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Characteristics of pediatric palliative care

Pediatric palliative care focuses first and foremost on the transition from curative care to palliative care. Where adults are concerned, palliative care is still too often identified near the end of life, even in the terminal stages of the illness. With children, management of a life-threatening or terminal illness is undertaken much sooner since we have come to know these patients for months, even years. Moreover, the age of patients requires taking into account very specific interpersonal/emotional features as well as specific methods of assessing pain and associated symptoms. Indeed, a child, be it a 2-month-old or a sixteen-year-old, does not live through a life-threatening or terminal illness or consider the prospect of death in the same way adults do.

In multiple essays, various authors have attempted to define pediatric palliative care. We selected, while drafting the Québec palliative care standards, those expressed by the Association for Children with Life-threatening or Terminal Conditions and their Families at the Royal College of Pediatrics and Child Health.

Pediatric palliative care entails an active and holistic approach that encompasses both physical and psychological, both social and spiritual dimensions. The goal of pediatric palliative care is to help maintain the best quality of life possible for a child while also offering support to the families. This may include alleviating the child’s pain and symptoms, respite provisions for the family and care provided until the time of death as well as during the bereavement period. Follow-up during the bereavement period or grief counselling is also part of palliative care services offered regardless of the cause of death and includes traumas and losses incurred during the perinatal period.

Our palliative care philosophy is reflected through words that are carefully selected along with their meaning and is representative of our approach to this very specific discipline, none more important than when we must inform patients and parents about our mission.

Even though the perspective of death is always present when parents reflect on our mission, our actions towards patients as well as the families is to maintain the best quality of life possible. Death is only mentioned in passing when discussing alternative situations such as bereavement periods or entering a new phase of life for those who remain behind.

The prioritized area of interest for our pediatric palliative care is above all life, since not having any hope of a cure does not mean immediate death. The two most pressing questions concerning a clinical intervention in pediatric palliative care revolve around the issue of temporality and symptomatology.

For over ten years, the ongoing development of pediatric palliative care has gone beyond the initial parameters of their relevance as a separate entity. Indeed, a child is not to be considered a miniature adult, and thus, specific management for children and adolescents faced with terminal illnesses, even in our western societies, need not be further demonstrated. The taboo surrounding their eventual death is no longer an obstacle to introducing palliative care within the scenario of a potentially life-ending illness.

We remain convinced, in fact, that they should not become another medical specialty but that care should be afforded to them by all care givers alike who have to face young patients unable to be cured but with symptoms which must still be treated, including those of a spiritual nature.

We have said many times that education must remain at the core of pediatric palliative care starting from the very first years in the study of medicine. The dissemination of information must be pursued during our clinical interventions, be it within our institutions or at home. Therefore, the choice of not opening a specific palliative care bed area falls within the framework of this pedagogy. While working together in support of the attending teams, we not only forego the syndrome of abandonment that looms over sick children who cannot be cured but at the same time, we avoid the pitfall of not disseminating essential information and knowledge. Not to mention the aberration of denying the patient and his loved ones contact on the part of an interdisciplinary, attending team whom they have sometimes come to know over a period of months or even years, such as the hematology/oncology team or the neurology team.

Proof of development in pediatric palliative care is clearly represented today through the importance given to research in that realm which until a few years ago had remained a vast uncharted area. Another very significant development has emerged over the last fifteen years. In conjunction with the implementation of consultation teams both inside and outside the hospital, the very concept of pediatric palliative care beneficiaries has evolved. Where it once provided only hematology/oncology services, our unit has gradually moved forward to include neurology, neonatology, resuscitation services, cardiology, respiratory services, nephrology, obstetrics (stillbirths and abortions), genetics and even dermatology (epidermolysis bullosa). Since its inception our unit has gone from 85% hematology/oncology consultations to that area’s representing at present only half of our activities. In short, we could recap this somewhat austere classification by declaring that each child, including those still to be born, who is suffering from a potentially life-threatening disease, should be able to benefit from palliative care, whether the child recovers from the illness or not.

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Updated on 3/6/2015
Created on 3/6/2015
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