Talk presented at the ICCCPO / SIOP conference in Geneva, Switzerland - Sept 2006

What is this common aim, this common -purpose?

Let me begin by mentioning that I as a mother know what it means to have a child with cancer. In 1994 our son Stefan was diagnosed with leukaemia and then in 1997 our other son Martin was found to have an osteosarcoma. The therapies were successful, but unfortunately Stefan suffered a relapse in 1998. We also have a healthy daughter. We have thus had the experience of accompanying our sons through three therapies at the Paediatric Oncology Unit in Bonn.

I studied to become a school teacher and my husband is a general physician. Thus I must admit that in many respects we had a better starting position than most other parents. We have been taken seriously from the start and were self-confident enough to discuss things and expect answers to all our questions.

I am often asked: “How could you bear it?” My answer always was: “I and my family were able to bear it because we always had the feeling that we were not fighting alone. There was a whole team supporting us. And - fortunately, our children are alive!”

We all had the same aim: we wanted the boys to get well again and to get over the illness and the therapy with as little damage to body and soul as possible. Martin is badly handicapped in walking and will never be completely well again, and damage to the soul unfortunately cannot be completely avoided.

Thus our aim must be to reduce these adverse side effects as much as possible. These young patients must find their way back into normal life and society, they must understand their own point of view as well as that of others, and they must be able to lead a responsible and enjoyable life on their own.

Our aim must be to ensure their physical and mental health!

Since 1999 I have been a member of the psycho-social team of the Bonn Paediatric Oncology Unit, paid by the parent initiative. My job is to keep young patients in touch with their school. So in a way I have changed to the other side – from the affected mother to the hospital team.

Our common aim is to ensure physical and mental health!

Successful cooperation is, however, only possible if the will to do so is there and if certain conditions are fulfilled.

First and foremost, the affected parents must be provided with adequate information concerning diagnosis, therapy and prognosis. One cannot work towards a goal without knowing the way there. Of course, every child is different and parents know their child better than anyone else. But the treatment follows strict protocols established by extensive medical experience and thus cannot be very individual. We as parents must recognise the competence of the doctors responsible and must trust them. We have very little to do with the medical decisions. Our desire to do the best for our child cannot, for example, result in giving the child any other medication of our own choice, without having first discussed it with the responsible doctor. We have no knowledge of possible interactions with the chemotherapy.

Unfortunately no one can guarantee that the treatment will be successful. But the parents as well as the child, according to its age, must be made aware of the decisions taken by the doctors. They must trust them completely and not question every step, and at the same time they should support the doctors' decisions, whatever the outcome will be, and, they must accept the fact that for many questions there are no answers or only inadequate ones.

Such a dialogue is an extra strain on the professional team, but the patient will benefit from it. Only thus is cooperation possible, and only thus will the patients and their families be able to come to terms with the illness and all its consequences, in hospital and later on.

What, then, must parents do?

We as parents can be made aware and shown how to support and comfort our child during the therapy and help to lessen the side effects. In this way we can make a very real and substantial contribution to the quality of life of our child. This is our role!

How can we acquire this role? First, it is necessary to understand that, besides the individual needs of the patient, there is also a large fund of collective experience. The initial shock of the diagnosis, the ensuing fear, uncertainty and helplessness, all parents will have these feelings. The reorganisation of family and household as well as daily affairs, these are common to all parents.

Here one can advise and provide help drawn from experience. Parents who have gone through such an ordeal, as well as parent initiatives, are there to give advice and lend a hand. They are able to help very effectively. They are also able to give important advice on any medical questions that have remained unanswered.

Communication is equally important!

Discussions with the responsible doctors and the nurses, with the psycho-social team and other parents: all this will help the newly affected parents to learn to cope and become competent. This makes them fit for the job facing them. In this way parents become increasingly professional in caring for their child in the hospital as well as at home and even if palliative care should become necessary.

Again: communication is the fundamental requirement.

We as a family must learn to cope with the situation, while the professional team must learn to put up with us. We must get to know the individual members of the team, their personalities and their responsibilities. They, on the other hand, must get to know us, our family structure, our sadness as well as what makes us happy. Mutual trust must be established, and that means we have to open minded. Sometimes our privacy will be interfered with. Sometimes decisions have to be made without our consent. Helplessness, despair, even anger can take possession of us. The professional team must be very understanding and must really want to help the family, to respect and trust its members, without any restraints. This is a lot to expect and it isn’t always easy. There are usually many points of friction, especially at the beginning.

