The dilemmas of the pediatrician who takes care of terminally ill children

Emotional doctors and nurses said goodbye to Manuella, who, dressed in blue and pink with a bow on her head, was discharged from the hospital that day after months of hospitalization. A mixture of joy and sadness was drawn on the caregivers’ faces. It was a different high.

Manuella, 1 year and 8 months old, was going home to spend her last days, surrounded by her parents and grandparents. She would see her whole family, her little room and toys again before she died.

“The pediatric team was all there and the ICU staff went out to see her. Even those who were outside the hospital went there to take a picture with her and say goodbye. We were very emotional. her life, but it was also beautiful, because we knew she was leaving to be taken care of by her family”, told BBC News Brazil, pediatric intensive care specialist Cinara Carneiro, who took care of the baby while she was hospitalized in the ICU of Hospital Otoclínica, in Fortaleza.

Carneiro works with palliative care in the Unified Health System (SUS) and in a private hospital. She is dedicated to caring for children with serious illnesses or health conditions, who may not have long to live. The mission is to ensure that the child’s life span is the best it can be—that he or she receives individualized attention, affection, experiences, and pain.

Therefore, whenever possible, Carneiro tries to make it possible for the child to be discharged from the hospital and receive care at home. In Manuella’s case, the concern was to ensure that the girl lived as much as possible with the whole family — that the mother and father could enjoy every minute with their daughter and say goodbye.

“At home, they would be able to have a healthier dynamic, with more privacy and with the presence of other family members. In the hospital environment, we cannot receive visits from grandmothers, aunts, friends”, he says.

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

“I had great expectations that she would be in her little room. And when she got home, her mother sent us a picture. Manu was there on the bed, with a pink blanket and a teddy bear.”

Quality of life x more days of life

Carneiro says that the decision to discharge Manuella involved the entire medical team and the girl’s family, after realizing that there was no longer any treatment for the brain cancer she was facing.

The girl had surgery and chemotherapy, but the type of tumor was very aggressive. In search of a cure, the parents asked for opinions from different professionals. But the baby, who at the beginning of the treatment was active and even sent kisses to people, no longer communicated, did not move, did not even get out of bed. There were many trips to and from the hospital during treatment, totaling five months of hospitalization.

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, present parents, they never complained about being tired, even though they could be exhausted”, says Carneiro.

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

“It could happen (death) sooner, because like it or not, there won’t be a team there to do a more invasive intervention, intubation or rapid treatment of an infectious condition.”

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

Carneiro points out, however, that the excess of interventions in some cases can also end up shortening life, instead of prolonging it.

“When you come in with a palliative care plan, some interventions that are perceived as futile are not offered. And these interventions are sometimes the cause of a shorter end, with the patient dying on the operating table.”

‘Return to motherhood in its fullness’

For Manuella’s parents, having their daughter at home meant the opportunity to play the role of father and mother to the fullest. They became the daughter’s primary caregivers again.

“In the hospital, the routine is guided by us doctors, the medication is given by the medical team. After going home, the mother and father were able to return to being the reference in care, planning the routine and life of the daughter. , as they did when she was born”, remembers Carneiro.

“It was very special to see this return of motherhood and fatherhood in its fullness.”

The parents had two weeks at home with Manuella before she died.

The opportunity to say goodbye to a relative at home is still very rare in Brazil. The vast majority of children and adults with incurable diseases end up dying in hospitals. Some end up undergoing interventions that prolong life, without necessarily guaranteeing comfort or quality of life.

dilemmas and challenges

Cinara Carneiro highlights that a specialized team needs to design a care plan to make it possible for the patient to spend his last days outside the hospital. And, according to her, many professionals resist authorizing the discharge out of fear.

This is due, says the doctor, to the culture of hospitalization that prevails in the country. Bureaucracy and legal uncertainty also make it difficult to access the right to die surrounded by the family.

“The system is bureaucratic. Dying at home is very difficult for adults and children. And when death occurs at home, the death certificate is complex. A medical team has to go to the house to verify the death. Without this, the body cannot can be released and goes to the Legal Medical Institute”, he says.

Therefore, she emphasizes, it is necessary to have a plan that involves different professionals and a doctor who is aware of the child’s medical record to be activated at the time of death and guarantee the release of the body, if the patient is at home.

“This doctor will know the child’s history and will make the death certificate, because otherwise this child will go to an IML. In a moment of suffering, this would be a dynamic that would bring more pain. So, I have to have built it from the hospital to the domicile an action plan that includes the moment of death.”

In the case of a private health plan, the patient’s family needs to find a team of doctors willing to provide this type of care, with home care (hospital structure at home) and a home care doctor who is aware that, in a few days or months, he may have to declare the child’s death at home.

“If you are a patient and have a health plan, then you have to have home care and your my home care doctor has to be aligned with you”, he says.

In the Unified Health System, this possibility is more remote, because the doctor of the Emergency Care unit close to the family’s home has to be aware of the child’s medical record and in line with the palliative care strategy.

“But if you’re in the SUS, you can’t die at home. Unless you have your health center working well. And there, you have to have a reference professional of yours, who knows you, and he doesn’t rode. But we know that health professionals circulate”, he says.

“And we have a lot of recently graduated professionals working at the end. So, I understand that he feels insecure, and he needs us, who are specialized, to deliver a complete plan, and for him to trust us. So I need to have one specialist, a palliative care worker and a colleague at the end who can be the primary health care physician or the home care physician aligned with the care plan.”

Cinara Carneiro argues that the SUS should invest more in courses on palliative care for primary care professionals, so that they feel less insecure when faced with the option of dying at home.

“They have to start to understand that this end of life, whether for elderly patients or children, can be provided at home.”

She points out, however, that the patient’s family needs to receive support and information to ensure that the last days of his life occur as lightly as possible and without physical pain.

“It’s not simple. In Manu’s case, we had to teach her how to use the opioid, because she needed morphine. Her parents also learned how to use a tube, because she was fed there, and how to deal with symptoms such as constipation caused by morphine.” , reports the doctor, adding that the team also detailed the symptoms and behaviors that occur at the time of death to the parents.

The girl’s doctor and family believe the effort was worth it. Manuella’s mother authorized BBC News Brasil to use the baby’s photos and tell her story.

“Unfortunately, it was not possible to cure Manuella, but we managed to make this process lighter so that the family could close this cycle. Farewell is always painful, it is not easy, but it is also a process that involves a lot of love”, concludes Cinara Carneiro.