In one of the consultations that marked her professional journey, clinical psychologist and grief specialist Ana Clara Bastos , PhD, worked with a child with advanced cancer who demonstrated great concern not for her own death but for her mother’s suffering. During conversations, the girl said she had to appear strong to protect the family.

“She even told me, ‘What will crying solve? So I stay happy so my mother will be OK,’” the psychologist recalled. The situation illustrates a frequent paradox in serious illness: even when patients perceive the gravity of their condition, the topic of death often remains unspoken.

Similar stories appear across different care settings. In another account, a patient with advanced cancer summed up the experience of living with a potentially fatal disease bluntly: “We all know we’re going to die, but it’s different when you have the ticket in your hand waiting to be called,” recalled nurse Ana Cláudia Mesquita Garcia , PhD, a professor at the School of Nursing at the Federal University of Alfenas, Minas Gerais, Brazil. She has postdoctoral training from the Botucatu School of Medicine, São Paulo State University, Botucatu, Brazil.

Even amid an aging population and rising prevalence of chronic disease, talking about death remains taboo in Brazil — for patients, families, and health professionals as well. That silence is not only cultural; it also influences important medical decisions at the end of life, from the use of aggressive treatments to the difficulty of discussing limits of therapy and advance care planning.

The Palliative Care Manual, developed under PROADI-SUS — a federal initiative that supports Brazil’s public health system, known as the Unified Health System — in partnership with other entities, notes that limited availability of this approach in the country is associated with increased dysthanasia and therapeutic obstinacy, and contributes to overcrowding in ICUs and emergency services.

“When we think about death, we’re talking about a major cultural taboo,” said Bastos, who is also the author of the recently published books Na iminência da morte: Vivência de cuidados paliativos na oncologia pediátrica (On the Brink of Death: Experiences of Palliative Care in Pediatric Oncology) and Lutos não reconhecidos na infância e na adolescência (Unrecognized Grief in Childhood and Adolescence). “We are trained to cure, to save, and death ends up being seen as failure. Talking about it means admitting vulnerability, something our culture tends to avoid.”

That silence appears at different levels. Often the patient senses that the disease is advancing, but the subject is never addressed directly. Professionals, for their part, may hesitate to start conversations about prognosis or limits of treatment for fear of destroying patients’ or families’ hopes or causing suffering.

Bastos recalls a patient who clearly perceived his condition was worsening yet the team had never had a frank conversation with him about his prognosis. “He told me, ‘I know I’m getting worse, but no one tells me what’s happening,’” she said. “Sometimes the silence can be more distressing than the bad news itself.”

This difficulty also appears in the scientific literature. A Brazilian study that analyzed physicians’ perceptions when working with terminal patients found that, in the hospital environment, death is often treated within a technocratic logic — as something to be fought at all costs — which helps explain the difficulty of integrating palliative care into clinical practice.

Pact of Silence

According to psychologist and University of São Paulo professor Érika Arantes de Oliveira-Cardoso, who is affiliated with the graduate program in psychology at the Faculty of Philosophy, Sciences and Letters at Ribeirão Preto , Brazil, this “pact of silence” can have profound consequences for the caregiving relationship.

“When the prognosis is not discussed openly, the patient loses the ability to choose how they want to live at the end of life,” she said. According to Oliveira-Cardoso, patients often sense that something is wrong even when the team avoids the subject. “People feel the disease is getting worse. When they realize important information is being withheld, trust in the healthcare team can break down.”

Silence Shapes Decisions

The absence of dialogue about the end of life can also affect clinical decisions. In many cases, discussions about care preferences occur only in critical moments, when patients and families are already emotionally overwhelmed.

For Garcia, this can lead to rushed choices that are misaligned with the patient’s values. “Decisions about end-of-life care are a process that needs time,” she said. “If these conversations happen only when the situation is already very serious, decisions end up being hastier.”

She often uses a simple analogy to explain the problem: planning end-of-life decisions is like organizing a party — when there is time to prepare, you can reflect and make calm choices; when everything must be decided in a few days, there’s a greater chance of forgetting important aspects or acting on impulse.

