Celebrating its 20th anniversary The Children’s Palliative Care Society (The Society) has started to work on establishment of the multi-functional palliative care centre for children – “Bridges of dreams” project – by involving society, businesses and other interested parties to support the initiative with financial and material donations, as well as by providing intellectual resources. The centre has been given name of the song of the famous Latvian singer Mārtiņš Freimanis – “Bridges of dreams” (“Sapņu tilti”). Anda Jansone, chairman of The Society board says: “Establishing of the centre we hope to build bridges of dreams to joyful, qualitative and wholesome life, despite limitations imposed by health condition”.
“The first task is to identify a land plot suitable for building, ideally – not far from Riga. Therefore we welcome land owners to contact us and get involved,” invites Anda Jansone.
There are 600-700 children with incurable diseases and/or limited life expectancy in Latvia. Children mostly suffer from neurological, genetic and oncological diseases. The fact that it is not possible to heal the child doesn’t mean it cannot be helped. Regardless of the health condition, all children have similar needs: to grow in family, to be loved, to play, be joyful and live as wholesome life as possible.
Caring for incurably ill child takes parents’ 24-hour attention. Often, only one parent is taking daily care of a child, resulting in limited options of employment and social life. Parents being in patronage of The Society reveal that often enough The Society organised events are the only occasions during a year when they can get out of home and have some time for themselves.
Finding a caretaker with the necessary skills is problematic task. The children have special needs: not everyone is able to change gastrostoma or take care of traheostoma, care for child constantly being in a lying position or child that doesn’t talk. Needs of the rest family members often become secondary in the family with incurably ill child.
Although, children receiving palliative care can live for quite long time, parents can face reality of death. Psychologic, spiritual, social and medical support at the last phase of child’s life, at death and through mourning would significantly ease the period of loss for the family. It needs to be mentioned that there are not enough of qualified children’s palliative care specialists in Latvia.
The above mentioned is reason to begin work of establishing “Bridges of dreams”. “First of all, it would be a day-care centre. Currently in Latvia such institutions are available only for children with mental health disorders, but not palliative care patients.
The centre would also offer terminated care service – parents could use it for up to 28 days a year to have a vacation. The rooms would have all necessary equipment, like chair lifts, but this would not be a hospital,” Anna Jansone explains. In the UK, for example, such centres are called “homes”. Anna’s home, George’s home, John’s home and so on. Instead of hospital wards, there are rooms with exit to garden, instead of corridors – playgrounds, instead of cold day-light lamps – natural light.
“We wish that experience children would take away from the time spent at the centre would be games and activities.” It would also be shelter for families going through severe suffering and needing recovery; a community with option to meet people with similar experience and to keep contacts.
If parents want to have a rest, but still be besides a child, they can stay in the hotel for family members. The centre will also provide psychologic and spiritual support not only to children, but also to their relatives.
There will also be a psycho-social rehabilitation for children: art and music therapy, physiotherapy, psychotherapy, sensor room, water procedures. The main aim is to ensure wholesome and qualitative life for children and their families.
To accomplish the initiative, competences need to be enhanced, as well as new palliative care specialists educated. Therefore “Bridges of dreams” will also facilitate a training centre.
The centre will provide life’s ending or hospice service, which includes specialists’ support at time of death and during mourning period. Cold room also called a farewell room with special cold bed where a deceased child can lie for several days provide opportunity for relatives to properly say good-bye. Psychologic, spiritual and social support is needed not only when child has passed away but also when he/she is approaching the end of life. We want to establish inter-confessional chapel and memorial, for example – it could be a garden within the centre, a photo wall in the chapel or stones with engraved children’s names.
Currently there are no centres of a similar kind in Latvia or the Baltics. Building “Bridges of dreams” is not possible without support from society. Costs of the project can reach EUR 5 million, the project is planned to be carried out in stages and completed in 2023. It is possible to support the project by donating online or via transfer to The Society account:
Bērnu paliatīvās aprūpes biedrība, Reģ. Nr. 40008033071
We would be glad to receive intellectual support: project management, designing and so on. For more information please contact Anda Jansone via e-mail palliative.lv@gmail.