Dr Annie Janvier is a neonatologist, a clinical ethicist and an author working at the University of Montreal, Canada and Hôpital Sainte-Justine. She works first hand with patients and families confronted with difficult decisions such as end-of-life issues, and decision-making in the face of uncertainty.
At University of Montreal, she is member of the Bureau de L’Ethique Clinique and co-directs the Masters and PhD programs in Clinical Ethics. At Sainte-Justine hospital, she is an active member of the Clinical Ethics Unit and Palliative Care Unit of Sainte-Justine Hospital and is the director of the Research Unit dedicated to Clinical Ethics and “Partnering with Families”. Her main research interests in bioethics are decision-making for neonates and other incompetent patients with regards to the opinions and attitudes of caregivers and society. She investigates parental perspectives regarding intensive care decisions, death and disability. She has demonstrated many contrasts between provider and parental perspectives and investigates how to optimize communication between clinicians and patients/families. She also examines the positive impacts that follow the integration of “veteran” patients/parents in clinical care, teaching and research. In each of her projects she includes parents as co-investigators. She is author of many narratives, publications and books in clinical ethics and medicine
Mosts Significants Contributions
International impact and recognition
Dr Janvier is a pioneer in empirical research in clinical ethics and in patient engagement. She is an internationally sough speaker who has given more than 200 presentations, often with patients. A well as having a strong national influence, she has been invited all over the world to optimize patient-engagement: Australia, New Zealand, USA, France, Belgium, The UK, Argentina, USA, etc She has catalyzed a culture change in family-engagement. She is sought internationally to be a co-investigator in international clinical trials, where she optimizes participation/consent issues with families, and also investigates patient perspectives.
Investigations of family-important outcomes and decision-making for critical decisions, such as end of life decisions
She has investigated the ethics of resuscitation at different stages of life and has demonstrated preconceptions and biases clinicians have; families have different values to providers. She is an international specialist on how to communicate with families in these tragic moments. Below are examples of these publications:
- Janvier A, Farlow B, Baardsnes J, Pearce R, Barrington KJ. Measuring and communicating meaningful outcomes in neonatology: A family perspective. Semin Perinatol. 2016 Oct 25. pii: S0146-0005(16)30081-7. doi: 10.1053/j.semperi.2016.09.009.
- Laventhal NT, Spelke MB, Andrews B, Meadow WL, Larkin LK, Janvier A. The Ethics of Resuscitation at Different Stages of Life. Pediatrics. 2011 May; 127(5)e1221-9.
- Marcello K, Lampron K, Stefano JL, Barrington KJ, Mackley AB, Janvier A. Who’s best interest? The influence of family characteristics on perinatal decision-making. Pediatrics. 2011; 127: e934-9.
- Janvier A, Meadow W, Leuthner SR, Andrews B, Lagatta J, Bos A, Lane L, Verhagen AA. Whom are We Comforting? An Analysis of Comfort Medications Delivered to Dying Neonates. J Pediatr. 2011; 159: 206-10.
- Janvier A, Lorenz J, Lantos J. Antenatal Counseling for Parents Facing an Extremely Preterm Birth: Limitations of the Medical Evidence. Acta Paediatr. 2012; 101: 800-4.
- Janvier A, Barrington KJ, Farlow B. Communication with parents concerning withholding or withdrawing of life sustaining interventions in neonatology. Seminars in Perinatology 38 (2014): 38-46.
- Gaucher N, Nadeau S, Barbier A, Janvier A, Payot A. Personalized Antenatal Consultations for Preterm Labor: Responding to Mothers' Expectations. J Pediatr. 2016 Nov; 178:130-134.e7. doi: 10.1016/j.jpeds.2016.08.006.
- Janvier A, Farlow B. The ethics of neonatal research: An ethicist's and a parents' perspective. Semin Fetal Neonatal Med. 2015 Dec ;20(6):436-41. doi: 10.1016/j.siny.2015.10.003.
Impact on the care of vulnerable children: giving a voice to communities
Medical policy statements recommending how to take decisions for sick neonates at birth used to have a “futile” category. Unilateral decision-making for comfort care was recommended for preterm infants under 24 weeks (even of some survive with good outcomes) and for other neonates with specific chromosomal anomalies. Dr Janvier’s research, has demonstrated that parents do not agree with experts. They want to be considered in the most important decisions they make in their lives. This rigorous evidence has lead to a change in international guidelines. In many hospitals, preterm infants are no longer defined by their gestational age. Trisomy 13 and 18 are now considered to be “life-limiting conditions” for which shared decision-making with parents is essential. This has saved the lives of many children, optimized the death of others, and improved information/care given to vulnerable parents and bereaved families. Here are examples of the publications from these studies:
- Janvier A, Farlow B, Barrington KJ. Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18. Am J Med Genet C Semin Med Genet. 2016 Sep;172(3):279-87. doi: 10.1002/ajmg.c.31526.