This scenario is aggravated by a common misconception: the association between palliative care with therapeutic abandonment. In practice, this approach aims to improve the quality of life for patients and families facing serious illness through symptom control and psychological, social, and spiritual support.

National and international guidelines also point out that palliative care should be integrated into treatment from the diagnosis of a life-threatening disease, not only in the final phase. There is no specific moment or prognostic threshold for offering this approach, and it can be used simultaneously with curative treatments.

International estimates also indicate that about 80% of people with life-threatening illnesses have limited access even to basic pain-control interventions, highlighting the global gap in palliative care.

In addition, although many patients prefer to die at home, a large portion of them spend their final moments in hospitals, often undergoing aggressive end-of-life interventions.

Hope Isn’t Denial

One reason doctors avoid these conversations is fear of taking away a patient’s hope. However, discussing life’s finitude does not necessarily eliminate hope — it can actually transform it. “When we talk about the possibility of death, we’re not removing hope; we’re changing the focus. Hope shifts from surviving at all costs to living with meaning and dignity for the time that remains,” said Bastos.

This shift in perspective is central to the philosophy of palliative care, which emphasizes relieving suffering and respecting patient choices. Transparent conversations can allow for farewells, decisions about place of care, and organizing family life.

Bastos recalls a patient who, after an honest conversation about prognosis, decided to go home. “She said she wanted to spend her last days near her grandson and her dog. That completely changed the family’s atmosphere. Talking about death didn’t remove hope; it gave direction.”

From a psychological point of view, this process can also influence how families experience grief. According to Oliveira-Cardoso, when the disease’s progression is discussed openly, patients and families can begin what is called anticipatory grief — an emotional preparation for the loss.

“When this communication doesn’t happen and death appears abruptly, the suffering can be greater,” she said.

Culture Shapes Care

Although discussion often focuses on health professionals, specialists say the difficulty in talking about death reflects a broader cultural phenomenon. “How we deal with death is deeply linked to our culture,” Garcia said. “In Western society, death is often seen as an interruption, something that shouldn’t happen. That generates fear and silence.”

That perspective also affects the training of healthcare professionals. According to the researcher, healthcare programs typically prepare doctors, nurses, and others primarily to treat disease and preserve the body but provide little training to deal with the human dimension of end-of-life care.

“The professional graduate university prepared to care for the body but poorly prepared to care for the person,” she said.

Caregivers’ Hidden Burden

Professionals working in end-of-life contexts also report frustration, a sense of failure and emotional suffering when dealing with patients’ deaths. These hardships appear frequently. Bastos observes that doctors, psychologists, and other team members cope not only with patients’ and families’ grief but also with their own losses, often without institutional recognition and without legitimate space to process those losses.

She said that, faced with death as failure, the team may resort to defensive mechanisms such as routinized care, emotional distancing, and turning the patient into “just another bed,” clearly compromising the quality of care.

For many, however, discussing death more openly can have a paradoxical effect: It can help people live better. Palliative physician Ana Claudia Quintana Arantes, author of Death Is a Day Worth Living, has become one of the most prominent voices in Brazil arguing for a less defensive approach to finitude. In the book, the physician explains that recognizing death as part of life does not diminish existence and can restore meaning and priority to what can still be lived.

By bringing death back to the center of health conversations, specialists believe it is possible to improve not only the quality of medical care but also how patients and families face the final phase of life. “Talking about death does not hasten death,” Bastos concluded. “And it can completely transform the way life is lived until the very last moment.”

For Oliveira-Cardoso, expanding this capacity for dialogue requires changes that go beyond individual practice. “We still talk very little about death in society and in the training of health professionals,” she said. “When this topic is not discussed openly, both patients and families may lose the opportunity to participate in important decisions about their own care.”

In this context, specialists point out that one of the main challenges is not technological but communicational. Developing skills to discuss prognosis, listen to patients’ values and lead shared decision-making is likely to become increasingly important in a health system marked by an aging population and rising prevalence of chronic disease.

This story was translated from Medscape’s Portuguese edition.