Research into communication between healthcare providers and patients has intrigued Melle Foijer for years. When his youngest son Lev was diagnosed with a brain tumor, from which he died after 2 months, he experienced as a parent how valuable good communication is. Melle personally experienced the visible emotions in the form of crying from paediatricians and pediatric nurses surrounding Lev's illness and death. He recently started a new study: what are parents' thoughts about crying paediatricians and pediatric nurses? For his research he is looking for parents (experience experts) who want to participate in his studies.

Since his training as a physiotherapist, Melle Foijer has been fascinated by research into communication between healthcare providers and patients. During his thesis he enjoyed doing literature research on measuring instruments for measuring communication between them. Because he enjoyed doing research and he wanted to remain involved in such research, he made a career switch. He will become a lecturer-researcher in physiotherapy. In the first years he and other colleagues do a literature study on communication within physiotherapy. Inquisitive as he is, Melle will start in 2019 with the master 'Evidence Based Practice in Health Care' at the University of Amsterdam.

Problems during pregnancy

He was just two months old when his youngest son Lev, then 15 months old, was diagnosed with a brain tumour. With this, his interest in communication in healthcare suddenly takes on a new dimension. “We already had concerns during the pregnancy,” says Melle. “The 20-week ultrasound didn't look very good. They thought they saw something in the construction of the vertebrae, but they were not sure. They also saw something near his intestines, but they weren't quite sure what it was either. It could also fit the stage of the pregnancy. But if this was not the case, we had to think of some kind of syndrome”. Before Melle knew it, he and his girlfriend Marrit were with the clinical geneticist (a doctor specialized in DNA research). There they were asked: what do you find acceptable and what not? “It was so black and white. It was something we hadn't thought about before or wanted to think about at all. Let's talk about it. That was very intense,” says Melle.

“There were many follow-up studies. In particular, at one point it appeared to be a congenital abnormality of the spine. With possibly a rib that did not stand well. This could develop into scoliosis, when the spine grows crooked. All in all, we had a pretty good feeling about it from week 30 onwards. And thought: we're just going to see how things go in the future”.

It was exciting when Lev was born, because what were they going to see of the abnormality? The first thing they saw was a huge fracture pocket on his flank. That was a bit of a shock, because what exactly was that? After just a few hours, Lev followed his first examination. A number of vertebrae and ribs turned out not to be properly formed, but otherwise he did very well. Melle: “After a few days we were allowed to go home. The first months we didn't notice much about Lev. Mechanically it went very well. You could see that there was a mild form of scoliosis present. We knew this could be a burden to him in the long run and that he might need help, but we had no additional concerns. It just belonged to him. Every now and then he had to be checked. But that was it.”

Levi backs off

In mid-2019, Lev falls ill. In the weeks before, Melle and Marrit had more concerns about him. “We saw that it was increasingly difficult for him to turn his head. With scoliosis in mind, we thought this could be a possible deformity. But at one point we felt like he was slipping away from us a bit. Sometime in October it really didn't feel right anymore. In the Medical Center Leeuwarden they discovered that Lev had a huge tumor in his head. And then you're right in the action and survival mode. The rollercoaster starts right away.”

Lev was rushed by ambulance to the Wilhelmina Children's Hospital in Utrecht. The neurosurgeon was already waiting for him, because a drain had to be placed immediately to drain the cerebrospinal fluid. Melle says: “It was still exciting whether I would be in Utrecht on time, because I was still in Leeuwarden. Luckily I was on time and was able to see him in the OR for a while. Because he was also going to have surgery the next day in addition to placing the drain, they put him on a ventilator and kept him asleep. The operation went better than expected. They hadn't hit anything vital and were able to remove everything. We had some hope, but it soon turned out not to be good.”

The day after surgery, they tried to revive Lev. But he showed little activity. “He couldn't get off the ventilator. He also did nothing neurologically; there was a complete spinal cord injury. We didn't see this coming," says Melle. When he and Marrit tried to figure out what was actually going on, they realized that Lev's lung picture has never been really good. “In the end, Lev never got off the ventilator. In the first weeks he recovered a bit neurologically. You could interact with him. But he couldn't express himself verbally because of the ventilator."

