Keynote address at the ICCCPO / SIOP conference in Geneva, Switzerland. Sept 2006

There is so much experience gathered in this room that anyone else here could open this leg of the congress. We assume that we have been asked to address this session because we live in the host city to this year’s SIOP.  So, on behalf of the “indigenous parents”, we would like to first extend to all a warm welcome to Geneva.

Child cancer is so overwhelming for everyone concerned that even those who work in hospital structures often do not fully realize what it entails. Therefore, we recognize how difficult it may be for lots of people to identify with what we have to say. But we feel confident to share with you because no one else than another family of a child diagnosed with cancer can understand what it really means to live through that experience. 

The reflections we would like to share are not just our own.

They are also those of other parents, of our children, and of some doctors and nurses in various parts of the world who accompanied us through three years of a battle we wished would never have happened.  

But before we begin, we want to clarify something. Reviewing our notes last night, we wondered how our reflections might be received by some people here, particularly by the medical staff. We do not want our challenging plea to be mistaken for an unfair judgement. Please understand that when we challenge what is being done in some places and use examples of things that could have been done differently, we do not mean to blame anyone. Our sole purpose is to illustrate the points we wish to make, which otherwise might appear vague and theoretical. We are immensely grateful to all medical staff and want to tell in particular Dr. Pierre Wacker and Dr. Ulya Ozsahin and others who are in this room that we love them and feel much indebted to them. We are utterly conscious of how difficult it is for all those involved in child cancer care to do their respective share of what it takes to tackle the many issues at stake. It is precisely for that reason that we want to invite everyone, from families to medical staff and hospital structures to never stop revisiting what child cancer means and entails, and to nurture the constant desire to do better, no matter how much one has already done.

So - When we look back over our own years of still unfinished battle, what is the single most important lesson we have learnt?

We learnt the vital importance of teaming up. But not any kind of teaming up: we mean teaming up in a way that places the child at the centre, while everyone strives to make things work for every other team member.

In practice, what does that mean, and what comes in the way of achieving this?

Overcoming cancer requires a concerted effort that unites the child, the medical staff, the parents and the rest of the family with an important role played by siblings.

But teaming up comes less naturally than it seems, because the chances are higher that there will be discrepancies of views, or simply different needs, rather than convergence among the three entities.

Interactions between families and medical staff

Cancer puts us all, doctors, nurses and parents, in front of our respective limits. It is a humbling experience that highlights what we do not know as much as it highlights accumulated knowledge.

This is true and can be awfully hard for parents who sometimes have to assess whether the proposed treatment is indeed acceptable – something many parents are confronted with, for example when they are asked to sign an informed consent for a clinical trial.

This is particularly true for the medical staff who are confronted with pathologies, which they cannot be sure will succeed, and sometimes with parents who consult specialists all over the world, surf on the net, raise sharp technical questions, want to complement chemotherapies with all sorts of products that are not part of the protocols, and argue over every step of the treatment.

Care givers are indeed increasingly confronted with a new de-stabilizing reality: families and friends who are ever more and better informed. Without pretending to be competent in paediatric oncology, many parents investigate and compare. Some of them no longer take for granted the truths coming from the medical profession. When this happens, it should not be perceived by medical staff as a lack of trust, but as a positive add-on and a legitimate right that should be welcomed and supported.

Our daughter suffered from a Ewing sarcoma on the jaw. She had chemotherapy in Geneva, which was followed by a hospital in Paris. She had surgery in New York. Her jaw had to be removed and reconstructed with a fibula.

After the operation, the surgical pathology report showed insufficient response to the pre-surgery chemotherapy. The strategy proposed by Paris and Geneva was to opt for a massive chemotherapy with stem cells rescue. Given the severe consequences of such treatment, we decided to consult oncologists in several major hospitals in different countries.

This led us to discover that in fact no one knew whether the intensification of chemotherapy could yield better results than prolonging the milder therapy over a longer period of time with less side-effects. We had to take a very difficult decision that placed upon us a huge responsibility at a time when we were vulnerable and needed certainties rather than doubt.

So, child cancer puts doctors and parents in front of equally challenging moments. In such instances, we each have to rise above the inner securities that we have built for ourselves, and open up acknowledging our doubts without feeling threatened. It is extremely difficult for all, but the openness of the team can make an enormous difference.

