Palliative care for children – what it is Palliative care for children is a comprehensive support for a terminally ill child and his family, which includes physical, emotional,

Palliative care for children – what is it?

Palliative care for children is a comprehensive support for a terminally ill child and his family, which includes physical, emotional, social and spiritual components. In this section, relatives of a sick child or teenager will be able to find the most detailed information on each of these aspects, get expert advice, and share their own experience of overcoming difficulties and problems.

palliative care (from the verb "palliate" – to protect and facilitate) turns out to be when there is no rehabilitation potential and a cure is no longer possible. There is a myth that palliative care means giving up care, approaching the death of a child. Actually it is not. Yes, palliative care does not aim to artificially prolong the patient's life if this leads to a deterioration in the quality of life. But it is designed to prevent the appearance of new symptoms and improve the quality of life of seriously ill children and their parents during an incurable disease, at different stages of its progression. Palliative care is provided not only to children in the terminal stage of oncological diseases, but also to children with progressive genetic diseases, organic disorders and the consequences of severe injuries.

Palliative care helps a terminally ill child live as comfortably as possible while remaining a child: play, learn, communicate with peers.

According to the definition of the World Health Organization in 2002, palliative care for children is an active, comprehensive care for the child's body, mind and soul, as well as support for family members.

Assistance begins from the moment the diagnosis is established and continues throughout the entire period of the disease, including against the background of ongoing radical treatment. Caregivers should assess and alleviate the child's physical and psychological suffering and provide social support to the family.

Thus, palliative care was created to alleviate the state of health of both the child himself, who is suffering and pain from the progression of an incurable disease, and his parents and other relatives, including – healthy brothers and sisters who experience not only stress, but also psychological trauma both during illness and after separation.

The main principles of work of palliative care specialists are:

• relief of the child's pain and other symptoms of illness;

• emotional support and respect for the value system that has developed in the child's family;

• work in close conjunction with the attending physician;

• the ability to have an open dialogue with the child, parents and the attending physician regarding the adjustment of palliative care, according to their wishes.

The palliative care team for children includes:
• medical specialists (pediatricians, neurologists, oncologists, resuscitators, nutritionists, etc.), palliative care physicians;
• nurses and nurses;
• social workers;
• pharmacists;
• psychologists;
• priests;
• physiotherapists.

Where is palliative care provided?
Now in Russia, palliative care is provided in hospices, at home, in palliative departments and pain relief rooms of hospitals and polyclinics, at home – by mobile patronage teams.

Hospice is a free medical and social institution funded by the state budget and / or philanthropists, licensed for palliative care and work with medical narcotic painkillers. The hospice cooperates with social welfare authorities, public and religious organizations, may involve volunteers, as well as charitable foundations and organizations for help.

Hospice is.

• Medical, social, psychological, legal, spiritual assistance to the patient and his family members.
• High professional level and sincere qualities of employees.
• Help in overcoming fear and loneliness.
• The most complete use of the time remaining in the child's life.
• Spiritual support for a person of any religion.
• Teaching relatives how to care for a sick child.
• Psychological support for family members for an unlimited period of time.
• 24/7 contact with doctors and hospice staff, seven days a week.
• Continuous training of staff and volunteers.
• Help in the hospital and at home, by mobile teams.
• Access for relatives and friends 7 days a week, 24 hours a day.
• Hospice saves lives. There is no pain, dirt and humiliation. These are comfortable conditions and a decent life to the end.

Today there are not so many children's hospices in Russia yet, but the situation is changing for the better. Palliative care has been declared one of the priorities in the work of the Ministry of Health, both hospices and visiting patronage services, palliative care departments are opening throughout the country.

In Moscow, there is a visiting service for the children's hospice "House with Mayak", the construction of which is organized by the Vera Hospice Assistance Fund, the Podari Zhizn and Liniya Zhizni funds. The children's hospice in Kazan, built by the Anzhela Vavilova Foundation, is actively working. Since 2003, a children's hospice has been operating in St. Petersburg.

Palliative care at home is a huge step forward towards improving the quality of life of children and their parents. When providing home care, doctors, nurses, volunteers and social workers come to the child, conduct regular check-ups and provide consultations, specialists teach relatives home care skills.This allows you to be at home even to children with artificial ventilation devices. Regular examinations of children at home and professional counseling are absolutely free to carry out departure brigades of palliative care.

If your family has an incurable sick child, we advise you to seek help or advice to the nearest hospice. There you have to provide post assistance and support, give recommendations for care for the patient, answer your questions.