THE FIRST KALININGRAD CENTRE FOR CHILDREN'S PALLIATIVE CARE

What is palliative care?

Palliative care (lat.pallium – cover, coat)  is an approach in medical сare  focused on providing relief from the symptoms and stress of a serious illness. The goal of this approach is to improve the quality of life for the patients and their families facing the problem associated with life-threatening illness. 

«Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child's physical, psychological and social distress. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources.»

World Health Organisation, 1998, revised in 2012

Current situation in Kaliningrad region. Why do we need a palliative centre?

When a child is seriously ill for a long time it has a great impact on the whole family. Doctors at the local children's out-patient departments are confused. Medical care is focused on treating diseases but if the disease is uncurable the child is not taken to the hospital or hospitalized only to the intensive care units where parents are not allowed.
«Invisible children» is the name given to young palliative patients. The diseases are numerous - organic lesions, neurology, genetics, oncology, respiratory insufficiency and various diseases after injuries. These children and their families are all in the same situation, they are isolated, helpless, hopeless and ignored by the society and medical institutions.
There are more than 278 000 incurable children in Russia. 118 000 of them need specialized care but there is a great lack of professionals who can provide this care.   The State System of palliative care is currently being formed but the main role is still played by enthusiasts.
There are 4 children’s hospices in Russia, 2 more are under construction.  All of them have been created at the initiative of non-governmental organizations.
Kaliningrad region is the westernmost region of Russia, it is an exclave and for the moment it is one of a few regions in Russia which completely lacks the system of comprehensive palliative care for children.
Only recently, the regional official medical institutions have begun to form a database of young patients in need of palliative care. According to the independent experts from the Research Centre of Child and Adolescent Health of the Russian Academy of Medical Sciences and the specialists of the Charity Foundation "Children's palliative care" (Moscow) there are 1 066 children who need palliative care in Kaliningrad region, 448 of them need specialized palliative care.
The current health care system can not provide these children with truly effective assistance. Unfortunately, the indubitable right «to die with dignity» is not properly guaranteed. «The elements of palliative care for children» available today are ineffective, both in terms of the extent of medical aid and reach to the target group, and in terms of its quality.
 
 
Realizing and observing the failure of the medical community to create adequate conditions for supporting young palliative patients, the team of the charity centre «I believe in Miracle» together with the autonomous non-commercial organization «Project Parus» have started the project «Creation of the first Kaliningrad centre for children's palliative care».

Groups of children’s palliative care

  • Group 1. Children with terminal diseases.
  • Group 2. Children with chronic progressive and life-threatening diseases who are expected to have short lives and need constant palliative care.(eg, children in need of ALV).
  • Group 3. Children with life-threatening diseases and uncertain prognosis (eg. with the effects of traumatic brain injuries, congenital malformations etc.).

Main functions of the palliative centre:

  • to increase the availability of hospital care and improve medical care at home;
  • to carry out symptomatic treatment and select the necessary pain-relieving therapy;
  • to provide psycho-social support to patients and their families, to train families to take care of seriously-ill children.
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The palliative centre will consist of three units: mobile palliative care service with a twenty-four-hour call-centre and emergency hotline, a hospice for 15 beds with day and night care and a centre for family rehabilitation and adaptation.

It will be used as a clinical site for Research institutions, Higher and Non - University medical educational institutions and medical schools of Kaliningrad region.

Kaliningrad centre for children's palliative care will function as a charity private health care institution.

The construction of the centre is a very expensive project preliminary estimated at more than 4 million euros. This task cannot be performed by a single organization, but we strongly believe that we will find friends and enthusiasts who will help us make it happen, because these children, as well as all the others, want to live and they deserve to make the most of their lives.

 

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