At the ministry and municipal level, the idea of building a palliative care center for children has being discussed

On 16 July 2021, the Children’s Palliative Care Society and its partners (Dižvanagi association and Valmoniras farm) met Latvia’s Minister of Welfare Gatis Eglītis, Parliamentary Secretary for the Ministry of Welfare Evita Zālīte-Grosa, Parliamentary Secretary for the Ministry of Health Ilmārs Dūrītis, head of the Treatment Quality Division of the Ministry of Health Sanita Janka, head of the Social and Work Commission of the Parliament Andris Skridis, health and social consultant for the Latvian Association of Local and Regional Governments Ilze Rudzīte, chairman of the Ķekava Municipal Council Juris Žilko, his first deputy Agnese Geduševa, and second deputy Valts Variks, and head of the Ķekava Social Service Agnese Mence-Katkeviča, to jointly discuss how to work together and implement the idea of the ‘Sapņu tilti’ children’s palliative care centre that could become the first facility of its kind in the Baltics.

For more than 20 years, the Children’s Palliative Care Society has been providing assistance to seriously ill children and members of their families. Currently, the society supports 350 families with seriously ill children, and the number of such families grows every year. The service is available to families 24 hours a day, 7 days a week, 365 days a year: 24-hour assistance hotline (with consultations by a doctor, nurse, chaplain, social worker, therapist), out-patient consultations and home visits, organising support groups for the parents and siblings of ill children. This means that these children can live at home, instead of hospitals and care facilities.

Over the last 2.5 years, the children’s palliative care team carried out 12,938 home visits and consultations at the children’s palliative care service, provided 12,181 consultations by phone and 2592 online.

Everyday work in such close contact with the families crystallises their really urgent and important needs, and the necessity to work as a team and to grow.

‘The main purpose of creating the ‘Sapņu tilti’ children’s palliative care centre is to improve the quality of life of seriously ill children, to give their families breathing space, and to provide dignified end-of-life care to the children and their families, as well as a way to create memories. Caring for a seriously ill child requires its parents to provide attention 24 hours a day. Children are often brought up by one parent who, thus, have difficulty entering the job market and participating in social life, with a high risk of burn-out. Parents supported by the Children’s Palliative Care Society say that the events that the society organises are often the only times during the year that they can leave their home and devote some time to themselves. Finding someone with the right skills to look after such children is also difficult, because they has special needs: not everyone can replace a gastrostoma or manage a tracheostoma, or provide care to a child that is lying down or cannot speak. Also, in families with children that have special needs, the needs of healthy family members often become a last priority. There are 133 of children’s palliative care centres in Europe, known as hospices globally, and none exists in the Baltics. We sincerely hope that together, we can create the first one here, in Latvia,’ Anda Jansone, the pioneer of children’s palliative care in Latvia, said.

The children’s palliative care centre is to provide:

• day-care facility services;
• families with opportunities to take a break;
• rehabilitation to maintain the functional state;
• care during the child’s last days in an environment that approximates their home as much as possible;
• support groups for parents and siblings, including during the mourning period after the child’s death;
• an education centre for specialists in various fields.

Multiple rounds of discussions involving the Children’s Palliative Care Society and the specialists of the Ministries of Welfare and Health took place on 15 July 2021, as part of the conference ‘Tilti, kas vieno’ (‘Bridges that Unite Us’)* tiltivieno.lv, devoted to raising the questions of children’s palliative care, and all of the parties involved proposed that they meet to agree on the best solution for managing and improving children’s palliative care services in the future. On 16 July the society organised the meeting at the location that is to be the site of the future ‘Sapņu tilti’ multifunctional children’s palliative care centre, providing support and care for families with seriously ill children that are in a severe functional condition or have a limited life-span.

The following matters were discussed during the meeting:

• Cross-institutional cooperation in children’s palliative care as an integrated holistic care system whose infrastructure and services require development and funding (Ministry of Welfare, Ministry of Health, local governments, non-governmental organisations, private sector).
• Creation of a network of support centres for families with seriously ill children: what is each institution’s vision of the need for one?
• ‘Sapņu tilti’ as a joint project by different institutions intended to improve the assistance provided to the families and to develop the services that are missing: how can each of the institutions support this?
• Agreements on specific objectives and milestones in organising and improving children’s palliative care services.

During the meeting, all its participants acknowledged the need for continuing the work on the plan to create palliative care centres, the growing relevance of the topic of palliative care, and the need for a uniform system of assistance that involves the national and local governments, non-governmental organisations, parents and the general public.  There are plans to soon organise work groups for developing a coordinated short and long-term strategy for children’s palliative care, and to develop the idea of creating the ‘Sapņu tilti’ children’s palliative care centre.

The Children’s Palliative Care Society will hold its second ‘Tilti, kas vieno’* conference on 12 October 2021, to report on the progress of these affairs, and to urge the parties involved to joint the process.

* The event is financially supported by the Social Integration Fund, using funding allocated by the Latvian government. The Children’s Palliative Care Society is in charge of the content of the conference.