Working with children with cancer – More than just a job
Working with children with cancer – More than just a job
Our topic title "pediatric (children’s) oncology" evoked strong emotional reactions from several mothers and fathers of our staff. "This hits too close to home for me, I couldn’t write about it", or "How do people manage to deal with this?". And we are only on the sidelines; physicians, caregivers and nurses at the hospital, hospice or families at home are the ones that have the real tough job.
When children get the diagnosis of cancer, this is a severe shock for the families. Depending on the age of the child, the question also arises: "What does my child know from the disease?"; & Copy; panthermedia.net/Monkeybusiness Images
In Germany, about one in 410 newborns get cancer1; approximately 1,800 children are diagnosed before the age of 15. Their survival rate is now over 80 percent. That’s in part thanks to research, which discovers new treatment methods, but is also due to the commitment of many scientists, physicians, and nurses, who attend to the sick children. Foundations that support cancer research efforts with donations should also be mentioned at this point.
Various therapies that are customized to the individual patient are available to treat cancer. While that’s wonderful and important, it only makes up a portion of treatment in children. After all, unlike in the case of adults, the time children need to spend in the hospital already presents a challenge. Children are not used to being separated from their parents – yet the nearest clinical facility, which can provide the necessary care, is not always near people’s homes. That’s why treatment centers need to have a setup that can adequately accommodate families even for several months at a time (find out more on this topic in this interview).
Proper disease communication
Another difference in pediatric oncology compared to adult oncology is communication. More often than not, adults are aware of the consequences when they are diagnosed with cancer. Meanwhile, children are often not able to understand the whole extent of it or they are actually not being told everything to spare and protect them. But is that truly the right way? Professor Dietrich Niethammer, retired director of the Center for Pediatric and Adolescent Medicine at the University Hospital Tübingen, doesn’t think so. He feels it is crucial to always tell children the truth. "We have agreed to always make a kind of 'contract' with children at the beginning of their treatment. We promise that we are always honest and tell them everything, even if it is bad news. And we make it clear that the children can turn to us with any questions they might have. The children can count and rely on us for that. Needless to say, things are somewhat different when it comes to small children versus older children. Small children are not yet able to put their fears into words and they don’t understand some things. You have to consider the individual child and see what he or she knows already, what he is able to do and what she is thinking. This gives you clues on how conversations with the child will progress." (For the full interview, click here). That’s why it is important to adapt to the respective situation and to be available to answer questions the children might have. This is difficult but not impossible. And as long as there is hope, it certainly is also easier to do. But what happens when all other medical possibilities have been exhausted and there is no longer any hope of a cure? In these cases, families can turn to a children’s hospice.
The first children’s hospice was opened in 1982 in the UK. Germany followed suit in 1998 with the Balthasar Children’s Hospice in Olpe. Those who enter the building, don’t get the feeling of being in a sad place. Colorful hand and footprints adorn the walls, laughter fills the halls and everyone receives a friendly greeting. The major difference compared to an adult hospice becomes obvious within the first few minutes: families can virtually call on the hospice immediately after getting a "terminal diagnosis". Perhaps that’s also why the vibe is different in here. Hospice director Rüdiger Barth explains, "The children’s hospice is available to sick children and their families four weeks per year; of course, there is no time limit during the final phase. Health insurance covers about a third of the costs for the hospice stays."
It makes a difference how the time is used
The hospice is not just available to children with cancer. As a matter of fact, they only make up about 10 percent of children in care. Yet the desire of families for some downtime is the same. Families enjoy the stay because they get the chance to spend the time they would otherwise need to care for the sick children differently. Mothers and fathers can lie down and rest if they feel like they need it, and siblings get the attention they often miss out on in everyday life. The employees at the hospice make it possible. They also have to live with the fact that care benefits are frequently subject to cuts. And here it often is the small things that make a difference, even when things are going well. For instance, how a child comes to the hospice. Rüdiger Barth explains, "The teamwork with hospitals is great, even if things have changed over the years. In the past, the treating physician would still accompany the child to the hospice to review further procedures. Today, that’s a rare occurrence; we often need to make do with just the written instructions". As is often the case, there is not enough time for the caregivers – even though they would actually like to take it.
Having said that, even if all of the conditions are right, this remains a tough job that comes with a lot of emotions – both positive and negative. That’s why it is nice to know that there are many people, who love to do this job.