In medicine, traditional training is still very much focused on the investigation of symptoms, the diagnosis and the treatment of disease. We are very good at “finding and curing the sore”. But what to do when “bobo” is a fatal disease? Or a complex chronic disease with a difficult and unpredictable trajectory? The last rotation of my residency in pediatrics was in pediatric palliative care. I was impressed by the human and benevolent approach of the speakers and by their teamwork. During my residency, I had already been exposed to complex cases, but in palliative care, I saw an approach where we sought to treat not only the disease, but the person as a whole. Treatment plans were developed to relieve the symptoms, but also the physical, psychological or spiritual suffering in order to improve the daily life of the child.
Most people believe that this care is reserved for children at the end of life, and this idea is still very present among some health professionals. In adults, this is the case, palliative care is often introduced late in the disease trajectory – weeks or months before the end of life. In pediatrics, on the other hand, palliative care providers often develop long-term therapeutic relationships with children and their families. Children can be affected by a variety of conditions that lead to a limited life expectancy, including rare genetic diseases. There are also children who have survived illness thanks to scientific advances and medical technology. However, these children are dependent on it for food and breathing. We also accompany children with certain complex medical conditions who can live for several years with their disease and even survive until adulthood.
During my specialized training in the United States at Johns Hopkins University, I participated in the development and implementation of a communication training program for health professionals who care for children with complex chronic diseases. At the Lighthouse, I try to pass on this knowledge and skills to the members of the care teams.
The most important tool we have at our disposal in palliative care is good communication. We are very careful about the choice of words and the language we use in our discussions with families. Communication must be honest and transparent while being benevolent.
The words we use are important, but communication is much more than words. It is in our gestures, in the silences that allow the expression of emotions and in the language of the body.
The majority of our children come from large pediatric hospitals and are often followed by several specialists. We now have regular meetings with their teams to avoid inefficient duplication of effort. Thanks to this collaboration, families have more confidence in team members, they have greater ease in reaching the right worker at the right time, and patient transfers from one side to the other are more fluid.
I think that the reflection is based above all on the importance of questioning the objectives of the care that one provides as a health professional and of ensuring that these objectives are aligned with the values and wishes of the sick child and of his parents. Is the goal to prolong life at any cost, even if that prolonging is accompanied by significant suffering? Or could we not focus on improving the daily life and creating moments of joy and love despite the disease that we cannot cure? We seek to relieve pain with our treatments, but also to bring a little light into the daily lives of children and families to pierce the gray skies. That’s why at The Lighthouse, we always talk about “having fun until the end of life”. Every child should have the right to be a child despite their illness.
