Communication and Decision Making with Children and Families – a Parent’s Perspective

 by Renate Pfeifer, SIOP conference London.
Talk given at the 44th SIOP conference in London, Joint Session: Symposium on Communication and Decision Making in Children and Families, Oct.8, 2012


Just a few words about myself:
I am a mother of three children, two of whom have been treated for different types of childhood cancer.
I am married with a general practitioner and I am a teacher by profession. Since 1999, I am working in the local parent initiative for children with cancer in Bonn. I am the contact person for all school issues – connecting patients with their home school, keep the schools informed and help to ease the transition back into school. I am a patient representative in a German federal committee on health care issues and I am a member of the patient and parent advocacy group of the EU-funded project ENCCA.

Communication is the basis for good treatment

In pediatric oncology, parents and their children are faced with a terrible diagnosis. Out of the blue, their world crashes. Helplessness and hopelessness are dominating the emotions. ‘Normal life’ is in disorder.

In this horrible situation they come to the specialized centre, where they hope to get the best possible care.

They have to learn everything about the disease, understand the situation as well as the treatment options. The communication from the clinical side intends to give information and explanations, in order to generate understanding of the disease and its implications, of the therapy and its hopefully good outcome. It should enable the family to be aware of what is going on. They have to understand in order to cooperate. Their compliance is crucial for the course of the treatment.

The first conversation with the treating physician will have to set the basis for trust. Thus, it is important that this very first informing consultation is conducted by an experienced physician who can generate the necessary trust by his/her knowledge about the disease and its treatment, but also about parents’ reactions under these circumstances.

Once the diagnosis was clear the head of the department talked to us in a calm setting. It was a very comprehensive talk in which we learned basics about childhood cancer (in particular the kind our son was affected with) we learned about the mechanisms of the treatment and why it implied good chances for cure – though on the other hand the outcome was uncertain. At the end of this conversation we were sure we were at the right clinic, in the right hands of an experienced team. We trusted them. And with this in mind we could talk to our then 13year old son, help him to understand and sense the same kind of trust -trust in us and trust in the medical team.

Parents are the first to talk to

Parents know their child best, and they can judge how much their child understands and what he/she needs to know to comply. They themselves have to be convinced to do the right thing in order to convey this convincement to their child.

When in former days children were not told that they had a life threatening disease this can and should not be done anymore. Children know much more about cancer and they realize that a child without hair is being treated with chemotherapy. There should be openness on this part as well as on the fact that there is hope.

It is important that the child knows that his/her disease is life threatening and he or she would die if not treated. Otherwise the child would not agree to be submitted to all the procedures and tortures of the treatment. But parents will have to be asked for permission before this information is given to the patient and they should be present in order to realize the reactions of their child and to help answering questions that might come up later. They are the advocates of their child and have to act on his/her behalf.

If teenagers and adolescents prefer a separate conversation with the physician – this should be made possible, because they may want to ask questions they would not ask in the presence of their parents.

Information should be given by an experienced physician
and with children always in presence of parents – with honesty and openness
special setting is necessary: it needs time     not in the corridor, not in a few minutes …!!

What does the child need to know? How much detailed information about the therapy, about possible complications, side effects, prognosis and late effects is necessary?

When we heard that our son had a 25% chance for survival in the relapse situation he was in the room, as he was 17 years olby then. My first thought was: does he need to hear that? He did not ask for this information. Would it not have been enough for us parents to know about this immensely difficult situation?

So, my question in general: does a young person need to know his prognosis in statistical numbers? Percentage figures do not say anything about the very personal chances. On the contrary: they can be extremely demotivating.

Yes, if the patient asks, he/she has to get honest answers. But if he does not ask, parents may be the better moderator in conveying the message in smaller doses.

Many different people/different professions are involved in the treatment alliance: physicians, nurses, members of the psychosocial team – to mention only a few. They all have their specific functions and each should have his/her specific role in this “game”. It is important that they stick to it and do not assume other competencies.

Each person of the team has his/her own function

Good and frequent information exchange between team members is essential for a smooth way through the journey. Trust and confidence within the team is essential. Parents sense this and can only feel confident if they know the whole team is working together – together with them.

Improved communication is not only beneficial for patients and parents, even the professional team will have less problems and more satisfaction.

Professionals need to reflect about what they say, why, when.

I fully support the endeavors to inform the young patients age appropriately. But the information they get should not overburden them; it has to be adapted to their needs and intellectual capacity. But nevertheless, parents will have to decide on their behalf.