Both my sons were already adolescents when they became ill. They did not talk much about their illness and were not always open to people. They were on friendly terms with some members of the team but not with others, and they showed it! For me as mother it wasn’t always plain sailing as I wanted to maintain a good atmosphere. But we all felt the honest wish of the entire team to take the boys seriously and consider their individual wishes, and to keep any restrictions to a minimum. An important aspect was the integration of all of us into the therapy. My sons became experts at dosing their medication and managing the infusion machines. Their questions were never taken as signs of distrust. It was even regarded as welcome help when we checked and watched that everything was functioning smoothly. Any difficulties were readily discussed and with growing mutual trust this usually led to an improvement of the situation. No one doubted the competence of the other. This can only be achieved by really open discussions.

One’s everyday life revolves around the ward, where one has everything in hand. But as soon as something unexpected happens, if the therapy is not showing the expected results or there is no bone marrow donor available or some other complication sets in, the situation again becomes difficult and has to be mastered anew.

My sons are both alive and well, they are university students, they have friends and socially they are fully integrated. We have returned to everyday life, but nevertheless nothing is as it was. It is very hard to believe that everything will turn out well.

Maintaining the mental stability of patient and family is something which the entire professional team of the hospital takes very seriously. It is not left to the specialized groups. Especially the nurses keep in close contact with the patients and their families. Of all the professionals, they are the ones who know the patients best, their wishes, needs and difficulties. On the other hand, they have to accept that every patient must find his own path through the illness.

Doctors, nurses, psychologists and teachers, they all form a strong team around the parents and patients. But it is important that all team members are aware of their role, that the right team spirit prevails. Patients and parents have a very sensitive antenna in this respect!

What happens when it becomes apparent that the child will not recover?

I myself have experienced this very sad situation with other patients. Each time, I was overcome by a feeling of utter helplessness, I was shocked by the fate of the family and tried to think how I would feel if I were in their position. But these are only theoretical questions and they are of no use in practice.

As a member of the psycho-social team of the hospital I have had to learn anew every day how to deal with difficult situations: approaching another family, helping them during the therapy, not withdrawing when the therapy turns out to be unsuccessful. My own experiences help me sometimes because I know how one feels in such situations. I also know that a family needs time to come to accept the new situation. I have always liked to approach the adolescents personally because my own experiences make me feel particularly close to them.

Above all, there must be mutual respect, for the family and for the professional team. The achievements of the team, both medically and psycho-socially, deserve our highest appreciation and praise.

We as a family have experienced the devoted commitment of our clinic team in a form and to an extent which is rarely found today. We received psycho-social help from all members of the team, not only from the psycho-social group. We always regarded the unit as our ally. If help was possible, then only here, with these people!

Today I, as a member of the psycho-social group, am proud to be a part of this structure. But I have also become aware of how difficult it is to be a real team and to do good and useful work.

It is my aim to strengthen the role of the family within our team and to represent their point of view, because each family must find their own way to proceed  -  the professionals must sometimes be reminded of this! Our psycho-social team can only offer help, we cannot impose it. And we must also avoid giving the family the feeling that they cannot cope without our help. It is up to us to recognise and implement the natural resources of the families and to offer our help with the necessary respect.

Are there boundaries which must be observed?

Boundaries are often inadvertently crossed - more often in a positive rather than a negative sense  -  more often involving too much rather than too little help. We should all be able to be professional as well as compassionate. Deep friendships are formed again and again. This must only be allowed to happen with great care. There are parents that allow their child to develop relationships, others fear them.

Such intense experiences usually need to be thoroughly analysed and digested. This does not necessarily require supervision, but it does require one’s own critical appraisal as well as the support of the team. This support should include the full acceptance by the team that such intense relationships can certainly develop. One also needs help to decide on what the most important and correct consequences must be. In this way one learns to cope better next time. Usually one develops a reasonable mode of self-protection.

We - the parents together with the professional team - thus have a common aim, solely directed towards the welfare of the seriously ill child.

I am aware that we have been very lucky with the treatment we received.

Even with this outstanding patient care, something always remains to be done, for example with respect to waiting periods or suboptimal pain relief or palliative care. But we are tackling these problems with increasing success.

One problem, however, remains, namely that the care of young grown-ups with cancer is often catastrophic. Parents of children that have recovered must live with the fear of a possible relapse. That this fear is unfortunately justified, is evident in the daily clinic routine, where we are confronted with late relapses and secondary malignant tumours. What happens then? The outlook is not at all good and the care of young adults with cancer is far behind that of children with cancer.

I would therefore like to appeal to you all:

Help us to improve the care of young adults with cancer!

Renate Pfeifer

Email: renate.pfeifer@uni-bonn.de