5.3 Settings of Care
Most children with advanced cancer and their families prefer to be at home if at all possible, but understand the need for outpatient visits and hospitalizations when necessary. However, as the child’s disease and care needs progress, alternate settings of care such as hospital or hospice may be preferred. Any setting can be adapted to the individual child and family’s situation. Consider consultation with a pediatric palliative care team when caregivers are familiar with caring for children but unfamiliar with provision of care to the dying, or where there is familiarity with provision of care for the dying but not for children or adolescents. This team can add experience in symptom management, communication and ethical issues which arise at end of life.
As end of life approaches, the local team will need to ensure re-evaluation of the physical set up of the home to accommodate the changing care needs of the child and to seek supports to meet these needs (i.e. palliative nursing, personal support workers, physiotherapy, occupational therapy, social work, interlink nurse). Regular contact with care providers in person, by phone or using technology will be necessary to ensure the family continues to feel supported. Clinician home visits and 24/7 access to telephone advice is often necessary for optimal comfort and symptom management.
In some areas care in a hospice setting may be available and may allow increased supports to the family in a more home like setting than a hospital. Discussion with a local hospice to discuss types of care available should include family members. Specialized pediatric hospices are available in some areas, and some children and families may already be familiar with their services.
Families whose children continue on intensive therapy or with need for frequent transfusions and/or infusions may choose to remain in hospital. Sometimes less intensive chemotherapy allows outpatient based care which may be facilitated at home or at a hospital closer to home. However, some families just prefer the additional support and reassurance that comes with the hospital setting for their child’s end-of-life care.
Primary author Dr. Christina Vandeboncoeur, Children’s Hospital of Eastern Ontario, Ottawa. Reviewed by the POGO Satellite Manual Palliative Care Working Group, 2016.