HOW TO RECEIVE CHILDREN’S PALLIATIVE CARE SERVICES?
Palliative care combines pain and other symptom relief, and assessment of psychological, social and spiritual needs to enable the sick child to feel as comfortable as possible. The goal of palliative care is to help the child to use his or her physical abilities to the best of their ability, to make them feel as well as possible, to listen to their wishes and to help them be surrounded by people he/she loves.
Children up to 24 years of age and their family members can receive palliative care services for various life-limiting and life-threatening illnesses.
HOW TO BE ELIGIBLE FOR PALLIATIVE CARE?
Children are admitted to palliative care by a medical panel. A decision on palliative care is made after assessing the child’s diagnosis, progress of the disease, treatment outcomes and prognosis. It is highly personalised, patient-centred care that does not depend solely on the diagnosis. One child needs it from birth, another with the same diagnosis may not need it for many years. The medical panel also discusses where the palliative care services should be provided, which should be as close as possible to the family’s home – at home, in a long-term social care facility or in a hospital.
If the patient’s legal representative is not present at the panel, the attending physician shall inform the patient’s legal representative of the panel’s decision. If the legal representative agrees to receive palliative care services, the palliative care team’s doctor will inform the patient’s legal representative about the possibility to receive palliative care services at home and how to receive them.
WHAT ILLNESSES ARE ADMITTED TO PALLIATIVE CARE?
Children up to 18 years of age and their family members can receive palliative care services for various life-limiting and life-threatening illnesses. Groups of life-limiting and life-threatening illnesses in children’s palliative care:
Group 1 – a life-threatening condition where treatment is possible but may not be successful, and palliative care may be needed alongside curative measures. For example: oncological diseases;
Group 2 – diseases where long-term, intensive treatment is possible to prolong the child’s life by allowing them to participate in normal childhood activities, but premature death is still a possibility. For example: cystic fibrosis;
Group 3 – a progressive condition (one that is getting worse) with no cure. Treatment is purely palliative and can usually last for many years. For example: Batten disease, mucopolysaccharidosis;
Group 4 – an irreversible but non-progressive condition in diseases with severe neurological symptoms that can deteriorate unpredictably, leading to complications and the possibility of premature death. For example: conditions following severe brain and spinal cord injuries, including children with severe cerebral palsy.
WHO PROVIDES CHILDREN’S PALLIATIVE CARE SERVICES?
In line with the World Health Organization’s recommendations and the specificities of children’s palliative care, services are provided by an interdisciplinary children’s palliative care team comprising the following specialists:
Doctor – counsels the child and his/her family, both in the hospital and at home; deals with the symptoms of the child’s illness and provides treatment;
Nurse – performs medical manipulations, counsels and educates the patient and his/her family members on children’s palliative care issues, trains the family in the proper use of the necessary medical equipment, advises on feeding the child and the use of prescribed medications;
Psychologist and/or psychotherapist – provides psychological support to the family, performs individual and family counselling; organises and runs support groups. Helps the child and his/her family to understand the situation, calls attention to emotions and feelings; solves problems related to the crisis in the family; helps the family to discuss issues related to the death of the child and provides support after the death of the child;
Chaplain – spiritual care provider who in children’s palliative care identifies the spiritual values, beliefs and expressions of faith of the patient and his/her family, helps the family to develop an understanding of how their faith, values and beliefs function in the context of the child’s illness and the family’s crisis. Provides professional spiritual care to help the child and his/her family survive in a time of change and crisis. Provides spiritual care to the family at the time of the child’s death and in grieving;
Social worker – provides professional psychosocial support to the family throughout the child’s illness and helps with reintegration issues after the child’s death.
The interdisciplinary children’s palliative care team aims to provide complex, comprehensive palliative care focused on children with limited life expectancy and their families, and to provide palliative care for as long as necessary, based on the clinical assessment and the family’s choice. The interdisciplinary children’s palliative care team works on the principles of teamwork, assessing each clinical case individually and developing a personalised care plan for the family. Children’s palliative care services are always the family’s choice.
Link to Specialists
DOES ACCEPTING PALLIATIVE CARE MEAN THAT OUR FAMILY HAS REFUSED TREATMENT OF OUR CHILD’S ILLNESS?
No. Palliative care supports children of all ages and their families, at any stage of terminal illness. Palliative care aims to relieve the child’s pain and other symptoms caused by the disease and to provide emotional and other support for the whole family. Your child can start receiving palliative care from the time of diagnosis, alongside treatment.
HOW TO TELL IF YOUR CHILD OR FAMILY NEEDS PALLIATIVE CARE?
Children living with a terminal illness often experience physical and emotional distress due to their condition. Parents, siblings or other family members often experience emotional distress too. If a child has a genetic disease, cancer, neurological disorder, heart or lung disease or other serious illness, children’s palliative care can improve the quality of life of the child and his or her family by preventing and relieving pain and other symptoms of the illness, and by providing psychological and spiritual care for the family.
CAN MY CHILD STILL SEE HIS/HER GENERAL PRACTITIONER AFTER BEING REGISTERED WITH A PALLIATIVE CARE UNIT?
Yes. Your child does not need to change his/her general practitioner while in children’s palliative care. The palliative care team and your general practitioner will work together to help you choose and provide the best care for you and your child.
IS PALLIATIVE CARE A PAID SERVICE?
With the support of the Ministry of Welfare and the Ministry of Health of the Republic of Latvia, palliative care services for children are paid for by the state.