EACH Report : from Helsinki to Dublin - 2008 to 2010

Information?I am happy to welcome you all in Dublin for our 10th EACH Conference. In the name of EACH, I want to deeply thank Mary O’Connor and all the members of Children in Hospital- Ireland, for hosting this Conference.

We all know the amount of time, work, difficulties, that hosting a Conference represents and we are grateful to all of them, to have done it. We are here together in Dublin, to celebrate two important events:

  • the 40th anniversary of CHI - Children in Hospital Ireland, and
  • the perspective of a completely new children hospital to be built in Dublin.

It will be a short report two years after Helsinki and six months after the Committee meeting in Paris.

The work of EACH is a team work. Another part of the EACH report will be presented by :

  • Hanne Sieber who is our representative at the NGO group in Geneva
  • Giuliana Fillipazzi is our representative in HPH-CA : Task Force on Health Promotion for Children and Adolescents in Hospitals : Self-evaluation model and tool on the respect of Children’s Rights in Hospital
  • Margreet van Bergen will provide a presentation on her collaboration with Paul Kelingeld and the latest developments about our internet site : http://www.each-for-sick-children.org and I hope she will give you a few words on the great conference she organized in Rotterdam in December 2008, for the 30th anniversary of the association and to mark the end of her tenure with Kind en Ziekenhuis, the Dutch organization.
  • And to all these informations, we should add each national report by EACH members which have been provided to you.

I will focus this report on three points :

  • The consequences for EACH of the closing of EURONET which we belonged to
  • Our strategy, a theme we have largely discussed during the EACH committee meeting in Paris on November 7 & 8, 2009.
  • A difficult topic and one where EACH could position itself : restraint imposed on children to provide certain care and medical procedure (for diagnosis or treatment).

1- The EURONET closing

EURONET, which we belonged to, ceased its activities at the end of 2008, officially for financial reasons. It is also possible that the resignation for personal reasons of its very active coordinator, Mieke Schurmann, has precipitated this decision.

EURONET was an umbrella organization and most of its members were coming from the English speaking world and northern Europe.

The issue of sick children and/or hospitalized children were far away from their main concern. Yet, we had still managed to have the EACH Charter cited in their last annual report. We were hoping through EURONET to have access to members of the European Parliament in order to have our Charter become a European Text. This expectation is thus a disappointment and we were also able to see how difficult it is to sensitize European Parliament members to issues relating to children.

The question we are now facing is about the umbrella organization, sitting in Brussels and actively lobbying to European Parliament members that we chose to join. This question leads us to the issue of our strategy.

2- EACH strategy

We started this discussion during the committee meeting in Paris in November 2009. The question asked is What is the purpose of EACH today?. To this question, the answers varied but what was clear were the differences between the “old timer” associations of EACH, such as Switzerland, as an example, and the representatives of new countries from Eastern Europe, who have recently joined us. For them, being able to get the support of EACH and of the Charter is important and useful.

The older organizations feel the need to go further. But what does “going further” mean since we are a small organization with little resources, to lobby, for example.

Thus, the discussion must continue.

To different degres, we all suffer the consequences of the economic crisis: decreases in the hospital budgets, in care for children, insuffisant number of doctors and nurses, lack of specific pediatric training for GPs and nurses and for all the associations, an increase difficulty in finding funding opportunities for our actions.

To improve our discussion, we asked the following question:

what is, in your country, the main reason why the Charter principles are not respected (one answer only).

The answers were as follows :

Austria : Money

Belgium : Rentability

Czech Republic : Society choice

Finland : Attitude

Germany : Money

Great Britain : Training

Ireland : Money and inertia

Island : Nothing

Portugal : Professional culture

Sweden :Education, money

Switzerland : Deregulation, privatization

With these responses, participants underline 3 concerns :

  1. Money
  2. Education and training
  3. Society choice

This is not the role of EACH to solve the financial and economical problems…
But actions can be taken about the 2 other concerns : Education, training and Society choice.
The definition of our strategy should take into account the 2 other aspects:

Julia von Seiche from the German association AKIK, submitted to general discussion the following text :

“Care for a sick child is not only a health care issue.
It’s an overall issue for the entire society.
Therefore, all departments, authorities and those with responsibilities are in charge to ameliorate the situation of sick children, their families and caregivers.”

