Pediatrics: How to handle the difficult moment of announcing a chronic illness?
Anna, 34, works in the medical field. She works with patients on a daily basis and, as a professional, is familiar with many diseases and their consequences.
Séverine Colinet, CY Cergy Paris University and Céline Avenel, University of Montpellier
One might think that this experience would have been useful to her when, during her pregnancy, she was told that her baby had a disorder. However, as she explained to us, it was only when she had to fill out administrative paperwork that explicitly mentioned her son's condition that she truly realized the implications of this diagnosis.
This example clearly illustrates the complexity of receiving news of a chronic illness. This moment, which is always difficult, is particularly delicate when it concerns a child, one's own child. Parents find themselves caught up in a series of often traumatic events. Feelings of guilt, helplessness, irreversibility, and shock intermingle and combine with a sense of lack of explanation due to the difficulty of understanding often technical medical language.
Support from the doctor and healthcare team then takes on its full meaning: it gives parents the opportunity to make informed decisions and feel understood, rather than judged.
In order to better understand the complexity of these moments, both for parents and healthcare professionals, we spoke with numerous doctors working in various hospitals in mainland France, as well as with their patients. While awaiting a "happy event," the parents we met saw this crucial moment in their lives disrupted by illness.
Some children were born, others were not, prevented by a serious illness. These couples agreed to share with us moments that were sometimes extremely painful. We are infinitely grateful to them as we recount here the lessons learned from these exchanges.
Announcements marked by uncertainty
Heart problems, diabetes, chronic respiratory conditions, cancer... In France, many families are affected by chronic diseases. It is estimated that more than 15 million people are currently living with a chronic disease, including 1.5 to 4 million patients under the age of 20.
Scientific research has already focused extensively on the psychological, identity , and social impacts on children and their families of receiving a diagnosis of a medical condition or disability. The announcement of a chronic illness has three main characteristics.
Announcements marked by uncertainty
The first of these characteristics is that it is not actually a single diagnosis, but a series of diagnoses. When a sign of the disease is detected, the couple meets with various specialists in succession. Consultations with gynecologists, obstetricians, radiologists, pediatricians, nephrologists, urologists, and other practitioners will follow one after another until a diagnosis can be made. Unfortunately, this is not always the case, particularly with rare diseases, which can lead to very unusual situations.
In 2015, a Eurordis survey conducted on eight rare diseases that are relatively common in Europe showed that 25% of patients waited between 3 and 5 years before receiving a diagnosis. In addition, during this period, 40% received an incorrect diagnosis. Finally, significant disparities in the time taken to obtain a diagnosis were identified. While some diagnoses took less than a year, others took more than 20 years! The longest delays were associated with a negative perception of poor healthcare conditions.
This is the second characteristic of these situations: uncertainty can be high. Sometimes doctors are unable to determine the severity of the disease, the prognosis for survival, or, when the disease is detected while the child is still a fetus, the conditions under which the child will be born...
In such contexts, doctors must be mindful of the impact of the words they use.
This is the third characteristic of this type of announcement. It is important not to limit the child's future to their illness and not to rush into decisions. Upon learning of their child's illness, the families concerned will embark on a course of treatment. The child will be cared for, sometimes from birth, by neonatal services, then closely monitored by pediatric services.
For doctors, breaking the news therefore amounts to laying the foundations for a relationship that will continue well beyond the initial announcement. To achieve this, they will need to draw on a range of interpersonal skills, including availability, honesty, transparency, and the ability to reassure patients when faced with a diagnosis.
However, the complexity of the moment makes communication difficult, and several obstacles stand between doctors and parents. To overcome these obstacles, it is important to understand the effects that the news of their child's illness has on parents.
Stunned silence and incomprehension
Initially, the announcement has a stunning effect. Parents are in shock, especially since the announcement may have come very late in the pregnancy. This shock can be further exacerbated by the difficulty in understanding the medical terms used by doctors. This affects all segments of the population, including those who are—in theory—more familiar with the medical world than others, such as Anna. Like her, some parents only become aware of the diagnosis when they read the medical report or when they see the name of their child's illness on an administrative document.
Some couples experience the diagnosis as a "condemnation" of their child, even though the child has already been born. The lack of information destroys their hope. They find themselves caught between two feelings: deep gratitude toward the medical staff who enabled their child to live, and a profound incomprehension in the face of a discourse that seems to condemn their child's future. At the moment of the diagnosis, they feel deprived of their decision-making power as parents.
