Which children can benefit from palliative care and how to get it

Translated from English, “palliate” means to protect and relieve pain when healing is not possible. This is the principle of palliative care: even if a person cannot be saved or cured, his life can still be changed for the better.

What is the meaning of palliative care?

• For maximum pain relief. This can be achieved with competent palliative care and professional care.
• In the psychological support of the patient – in constant readiness to hear and understand his condition, needs, fears and desires.
• To help relatives who around the clock care for a seriously ill child or adult.

Help with home visits

How does it work?

Parents of any seriously ill child from Moscow (even without registration) can call or come to the Children’s Outreach Palliative Service “Mercy”.

• The coordinator accepts the request.
• Several doctors visit the family at once.
• They examine the child and confirm his palliative status.
• Next, work begins.

“Once we received an appeal with a request to take the boy Andrey under guardianship,” says Natalia Benova, head of the children’s outreach service, palliative care physician. – We came to this family: an apartment in the center of Moscow, parents with higher education, the second child is healthy. Andrei is already 12 years old, and he has never received any qualified palliative care! The family simply did not know about this possibility, they only went to the clinic.

The boy has a severe form of cerebral palsy, severe scoliosis, he cannot chew, eats very poorly and chokes on water. Lying on a regular sofa, not a multifunctional bed. He does not have an anti-decubitus mattress, a special stroller in which he could sit comfortably both at home and on a walk. There is no back brace. There is no lift – the child is large and heavy, and the mother is thin and fragile.

When we began to tell parents what can be done for their child, they began to cry: “Why didn’t anyone tell us about this before ?!” Andrei was bought the necessary equipment, and a gastrostomy was installed for food. A psychologist and doctors regularly visit the boy, give him massages and exercise therapy.”

There are 27 specialists in the children’s mobile service: pediatricians and neurologists, nurses, nurses, exercise therapy instructors, psychologists, play therapists, and social work specialists. Assistance to families is provided free of charge.

“We have a ward Madina,” says Natalia Benova. – Her parents came to Moscow to work, they are citizens of another state, not Russia. They have three children. Madina is very small, she is three years old, she has severe brain damage, cerebral palsy, epilepsy. She can only lie on her own. No one in Moscow can help them, they can’t even get to a pediatrician for free. Parents had no idea what to do with Madina.

Our service helps people regardless of residence and registration, the main thing is that we can get to the person physically. Two of our doctors have chosen therapy for her, technical means of rehabilitation, and now she can sit. The sitting position makes it possible to more physiologically feed the baby. But a new difficulty arose: it turned out that Madina’s lips did not close, and this interfered with swallowing. We picked up special exercises and as a result taught my mother how to work with Madina.

Parents to note

What to do if the child is seriously ill? First of all, get the most detailed information about the disease from specialists, and not rely on the opinions of acquaintances and friends without medical education.

Children with such incurable diseases as mucopolysaccharidosis, epidermolysis bullosa, severe forms of cerebral palsy, SMA, Rett syndrome, Duchenne syndrome, vegetative state after drowning and TBI, with oncological and other diseases are assigned a palliative status. And after that, they are no longer provided with free rehabilitation from the state.

In our country, there is no system for managing such patients. And in a regular clinic, parents, as a rule, cannot be helped. Once under the care of the Mercy service, families can receive the necessary equipment and medical assistance.

Now 110 terminally ill children are being observed in the service, 30 from the regions of Russia. They receive psychological help online. The approach to each family is individual and depends on the wishes of the parents and the patient’s condition.

For example, if a child has a planned spinal surgery, then an exercise therapy instructor will visit the family more often. If the mother of the child is in difficult circumstances, the nurse will help the family more. If special equipment is needed, “Mercy” organizes a charitable fundraiser to purchase it.

Live long!

There are many cases when a child with a rare disease lives for decades, manages to finish school and realize himself as a person.

“Maxim was one of the very first patients of the Mercy Children’s Outreach Palliative Service,” says Natalia Benova, Head of the Children’s Outreach Service. – 10 years ago, his mother also did not know what to do with her child’s disability. Maxim’s diagnosis is SMA – spinal muscular atrophy. The intellect was preserved, but he suffered greatly physically.

A person with such a diagnosis gradually weakens his muscles, he stops walking, then he cannot use his hands, then he stops swallowing … Our therapy was aimed at ensuring that Maxim did not get worse. An exercise therapy instructor, a psychologist, a play therapist worked with him.

Now Maxim is 20 years old, he graduated from school, rides in a comfortable electric wheelchair, is a 5th year student at the State Pedagogical University at the Faculty of Academic Singing, gives concerts at famous venues, and sings with friends on the Arbat in his spare time. This story is not the only one, and it convincingly shows that with the proper quality of palliative care, children can live a long time!