Children with life-limiting illnesses may understand the seriousness of their condition more clearly than their parents realize. When families and healthcare teams avoid discussing prognosis, children may be left to process their fears alone. Pediatric palliative care specialists emphasized that honest, age-appropriate communication can reduce isolation, preserve trust, and support children and their families during end-of-life care.

Speaking with Medscape’s Portuguese edition, specialists discussed how clinicians can navigate these sensitive conversations, address parents’ concerns about disclosure, and support children’s emotional needs while respecting their developing autonomy.

Fabíola Castelo Branco Puty, MD, pediatric oncologist at the Hospital Oncológico Infantil Octávio Lobo in Belém, Brazi​l, has experienced the loss of a child from two perspectives: as a pediatric oncologist for more than 2 decades and as the mother of Henrique, who died at age 8. Henrique had cerebral palsy from an early age and later developed a serious brain tumor.

After the radiation therapy sessions, Henrique would lie in bed at home with a sad, distant expression, seemingly weary of the ordeal. “One early morning, as I lay very close to him, I told him he had the right to choose, that he didn’t have to endure the pain just to spare us, and that we would take care of the family. Less than 48 hours later, he passed away peacefully. He had no fever or acute complications; he was simply waiting for our permission to go,” Puty said.

Henrique’s story illustrates the burden of the so-called “pact of silence,” in which families and healthcare teams avoid discussing the severity of a child’s illness. Children and adolescents may recognize the disconnect between adults’ optimistic talk of a cure and their own physical exhaustion due to the disease. This incongruity can intensify feelings of isolation and anxiety in hospital settings. Even younger children, who may receive less information about their illness, can experience emotional distress comparable to that of older children because they pick up on their parents’ distress, experts say.

“A child with a serious illness is not facing the disease alone; the child must also cope with the loneliness that few people recognize.​ Suddenly, daily life changes, and the child spends weeks undergoing procedures. Some children notice that the adults are worried and hide their own feelings to avoid making them even sadder,” Puty said. “We must treat more than the disease; we must care for the childhood that continues to exist within the child.”

Family Communication

In Brazil, nearly 90% of pediatric palliative care services were established after 2010, according to a survey conducted by the Brazilian Network for Pediatric Palliative Care and coordinated by the Federal University of São Carlos. These services are concentrated in the southeastern region of Brazil (57.8%) and tertiary care hospitals (63.3%). Three out of four professionals devote only part of their working time to pediatric palliative care, while 40% of services report limited or no access to opioids for pain and symptom management.

When parents insist on withholding a child’s prognosis, even though the child appears to understand the seriousness of the illness, the healthcare team faces an ethical dilemma that extends beyond providing emotional support to the child.

A study published in Pediatric Blood & Cancer suggested that parents of children with advanced cancer often underestimate their children’s desire to receive information about their health. According to the specialists interviewed for this article, silence often reflects adults’ fears instead of the child’s needs.

Samantha Mucci, PhD, psychologist and associate professor from the Department of Psychiatry at the Paulista School of Medicine, Federal University of São Paulo in São Paulo, Brazil, and founder and general coordinator of the Grief Support Program in São Paulo, considers addressing the pact of silence with caregivers a necessary first step, provided the therapeutic relationship is preserved.

“The team must acknowledge the parents’ pain without endorsing false statements. We explain that hiding the truth does not spare the child from suffering; it only prevents the child from sharing their fears with the people they love most. The child already senses that something serious is happening. By prohibiting discussion, we leave the child alone with their most frightening imaginings,” Mucci said.

Building an alliance with parents is the first step toward supporting a child’s developing autonomy without disrupting care, added Larissa Madruga Monteiro, MD, neonatologist and pediatric palliative care specialist at Hospital Universitário Evangélico Mackenzie in Curitiba, Brazil.

“When a family insists on a pact of silence, the team must acknowledge their distress and understand that it comes from a desire to protect the child. We never go over the parents’ heads; we act as a bridge to show them that the child has a right to know the truth and that withholding information can increase the child’s suffering,” Monteiro said.

When dialogue fails and parents remain unwilling to discuss the illness, the ethical and legal limits of parental authority come into play. ​Ronaldo Fagundes, a lawyer specializing in medical and health law in Uberlândia, Minas Gerais, Brazil, noted that parental authority is not absolute.

“Parental authority allows parents to represent their children, but it exists to serve the child’s interests, not to give parents rights over the child. When parents make decisions on their children’s behalf, they have a legal duty of care,” he said.

