Emily’s House provides a family friendly haven and temporary home away from home for children and their families requiring end-of-life palliative care and/or medical respite supports. Our paediatric hospice aims to improve quality of life in circumstances of advanced complex illness, disease and disability. When all medical curative treatment options have been exhausted, Emily’s House offers an alternate to hospital or home care, with an emphasis on making every day matter and living life to the fullest of abilities.
Our child-centred programming integrates entire families through all stages of a child’s illness, including specialized 24/7 clinical/nursing and medical necessities, symptom management, perinatal care, respite support, therapeutic programming/recreation, legacy work/making memories, acute end-of-life care, bereavement/spiritual and counselling, social work and out-patient aftercare at home.
The Emily’s House team of staff and specially-trained volunteers are committed to offering a safe, home-like environment, where children with a life-limiting illness can just be kids, and their families be parents, while finding relief and peace of mind. Our Emily’s House building is adjacent to an accessible public park, is surrounded by a well-maintained green-space garden, and is within enjoyable walking distance of community destinations, like the Riverdale Farm.
Many of these children are referred to us for care from SickKids Hospital. Dr. Adam Rapoport, MD, Medical Director, Emily’s House and Paediatric Advanced Care Team, SickKids Hospital writes: “Children are not just little adults; dying children require unique care. Whereas the vast majority of dying adults prefer to be at home at the end of life, the same cannot be said for the families of dying children. While more than 80% of adults receiving palliative care in Ontario have cancer diagnoses, cancer accounts for less than 25% of the patients we care for at the end of life. The vast majority of children receiving palliative care in our province have complex technology-dependent congenital or acquired neurologic disease. Their medical challenges frequently result in difficulty providing optimal care at home when they are “healthy”. Dr Adam later added: “Emily’s House has become in the care of our most medically fragile and complex paediatric patients. We continue to be a valued and trusted respite service provider, as well as the preferred location of care at a child’s end-of-life, for families from all over the province.”
Emily’s House’s integrated supports include:
- Medical Respite: Allows families a break from the daily routine of caregiving. Programs operate 24/7 and offer nursing, recreation, psychosocial/spiritual, bereavement care and music.
- Symptom Management: Children with complex symptoms may be admitted for assessment and monitoring while medication and treatment changes are implemented.
- Transitional Care: Children may transition between hospital and their own home through our program, where enhanced nursing support and family education is offered.
- End-of-Life Care / Advanced Care: Resources and support are provided for families allowing them to focus on making the most of the final days with their child.
- Perinatal Care (IMPACT): Perinatal palliative care supports parents following a baby’s prenatal diagnosis of a life-limiting condition expected to result in death prior to, or shortly following, birth. Perinatal palliative care aims to provide families with the supports they require, before and after birth and death, as well as ensuring access to bereavement counselling.
- Grief and Bereavement: Children and their families are comforted and supported in processing loss, relationships, meaning making and celebrating special moments that become life-long memories.
- Spiritual Care: Clients and families can process physical, emotional, social, and spiritual pain, with the support of our Spiritual Care Practitioner; or be connected with communities that honour preferred traditional culture and practices.
- Legacy and Memory Making: Legacy work facilitates the creation of family experiences, meaningful crafts, heartbeat songs and new memories – for our children and families. It is a cornerstone of grief and bereavement support in paediatric palliative care.
- Recreation / Play/ Art: Understanding that play is often referred to as “the language of children,” playful one-on-one interventions are created to provide children a time to express their challenges, successes and / or needs in a supported and play-filled way.
- Music Therapy: Children and families experience a safe space where they can express themselves, and find comfort, support, and symptom management. Song writing and “heartbeat songs” can also be incorporated into legacy work activities and lasting memories.
- Peer Family Supports / Events: Children and families find friendships, comfort and community with others who are experiencing a similar palliative journey, or grieving their child’s death.
- Sibling Supports: Siblings are included in recreational / music programming with a medically-fragile child, have access to respite, outings, and bereavement support, for improved mental health outcomes.
- Social Work: Each member of the immediate family has access to counselling, advocacy and social service referral supports.
- Volunteers: Children enjoy story times, visits, play, recreation, music, outings and special events with thanks to our volunteers.
- Community Hospice Care: A wide range of outpatient, in-home supports are available through our PAC Community Program and Emily’s House at Your Home.
When there is no cure there is still compassion, hope and community of care … there is hospice.
Emily’s House FAQ
For any additional questions, please contact us at [email protected] and you will be forwarded to someone who can assist you. [Note: due to the volume of requests, we may not be able to respond to all inquiries in a timely manner.]