Since its foundation 20 years ago, The Lighthouse Children and Families has played a central role in Quebec’s care ecosystem. Renowned as a leader in community-based pediatric palliative care, The Lighthouse helps to dispel the myths surrounding a child’s death. Informing, enlightening and raising awareness in communities is part of how The Lighthouse carries out its mission, working with various media to express and illustrate this fragile reality. Recently, an episode of Banc-Public broadcasted on Télé-Québec focused on pediatric palliative care; it was a moving incursion into the world of children with serious life-threatening illnesses and their families.
Distinguished in many ways, The Lighthouse has received various honours over the years, highlighting its cutting-edge expertise, interdisciplinary working culture and the multicultural richness of its volunteer community, and even its boldness and tenacity to work with children in need of such care.
Last February, the OIIQ (Quebec Order of Nurses) Foundation presented the Coup de cœur Leadership 2019 Award to The Lighthouse’s experienced nurses team, recognizing their exceptional contribution and key advisory role in palliative care and bereavement support, as well as their invaluable contribution in developing and sharing best practices. This award comes in addition to other prestigious distinctions awarded to The Lighthouse, such as the Organisme Coup de cœur 2018 of the Société de Développement Angus, Civisme 2015 award from the Canadian Association of Members of the National Order of Merit, Coup de cœur 2012 award from the Health and Social Services Network, Hommage Bénévolat-Québec 2004 award from the Government of Quebec.
It is impossible not to mention the honours received by the co-founders of The Lighthouse Children and Families, the late Nicole Marcil-Gratton and Michèle Viau-Chagnon for their devotion, courage and humanism in dedicating their careers to the development of pediatric palliative care. They were, notably, laureates of the Order of Merit of the University of Montreal Alumni Association in 2013, Knights of the National Order of Quebec in 2009, as well as laureates at the Gala Excellence LaPresse / Radio-Canada in 2007.
These forms of merit and recognition have significantly contributed to consolidating the interdisciplinary approaches and co-creation of solutions that still drive The Lighthouse, resulting in personalized and high quality care and services that are widely recognized today. For the first time, the Association québécoise des soins palliatifs (AQSP) congress will dedicate a scientific day entirely to pediatric palliative care, which will be presented by The Lighthouse on May 8, 2019. The themes covered will include, among others, the grief experienced by youth, the issue of medical assistance in dying, the end of life in children, the suffering of siblings, the experience of loved ones, and end-of-life care in a community setting. Among these conferences, three Lightouse speakers will present their field of expertise in pediatric palliative care.
Antonietta Petti, Clinical Nurse in Pediatric Palliative Care: How to recognize the end of life in children?
This conference will present concrete examples to familiarize participants with the various ways to prepare and support parents throughout the end of their child’s life and up to the time of death.
Marion Onno, Social Worker: Barriers and Facilitators to Providing End-of-Life Care in the Community.
This conference will present the challenges faced in providing end-of-life care in the community and how a framework for a community palliative care home for children can be used in practice.
Madeleine St-Gelais, Executive Training Advisor: A Portal Dedicated to Pediatric Palliative Care in the Community: Training at your Fingertips.
Offered by the winner of the OIIQ Florence 2017 Award, this workshop will present an overview of the portal dedicated to pediatric palliative care deployed by The Lighthouse Children and Families, which includes a virtual library and information and continuing education capsules accessible to everyone, including families and their entourage, volunteers who accompany them at home or in palliative care homes and, finally, care teams working in the home.
Let us hope that at the end of this first AQSP day of training dedicated to pediatrics, participants will feel better equipped to support children in need of palliative care and their families in the trajectory of complex diseases.