“EACH charter is a specific application of the UN-CRC”

“It pays to invest in children’s right and health.”

It seems to me that based on this, we should be able to define together a coherent, realistic and doable strategy.

Allow me a very personal comment:

  • Institutions, hospitals, NGO do a lot of writing : procedures, inquiries, advices, guidelines, quality assessment (those writing always start with : hospital should, doctors should, nurses should, states should… and at EACH, we also do the same.
  • I don’t pretend it is useless : I think it is necessary to do it
  • But maybe, it is worth to tackle now an important aspect which is rarely taken into account : the very personal qualities of professionals (doctors, nurses but also hospital administrators). I mean the way those people are recruted and selected. At present, nurses and doctors are selected and recruted only on academical and technical skills.
  • A well known French sociologist, Edgar Morin, wrote recently a long paper about the general situation of the crisis in Europe. In a short sentence he made, in my opinion, a very interesting proposal:
    Il faudrait également adopter et adapter une sorte de conception néoconfucéenne, dans les carrières d'administration publique et les professions comportant une mission civique (enseignants, médecins), c'est-à-dire promouvoir un mode de recrutement tenant compte des valeurs morales du candidat, de ses aptitudes à la « bienveillance » (attention à autrui), à la compassion, de son dévouement au bien public, de son souci de justice et d'équité.
    translated: “… It is equally necessary to adopt and adapt a neoconfusian conception concerning careers in public administration and civic professions (like doctors or teachers). In other words, to promote a recruitment process which takes into account the moral values of the candidate and his capacity for kindness (bienveillance) and attention to others , compassion, dedication to the public well-being and their concern for justice and equity…”   Edgar Morin.

We all know from our experience how important those personal qualities of professionals are in a pediatric ward. Of course some psychological courses can improve the skills, but it is not enough.
What I am proposing is to introduce this point in the definition of our strategy : The selection of candidates to caring professions (nurses, doctors) should occur before the training starts and should take into account the human and moral skills of the candidate.
This point is unlikely to gather public consensus. One can, in private, talk about human qualities and the abilities of such and such professional to listen, but the issue is rarely raised publicly.
Isn’t the role of EACH to make proposals considered « avant-garde » ? Remember the reactions we were receiving about 15 years ago when we were asking for parents to be allowed to spend the night with their sick child.
And more recently, the resistance we have been receiving when we mention the necessity to develop in maternity wards, as well as in neonatalogy and ICU wards the concept of « single-room care » where a space for the parents exists next to the child.
This brings me to Margreet’s proposal on restraint.

3 – Restraint for medical procedures and children rights

Restraint is still largely utilized for painful and/or non painful but anxiety creating care. This practice is generally denied, concealed ….

What are the justifications to these practices used by professionals ? What should we think of it ? What are the ways to avoid violent restraint by several adults for care when the child is refusing it ? Is this a topic for EACH?

I will answer these questions based on my professional experience.

The therapeutic care that bring professionals to use restraint are blood drawing, lumbar puncture, marrow puncture, dressing, suture, fracture reduction and some endoscopies.
These are painful gestures that surely bring anxiety to a child.
All children may be facing such a situation, whether in an emergency department (for example with fractures) or for the treatment or testing of a serious or benign disease.

Doctors who specialize in the treatment of pain fight daily to avoid restraint and it is most often possible to avoid it.

If many treatments or care are needed, the possibility of general anesthesia must be discussed for everything to be done at once: blood drawing, perfusion, puncture, endoscopie, etc. The ward thus must get organized around this issue, which is often very difficult to obtain.

