Symposium on paediatric palliative care held in Zagreb, Croatia

A day long symposium on children’s palliative car, the second of its kind, was recently held in Zagreb, Croatia on 7 October 2016. Organizers of the symposium were The Croatian Association of Palliative Medicine – Paediatric Palliative Care Section and The Croatian Paediatric Society, following the initiative of Prof. Anica Jušić, MD, Ph.D., founder of the Hospice Movement in Croatia and honorary president of the Croatian Association of Palliative Medicine. 

The 2nd Symposium on Paediatric Palliative Care was held under the patronage of President of Croatia Mrs Kolinda Grabar Kitarović, the Croatian Ministry of Health, the Croatian Ministry of Social Policy and Youth and the City of Zagreb – City Health Committee.

The symposium was attended by all interested parties dealing with the problems of treating seriously ill children and providing them with paediatric palliative care in their daily work. This included paediatricians, general practitioners, anaesthesiologists, nurses, psychologists, social workers, occupational therapists, etc. 

During the course of the symposium colleagues from neighbouring countries – Italy, Slovenia, Bosnia and Herzegovina and Slovakia shared with us their experiences in providing palliative care for children.

After the round table discussion The Zagreb Declaration of Paediatric Palliative Care was created. This declaration deals with possible models of paediatric palliative care organisations in Croatia and calls for serious commitment of all stakeholders.

The Zagreb Declaration of Paediatric Palliative Care
An English translation of the Zagreb Declaration of Paediatric Palliative Care reads as follows:

According to the World Health Organization’s definition, palliative care is an active comprehensive care for patients whose disease does not respond to any treatment procedures, aimed at maintaining the patient’s quality of life up to the moment of death.

Distinctive features of palliative care for children include provision from its earliest onset, when illness is diagnosed; parallel implementation of palliative procedures with curative medicine; unpredictability – children can experience a number of seemingly terminal phases; the impossibility of predicting the duration of both curative and palliative procedures. 

Paediatric palliative care is necessary under the following conditions:

• Conditions for which a treatment exists, but proves unsuccessful at times (e.g. malignant diseases)
• Conditions where a premature death occurs after a period of improvement (e.g. cystic fibrosis) 
• Continuously progressive conditions, sometimes from birth (e.g. mucopolysaccharidosis) 
• Irreversible, non-progressive conditions (e.g. following a severe brain trauma).

In the process of organising palliative care for children in the Republic of Croatia, we undertake to comply with the IMPaCCT minimal standards, which include:

1. Improving the quality of life of the child and his/her family. 
2. Cooperation of the affected family with the paediatric palliative program, which must be easily available and provide continuity. 
3. Initiation of palliative care immediately after diagnosis.
4. Implementation of palliative care procedures simultaneously with active medical treatment. 
5. Place of delivery of palliative care according to the wish of the child and the family – at home, in a day hospital, in a general hospital or hospice.
6. Continuity of various forms of palliative care.
7. Meeting the physical, psychological, emotional, social and spiritual needs of the child and the family.
8. The smallest-size team consisting of a physician, a nurse, a psychologist, a social worker and a spiritual adviser . 
9. The expert paediatric palliative care must be available 24 hours a day, 365 days per year. 

The prerequisites for achieving the set out general principles for the development of paediatric palliative care in Croatia are:

1. Cooperation between the Ministry of Health, Ministry of Social Policy and Youth, the Croatian Institute for Health Insurance, local government units, city governments, church and associations in order to harmonize palliative care for children throughout Croatia.
2. Inclusion of palliative care principles into every hospital / paediatric medical institution (allowing family and friends visits to the child, fewer and less invasive diagnostic and therapeutic procedures, oral therapy, pain control).
3. Development of palliative care for children by developing day hospitals in the place of residence of ill children and the provision of palliative care in the home of a child through multidisciplinary mobile teams.
4. Organized network of palliative care providers specifically trained to work with children, and the training of volunteers in children’s palliative care that should be legally defined.

Croatian Society for Palliative Medicine – Section of Paediatric Palliative Care
Croatian Paediatric Society CMA