So, whenever possible, Carneiro tries to get the baby out of the hospital and into the care at home. In Manuela’s case, the concern was to make sure the girl spent as much time with the whole family as possible – so that mom and dad could enjoy every minute with their daughter and say goodbye.

“At home, they will be able to have a healthy dynamic with more privacy and the presence of other family members. In the hospital environment, we cannot meet grandparents, aunts, friends,” he said.

Carneiro recalls that he was thrilled to receive a picture of the baby at home from Manuela’s mother.

“I really hoped she would stay in her little room. And when she got home, her mother sent us a picture. Manu was in bed with a pink blanket and a teddy bear.”

Carneiro said the entire medical team and the girl’s family were involved in the decision to release Manuela, realizing that there was no cure for the brain cancer she had been diagnosed with.

The girl had surgery and chemotherapy, but the type of tumor was very invasive. In search of a cure, parents sought feedback from a variety of professionals. However, the child, who was active at the beginning of the treatment and even sent kisses to people, did not communicate, did not move, did not even get out of bed. During and after the treatment, he was admitted to the hospital for a total of five months.

The father and mother did their best to work, travel to the hospital and stay with their daughter as long as possible. “They were very dedicated, current parents. They didn’t complain about being tired, although they could be tired,” Carneiro said.

The doctor says that when sending a terminal patient home and avoiding invasive interventions, the dilemma is that, in some cases, the child may live shorter days, although they will have better days as long as they live.

“This (death) could happen soon, because whether it likes it or not, there will be no team there for more aggressive intervention, intubation or quick treatment of the infectious condition.”

“But it is important to understand that the proposal should be quality in those few days and not necessarily longer.”

Carneiro noted, however, that in some cases additional intervention may shorten rather than prolong life.

“When you come up with a palliative care plan, some interventions are not offered which are considered futile. And these interventions sometimes cause a short-term consequence, the patient dies at the operating table.”

For Manuela’s parents, having their daughter at home meant the opportunity to play the role of a full-fledged father and mother. They again became the primary caregivers of the daughter.

“At the hospital, the routine is run by our doctors, the medicine is given by the medical team. After going home, the mother and father are able to return to the daughter’s routine and life plan, with reference to care. As they did at the time of her birth,” Carneiro recalled. Does.

“Getting back to this fullness of motherhood and fatherhood was very special.”

Manuela’s parents were at home for two weeks before she died.

The opportunity to say goodbye to a relative at home is still very rare in Brazil. Most of the children and adults infected with the curable disease die in the hospital. Some go through interventions that prolong life, not necessarily guaranteeing comfort or quality of life.

Cinara Carneiro highlights that a special team needs to design a care plan to make it possible for the patient to spend the last days out of the hospital. And, according to him, fear of many professionals prevents discharge.

The doctor said that this was due to the culture of hospitalization in the country. Bureaucracy and legal uncertainty make it difficult to access the right to die surrounded by family.

“The system is bureaucratic. It is very difficult for adults and children to die at home. And when there is death at home, the death certificate is complicated. A medical team has to go home and verify the death. Without it, there can be no body. Can go “, he said.

Therefore, he stressed, there needs to be a plan that involves various professionals and a doctor who is aware of the child’s medical record at the time of death and can guarantee the release of the patient’s body while he is at home.

“This doctor will know the child’s history and create a death certificate, because otherwise this child will move to an IML. In the moment of distress it will be a dynamic that will bring more pain. So, I have to make it. An action plan from hospital to residence. Which includes the moment of death. “

In the case of a personal health plan, the patient’s family needs to find a team of doctors who are willing to provide this type of care, where the home care (home hospital structure) and a home care doctor, aware that within a few days or months, the child’s death is being announced at home. .

“If you are a patient and you have a health plan, you need to have home care and have your home care doctor attached to you,” he said.

In a unified health system, this possibility is even more remote, as the doctor in the emergency care unit near the family home needs to be aware of the child’s medical record and in accordance with palliative care strategies.

“If you’re at SUS, you don’t die at home. Unless your health center works well. And there, you have to have a professional who is your reference, who knows you and who doesn’t run. But we know that health professionals perform. Is “, he said.

“And many of our recently graduated professionals are finally working. So, I understand that he feels insecure, and he needs us, who are specialized, to provide a complete plan and for that we should be trusted. So I need There may be a specialist, a palliative care worker, and finally a colleague who may be a primary health care physician or a home care physician attached to a care plan. “

Cinara Carneiro supports that SUS invests more in palliative care courses for primary care professionals, so that they feel less insecure about the option of dying at home.

“They need to begin to understand that this end of life, for the elderly or children, can be provided at home.”

He noted, however, that the patient’s family needed help and information to ensure that the last days of his life were as mild as possible and without physical pain.

“It’s not easy. In Manu’s case, we had to teach him to use opioids because he needed morphine. His parents taught him how to use a tube, because he was fed there and how to deal with symptoms like constipation. By morphine Created. ” The team also gave details to parents about the symptoms and behaviors that occur at the time of death, the doctor reported.

The girl’s doctor and family believe the effort was successful. Manuela’s mother has allowed BBC News Brazil to use the baby’s picture and tell her story.

“Unfortunately, it was not possible to cure Manuela, but we were able to lighten the process so that the family could stop this cycle. Farewell is always painful, it is not easy, but it is a process that involves a lot of love,” Cinara Carneiro concludes.

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