Before our daughter's surgery, the prospect of removing her jaw was so daunting that we consulted doctors and surgeons all over the world. Most of them told us that it would be devastating for Alice. We were also regularly told that what mattered was to save her life. We were advised not to put our concern for her quality of life on the same level. But we refused that logic and did everything we could to get both. And we thank here the staff of the Geneva Paediatric Oncology who did not discourage us. Identifying the right surgical team made a huge difference.

When parents keep searching and questioning under all circumstances it puts the team to the test! But mutual trust is not blind surrender. It includes recognizing everyone’s right (parents and doctors alike) to doubt, question and search for alternatives. Some parents prefer to follow the medical advice they are given without raising questions. Others may choose under certain circumstances to look around and seek additional advice before they give their consent. Both attitudes should be equally accepted and, if need be, options should be discussed calmly in a fully supportive atmosphere. It should also entail that all agree once the decision is taken.

It does not take much to understand how uncomfortable this flexibility can be for physicians, particularly when medical teams are understaffed, and doctors hardly even have time to carry out advanced investigations. Pro-active parents can easily get on the staff’s nerves, which in turn can lead to silent hostility that alters the quality of care.

But teaming up should not mean keeping one’s questions to oneself for fear of peturbing others. Instead, the team should always be the place to share questions, concerns, doubts, in the same way as we share gratitude and satisfaction.

We acknowledge that we all have duties, not just entitlements. But we also believe parents should never be shy about expressing legitimate concerns. And difficult as it may sometimes be, medical staff should demonstrate unfailing patience and understanding.

Teaming up also means being cohesive in front of the child

After consulting with several private doctors, the mother of a 12 year old boy undergoing chemotherapy had convinced her child at the cost of long discussions to take a series of bio-complements. Shortly afterwards, one of the physicians who was sounding him in the room dismissed these products as useless. Should not such differences of opinion be discussed privately between the physician and the parent instead of having one undermine the credibility of the other in the eyes of the child?

Finding ways of teaming up is the essence of the game, but it requires will, much openness, patience, and discipline. Everyone concerned must adjust to the others, but as parents, because this is all about your child, you may have to make the biggest effort to make things work even though it is the worst moment in your life.

We would welcome hearing from you other examples from which we could draw together positive recommendations for teaming up better.

As we said earlier: it is vital to team up with and around the child, and to strive to make things work for every team member.

What does placing the child at the heart of it all entail?

One of the implications is that one should grab every possibility of alleviating unnecessary pressures on children. This may complicate the orderly hospital life. But the circumstances are so special that they warrant it.

Adapting the hospital to children versus disci plining children into the hospital

Cancer is a tough experience for children. It is traumatic. It shakes them emotionally as much as physically. On top of it all, they are forced to adapt to the many constraints of hospital life – for days, weeks or months in a row, and repeatedly.

Often, much is done to loosen constraints and to create a supportive and positive atmosphere. But there are major differences from one hospital to another due to habits, space, financial limitations, differing perceptions of what is good and what is not, medical staff viewpoints, characters, rules, management styles, and many other parameters including culture. In each hospital it is worth reviewing practices and structures, and identifying what changes can be introduced.

One of the most spectacular positive initiatives we encountered was around surgery. In New York, surgeons let Alice’s sister who was only 16 years old come into the surgery room and help put her sister to sleep. It made a world of difference! Why would such such considerable support to the child be denied elsewhere?

Many simple adjustments can be made. Let us take the case of how days are structured in hospital:

Treatments in haematology and oncology are rigorous. They do not leave much room for individual manoeuvre. They are given round the clock and must be done at precise intervals. And you know, with the pump that whistles through the night, the injections to be made, the blood pressure checks and all that, our daughter was often exhausted at dawn. But hospitals wake up early, and, bingo, that is when a brisk nurse comes into the room.  She lets the light in and invites the child to wash herself. Of course, the echo was the regular moaning of a girl begging for a bit more sleeping time.

Our daughter was treated in Europe and in America.  On one of the two continents it was readily accepted that she was entitled to sleep as she needed, so long as she eventually had wash opened her eyes when doctors needed her to. On the other continent, we always had to struggle to get the nurses to respect her sleeping needs. There was even a freshly graduated nurse who made a point of gradually bringing Alice to wake up and wash up on the dot. She proudly built a battle plan over several weeks with deadlines and benchmarks along the way!

We also had to battle with nurses who insisted on being present when Alice washed. This created unproductive tensions for a girl who, at the age of 11, just needed privacy for intimate acts. We found that doctors were a lot more flexible on all these things.