Brazil’s Statute of the Child and Adolescent Law guarantees minors the right to have their views considered according to their developmental stage. Similarly, Article 74 of the Code of Medical Ethics protects the confidentiality of children and adolescents with sufficient discernment, including in relation to their parents, unless nondisclosure could cause direct harm. Article 41, paragraph 1, prohibits therapeutic obstinacy and requires consideration of the patient’s wishes. Recommendation No. 1/2016 of the Brazilian Federal Council of Medicine, concerning free and informed consent, also supports minor assent. Brazil’s Patient Rights Statute, Law No. 15,378/2026, establishes the right to information and provides mechanisms for patients to express their preferences for treatment.

When conflict cannot be resolved and parental refusal causes severe psychological distress or leads to futile treatment, guidance from the American Academy of Pediatrics, published in Pediatrics in 2017 and reaffirmed in 2023, recommends a stepwise approach to resolution. The process begins with multidisciplinary meetings and consultations with the institution’s bioethics committee. In extreme cases, Brazilian law allows for referral to the Guardianship Council or judicial mediation to protect the child’s best interests.

Age-Appropriate Communication

Communication should be tailored to the child’s neurocognitive development because understanding death as an abstract concept matures gradually. Juliana Tomé Garcia, a clinical psychologist and doctoral researcher in psychology at the Faculty of Philosophy, Sciences, and Letters at Ribeirão Preto, University of São Paulo, in Ribeirão Preto, Brazil, explained that children typically consolidate their understanding of death as irreversible, universal, and inevitable around the age of 10.

Language should reflect the child’s developmental stage. Between 3 and 5 years of age, magical and egocentric thinking predominates, and the greatest fears often involve separation and abandonment. Communication should be concrete, focus on symptoms, and provide clear reassurance that family members will be present. For example: “The medicine will help relieve your pain, and Mommy will stay right beside you.”

Between the ages of 6 and 9, children begin to understand biological causation but may associate illness with punishment for something they did in the past. Clinicians should explicitly address and dispel this sense of guilt, for example, by saying, “You are not sick because you misbehaved.”

By the age of 10 or 11, children generally have a more established understanding of death as a biological and irreversible process. At this stage, patients need honesty, clear explanations without euphemisms, and opportunities to participate in decisions about comfort and care, Mucci and Monteiro explained.

The specialists advised clinicians to avoid metaphors such as “becoming a star” or “going to sleep forever.” Associating death with sleep can trigger a severe fear of sleeping in young children, while describing death as a journey can provoke panic and separation anxiety whenever parents need to leave.

Spiritual and expressive approaches are also part of pediatric palliative care. A systematic review published in Palliative Medicine examined the experiences of families, children, and healthcare teams using music therapy in pediatric palliative care services. The review identified five consistent outcomes: emotional and physical relief, opportunities for normal experiences, support for child development despite illness, stronger family relationships, and the importance of the therapeutic relationship in determining the outcomes.

Evidence also supports other expressive approaches. A review of 17 studies, including 12 randomized clinical trials, found that art therapy, drawing, and rhythmic movement reduced anxiety and depressive symptoms, improved physiologic parameters, and increased coping behaviors in children with cancer. For clinicians who do not specialize in palliative care, these findings support considering such approaches in collaboration with a multidisciplinary team.

Difficult Questions

One of the most challenging situations arises when a child or adolescent asks a direct question at the bedside, such as “Am I going to die?” or “Has my medicine stopped working?” while a parent signals to the clinician not to answer the question.

The specialists recommended a three-step approach:

1. Acknowledge the question. Clinicians should respond promptly and validate children’s concerns. For example: “That is a very important question, and I will give it my full attention.”
2. Explore the concern. The clinician can ask, “Tell me what made you think about this now. What are you feeling in your body?” This gives the child an opportunity to explain their underlying concerns. “When a patient asks a direct question, they are rarely looking for a technical diagnosis. They want to know whether they will suffer, whether they will feel pain, or whether they will be alone,” Monteiro said.
3. Discuss next steps with the parents. The clinician can ask the child for permission to step outside briefly, explaining: “I’m going to talk to your mom out there for a minute about your tests, and I’ll be right back so we can continue.” Outside the room, the clinician should explain that the question came from the child, that withholding the truth may increase anxiety, and that the answer can be delivered in a supportive, developmentally appropriate manner.

