Structures Providing Palliative Care
Palliative care can be offered via three different structures: at Hospital level, and at community level, via home care services and/or Hospices. In a recent study (2014), 65 % of all countries had no service of Pediatric Palliative Care at all, while only 6% had structures available to entire population. Respectively, in 43 European countries, 14 had no service and 24 offered limited services. Only 5% provided high quality care.
Levels of services providing Pediatric Palliative Care
Source: Stephen R. Connor & Maria Cecilia Sepulveda Bermedo (2014)
Global Atlas of Palliative Care at the End of Life
The Hospital Units of Palliative Care usually have a consulting role for other Units regarding issues relevant to the palliative care of children and adolescents with serios and life limiting diseases.
The interdisciplinary team of these Units, similarly to all services of Palliative Care is consisted of specialized nurse, pediatrician, psychologist, social worker and administrative staff. They closely cooperate not only with other Hospital teams, like Intensive Care, Neonatal Care, Oncology Department, but also with other Hospitals, Hospices and community health care services.
Accordingly to the operation model of each Hospital, the Palliative Care Team could either be in charge of the basic care of the child, or provide consulting and specialized care, helping the main therapeutic team of the child, in the management of pain and other symptoms, the communication with parents about the realistic goals of child’s care and the support of parents in the process of difficult decisions.
In the USA, almost 70% of Pediatric Hospitals have relevant Teams, the majority of them developed in the last decade. Approximately 1/3 of them offer the possibility of home care visits.
In the UK, the first Hospital Unit has been created in Great Ormond Street Children’s Hospital.
Hospices are specialized care facilities for children and adolescents with rare, serious diseases, similar to their familiar home area and provide chronic or emergency care for the symptom management in the course of the disease and in the terminal stage. They can also serve for children accommodation, offering respite time for both child and family, while they provide psychosocial support during illness and bereavement.
In the USA, approximately 450 programs provide specialized services for children via Hospices or home care. In the UK, the needs have quadrupled in the last 15 years. Besides the Hospital Services, more than 40 independent community structures operate, while in Canada there are 8 programs with children Hospices.
In Greece, no similar Palliative Care Hospices operate. The existing Hospices only accommodate children with severe, chronic diseases and have no relevance with the provision of palliative care.
Among the first and well known children and adolescent Hospices are:
In the UK:
In Canada:
Home services of palliative care were the first such structure for children in the early 70s. Pioneer was Ida Martinson, a nurse who implemented the first home palliative care service, in collaboration with Minnesota University. In this program, participated 58 children with various forms of terminal cancer. According to this program, the family who wished to keep the child at home was referred by the treating team in home care team and, after having been informed of the procedure, received support by community nurses. This program showed that home care of children with cancer in the terminal stage is not only desired by families but also feasible. Then the program was gradually extended to other Hospitals in Minnesota in the 1980s, while at the same decade similar home care services were founded in other countries, such as Canada, Australia, Europe and UK.
Some of the basic operating principles of these programs are: a) parents remain the main providers of care for their children; b) parents are willing and able to care for their child at home with proper guidance and training from a specialized multidisciplinary palliative care team; c) the program is available on a 24 hour, 7 day basis, throughout the year; d) the care team is interdisciplinary by appropriately trained health care professionals; and e) there is communication between the home care team, the therapeutic team, the community and other organizations and the family has the opportunity to return to Hospital whenever they wish.
In Greece, there are several home care services. Nevertheless, Merimna is the only structure that provides pediatric palliative care at home, since 2010, through Pediatric Palliative Home Care Service. The main purpose of the Service is to ensure conditions that enhance the quality of life of the ill child, the family and important others in his/her life, and ensure conditions for a dignified death.
More specifically, it provides free of charge:
- medical and nursing care for the ill child or adolescent
- psychological support for the ill child or adolescent, parents and siblings
- support so as the social needs of the family are fulfilled
- support of all family members, according to their needs and wishes
- spiritual support by church representative for those families would wish to
- cooperation with the child’s school in order to support teachers and classmates throughout illness and bereavement period, provided the school community wish to.
For more information visit the site www.merimna.org.gr