.. Comparison of current health, functional limitations, and health care use of young adults who were born with extremely low birth weight and normal birth weight. Pediatrics. 2007; 119(3):e562-73.
• [16]Oshana M. Personal Autonomy in Society. Ashgate, Aldershot; 2006.
• [17]Gillon R. Defending the four principles approach as a good basis for good medical practice and therefore for good medical ethics. J Med Ethics. 2015; 41(1):111-6.
• [18]Macklin R. Can one do good medical ethics without principles? J Med Ethics. 2015; 41(1):75-8.
• [19]Petrou S, Johnson S, Wolke D, Marlow N. The association between neurodevelopmental disability and economic outcomes during mid-childhood. Child Care Health Dev. 2013; 39(3):345-57.
• [20]Beauchamp TL, Childress JF. Principles of Biomedical Ethics. Oxford University Press, New York; 2001.
• [21]Boyle RJ, Salter R, Arnander MW. Ethics of refusing parental requests to withhold or withdraw treatment from their premature baby. J Med Ethics. 2004; 30(4):402-5.
• [22]Leplège A. Qualité de vie. In: Dictionnaire d’Ethique et de Philosophie Morale. PUF, Paris; 1996: p.1601-5.
• [23]Canguilhem G. Le. Normal et le Pathologique. Paris: PUF; 2005.
• [24]Kant E. Fondements de la Métaphysique des Mœurs. Flammarion, Paris; 1994.
• [25]Mounier E. Le. Personnalisme. Paris: PUF; 1949.
• [26]Levinas E. Ethique et Infini. Le Livre de Poche, Paris; 1982.
• [27]Kant E. La. Religion dans les Limites de la Simple Raison. Paris: Hatier; 2008.
• [28]Mill JS. L’Utilitarisme (1861). Flammarion “Champs”, Paris; 1998.
• [29]Bentham J. An introduction to the Principles of Morals and Legislation. Clarendon, Oxford; 1996.
• [30]Singer P, Khuse H. Should the Baby Live? The problem oh Handicapped Infants. Oxford University Press, Oxford; 1985.
• [31]Mill JS. On liberty. Penguin, Harmondsworth; 1982.
• [32]Serenius F, Sjörs G, Blennow M, Fellman V, Holmström G, Maršál K et al.. Källen K; EXPRESS study group. EXPRESS study shows significant regional differences in 1-year outcome of extremely preterm infants in Sweden. Acta Paediatr. 2014; 103(1):27-37.
• [33]Jonas H. Le. Principe Responsabilité. Paris: Les Editions du Cerf; 1990.
• [34]Weber M. Le. Savant et le Politique. Paris: La Découverte/Poche; 2003.
• [35]Birchley G. What limits, if any, should be placed on a parent’s right to consent and/or refuse to consent to medical treatment for their child? Nurs Philos. 2010; 11(4):280-5.
• [36]Rydvall A, Juth N, Sandlund M, Domellöf M, Lynøe N. To treat or not to treat a newborn child with severe brain damage? A cross-sectional study of physicians’ and the general population’s perceptions of intentions. Med Health Care Philos. 2014; 17(1):81-8.
• [37]Rothstein MA. Autonomy and paternalism in health policy: currents in contemporary bioethics. J Law Med Ethics. 2014; 42(4):590-4.
• [38]Sjöstrand M, Helgesson G, Eriksson S, Juth N. Autonomy-based arguments against physician-assisted suicide and euthanasia: a critique. Med Health Care Philos. 2013; 16(2):225-30.
• [39]Hein IM, Troost PW, Broersma A, de Vries MC, Daams JG, Lindauer RJ. Why is it hard to make progress in assessing children’s decision-making competence? BMC Med Ethics. 2015; 10(16(1)):1. BioMed Central Full Text