• The challenges of palliative medicine: the last will of a child
  • Childhood.Maite and a gift of death

Asunción Fillol and Manuel Rigal prepare the suitcase and hurry a coffee before starting the route. The team is finishing the first meeting in the morning, where the visit of about 60 children who will attend their homes is planned. And, at that time, it is inevitable that they wonder how they can work daily in contacts with such extreme and often painful situations.

Nobody wants to think that children die, but it is a reality. In Spain, 2,500 children under 20 years of age die each year and many of them require palliative care . In fact, experts estimate that 25,000 children would need this care in our country.

Every day, nurses, psychologists, doctors, social workers and other professionals care for children with incurable diseases and in extreme fragility.

But, contrary to what is thought, his work is centered on life, not death.

«How much?», They are usually asked. "How," is what they want to solve.

The first stop of the Fillol route - nurse - and Rigal - doctor - is at Lara's house. The five-year-old girl suffers from epileptic encephalopathy, a disease that causes crises that gradually diminish her motor and cognitive functions. "The children we serve have an incurable chronic disease and are very vulnerable," explains Rigal. "In many, their evolution would be a roller coaster: they suffer serious worsening that they overcome and then stabilize."

If in children with cancer, the median follow-up is around three months, in neurological and degenerative diseases it is two years. "It is very variable: there are children that last very little, but the patient of more evolution that we have started receiving palliative care with three years and now he is 11," Fillol recalls.

It is a medical taboo discipline that does an invisible task for most of society, but towards which all the outbreaks were diverted the day Xana died, the nine-year-old daughter of former soccer player Luis Enrique. After five months of attention in his own home, the athlete thanked in a tweet the signs of affection for his family and launched a souvenir for all the health personnel who attended, with a "special mention" to the palliative care team of Sant Hospital Joan de Deu from Barcelona.

"No one in his right mind becomes a pediatrician to devote himself to this," says Ricardo Martino, head of the Pediatric Palliative Care Unit of the Niño Jesús Hospital in Madrid, the first to combine home care with specific beds in the center itself. and to which Fillol and Rigal belong.

Lara just woke up. Your bedroom is the meeting point. The doctor asks how the night has passed and Pilar, his mother, is answering. Technical words dot the conversation, which runs in a very calm environment, full of respect, but not without some smiles. It shows that there is trust.

Lara has been at home palliative for a year and a half. Every time he suffered an epileptic decompensation he had to go to the hospital. A few months ago, for the first time, one of those crises was able to happen at home, with an infusion of an anticonvulsant that is usually used in the ICU.

"Everything has its advantages and disadvantages," says the mother. «Being at home helps the girl to be better, she is more comfortable surrounded by her things and we are very supported by the team. In times when she is well, they will even see her at school. But you also have bad times. Sometimes a feeling of great responsibility assails you. Especially when you are alone and begin to whistle the devices ».

In adults, palliatives are basically associated with cancer and the last months, weeks or days of life. "On the other hand, in children's units, most of the children we attend have neurological pathologies (acquired brain damage, malformative syndromes, rare diseases ...) irreversible," says Martino. This assistance in children is not restricted to the terminal and can last for years. «In palliatives we deal with life, not death. Death is a moment. It is the end » .

In palliatives we deal with life, not death. Death is a moment. Is the end

Throughout their lives, these children need support and care to perform activities such as eating, moving or breathing. "Think, for example, of a birth in which the child has lacked oxygen," says Martino. «It is in critical condition and moves forward. He goes to a special education college, but there comes a time when he reaches a roof and a decline appears. That child can die with 20 years, but during that time he needs care, he is totally dependent and with a high disability.

Pilar regrets that the unit is not completed with a home physiotherapist. “When I was admitted, I received daily respiratory physiotherapy sessions, but now that runs from our account. It is a shame, because the unit provides a great service, but this can cause families to give up home care for economic reasons ». Another figure that does not include the unit - but that is provided by the Because Viven Foundation (the name is full of intention) - is a "respite nurse". Four hours twice a month, a nursing professional stays with the child so that the caregiver can leave, or else supports an outing made by the whole family. Caregivers need those "breaths."

Fillol comments that among his functions, also those of the psychologist and social worker, is that of “detecting that the family is suffering from claudication and, although they have always been well behaved, there are circumstances, specific moments, in which they can begin to fail with the cares". In those cases, it is contemplated if it is convenient to enter the child. Do not forget that the care provided in the house is, sometimes, of hospital rank. Rigal alludes to the fact that with each family they have to "learn what we can delegate", because not all of them respond equally or have the same capabilities, not so much to put into practice care as food or breathing as of the available means. The parents are “unconditional caregivers and become experts in their child's illness,” says Fernández.

The emotional and economic impact for families is enormous, many of them with injuries to the health system, because they have gone through several specialists and have had to make therapeutic decisions. “Many of them and their families are hospital meat and for palliative the most important thing is to improve their lives, which means, for example, that they are at home, that they are not unnecessarily admitted to the hospital and that they have good controlled pain, ”says Martino.

The intent is always that the child is in his environment: with his toys, surrounded by his brothers, grandparents and attended by his parents

The newly opened room of the Infant Jesus has enabled seven beds to which small children from the entire community of Madrid can go. Unlike what exists in other hospitals, where palliative care patients may be in an oncology or neurology plant, in this unit children have their own room, the so-called Santa Monica. A team of seven doctors, seven nurses, two social workers, two psychologists, a pharmacist, an administrative assistant, a driver, all the nurses of the plant and "a little piece of spiritual reference" take turns to meet the needs of these patients 24 hours a day, 365 days a year.

“Hospital beds provide a benefit for certain children in whom techniques or skills are needed, for example, for pain control, who are only here. But what we try is not to bring children to attention, but to bring attention where they are, ”says Martino, who remembers that home care can be between ten and twenty times cheaper than a day in the hospital.

It also highlights Leticia Fernández, Nursing supervisor of the Unit. « The intent is always that the child is in his environment: with his toys, surrounded by his brothers, his grandparents and attended by his parents , who are great caregivers, with 24-hour support of the team via telephone, in addition to visits scheduled and urgent, whenever they are needed ».

These guardian angels also need to take care of themselves to face the psychological wear and tear of the very hard situations they experience daily from an emotional point of view. "The most important thing is to have life outside of work: friends, family, projects, because what sustains you is outside the workplace," says Martino.

«You have to know yourself and what your limitations are. Know that you need to rest, play sports ». One of the most difficult activities for the team is the interview with the family. "It is impossible for me to be hypoglycemic in that interview, because I know I could not give all the necessary attention," he says. "It is also necessary, at least for me, to have asked questions about your own death and your life, your religious or spiritual beliefs to better accompany children and their families."

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