- Janvier A, Lantos J, Aschner J, Barrington K, Batton B, Batton D, Berg SF, Carter B, Campbell D, Cohn F, Lyerly AD, Ellsbury D, Fanaroff A, Fanaroff J, Fanaroff K, Gravel S, Haward M, Kutzsche S, Marlow N, Montello M, Maitre N, Morris JT, Paulsen OG, Prentice T, Spitzer AR. Stronger and More Vulnerable: A Balanced View of the Impacts of the NICU Experience on Parents. Pediatrics. 2016 Sep;138(3). pii: e20160655. doi: 10.1542/peds.2016-0655.
- Janvier A, Lantos J - Delivery room practices for extremely preterm infants: the harms of the gestational age label. Arch Dis Child Fetal Neonatal Ed. 2016 Sep;101(5):F375-6. doi: 10.1136/archdischild-2016-310466. Epub 2016 Apr 8.
- Janvier A, Farlow B, Barrington K. Cardiac surgery for children with trisomies 13 and 18: Where are we now? Semin Perinatol. 2016 Jun;40(4):254-60. doi: 10.1053/j.semperi.2015.12.015. Epub 2016 Feb 1.
- Janvier A, Barrington KJ, Aziz K, Bancalari E, Batton D, Bellieni C, Bensouda B, Blanco C, Cheung PY, Cohn F, Daboval T, Davis P, Dempsey E, Dupont-Thibodeau A, Ferretti E, Farlow B, Fontana M, Fortin-Pellerin E, Goldberg A, Hansen TW, Haward M, Kovacs L, Lapointe A, Lantos J, Morley C, Moussa A, Musante G, Nadeau S, O'Donnell CP, Orfali K, Payot A, Ryan CA, Sant'anna G, Saugstad OD, Sayeed S, Stokes TA, Verhagen E. CPS position statement for prenatal counselling before a premature birth: Simple rules for complicated decisions. Paediatr Child Health. 2014 Jan;19(1):22-4.
- Dupont-Thibodeau A, Barrington KJ, Farlow B, Janvier A. End-of-life decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be avoided. Semin Perinatol. 2014 Feb;38(1):31-7. doi: 10.1053/j.semperi.2013.07.006
- Guon J, Wilfond BS, Farlow B, Brazg T, Janvier A. 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 Feb;164A(2):308-18. doi: 10.1002/ajmg.a.36298. Epub 2013 Dec 5.
- Janvier A, Watkins A. Medical interventions for children with trisomy 13 and trisomy 18: what is the value of a short disabled life?Acta Paediatr. 2013 Dec;102(12):1112-7. doi: 10.1111/apa.12424.
- Janvier A, Farlow B, Wilfond BS. The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics. 2012 Aug;130(2):293-8. doi: 10.1542/peds.2012-0151. Epub 2012 Jul 23.
Patient engagement in clinical ethics
Dr Janvier has partnered with patients to investigate and teach bioethics. She the co-creator and co-director of the clinical ethics unit of CHU Sainte-Justine, where clinicians, researchers and patients optimize and promote ethical and human medicine. At Université de Montréal, she is the co-director of the clinical ethics Masters and PhD Programs, where she coordinates the research done in clinical ethics and patient engagement. She is a member of the BEC (Bureau de l’Éthique Clinique). Dr Janvier co-directs the « Unité de recherche en Éthique clinique et partenariat famille ». With her new program GIVE (GIving Everybody a Voice), all parents/patients who wish will continue being able to optimize research, teaching or clinical care. She has co-edited a book, “Ethique Clinique, un guide pour aborder la pratique”. She believes clinical ethics can be accessible to all, including patients. All the chapters in this book start with a vignette, created/reviewed by patients. She has created the POST group (Parents on the other side of Treatment): active in the academic spheres and optimize communication with families.
Engagement in the community
Dr Janvier is present in the patient community (as a cancer survivor and as the mother of a preterm daughter and an adopted son who had complex medical needs). She is active in Préma-Québec, Canadian Premature Baby Foundation and Terre des Hommes, as a physician, an ethicist and a mother. She is a passionate advocate. She is involved in the media and is the spokesperson for vulnerable children and families in the social sphere (radio, television, social media, newspapers). She sits on hospital and governmental committees to optimize the care of children. She has published the book “Respire, bébé, respire!” about her experience as the mother of a sick child, an ethicist and a doctor. This book about parental experiences is now used by providers and families with difficult pregnancies or a sick child.