Placing the child at the heart of the teaming up exercise would mean doing one’s best to adapt whenever possible the hospital to children rather than disciplining children into the hospital.

The question is: where is the meeting point between the needs and concerns on both sides?

Teaming up means honestly looking on all sides  to see where flexibility can be introduced.

So, one has to identify what is essential and what is not. And that can fluctuate according to the phases of treatment or the age of the patient. At a given moment, what becomes essential can be what allows a child to suffer less pain, to overcome grief or to recover self-confidence. It may sometimes clash with the rules and logics of an institution. But, there is a lot to gain by adapting hospitals to children.

n  It will be less difficult to administer complex care to a child if the nurse can take the time to delicately un-stick a dressing.

n  It will be easier for the child to cope with an invasive act if the nurse or doctor and child have taken the time to talk and exchange at another level.

When care-givers can take time with patients, it can transform a nightmare into a nice moment. After several weeks in hospital due to a pneumonia triggered by aplasia, instead of making our daughter blow into various pieces of apparatus, a physiotherapist turned the sessions into magic moments simply by making her blow soap bubbles in the room.

Attention to details can make a difference

We can talk of the decoration of the room which is not always adapted to the age of the patient. Rooms can be conceived for children and adolescents to bring their posters or other objects. Beyond mere aesthetics, the re-creation of a home atmosphere can alleviate the shame felt by some kids when they are manipulated for certain types of care.

It would be interesting since we have people coming from different places to take a look at how different hospitals are trying to adapt to children.

Instructive practices – whether successes or failures, or mitigated experiences – can be examined with their pros and cons, the extent to which they can be reproduced elsewhere, and what it would take.

So, indeed, we must team up in a way that places the child at the heart of it all. But remember, we stressed that teaming up also means striving to make things work for other team members.

Taking care of parents for a better cure of the child

Parents are often devastated by the news of their child’s disease. They also need to restructure their lives. They are overwhelmed and swamped by many additional tasks. They are not prepared. They need guidance. And their morale makes a huge beating difference: if parents do not feel good, it affects the healing.

Supporting parents and families should be a central element of the therapy. Paediatric Oncology departments should therefore take care of parents and families, not just children alone.

Some hospitals make a point of understanding the family context. They offer constant psychological and emotional support to parents and families.

At the hospital in New York, we were regularly reminded that we could make use of the family room and all the facilities it offered - including a computer connection - and there was always a specialist in case we needed to talk during the day. There was also support to solve any practical problem in town to make our life easier.

In contrast, in some other places, attention given to parents is limited to offering anti-depressants when they are given bad news. In that respect, what matters is not just how things are organized. The frame of mind matters just as much.

Help should extend to all sorts of situations

The total collapse of a mother after orthopaedic surgery on her daughter’s hip failed and her subsequent inability for some time to be present met with harsh judgement on part of several nurses. She should have been understood by all, and helped.

We were terrified at the prospect of having to break the news to our daughter that her jaw was to be removed and that she might remain disfigured and paralysed.

We could not find in the hospital the professional psychological advice we needed, although we found someone who listened to our fear and dismay.

In fact parents need help in many ways and do not have the time to live through trial and error. Cancer is a seism on families that has consequences long after the pathological conclusion. For example, how to find ways of attending to the needs of siblings?

How can a brother or a sister express that he/she feels neglected when they witness the suffering of their sister or brother? Some keep silent to the point of breathing no more, or getting sick to check that parents still care for them.

Parents should be told what to expect in the whole family, even in the long run, and they should be given tips on what to do and direct access to support in the hospital.

Obsessed by the health of their child, they neglect their own.  They should be given a range of ideas on how to take care of themselves, and encouraged by the medical staff to feel free to do it without feeling guilty.

Now, when we say that teaming up putting the child at the heart of it all is essential and that it also means striving to make things work for other team members, one of the unexpected lessons we learnt from the time we spent in hospital is that, paradoxical as it may seem, medical staff needs care too.

Catering towards emotional needs of  the medical staff

Nurses – and doctors – are confronted everyday and all day long with suffering children and heavy pathologies. They face multiple sources of stress: from having to perform delicate medical acts with possible severe consequences, to witnessing children’s revolts, exposure to mutilation and death, tensions among medical staff, lack of recognition, workloads, the pressures of time and red tape, let alone the problems they encounter in their own private lives.