The situation can be exacerbated when certain information is given too early. For example, announcing the non-viability of the child as early as the ultrasound scan can traumatize the parents. The early announcement has been analyzed as a factor of dissatisfaction among palliative care cancer patients who feel they learned the news too soon. Conversely, adopting an overly positive tone in professional discourse would also be counterproductive to the couple's understanding of the announcement. When delivering the news, "consistency is essential." When the statements made by the practitioners providing care are contradictory, the inconsistencies perceived during the process of delivering the news become problematic because they interfere with the parents' current understanding of the diagnosis. In addition, a recent study points out that the announcement is particularly stressful for parents due to the high number of healthcare professionals involved, thus highlighting the importance of their collaboration.
Camille, a 38-year-old mother whose second child has been diagnosed with posterior urethral valves, a rare malformation that only affects boys, sums it up as follows:
"During the pregnancy, we found it difficult that each doctor gave their own opinion. For the urologist, it was very simple: it had to be removed. For the gynecologist, there was a strange kidney, which they thought wasn't working. For the other doctor, it was fine, it was working. We would come back from an appointment, everything was fine, and then it would be horrible. What did we do? It would have been nice if they had coordinated before we had our appointments."
These inconsistencies can be explained in particular by the fact that in some cases a large number of medical professionals are consulted, or, when the child's clinical situation requires additional tests, by a lack of data. As doctors are unable to take a firm and definitive position, they give parents nuanced explanations, some of which may appear contradictory at times in relation to the statements made by other medical professionals at certain points in the care pathway.
This uncertainty in diagnosis is particularly difficult for parents and patients to cope with. What they expect from a diagnosis is not just a simple diagnosis, but rather support, which will form the starting point for building a doctor-patient relationship.
Finally, other factors influence how parents react to the news of a chronic illness. This is particularly true of their perception of the organ concerned. The heart and lungs, for example, receive more media coverage than the kidneys. However, familiarity influences our understanding of medical language. Some people will underestimate the severity of the disease if it affects a less "charismatic" organ.
As a result, kidney disease is now perceived as "less serious" than other diseases, particularly because there are solutions such as transplants to compensate for deficiencies. Not all parents are necessarily aware that transplants may not last a lifetime, or that there is a risk of rejection, that transplants require lifelong medication, etc.
Some tips to help doctors
These communication gaps between doctors and parents make the announcement a complex moment for both parties. It is all the more important to prepare healthcare staff for this, as the current context of staff shortages increases the pressure they are under.
There are several ways to make it easier for parents to receive this difficult news. Among them, the use of active teaching methods, already used in healthcare simulation, is one option to consider. Pursuing the goal of "never the first time on a patient" through the deployment of role-playing scenarios and the use of patient resources by French universities, i.e., mechanisms that include patients and allow future doctors to practice interpersonal skills from the outset of their training with people receiving care, actors, or students playing this role.
In addition, it is possible to use narrative pedagogy, which has been developed particularly in nursing sciences. This approach relies on storytelling as a virtuous mechanism for learning, analyzing situations, and transforming actions. In concrete terms, training situations are based on the analysis of experiences lived and recounted by patients during care and/or by students reviewing a care situation. This humanistic approach "enables participants (teachers and students) to understand and learn, develop interpretive thinking, generate multiple and diverse knowledge, and integrate theory into practice. " The analysis of these experiences strengthens professional-patient cooperation. In doing so, narrative pedagogy creates a strong interpersonal dimension. It can enable us to "overcome personal murmuring or collective consolation and transform ourselves into social action and the practice of citizenship. "
Involving patients from the outset of healthcare professionals' initial training, in order to consolidate consideration of their experiences, has proven beneficial. Such measures are already in place in medical training programs at several institutions, including the Université des patients de Paris, the Department of General Medicine in Bobigny, and in Montreal, Canada. Patients share their experiences, take part in simulations, and participate in role-playing exercises with aspiring doctors.
Finally, and in connection with the previous point, we need to further develop the sharing of experiences through measures that complement existing therapeutic education programs. This could involve, for example, encouraging exchanges between families who have had to deal with the diagnosis of a chronic illness and parents who are now facing the same situation, or setting up groups to share experiences of managing the illness on a daily basis. These measures should not only be designed for families: doctors should also benefit from protocols for exchanging and analyzing practices, starting from their initial training.
By taking into account the testimonies of parents and healthcare professionals, the origins of communication gaps between doctors and patients can be better understood, thereby preventing further distress for couples who are already suffering.
**For more information:**
_ – Colinet S. and Avenel C., 2018 Education, training, and health—How to develop rare disease notification pathways for unborn children, Presses universitaires de la Méditerrannée, Mutations en éducation et en formation series.
Séverine Colinet, Senior Lecturer in Education Sciences, CY Cergy Paris University and Céline Avenel, Educational Engineer, PhD, Center for Support of Educational Innovations, I-Site MUSE University of Montpellier, Associate Researcher LIRDEF, University of Montpellier
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