Myths about pediatric palliative care
Palliative care concerns only adult suffering of a life limiting disease.
Palliative care concerns individuals of all ages, including infants, children and adolescents. Many children are born with or present later with a life threatening disease that might be cured or might lead to death.
Palliative care concerns only children who are dying.
Palliative care is not restricted only to the terminal stage of a disease, but can be combined, at diagnosis or relapse of a severe illness, to therapeutic interventions to ensure quality of life for every child who suffers from a life-threatening disease.
Palliative care concerns only pain management
Palliative care is not only restricted to the management of the child’s pain, as it is an holistic approach which addresses his/her physical, psychosocial and spiritual needs, simultaneously supporting all family members.
Palliative care is not equivalent to euthanasia. In does not facilitate the challenge of death, by any means. On the other case, it neither promotes heroical means and futile treatments to prevent death and physical body damage. It focuses on relief and quality of life of the ill child, often contributing to life prolongation, as he/she feels well despite the severity of his/her condition.
Children with life limiting disease do not realize the severity of their health condition.
Research has shown that even very young children, at preschool age, realize the severity of their health condition, even when nobody informs them of their illness. They often use indirect and symbolic ways to express their knowledge together with their need for honest answers to their questions and support by an environment which understands and supports them, when expressing their thoughts, feelings and concerns.
The medical and nursing staff, suggesting palliative care, give up trying when they have nothing else to offer to the dying child.
By suggesting palliative care, the medical and nursing staff do not abandon the ill child, but offer him/her and family the possibility to ensure care conditions which contribute in his/her symptom relief and the quality of life of the entire family.
Pain cannot be assessed in neonates, infants and children.
Neonates, infants and children experience pain even if they can not express it verbally. There are specific pain assessment tools not only for neonates but also for not communi-cating children. These are based on observation of the behavior and the movements of the infant, and on special scales with painting illustrations for young children, which allow health professionals to assess and relieve their pain appropriately.
In Greece, we do not have palliative care services for children and adolescents.
In Greece, the sole provider of pediatric and adolescent palliative care is “Merimna”, a non-profit organization for the Care of Children and Families in Illness and Death, via the Pediatric Palliative Care Home Service. The ” palliative care home service” is not identical to the “home service” of seriously ill children. The home service is limited to medical and nursing interventions contrary to palliative care home service, which aims at comprehensive coverage of the physical, psychosocial and spiritual needs of the ill child and his/her family.
Pediatric and adolescent palliative care for does not differ from its adult counterpart.
Although the basic principles of palliative care are common for children and adults, their application is significantly different. The main differences are: a) pediatric life threatening diseases are very different from adult and their evolution is often unpredictable; b) the developmental needs of children require provision of care from health professionals with special skills on communication, evaluation and provision of physical, psychosocial, educa-tional and spiritual needs of infants, toddlers, children and adolescents; c) in the focus of care, along with the ill child, are parents, siblings, grandparents, friends and classmates, who need support throughout the course of the disease; d) the bereavement of parents and siblings who are grieving the loss of a child has specific characteristics and often re-quires a long-term support.
Pediatric palliative care can be provided by all health professionals dealing with children.
Even though all health professionals working in the pediatric field should be aware of the basic principles of pediatric and adolescent palliative care, their application requires the specialization of doctors, nurses, psychologists and social workers who function as multidisciplinary team for the achievent of common goals. Without an interdisciplinary team, quality pediatric palliative care cannot be provided.