To cut a long story short, we discovered that this issue had in fact been widely studied by specialists, and that although not all medical personnel are affected, prolonged dedication to oncology care usually leads to levels of stress/burnout above norm scores of other health providers. Nurses in pediatric wards bear the brunt of emotional disturbance mostly through sustained exposure to patients and families, as well as to death.

But we also discovered that internal dynamics in the medical team play a part in generating stress which is equally important, if not more. This warrants an open style leadership – one that encourages internal communication as much as it truly supports all staff members and is ready to implement changes that can improve team performance and individual well-being. Insufficient staffing with qualified personnel is also part of the problem as it places an undue burden on the team.

In order to help children through their battle, care-givers must be relaxed when they step into the room. When a nurse or a doctor is under strain or emotional exhaustion, it is difficult to address calmly and professionally every single situation they encounter. A nurse who feels bad or simply tense is more prone to making a mistake. Further, children “detect” ill-being. After months of confrontation with pain, invasive medical acts, and sometimes of feeling alone even though families and friends may be around, they become more sensitive and mature. They “know”, even if they cannot put words on it, when medical staffs are burned inside.

When our daughter was diagnosed with cancer, the medical team in Geneva warned us that at some point she was likely to explode and reject everything and everyone. It happened when we came back from New York. After having been in intense pain for so long Alice could not stand being approached by a nurse or a physician. To our utmost surprise, we had to calm down the therapist who had been sent to help our daughter. The therapist was destabilized by Alice’s strong rejection, and was unable to understand our daughter and help. We understand today that rather than insensitivity or incompetence, this reaction probably showed that the therapist had reached a saturation level and could not cope anymore.

We guess that you all have anecdotes of difficult moments that are related to staff stress, or of medical staff acting like robots as if de-humanized, which probably meant they were so burned out that it was the only way for them to keep going.

The medical staff needs support too, and ways of letting off steam so as to cope and deliver. Of course, it would be unfair to ask of crushed parents to “take care” of professional care-givers. But understanding their situation helps relate better and re-activate some elements of the much needed team approach.

What parents can do beyond self-awareness and subsequent behaviour adjustment is at two levels.

At the local level, you may wish to draw the attention of the management of the hospital to the inadequacies that need fixing such as shortages of personnel and non-functional infrastructure. You have to do it right so as not to provoke too many negative reactions. We are here in Geneva in the midst of a dialogue with the leadership of the hospital which is not always easy!

At a larger level, we may want to unite our voices and express, as parents and simply as citizens, our concern for the insufficient attention that care-givers receive in our societies, although they play such a precious role.

This consideration leads us towards our conclusion: Moving from the individual towards the universal principle

We tried to identify from our limited experience – one that unfolded in rather privileged places – what are some of the ingredients of a good recipe for teaming up effectively around children with cancer.

Should we leave it to other parents when they are hit by the news that their child has cancer to go through their own experiences, learn some of the same lessons and other, and improvise as best they can to cope with the situation they will find locally?

Or should we build on the knowledge and strength of the Parents Organizations, pool our respective experiences and define together, including with doctors, nurses and children who have been affected and are with us these days, some essential universal principles that SIOP, ICCCPO and other partners could adopt and disseminate throughout the world, that would set basic standards for all involved in pediatric cancer ventures?

Some work has already been done in that direction. It is a matter of updating things, incorporating new ideas, and above all making an official and systematic effort at disseminating the agreed upon basic principles throughout all hospitals in the world that treat children with cancer. It is not a battle that one fights alone. It requires the energy, the knowledge, the presence, the efforts, the resources of many people – and it makes a huge difference whether these people act as a true team around the child or as separate individuals.

We know as parents that goodwill from many people does not suffice. Advances cannot be left only to individuals in scattered places with results depending on local goodwill and possibly threatened by evolving local situations.

Obstacles on the way are many. This requires more often than not rising above habits and entrenched attitudes.

It challenges how we think and relate to each others as human beings, as professional colleagues, as doctors and patients, as family members. It calls for setting aside any divide because the life of a child with cancer is a compelling moment of truth that summons us to give our very best. But precisely because it is not easy, because we are human, because we have to learn what works and what not, and because all actors need to be constantly reminded that genuine teaming up is of essence, guidelines from the frontline and a constant structured global sharing of instructive practices could be of tremendous help.

We know that no one better than you – no one better than us all as a team - can accomplish this.

Jean Fabre and Muriel Scibilia        Geneva, Switzerland        Email: jean.fabre@bluewin.ch