Wright: How Roger Neilson Children's Hospice is demystifying end-of-life care

Our support helps each of our guests navigate a child’s life-limiting illness and supports their families during times of unimaginable grief.

Published May 29, 2024 • 3 minute read

Executive Director Megan Wright says the name change at Roger Neilson Children’s Hospice makes its crucial mission clearer. Photo by JULIE OLIVER /Postmedia

The subject of children’s hospice care is often shrouded in misunderstanding and misconception. While the idea of palliative care may evoke feelings of sadness or fear, it’s important to understand that children’s hospices play a crucial and compassionate role in our health-care system.

We not only provide end-of-life care for children and their families, but often we give ongoing care and support to young ones with life-limiting illnesses and their families until their 19th birthday.

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A hospice offers a “home away from home,” a sanctuary where children with life-limiting illnesses and their families find solace, strength and support. We are focused on enhancing the quality of life for the child but also providing other needed support for the entire family including parents, caregivers and extended family members. When one life ends, many others must go on.

The goal is to provide a total-care approach that embraces physical, emotional, social and spiritual elements of life, helping individuals and families navigate the challenging journey from diagnosis through end-of-life and grief.

Within a children’s hospice you’ll find a specialized multidisciplinary health-care team offering a unique mix of innovative pediatric palliative care, grief services and perinatal palliative care. From end-of-life care and symptom management to recreational therapy and home hospice, children’s hospices provide a broad range of programs and services tailored to the individual needs of each child and family.

One of the most heartwarming aspect of children’s hospices is the vital support of the community and volunteers. For example, each year at Roger Neilson Children’s Hospice, our volunteers log more than 230,000 hours. That is almost 10,000 days annually spent performing a range of tasks, from greeting visitors at reception to baking cookies to taking part in singalongs, reading books to the children and much more.

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Our community’s support shines brightly. Recently, students at the Algonquin College Public Relations program raised $25,000 for Roger Neilson Children’s Hospice as part of their fundraising course. Another beacon of compassion is the work of the Kanata Quilt Guild, which has created beautiful, unique quilts for each children’s bedroom in the hospice in keeping with our home-like environment.

Roger Neilson Children’s Hospice has been a recognized leader in pediatric hospice palliative care since 2006. Named in honour of NHL Hockey Hall of Fame Coach Roger Neilson, the hospice serves families in Eastern Ontario, West Quebec, and Nunavut. Neilson was renowned for his compassionate spirit as a coach of the Ottawa Senators, and his legacy lives on through the hospice’s dedication to providing compassionate and family-centred care.

Our name was recently changed to include the words “Children’s Hospice” with the twin goals of demystifying pediatric hospice palliative care and educating the community about its importance and benefits. Pediatric hospice palliative care is not just about end-of-life care for children; our support helps each of our guests navigate a child’s life-limiting illness and supports their families during times of unimaginable grief. It’s about improving the quality of life for the children we serve and their families. Life, no matter how short, should be lived to the fullest.

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Part of our name change was the introduction of a new logo, which includes three stars. Each star represents the stages of a family’s children’s hospice journey:

• Diagnosis

• Living well with illness

• Loss and grief support

Since our inception, we’ve touched the lives of 622 children and their families with 6,752 admissions and 39,758 total days of care.

Our name might be renewed, but our heart remains unchanged. We’re steadfast in our dedication to enriching the quality of life for our guests and their families. Children’s hospice services are not only an essential part of today’s health care, but we also deeply impact the communities we serve by providing essential support and much-needed solace during some of the most challenging times any family might face.

Megan Wright, MScN, RN, is Executive Director, Roger Neilson Children’s Hospice.

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