Marina Novitskaya,
coordinator of the Overcoming Mission
(Simferopol),
participant of the ICCCPO meeting

 
The 36th Congress of the International Society of Pediatric Oncology (SIOP) took place on September 16-19, 2004, in Oslo, the capital of Norway. As usual, a meeting of the ICCCPO members took place at the same time. This year, the occasion was doubly festive, since the International Confederation of Childhood Cancer Parent Organizations celebrated its 10th anniversary.

At the jubilee session of the ICCCPO General Assembly, ten new organizations were admitted to it, and now the Confederation unites representatives of 72 countries.

Among those admitted now, there was one more Ukrainian organization: the Viden Charity Foundation (town of Konotop, Sumy region). There was also the LOSEV organization, the first representative of Turkey, which is one of the closest neighbors of the Crimea.

For those willing to see the clinic, Norwegian parents organized a visit to a children's hospital hosting patients with oncological diseases. We were especially impressed neither by the wonderful medical equipment, nor by the classroom, nor by the children's playroom, nor by the lounge for the parents.

We, representatives of Ukraine and Russia, were amazed to see huge photographs in the passage of the department. They showed children who had been cured of cancer here.

... And also, the hospital staff move along the hospital passages on... scooters! The head of the department, who accompanied us, also had one.

Among problems discussed at the meeting, I can mention teaching and educating children with cancer, situation with siblings of such children, news in the development of pediatric oncology, and experience of our "brothers," i.e., parent organizations from developing countries, which are supported by parent organizations from developed countries.

In this section, the Viden Foundation was represented together with an Austrian parent organization.

Year after year, the ICCCPO pays increasing attention to its work with survivors, that is, children who have recovered from oncological diseases. They grow up and join in the work of their organizations. Special seminars and programs are held for them.

During the last three meetings, the Executive Committee of the Confederation has paid attention to the experience of our organization. This year, our information, prepared on the request of the Executive Committee, was selected for presentation at the joint (SIOP and ICCCPO) psychosocial session "Listening to dying children."

Next year, the ICCCPO Congress will be held in Vancouver, Canada.
 

"LISTENING TO THE (DYING) CHILD"

SIOP Working Committee on Psychosocial Issues

   Dear members,
   ICCCPO has been involved for several years in the writing of psychosocial guidelines to assist children with cancer and their families. The guideline theme for this year's meeting is: "LISTENING TO THE (DYING) CHILD".
   The writing committee recommendeds a different approach this year from previous years. Rather than merely listing guidelines for listening to the child with cancer or leukemia, the meeting this year consisted of a discussion of examples of what it means to truly listen to a child, based on actual conversations and responses we ourselves had had with the children.
   We ask that each ICCCPO member collect and send to us (eg ICCCPO) by the first week of February examples of four or five actual conversations between the child and an adult in his/her environment (parent, physician, nurse, psychologist, social worker, other health care professional), followed by a judgment of the 'listening" adequacy of the response, and a suggested alternative response. We are not limiting the examples only to children in the terminal phase, but wish to have examples from throughout the treatment phase as well.
   We would like each example to follow this format:
   - (a) the QUESTION (verbatim) that the child asks (or statement the child makes), and the CIRCUMSTANCE in which the child asks/makes it;
   - (b) the RESPONSE (verbatim) of the adult (parent, physician, nurse, social worker, psychologist, other health professional);
   - (c) a JUDGMENT of whether or not the adult's response was truly "listening" to the child; and
   - (d) a SUGGESTION for what a more appropriate "listening" response might have been.
   Clearly, parts a, b and c will be easier to do than part d. It's not easy to suggest an appropriate 'listening" response. But it is part d that will give our guidelines their true value.
   We are looking forward to receiving your responses. Thanks in advance.
   Marianne Naafs-Wilstra,
   ICCCPO Executive Committee

Dear Marianne,
dear friends,

We'll show you four examples. Three of them took place in our hospital, the third is taken from practice of the St.-Petersburg hospice and is known to us from dialogue on one of conferences.

* * * * * * *

(a) QUESTION: "What for am I treating?.. At me in fact was ill nothing!.. "

CIRCUMSTANCE: a boy, 8 years old, diagnosis - Acute lymphoblast leukaemia T-cell (with new-formation in the thorax): a child with such diagnosis usually doesn't feel big disposition for a long time. And he feels rather good to the moment of diagnostic & to the beginning of the treatment. Medicines are given continuously during the first week of medical treatment (inside a vein). The result of this is quick aggravation, vomiting.

-(b) RESPONSE (parents' answer): "You saw your X-ray & heard that during inspection was told that in your breast some thing appeared. This thing is tumour. It is ugly & wants to kill you. That's why we had to start treatment. So that this thing doesn't threaten you. But your Mom came to the hospital together with you. So you wouldn't miss & fear, would you? The treatment is hard, sometimes you feel bad because of the medicines. The matter is that thing is wicked & we need to treat an illness seriously

-(c) JUDGMENT: Six years later we still consider that gave the right answer. The boy was satisfied with such explanation. Firstly he stopped fear the treatment; secondly, he wasn't afraid of the illness & understood that he need to attitude to the illness seriously. Thirdly he was convinced that parents didn't hide from him anything. After such answer he started to read attentively the book "What is Leukaemia?", that was given him by doctors.

-(d) SUGGESTION: In our opinion, the answer was full and high-grade. We consider very important that such explanation given to the child, was supported with presence in hospital of books which in the accessible form, with illustrations, would tell to the child about his illness and (in detail) how she is treated.