Under pressure, clinicians should avoid three responses. The first is making false promises of a cure, such as, “You’re not going to die; that’s nonsense.” The second is providing definitive time frames for survival. The third, Mucci emphasized, is scolding a child for asking the question.

A study published in the journal Cancer found that most adolescents and young adults with serious illnesses considered accurate information about their prognosis to be essential. This preference became stronger as the treatment progressed. The findings also suggested that sensitive and honest discussions about prognosis could strengthen the clinician-patient relationship without causing harm.

“Teenagers need to regain control over their lives. They do their own research, pick up on the tone of adults’ voices, and feel betrayed when the staff and their parents keep things a secret,” Mucci said.

Advance Care

Advance care planning tools are increasingly used to support the autonomy of young patients. One example is Voicing My Choices, an advance care planning guide developed by researchers at the National Institutes of Health. Designed for adolescents and young adults with serious illnesses, the resource helps patients document their preferences in five areas: how they wish to be comforted; how they want to receive support; who should make decisions if they can no longer communicate; which life-sustaining interventions they would accept or wish to limit; and how they would like to be honored and remembered.

The final area can include preferences for spiritual rituals, music, clothing for a farewell, and handwritten messages to family members. Research published in Palliative & Supportive Care suggested that using this tool reduces anxiety and improves communication between patients and their families. Documenting this helps provide a meaningful channel of communication and helps guide the healthcare team without overwhelming young patients with bureaucratic language.

Medical Documentation

Thorough documentation in medical records is essential for legal protection, interprofessional coordination, and continuity of care. The Federal Council of Medicine (CFM) Resolution No. 1638/2002 defines medical records as a legal, confidential, and mandatory document that details the patient’s entire history and medical care, including documentation of the professionals involved and appropriate recordkeeping at the end of each shift.

In practice, clinicians should document who was present during conversations, what was communicated about the diagnosis and prognosis, what the child already knows, and the exact words used to convey information, Fagundes explained. Without this information, the next clinician on duty may provide contradictory messages and undermine the patient’s trust.

The family’s request to withhold information should be documented. The record should identify who made the request, the reasons given, the guidance provided by the healthcare team, and the clinical assessment of the minor’s capacity to provide informed consent. Fagundes noted that the Code of Medical Ethics permits the postponement of disclosure for a justified reason but prohibits making false statements to patients.

Advance directives require full legal capacity, as per the CFM Resolution No. 1995/2012. For minors, the corresponding document should be included in the medical record as an advance care plan developed jointly with parents and guided by the child’s expressed preferences. Such a plan can help the healthcare team avoid providing futile treatment.

Teams need alignment and measures to prevent professional burnout, alongside documentation. Emotional overload and insufficient ongoing training can contribute to moral distress among residents and nurses in pediatric palliative care, according to a review published in Children.

“Daily alignment meetings and support for healthcare professionals’ distress help prevent communication breakdowns at the bedside,” Monteiro said.

Meaningful Care

Conversations about the end of life take on their full meaning when the healthcare team helps families focus on the time they have together. Specialists described this as the central principle of pediatric palliative care. Providing palliative care does not mean talking only about death; it means helping children live the time they have left with quality and meaning.

“When we explain that there is no longer a curative treatment option, the focus shifts to the life the child still have to live. We ask the parents and the patient what matters to them: going for a walk, visiting the beach, seeing the family dog, or creating memories together. Moving the focus away from the end alone allows the child to spend their final days surrounded by affection, protection, and joy,” Monteiro said.

Creating memories and helping families come to terms with letting go are also important for preventing grief from becoming destructive. Children and adolescents may delay letting go because they feel responsible for their parents’ pain and suffering. According to Puty, receiving their family’s loving permission to stop enduring suffering for others can be a liberating act.

“It takes time for parents to let go. When we are able to tell our child that they don’t have to endure the pain for our sake and that we will be okay, we free the child from guilt. Death is a monumental event, and facing it with love, truth, and respect is what allows the patient to pass away in peace and the family to find the strength to move forward,” Puty concluded.

Daniela Barros is a Brazilian journalist specializing in social journalism at the Pontifical Catholic University of São Paulo in São Paulo and is a master’s student in the Department of Social Medicine at the Ribeirão Preto Medical School in Ribeirão Preto. She has been involved in medicine for 23 years and has contributed to several specialized publications.

This story was translated from Medscape’s Portuguese edition.