But anesthesia is often unnecessary.

For each care, there is a technical possibility to not inflict pain and to avoid restraint.

  • EMLA* for blood drawing and puncture
  • MEOPA* (KALINOX*) for other gestures. This is a gaz mixture of oxygen and (N20) nitrogen protoxide that the child breathes into a mask. This mixture is also called “laughing gas” as it causes an ebriety sensation. The child is not asleep, he is conscious but in a sort of trance but he does not feel pain. The collaboration of the child is essential as he is the one who needs to hold the mask and it is fundamental to maintain contact with him during the entire procedure. All nurses and all doctors can be trained to this procedure as long as certain rules are respected such as maintaining oral contact with the child.

Aside from the technical possibilities, the most important is informing the child and preparing him.
Information is of course also for the parents.
A child who is well prepared and supported will most likely (but not always) agree to collaborate.
Play therapists know the ways to bring a child to accept uncomfortable gestures or gestures that bring anxiety. If the pediatric ward is lucky enough to have a play therapist, he/she will work in collaboration with the doctor and the nurse.
Otherwise it is up to the doctor, the nurse and the parents to find the little ways, the plays and the other ways needed to treat the child without imposing on him the violence of restraint.
One should never forget that a child who will have faced once a violent and incomprehensible restraint, will become extremeley suspicious of all the people providing care for him. The experience of a brutal restraint for a child will be printed in his/her memory all of his/her life and shall have negative consequences as he/she will need to be treated later on.

I am not here talking about true emergency situations where the life of a child is in danger and where time is of the essence and only the end result matters. But this kind of situation is in the end rare, even though many professionals invoke it to justify themselves.
Since some means exist, why do we continue to restraint children to treat them ? Why are these practices (and I can assure you based on my experience that these practices are found everywhere including the “good wards”) denied ?
Why, when professionals do acknowledge the existence of these practices, are they minimizing their consequences on children ?
Why are the technics previously described not used by everyone ?

Three answers :

  1. Time
  2. Money
  3. Lack of training for professionals and their lack of knowledge of the serious consequences these practices have on children.

 

When one wants to efficiently use EMLA or MEOPA, taking the time to explain and ease the anxiety of the child before a medical procedure is necessary. For instance, for EMLA to be efficient, one must wait 45 minutes after applying it.
In order to use MEOPA, trained and available professionals are needed.
In other words, the entire ward must be organized based on these necessities. In the current economic climate, the pressure of productivity and efficiency put on hospitals is not conductive to this kind of organization.
Forcing violently care on a child is faster thus more economical.
On the opposite, an organization that takes into consideration point 4 of the Charter “…. Steps should be taken to mitigate physical and emotional stress » is less performant in terms of time and requires the training of professionals, which requires in and of itself time and money. Thus, this is a true choice that pediatric wards have to make.
And this is where EACH can act.

Most of the professionals who practice forcible restraint when it is not medically necessary, often feel guilty but forced to do it. This practice is thus denied or minimized by professionals for this reason.
This is not against these professionals that EACH should act, but instead with these professionals, by demonstrating in what way hospital management, despite a public face in favor of children’s rights, is indeed forcing professionals to make the choice of violent restraint in order to maintain profitability.
And I would like to greatly thank Margreet van Bergen, for having brought up this topic.

 

Before I end this report, I would like to remind us of the three drawings by Pef about information provided to children. These drawings can be used by all of our organizations. To this day, only the Dutch organization has used them.

Information-1Information-214

 

Information for a child in hospital should be shared and not just given.

It needs a conversation in 3 parts :

  1. Ask and listen to find out what the child already knows. 
  2. Offer the information in age-appropriate words and be patient and ready to repeat. 
  3. Check to see what the child has understood.
 

The conclusion of this report shall be our discussion on all these topics and the resolution we shall adopt at the end of this conference.

Sylvie Rosenberg-Reiner - EACH - Coordinator

Dublin June 2010

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