The Lighthouse, Children and Families (Le Phare, Enfants et Familles) stands out as the first community resource to offer pediatric palliative care in Quebec. Founded in 1999 in Montreal, the Lighthouse’s mission is to provide a full range of clinical care and services for children with a life-threatening illness and their families. Servicing children ranging from birth all the way up to 18 years of age, The Lighthouse’s approach to pediatric palliative care is a comprehensive, holistic one. It aims to address all the different tenets of suffering – physical, psychological, social and spiritual – all with the goal of improving the child and his or her family’s quality of life.
Unlike adult hospitals, pediatric hospitals usually do not have a palliative care ward. To remedy this, The Lighthouse offers a middle ground between a clinical care setting and a home setting – or what they call a community setting. The Lighthouse’s Maison André-Gratton – Quebec’s first pediatric palliative care facility – provides 24 hour-nursing care on site and has clinical and medical expertise present to take care of the children, but it is not a hospital. Instead, the specialized facility aims to offer a setting that provides high quality care while feeling like home.
La Maison André-Gratton has multiple services available including psychological services and bereavement support, as well as different programs and activities for children and parents so that they can make meaningful memories together. The Lighthouse also has an animation team which allows children to take part in activities, such as arts and crafts and pet therapy. Their motto “S’amuser jusqu’au bout de la vie” (Having fun until the end of life) encompasses the importance of providing a caring, compassionate and lively community setting.
“Part of our mission is to allow the child to be a child and to experience meaningful activities, to have fun, to play, to learn and to do all those things in a way that is adapted to what they are physically and cognitively able to do.” (Dr. Silvana Barone, Medical Director at The Lighthouse)
Another important part of The Lighthouse’s mission is to ensure that the child is being followed throughout the continuum of their illness. Dr. Silvana Barone, Medical Director at The Lighthouse explains: “While adult palliative care is very much focused on end of life, in pediatric palliative care the reality is different. Many of our patients have a complex chronic disease and they live in a state of fragile health where they can decompensate at any given time. There’s a lot of prognostic uncertainty, so we can follow our patients for months and years. End-of-life care is an important part of what we do but it’s not all we do. It’s one small part of the big umbrella of comprehensive pediatric palliative care.”
The medical team at The Lighthouse also tries to raise their partners’ awareness – for example, the clinicians following the child at the hospital – about the importance of early referrals, since pediatric palliative care requires clinicians to adjust to both the disease trajectory and to the family’s needs. As Dr. Silvana Barone explains, the literature as well as experience show that the earlier the healthcare team gets to know the family, the greater the impact they will have. They can have conversations with the parents or with older verbal children about goals of care, hopes and wishes. They can also be involved from the beginning with managing distressing symptoms and they can adjust their degree of involvement over the course of the illness. For example, a child might come to The Lighthouse shortly after diagnosis and be walking, eating, and communicating, but as the disease progresses, they might lose some of these abilities and present with more distressing symptoms. The medical team’s role at The Lighthouse then changes to meet the child and family’s new needs.
“We are a small institution so we can be flexible, we can be adaptable. We take the family and the child as they are and we adapt to them, we answer their needs.” (Ariane Parent-Lemay, Director of Nursing and Allied Health)
The Lighthouse’s community setting and flexibility makes it stand out from a hospital setting because their environment is conducive to a serene and peaceful end of life. As Dr. Barone explains: “In ICU, there are alarm bells ringing and codes can be going on in the adjacent room, so that is not a setting that is adapted to end of life. At La Maison André-Gratton, we have physical space that is adapted to the reality of the situation. For example, children who are at the end of life have a large suite with an adjoining room for immediate and extended family so they can be present at the bedside. Moreover, we can provide a range of services on site, such as psychosocial support and bereavement support after the death of the child.”
More than anything, The Lighthouse’s community services are made possible by an incredible interdisciplinary team of professionals. The children and families at La Maison André-Gratton receive care and support provided by a medical and psychosocial team, therapists, guest artists, a support team and trained volunteers. Despite the challenges that come with working in pediatric palliative care, Ariane Parent-Lemay, Director of Nursing and Allied Health at The Lighthouse, remarks: “When you see that end of life can be gentle, dignified and you can make sure that the child and the parents do not have regrets, it makes this job less challenging because it makes it purposeful. I think it’s a privilege to accompany children and families in end of life, and I believe this sentiment is widespread at The Lighthouse.”