Being There, but Not Included: Shared Information and Decision-Making with a Child

This article is part of the “Healing in Two Voices” series developed within the e-QuoL project, which brings together survivor voices and professional reflections on life after childhood and adolescent cancer.  In this series, professional contributions do not aim to add explanations or conclusions. They create spaces for reflection — ethical, psychological, and clinical — opened by the testimonies themselves.

1

As I was a child during my treatment a lot of the conversations were focused on my parents, which made me feel discarded and left out of what was going on with myself. This is still impacting my life later on, as I still feel like a secondary person in my own care. Healthcare professionals often think they should protect the ‘sick’ person in this situation, but we already know we are sick; what we really need is to be made to feel like active participants in our own decisions and life.

Amelia Deane, a CAYACS from Ireland

2

Doctors often spoke about me rather than to me. Even as a teenager, I felt invisible in decisions about my own body.

Anonymous patient

3

With an early and complex medical history, sometimes an atypical journey that turns us into a kind of enigma for those responsible for our care, one might expect that a person cured of cancer during childhood or adolescence would be fully engaged in the patient-caregiver relationship. Yet this relationship can be complex and ambiguous precisely because of what we have lived through.

As for me, I would say that things have only started to feel “normal” again over the past five or six years, after a chaotic process lasting around ten years, which itself only began nearly thirty years after the end of my treatments.

I was treated at the age of 11, in the 1970s, when communication was mainly directed toward parents. Nobody asked for my opinion. In any case, my life was at stake. Either we tried what the doctors proposed, or I would die. So my parents “chose” the only option available to them, even though the outcome was highly uncertain. Quite a gamble, really. And I am grateful to them for it, because it allowed me to reach an age where I could make my own decisions regarding my health.

At a time when implanted ports did not yet exist, repeated chemotherapy made placing IV lines into veins damaged by treatment increasingly difficult. I experienced countless failed attempts. There were tears of pain and incomprehension, sometimes rebellion. There were negotiations at best, restraint at worst. The nurse and my mother kept repeating that I had to let them do it “for my own good.”

How, after such experiences, could one imagine having a balanced relationship with healthcare professionals?

Once cured, I avoided contact with healthcare providers whenever I could. I even felt a deep mistrust toward those I met in my private life who worked in healthcare.

At the same time, it would never have occurred to me to question a medical decision: I was fully aware that I owed my life to medicine. So I always listened and followed everything doctors advised. Each time, the risks of refusing never seemed to compare — the balance clearly tilted in their favor. It would have felt absurdly arrogant on my part to challenge them.

There is also a moral dimension to it. Some people have nothing that medicine can offer them — not even a gamble. Others do not even have access to healthcare. I was always offered a solution. It seems to me that accepting it, even without enthusiasm, even if it comes with difficulties, is a form of respect for those who did not have my chance.

And yet, most of the time, I never truly felt like I was making decisions. It felt more like acceptance than decision-making. I always carried a sense of frustration and the feeling that my body did not fully belong to me.

Apart from the holes in my pierced ears, all these alterations are scars I never wanted and that hurt me physically and emotionally — some to the point of collapse.

The first crack in this perception appeared when, in my forties, I consulted a pulmonologist who said:

“I have never seen a case like yours. Have a full assessment done, go see one of my colleagues, I’ll discuss your case with him, and then we’ll meet again so I can better understand the situation.”

That was when I realized that doctors were not omniscient. She is still my pulmonologist today.

The following year brought further progress: I underwent major surgery, and the kindness of the healthcare staff managed to disarm my terror of hospitals.

Unfortunately, a few years later, I returned to a state of fear with the discovery of a second cancer, experienced in complete denial, followed by dissociation and depression during a third cancer. The diagnosis had to be announced in two stages because the doctor realized I was incapable of understanding the explanations.

What followed was extensive psychological work to help me regain stability, put my entire story into perspective, and eventually learn to look at it through the calmer eyes of an adult, rather than constantly reliving it through the terror of a frightened little girl.

I know this “rabbit caught in the headlights” reaction is not unique.

The association Les Aguerris regularly receives testimonies from former patients who, in front of doctors, suddenly feel like the “little boy” or “little girl” they were when they became ill. Emotions completely take over. This still happens to me regularly, and I have to make a conscious effort to reconnect with my adult self. It is quite a strange feeling, but I am lucky because I can manage it.

But for those who cannot, how can they make informed decisions? How can they even imagine follow-up care calmly?

Five years ago, I refused another surgery. I was able to explain to a renowned thoracic surgeon why this option did not seem appropriate in my situation. He listened to and understood my arguments. Together, with my pulmonologist, we developed a follow-up plan that suited me. I had grown up. It was about time.

Sabine Heinrich, France, Patient advocate, Association Les Aguerris

4

In my work as a pediatric oncologist and hematologist, I strive to place the child or adolescent at the center of their care. Indeed, they are the first person concerned by the cancer diagnosis and the treatment journey. But receiving a cancer diagnosis is one of the most difficult experiences that a patient — child or adolescent — and their parents may face.

After more than 15 years of experience in our department, I have seen a growing inclusion of children and adolescents from the moment of diagnosis. Practices have evolved considerably over the past decades. Today, we try much more to involve children and adolescents in discussions and decisions, according to their age, maturity, and desire to participate.

But we also know that some experiences lived during treatment may continue to influence the relationship with doctors and healthcare for many years after treatment has ended.

It is understandable that parents (or the main caregiver) may need dedicated time, particularly to express their emotions and questions in their own space. Nevertheless, involving the child or adolescent early on allows us to consider them in all dimensions of their development — psychological, social (school and extracurricular life), and family-related. Adolescents may also be offered dedicated time without their parents, if they wish.

The information provided should be adapted to the child’s level of understanding, maturity, and willingness to participate from the very first consultation. When the child is younger, most often during primary school years, the physician will usually first speak with the parents, before later dedicating a second discussion specifically to the child. From adolescence onward, the patient is generally included from the very first medical consultations.

It is essential that the patient feels involved in their own care. Today, consent to treatment is not only parental but is also sought from the child or adolescent whenever possible, as this is essential for building a therapeutic alliance throughout a demanding treatment journey. Of course, some treatments are indispensable, while others are supportive. Most patients accept essential anti-cancer treatments, but they may oppose certain supportive care interventions. Healthcare teams must be able to hear and acknowledge this refusal, which is often the only possible way for the young person to say “no.” This opposition is also part of their normal psycho-emotional development and identity construction as an individual.

Physicians and healthcare teams have a responsibility to involve the patient in discussions from the moment they are able to understand. However, it is also important to respect the psychological defense mechanisms they may develop. Children and adolescents need to be able to make sense of this overwhelming experience while continuing their overall neuropsychological development.

Dr Marianna Deparis, Pediatric onco-hematologist, University Hospital of Caen, France