Dr Adam Rapoport Speaking Notes from Time to Celebrate: Philip Aziz Centre/Emily’s House 30/10 Gala (June 21, 2023)
As part of the ten-year anniversary celebration of Emily’s House children’s hospice, Dr. Adam Rapoport, Medical Director, SickKids, Paediatric Advanced Care Team (PACT) and Emily’s House, shared a few words on the Emily’s House origin story, milestone accomplishments, and why we should all be excited for the future.
Dr Adam wrote…
Good evening, everyone. I am so thrilled to be here with all of you tonight to celebrate 10 years of Emily’s House and 30 years of the Philip Aziz Centre. Words cannot express my sincere gratitude to all those who have supported us throughout the years.
More than a decade ago, SickKids and Emily’s House came together in partnership, to focus on children living with the most serious health conditions. As the medical director of both Emily’s House and the SickKids palliative care service, I’d like to take a few minutes to reflect on the intersection of these two organizations and what we’ve accomplished together.
As soon as I decided on a career in pediatrics, I knew there was only one place I wanted to be – SickKids. Whenever I tell someone I work there, I can generally expect a response that includes a story about how SickKids helped them, or a family member or a friend. EVERYONE knows the Hospital for Sick Children and we’re all proud of our world-class pediatric institution. What most people don’t know, however, is just how much SickKids relies on partners, like Emily’s House.
You see SickKids is first and foremost an acute care centre – a hospital. If a child becomes acutely unwell, there’s nowhere better to seek care. But an increasing number of children are living with chronic complex conditions at their baseline, every day. For many of these kids, a day of good health involves multiple medications given multiple times a day; technology for getting around, eating and even breathing; and the need for caregivers to provide assistance with dressing, toileting, or continuous supervision. SickKids is helping these children live longer than ever before; but Emily’s House is helping them, and their families, live better.
Emily’s House is the embodiment of the pediatric palliative care philosophy, which seeks to optimize quality of life for children living with serious illness. Emily’s House recognizes the challenges faced by these children, and their families, beyond their acute care needs; and just like SickKids, we feel a responsibility to provide them with the best possible care.
Respite services, delivered at Emily’s House or sometimes in a child’s home, represent most of the clinical care we provide. Pediatric respite offers families the opportunity to take a break, while ensuring that their child’s complex and special needs are met by trained and qualified professionals. Offering temporary relief through care-giving services reduces stress and anxiety, improves health outcomes and ultimately strengthens family resilience. But it goes well beyond that. Emily’s House allows children with medical complexity to experience new opportunities, meet friends and form social connections. These activities can help them develop valuable skills, increase their self-esteem and build their confidence. Providing respite services not only makes a significant difference in daily lives and health of children and their families, but in the long term, it ultimately helps create a happier and healthier community.
End-of-life care is another important thing we do at Emily’s House, and another important way that we work together with SickKids. Innovative therapies, advanced critical care, specialized procedures and surgeries are just some of the things that only SickKids can provide to children. In contrast, end-of-life care can be delivered in a variety of settings, and doing so ensures that SickKids beds are available to patients who absolutely need them. Emily’s House, however, is more than simply an alternative location; it’s the very best. As part of our continuous quality improvement, SickKids surveys all bereaved families about their child’s end-of-life experience and the support received during their grief. Those who received care at Emily’s House consistently report a higher level of care and satisfaction than in any other location.
Emily’s House provides a peaceful setting where children can receive compassionate care in a home-like atmosphere. We give families the option to stay with their children 24/7, ensuring they do not miss any precious moments with their loved ones. Over the past 10 years, more than 100 families have entrusted Emily’s House to care for their dying child. Each of those occasions has been an incredibly humbling experience; each has left a lasting impression on us. Serving those families has been a privilege, and their trust in us is what drives us to do better every day.
Today, I am proud to say that Emily’s House has made a significant impact on thousands of lives. We have become a haven of hope, comfort, and care for children and families facing a difficult time. We have assembled a team of professionals who share the same passion and drive – our nurses, PSWs, therapists, social workers, chaplains, physicians, volunteers, and admin staff strive to provide the best possible care, support, and comfort to our patients and their families. I am so proud to work with each and every one of you.
Finally, Emily’s House would not have been possible without the support of our community, donors, and partners. We are grateful for every donation, and the collaboration that has enabled us to provide quality care to children with serious and life-limiting conditions. As we approach the next decade, we will continue to work tirelessly to improve our services to meet the needs of our patients and families. And I will end with this promise: as long as SickKids continues to find ways to add years to a child’s life, Emily’s House will continue to ensure we’re also adding life to that child’s years.
Note: 2023 is a “Time to Celebrate” 30/10 – thirty years of the Philip Aziz Centre for a Hospice Care (PAC), and ten years of Emily’s House children’s hospice. We hope you enjoy the varied historic stories, articles and videos being published on our website to mark this milestone occasion.
