Children in palliative care: “The system is not aware that minors die”

Every Friday at eight in the afternoon, Inmaculada Márquez's anguish triggers.

A restlessness that lasts throughout the weekend until eight in the morning of the following Monday.

It is the longest period of time in which her 12-year-old daughter, who is in home confinement and requires pediatric palliative care, does not receive that care.

She, along with the parents of the other 36 children who are in the same situation in the province of Seville, have organized to demand that the Andalusian Government extend this service 24 hours a day, every day of the week.

Now they receive this assistance in person from Monday to Friday from 8 a.m. to 3 p.m. and then, until 8 p.m., there is an on-call shift.

This benefit, essential to guarantee the quality of life of minors with rare diseases that have no cure, is offered unequally in Andalusia and in the rest of Spanish territory.

While the Ministry of Health finalizes the review of the strategy that was launched in 2014, the Spanish Society of Pediatric Palliative Care (PedPal) is demanding more resources and greater homogenization of this care.

The room of Sara, Inmaculada's daughter, is a miniature hospital.

She has cerebral palsy and Peters syndrome.

She does not see and the severe epilepsies she suffers from cause increasingly severe neurological damage.

Her breathing difficulties force her to be permanently connected to an oxygen machine.

Her room is monitored by cameras and any change in her breathing disturbs her mother's sleep.

“She entered palliative care in 2016, at the age of six, just when the Virgen del Rocío Hospital unit opened.

She is the oldest patient.

That changed our lives,” she explains.

They went from wandering from specialist to specialist to having one of the team's pediatricians coordinate all of them.

“Hospital visits were reduced,” she notes.

“We try to ensure that all children have a responsible doctor who knows the clinical history, coordinates with the rest of the doctors and organizes everything for the parents,” says Eduardo Quiroga, children's oncologist and head of the hospital's pediatric palliative care unit. Virgen del Rocío, who cares for Sara.

Her team knows perfectly well her situation and the causes of her crisis, which is why Inmaculada is calm at the time when she knows she can receive personalized attention for her daughter.

“In the mornings the visits are in person and in the afternoons if anything happens we can always call and they give us instructions on what we have to do,” she explains.

The fear comes at night and on weekends, when no one is on duty.

The professionals who come to your homes if there is a crisis do not know your condition, they are not specialists and they usually order your hospitalization.

"This solution, in addition to being complicated because the ambulances are not prepared for these children, who can barely go outside, is not the best because many are scared by the noise, they can catch infections and, above all, since they are not trained, they cannot They know their history or how to solve their crises.

However, when you call the team, they give you the treatment over the phone and when they arrive everything is more or less resolved,” explains Márquez.

“Our concern is during those hours when we have no one,” emphasizes Sara's mother.

That is why the parents of the 36 children in home hospitalization of the total of 120 cared for by the Virgen del Rocío unit have come together to demand that the Board extend this 24-hour assistance.

Last year it worked when they asked to extend the service from 15 to 20 hours, even if it was by telephone.

Now, through the

Children Also Leave campaign,

launched on change.org, they have already achieved almost 75,000 signatures of support.

"A child in a situation of advanced illness or when he is in his last days needs continued care and it must be a specialized team that cares for him and that is what the units that have a 24-hour service do, which are reachable with possibility of in-person care,” says Sergi Navarro, president of PedPal and head of the Palliative Care and Complex Chronic Patient service at the Sant Joan de Deu Hospital in Barcelona.

Catalonia, Madrid and Murcia are the only communities that have pediatric palliative care units with permanent care.

“The needs of children with home hospitalization should be covered all hours of the day,” explains Quiroga.

She knows what she's talking about.

Before promoting and leading her unit at Virgen del Rocío, she was on the palliative care team at the Niño Jesús Hospital in Madrid.

“A parent called you at 11 o'clock at night in San Sebastián de los Reyes and you went to see the child, preventing him from having to go to the hospital and be admitted, since all of this represents an increase in health expenses,” she explains.

“One of our great objectives is that we can cover this 24-hour assistance in Seville,” indicates the oncologist.

Children in a “very delicate” situation

“The system is not prepared or aware that children die and that is where we have to start.

There are children who die and must be cared for, not all of them are cured, and those who are not cured must be cared for, it is a problem of awareness,” says Quiroga.

In Spain, according to the Spanish Association of Pediatrics, some 25,000 children are candidates to receive pediatric palliative care.

In the case of minors, 80% are patients with rare diseases that have no cure and lead to a serious situation that becomes chronic and can live more than 15 years.

That is why they need home hospitalization and specialized medical care.

“These children must be taken care of and given the best possible attention,” Quiroga emphasizes.

They are extremely fragile minors who require constant attention from their parents and multidisciplinary care from the pediatric palliative care unit teams, made up of paediatricians, nurses, psychologists and social workers, although not all of them have with that endowment.

Andalusia has healthcare units in all its provinces, although their provision is unequal and in many cases insufficient.

An interlocutor from the Ministry of Health explains that work is being done on a pediatric palliative care network that supports these patients with the highest quality of care, extending the hours of care and guaranteeing 24/7 assistance, and that for this year It plans to size the provincial teams, ensuring that the teams are multidisciplinary.

Márquez and the rest of the parents in the same situation cannot wait for this network to be finalized: “This is about political will, about empathizing with us.

"Can't we get money to help children who are in a very delicate phase of their life, isn't it enough to have one more pediatrician?"

In some acute crises that Sara has suffered during the night, her mother, aware that she was not in a condition to be transferred to the hospital, has endured until eight in the morning to ensure the assistance of one of her pediatricians. equipment.

Gustavo was not that lucky.

He is a 17-year-old boy who appears in the video made by the parents' organization for the campaign that calls for expanding the service.

He died two weeks ago, after suffering a serious respiratory crisis on Sunday night.

His mother notified the ambulance and two hours later, seeing that she did not arrive and that she was not going to solve anything for her son either, she called again to stop him from coming.

She firmly believes that if a member of the Virgen del Rocío unit had been on the other end of the phone, her son's last days would have been different.

“You have to take good care of the moment of death because if not, the parents' grief will be completely pathological and long.

It is very important to coordinate the death of the child,” Quiroga emphasizes.

Only 20% of children who require palliative care receive it

Only between 15% or 20% of the 25,000 children in Spain who should receive pediatric palliative care access it.

Sergi Navarro, president of the Spanish Society of Pediatric Palliative Care (PedPal), points to two causes: “The lack of specialized units and the organization of care routes,” he explains.

The Ministry of Health approved a common strategy in 2014 but, as Navarro points out, “it has not been developed fully or uniformly throughout Spain.”

“It is impossible for each child to have a specialized team at their disposal, but communities must have a prepared system, organized with those care routes and that resolution capacity,” he adds.

Health sources explain that they are working on an operational plan based on the review of that strategy.

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