Looking at Lev with different eyes

Two intensive months followed, during which Melle and Marrit traveled daily between Leeuwarden and Utrecht. Because in addition to caring for Lev, one of them was always at home with their eldest son Bo. Ultimately, Lev died on December 23, 2019 from the consequences of his lung image. “The conversation in which the doctors indicated that they really couldn't do anything more for Lev, has stayed with me very much. It was explained very clearly: this is the situation and we actually see no way out. Because Marrit and I saw it coming, this was not unexpected. After this conversation we walked back to Lev. There we looked at him with different eyes for the first time. We saw him suffer. Normally we went on and on and on and thought: this is the situation. But when you say it's hopeless, you see the real suffering. Maybe then you also have the space for it,” says Melle.

Space to talk and think

During the entire care period, multidisciplinary consultations (MDOs) take place on a regular basis. This is a consultation of experts from different professional groups, during which the diagnosis and treatment plan are discussed. Melle immediately asked if he could join this. And that was allowed. “I was there from start to finish. That was nice and very helpful. At such a first consultation, I saw the doctors looking and thinking: can we now say everything we think? But I immediately agreed that they could say anything. What also helps is that I have a medical background. We knew from day one what the blackest scenario would be. The talks during the MDGs went very well. I was able to express our concerns, but I was also able to contribute ideas and ideas regarding research and treatment. It is not very often that parents are present at all meetings, but it can be incredibly valuable,” says Melle.

What do parents think of visible emotions in doctors and nurses?

After Lev's funeral, Melle picked up his master's again. He decides to write his thesis about parents' thoughts on crying paediatricians and pediatric nurses. This in collaboration with Dr. Judith Aris, dr. Mirjam de Vos and Prof. dr. Dr. mr. Edward Verhagen. They all work in pediatric palliative care and also conduct research. The focus of the research that was recently started is on the parents of seriously ill children, children who have died or children who have survived a serious illness.

Melle dived into literature. What he found was a 2019 study by Janssens et al . A questionnaire was distributed among doctors and interns in which two questions were examined: how often do you cry in the workplace and/or in the presence of a patient? What are your own thoughts on this? A significant proportion of the doctors did not find this professional. “I want to find out what parents think about this. Hardly any research has been done on this. My question is: this is what we know from doctors, how do parents feel about this? And how much does this differ from each other?”, says Melle.

Crying confirms

Melle also saw the emotions of the caregivers, especially after Lev's death. “But of course it could be that I didn't notice it before. Just after Lev passed away, we saw his doctors again for the first time. I remember running into a doctor in the hallway and telling them how Lev had been. The doctor was full. And she also said directly from a kind of basic attitude: 'This is not right, we are here to comfort you instead of the other way around.' But Marrit and I actually thought it was very nice and appropriate for the situation. You will then get confirmation that Lev has also done her a lot. There should be room for that. She might be shocked, but not us. It is nice that you can show that.”

Questionnaire for parents

Melle is currently in the start-up phase of his research in which a questionnaire for parents is being developed and validated. “We know from research that parents value sensitive, compassionate, empathetic and emotionally supportive caregivers. What we don't know is how parents feel about crying pediatricians and pediatric nurses. To gain insight into this, it is important to ask parents' thoughts on this subject. A good questionnaire is important for this.” This questionnaire can then be used in follow-up research. The insights gained from this (follow-up) research can help to draw more attention to this subject during the training of paediatricians and pediatric nurses. With the aim of improving the quality of care for seriously ill children and their parents.

 The online questionnaire is expected to be ready for use in July 2022. For the study, Melle is looking for parents (experience experts) who want to participate. If you have any questions or if you would like to participate in this study, please feel free to contact Melle via m.foijer@hotmail.com or 06-41480588.

It is special that the fascination for research into communication within healthcare coincides with Melle's experience story. “My motivation for doing research has increased and has become meaningful. As sad as it was with Lev, I hope that with my experience and research I can do something for other children and parents. My story can serve as an example for healthcare professionals.”