Palliative care for children remains a widely misunderstood discipline. Dr. Silvana Barone, pediatrician at The Lighthouse since August 2020 explains the benefits of an approach focused on the quality of life of a young patient and their family.
Pediatrician at CHU Sainte-Justine since 2018, Dr. Silvana Barone pursued a clinical fellowship in pediatric palliative medicine and a postdoctoral fellowship in bioethics at the prestigious Johns Hopkins University in the United States from 2016 to 2018. She also works with the Université de Montréal and McGill University medical schools and has published several scientific papers on topics such as children suffering from chronic diseases and the issues surrounding pediatric death over the past 15 years.
How would you define your role at The Lighthouse?
I made it my main mission to educate healthcare professionals, patients and the families about palliative care for children. I’ve noticed over the years that some misconceptions remain, both among medical professionals and the public at large. With that in mind, I seek to help them understand what palliative care for children is and, more specifically, highlight the role of The Lighthouse in that area.
What do you mean by misconceptions?
There is confusion between palliative care for adults and palliative care for children. With adults, it is used at the end of life, but this is not the case with younger patients. Rather, it refers to services offered during the course of the disease to alleviate the physical and moral suffering. Actually, the expression “supportive care” better defines this practice.
Are you only involved at specific stages?
We can intervene as soon as a diagnosis is established in the case of chronic, genetic or other diseases. In fact, we meet the family wherever they are along their journey, whether it is at medical assessments, oncologist appointments or in the intensive care unit.
It is best to get involved as early as possible to establish a therapeutic relationship with the family. Several families have even told us that had they known how much we could help, they would have included us much earlier in the process.
Does your involvement in the initial stages facilitate the creation of the treatment plan?
After working together with a family for an entire year, we can definitely make it easier to find conciliatory solutions. For instance, we can ensure that every decision respects the child’s values and wishes, while also assessing the risks and benefits.
Families are often forced to make major decisions without having the required medical knowledge. To that end, we make experts (doctors, nurses, social workers, psychoeducators, spiritual care advisors, etc.) available to them to alleviate the burden of making such decisions.
How do you cope with the highly emotional situations that are common in this field?
In that regard too, our expertise helps relieve families. For example, we never use phrases such as “There’s nothing left that can be done” or “We can transfer your child,” because they suggest giving up. Actually, I often say that our most important tool isn’t morphine but communication. We are there to ease physical and psychological suffering and make recommendations that will facilitate the decision-making process.
Can you give an example?
If parents hear about a treatment offered in Chicago or Mexico, they will likely want to rush there because they will want to try anything for their child. Our role is to weigh the pros and cons to reach a rational decision. In this scenario, we could explain the potential adverse side effects of the treatment to the parents, or that travelling may affect their child and even put their life at risk.
Beyond counselling and coaching, how do you intervene at the medical level?
We mostly focus on managing symptoms and pain, from constipation to severe respiratory problems. We may suggest certain types of medications, while always balancing the risks and the benefits of the drug. For example, if a pain-killing medication is so strong that the patient is constantly sleepy, we will recommend an alternative to the family.
How do you interact with other medical bodies?
Since several health experts help care for the child, our responsibility is to coordinate their respective contribution to avoid burdening the family. For instance, we will work with the neurologist of a patient who is now wheelchair-bound. We don’t limit ourselves to the medical issues, as we can also help install adaptive equipment at home.
Do you also help explain in simpler words the information given by various medical experts to the parents?
Yes. And we sometimes also speak on behalf of families when they have to present the medical aspects of their child’s case to specialists. This way, they don’t have to repeat the same information again and again to the different experts involved, which could become frustrating and trying over time.
How has your profession evolved over the years?
Technology and scientific developments have transformed our work. For instance, the life expectancy for children suffering from spinal muscular atrophy used to be fewer than two years. Nowadays, new therapies can prolong their lives. Because we understand the progression of these diseases, we can inform families’ decisions.
Are you sometimes expected to know all the answers and have a solution to every situation?
In our field, we often find ourselves in grey zones. In spite of our expertise, we face uncertainty on a daily basis. However, life—rather than death—is the purpose of our work. We may not always cure every young patient, but we can offer them the best quality of life possible. That may simply mean letting them spend a night at home.
It is also equally important that families be at peace with the process to better accept grief. They need to feel that everything has been done for their child.