Decision making – shared decision making – informed consent

The two terms ‘decision making’ and ‘shared decision making’ suggest to patients and their parents that they are involved in all decision making processes. But are they really? Which decisions can they really make? They will have to decide whether to take part in a trial or not, but can they decide about the therapy? Would this not be too much responsibility?

So, are we really making a decision? – or is it simply consenting to what seems best for us in a desperate situation? By law the parents have to consent. The children have to be informed and convinced, to agree to the therapy. This must happen in a matter that is individual and age appropriate.

It seems to me: the information about the disease and its implications is most essential. If we understand the options, we can make up our minds more easily.

In pediatric oncology, the clinical trials are the protocols, that is: the recommendation for the currently best treatment for a specific disease, which are based on the experience of the past decades. Each trial is designed to further optimize the ‘standard’ therapy. Would parents/patients refuse to take part in a trial in which they are offered the best known therapy with an overall good prognosis? In the situation of a life threatening disease?! I don’t think so!
I am not talking about refusal of treatment in general – that would be a totally different issue. Even an extra talk…

But the information given with the consent forms for participating in a clinical trial has nowadays become much too elaborate, much too detailed and thus confusing for anybody totally new in this situation. Who can sit down and read 20 to even 60 pages before agreeing to a trial in a situation of total confusion due to the life threatening disease one has hardly learned to pronounce?

It is assumed that one would be able to understand a clinical trial if only the information is long or detailed enough. But that is not true.

We cannot become medical experts – we have to rely on their expertise. Let them help us to understand randomization, which is very hard to agree to.
Also to ask children and young teenagers to sign consent forms seems not appropriate. Yes, they need to know what will happen to them and why the different procedures are necessary for the goal we all have in common: the survival of the child with the least late effects as possible. But they should not have to sign a form.

Of course, basic information about trials and study design is important. The great success in survival rates of children with cancer is based on well designed protocols in clinical trials. Our children profited from the knowledge gained in the past. And the next patients profit from the information gained with the treatment of our children. We parents, and also the older patients, have to understand that, or else we will not comply. But we need time. Thus, the first and basic, maybe the most important information should come from the physician who will be responsible for the treatment of our child. Depending on how well he/she informs us and how well he/she convinces us about the advantages of the treatment option we will consent to his/her suggestion which is based on the experience of the expert.

Even in the much more difficult situation of a multiple relapse or palliative situation we cannot decide. Though by that time we have learned much more about the disease and how it affects our child. With that in mind (and if the patient is old enough, together with him/her) we can have a clearer opinion; but we still need help from the experts in this process who will have to take our family situation and our expectations into consideration.

Do our children in the palliative situation need to know the full scope of their prognosis? Again, there have to be honest answers to all questions raised. But the child does not need to know every single detail because it would be discouraging, diminish (destroying) his hope and also his quality of life.

Thus, I would prefer in this context the term ‘informed consent’ to ‘decision making’.

Informed consent is fairer, more honest and describes the situation really.

When the ALL relapse was diagnosed, our son was 17 and he thought that the hardest therapy would give him the best guaranty for cure – a bone marrow transplantation.  But when he was informed about this special treatment and the kind of late effects he may have to encounter, and when it was compared to the chances of the also well established relapse protocol, the physician convinced him and so he agreed to the less invasive treatment. Who could make this very difficult decision – transplantation or not? Again we relied on the expertise of the physician, who had to take the responsibility.

Our decision is made much earlier: at the time when we trust him.

We can give ‘Informed consent’ when we are well informed and are able to understand the full scope. Also our children can consent to something they understand. But this is also a process, we learn along the line, with the course of the treatment, and with the special situation we and our child are in.
And also the professionals can learn.

As parents we are the advocates of our children and as we know them best we can also judge how much and what kind of information they should get.
Of course we can also find information outside of the hospital: there are books, brochures, pamphlets, the internet – we will have to be careful in our selection. We need to know which sources we can rely on, and should, if in doubt, turn to an established parent group for help. Help from another kind of experts.

And together with that parent group we might also be able to influence the situation in the hospitals: strive for less bureaucracy, for simpler information and consent forms, for more staff – which means for more time with every single patient. These days the treatment of childhood cancer has become more and more complex while on the other side the healthcare authorities try to save money by saving on staff. Today Health care is fallen under an extremely economic pressure! That`s very dangerous!

A treatment like that of a child with cancer cannot be safely conducted if there is no longer time enough for effective communication.

Renate Pfeifer,
Parent initiative for children with cancer in Bonn

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