* * * * * * *

- (a) QUESTION: "Am I ill with the cancer? All children are sick of a cancer In this branch; that means I'm too?"

CIRCUMSTANCE: the girl, 13 years old, with diagnosis Acute lymphoblast leukemia, in a terminal condition. Parents have decided to hide true diagnosis from the girl, considering, that it injures her mentally and will cause sensation of hopelessness.

- (b) RESPONSE: "No, do not worry, you have leucosis, instead of a cancer ".

- (c) JUDGMENT: the answer was unexpected. It became possible because the girl wasn't allowed to read the book about treatment of a leukaemia, and she did not know, that "leucosis" (it is a medical synonym of the term "leukaemia") is oncological disease. In the result the answer was formally truthful (if as the term "cancer" understands tumours of internal bodies). At the same time it hides from the girl the truth about her condition. However the girl already has understood herself (by the pieces of conversations, according to other children knowing the diagnoses), than she is sick and for what illness she is treated. As a result during last days of her life she has become isolated. Probably, she argued so: "They do not hide from others, than they are sick; so it means, them will cure; and everyone hide from me all that means, I'm in the most worse condition". The girl could not discuss it with parents, because they denied the fact of disease.

- (d) SUGGESTION: It is very difficult to judge what to answer a direct question of the child who is in a terminal stage... We believe, that the most true decision - not to hide from the sick child all difficulty of his condition, including that it is threatened with fast death. At the same time it is necessary to remember: nobody can predict, what can happen tomorrow, - and improbable recover nevertheless happen, though it is extremely rare. Therefore it is necessary to speak about fatal threat though also very probable, but do not make a stress, as if the fact is inevitable: "You'll die within the next few days". We profess Christian viewing - and we consider, that the person, even small, should be able to think and remember that he is mortal, and what are in the results of this. However we categorically against the christianity to be used as a certain means of psychotherapy to distract the child from a reality of problems rising at him. It shouldn't be formal consolation but feel together with the child tragic element of dying and joint overcoming of this tragic element - here is we see a formal, and empathy, in ideally, a problem of that person who is near to the patient. Unfortunately, in a reality not always it turns out to make so well as we build it in the theory..   :(

* * * * * * *

- (a) QUESTION: "Mom, can you promice me that after my death father and you will have one more child"

CIRCUMSTANCE: the girl, 11 years old, with diagnosis Acute mieloblast leukemia, in extremely terminal condition (treatment has given complication to the lungs). She has asked mum a question just before thransferring to the reanimation branch (in 10 hours she died). Both the daughter and mum are christianities, and the daughter has come to belief before mum, and in many aspects showed her an example. Mum is the person with the great self-control, she was able to hold the original feelings and experiences latent from other people.

- (b) RESPONSE: " Yes, I promise, - if you die, we'll sure make, as you ask".

- (c) JUDGMENT: All in all - the answer is undoubtedly correct. The question of the girl shows, that she had already holded an idea on her own death under the control, and dissuasion her from thinking about it means to reject her back in throwings and uncontrollable fear. The question is very confidential and sincere and not answering it so sincerely would mean to deceive expectations of the girl. Moreover, in a question it is possible to see desire of the child to calm mum a little, to help her to deduce on a verbal level an idea on possible losses of the daughter. We'll notice, that mum in the answer also supports a daughter, speaking about her death not like about the decided fact, but like one of possible outcomes.

- (d) SUGGESTION: Probably, the only thing that would be possible to add to such answer is a little more to strengthen of idea, that the fast death - not unique possible outcome (as in classical understanding this situation was not terminal - were chances to deduce the girl from crisis) and to try to mobilize even more strongly forces of the child to struggle against illness: "Yes, I promise; we'll surely do as you ask, if you die. But let us do not bury you before time, all right? And you promise me, that now you'll make everything for not to leave me?.. " (However, probably, conversation has taken place just so, we know about a situation under the story of mum right after death of her daughter, and, naturally, we did not ask her in details about conversation...)

* * * * * * *

- (a) STATEMENT: " I shall not take a medicine, today I shall die all the same".

CIRCUMSTANCE: the boy, 10 years old, the patient of a hospice (St. Petersburg, Russia) with the diagnosis a cancer of IV degree in a terminal phase. Words about refusal to accept a medicine have been told by him to the medical nurse. She, without giving any answer, has left chamber, & has approached to the psychologist who has come to branch at this time, and has asked to talk to the child. She has answered a question of the psychologist how affairs actually are: " Yes, he is going to die ".

- (b) RESPONSE: The psychologist came into a chamber, sat near a bed of the boy and has asked: "Can I help you somehow? " The child has answered: "Yes. Tell me a fairy tale". The psychologist started to compose on the move a fairy tale, and was telling it till he has not noticed, that the boy has died.

- (c) JUDGMENT: the psychologist told, that after having a look on the boy, he has understood: it is not capable and not in the right of anything to inspire or impose to this child whom all perfectly knows about his own condition. Therefore he has asked, from his point of view, the unique question: whether there is something what he, the healthy adult person, could help the dying boy. And when he found out the desire of the child, he needed to execute it. It is necessary to tell, that after that case the given psychologist began to write " therapeutic fairy tales " for hard sick children.

- (d) SUGGESTION: Undoubtedly, it was the wise and correct reciprocal decision. We do not know, what was that fairy tale composed in that situation. We believe, that it didn't bear in itself edification and did not speak that everyone will be corrected also all will be good... The emphasis was done on another - that fairy tale was kind and sad, and also contained a plenty of unexpected adventures.

* * * * * * *

Sincerely yours,
Eugene & Marina Novitsky