RESUMO
Major challenge in paediatric palliative home care is to anticipate management of future events. In our opinion, one of major approach is to avoid medical futility especially resuscitation attempts in terminally-ill children especially if home care will be organized. We therefore prospectively discussed with proxi what should be attempted (e.g. treat symptoms of pain or discomfort) and what should be avoided for the sake of the child. A crucial part of the discussion included anticipating non resuscitation of the terminally-ill child. We informed in writing local emergency unit coordinator on results of the discussion with care takers and suggested a procedure in case of an emergency call. To include the local emergency unit is now a standard in our paediatric oncology department since two situations may occur: 1) Parental panic while facing difficult terminal symptoms. We recommend that the local emergency unit coordinator dispatches an emergency team to the child's home in order to manage symptoms (seizures, pain, etc.) but avoid any futile resuscitation attempt. Parental decision to maintain the child at home should be re-evaluated regularly. 2) Parents who wish to stay at home as long as possible, refusing home-based death of their terminally-ill child. We recommend that the family doctor decides whether or not to refer the child to the hospital. Emergency team may be called upon based on the child's status and need for medicalised transport. Even if it should be rather rare that parents contact directly the emergency unit and not as usually the home care coordinator, such situation may occur and should be anticipated. Therefore, the anticipation of non-resuscitation recommendations is a key approach in paediatric palliative home care. This complex discussion should not be avoided as parental/medical panic may induce unrealistic requests for futile medical procedures.
