Philosophy of Care
Roger Neilson House is about living life to the fullest. The experience of a “home away from home” fosters freedom, security, pleasure, and quality of family life. Children, youth and their families living with a progressive life-limiting illness are entitled to access comprehensive palliative care services. This timely, holistic, patient and family-focused, culturally sensitive care is enhanced by the experience of Roger Neilson House.
Roger Neilson House Services
Roger Neilson House offers the following services to children and families who are referred to the CHEO Palliative Care Outreach Program:
End of Life Care
End of life care is available at Roger Neilson House when it is determined by the medical team that death is imminent. The Roger Neilson House team recognizes this and works collaboratively to ensure that the final wishes and needs of each child and family are met in the weeks, days and hours leading up to the child’s death and beyond into bereavement. This involves helping family members make difficult decision around end of life plans, creating memories and sharing mementos as well as addressing emotional and spiritual care needs. Heartfelt guidance and compassionate support is offered to help with transitions at end of life for children and families.
Grief Support: Individual, Couples, and Group Counseling
The death of a child is a life-altering tragedy for the families who love them and who must accompany them through this difficult journey. Roger Neilson House provides support to children and families throughout their highly individual experience of grief. From a child’s diagnosis, throughout their illness, and after their death, grief support and bereavement care are offered to the entire family.
Memory Making and Legacy Building Activities
Throughout a child’s involvement in the palliative care program, with Roger Neilson House, families may make lasting memories and keepsakes including handprints, photography, artwork, referrals to wish granting organizations and participation in special events.
Pregnancy and infant loss is devastating and impacts those involved forever. Perinatal Hospice & Bereavement offered by the Roger Neilson House team is provided to parents and families in cases where there is a prenatal, perinatal or neonatal diagnosis of a life-limiting illness or a life-ending diagnosis. It is specialized care that prepares parents for the birth, death and sorrow of the impending loss of their much loved child. Care is provided in a timely manner and is dependent on parental/family needs and wishes.
Recreation Therapy Program
Children requiring Roger Neilson House services often miss out on parts of their childhood due to being medically fragile. The Recreation Therapy program at Roger Neilson House aims to ensure these children experience normal childhood life, as well as fulfill their wishes however big or small. Developing this program will mean more dreams can come true for these children, resulting in improved quality of life and creating a greater sense of legacy for each family Roger Neilson House supports.
Respite (family or individual) Care
The word respite is synonymous with pause. The provision of respite care at Roger Neilson House is a very important form of support for families coping with the many challenges of their child’s life-limiting illness. It allows a family the time it needs to rest and rejuvenate so they are better able to care for their child. It also provides an opportunity for the staff to monitor the child’s health and support the family with challenges they might be facing in the community. During the respite visit children might be offered or require symptom management, recreation therapy and counselling.
Spectacular Incredible Brave Siblings (S.I.B.S.)
S.I.B.S. is a program that aims to support siblings of children with life-limiting illnesses. Siblings can often be an invisible population who suffer in silence while dealing with the same amount of worry and stress as a parent. S.I.B.S. is a program that creates a safe environment for siblings to receive support from peers going through similar experiences.
Symptom assessment and management is available at Roger Neilson House and is coordinated by the CHEO Palliative Care Team in consultation with the family, members of the care team and CHEO care teams. A child is admitted to the hospice for a period of time to evaluate symptoms, implement treatment modalities and evaluate responses.
A transition to home admission at Roger Neilson House is coordinated by CHEO Palliative Care Team. Children leaving hospital with new treatments, equipment or medications may be admitted to the hospice for a period of time to enable families to become familiar and comfortable with a new plan of care. Families assume the responsibility for their child’s care while also receiving support and reinforcement of the instruction they received at CHEO.
Visiting Home Hospice
The Visiting Home Hospice is available to families whose child is receiving palliative care through Roger Neilson House. This is a new program where volunteers go into the home of a Roger Neilson House family and offer two hours of respite by playing, and spending time with the child while parents can tend to other children, rest, and do laundry. This is an important program to support our families in their own home.