Kazakh journalist Oksana Akulova investigated the "conspiracy of silence" surrounding death and dying in her 2024 documentary, Taboo?, shining a light on personal stories that often go unheard. This image from the movie is used with permission.
Embracing Conversations around Life’s Final Chapter
Gulnara Kunirova. Photo used with permission.
In Kazakhstan and elsewhere, conversations surrounding end-of-life and death are still uncomfortable, even an enduring social taboo. This silence can leave individuals facing terminal illness, and their loved ones, feeling isolated in their fears and struggles.
In my view, it’s not necessarily the topic of death that’s most frightening, but the suffering that can be associated with it. Palliative care can be an answer to this fear, offering dignity, compassion, support, and relief of suffering for patients and families.
Zukhra Sarmanova, a Kazakh death doula, says that speaking of death is avoided “partly due to religious beliefs and fear of the unknown.” Many people hesitate to interact with the ill, fearing the inevitable reminder of their own mortality.
A psychological journey
The experiences of individuals like Sergey Gridnev, a cancer patient, reflect the emotional and psychological journey of facing death. Sergey endured multiple surgeries and chemotherapy treatments, experiencing feelings of denial, fear, and depression. However, he ultimately found a way to live with gratitude, taking comfort in small, meaningful moments. He emphasized maintaining a positive outlook, even on his hardest days, finding ways to bring comfort to himself and those around him.
Amangeldy Karbayev, a hospice psychologist, underscores the importance of treating not just the body but the mind and spirit. Patients are encouraged to engage in creative activities, which help them to find purpose and live in the moment. “[It] uplifts their spirits,” Amangeldy says. The hospice environment imparts a sense of community, which can reduce fear and isolation.
Addressing fear, promoting dignity
Palliative care aims to improve the quality of life for those with serious illness, as well as those who require end-of-life care. It provides emotional, psychological, and spiritual support to address fears patients may have about suffering and being alone. When pain, fear, and isolation are reduced, terminal and life-limiting illness can become more bearable and dignified.
Ella, a widow whose husband suffered from multiple sclerosis, shares how love and daily rituals helped them cope. “We made it a rule to express our love every day, even on the hardest days.” Ella describes her husband’s resilience and ability to find joy in simple things as being profoundly impactful during his final years. Through shared moments, Ella was able to cherish the memory of her husband as a strong and loving individual, despite the challenges he faced.
Appreciating time that remains
The taboo prevents prevents individuals from discussing their fears and final wishes. Open dialogue allows individuals to prepare for death emotionally and spiritually. Conversations about death also encourage people to appreciate life and to find joy in the present moment.
After her diagnosis, Olga, a cancer survivor, seized each moment, finding peace in small pleasures, like a chocolate-making workshop that offered her comfort and a creative outlet.
As onco-psychologist Ilmira Khussainova emphasizes, our reluctance to talk about death stems from a lack of understanding, which amplifies fear. She encourages patients to take “small steps” in reclaiming their lives, urging them to pursue simple pleasures. To focus on living with their illness, not become defined by it.
Breaking the silence helps us, too
Addressing the silence around death also encourages health care providers to become more compassionate caregivers. By acknowledging and respecting end-of-life concerns and sharing the realities of terminal illness, we foster an environment where individuals can face death without fear of pain or abandonment.
I believe that palliative care offers solutions to our deepest fears, promoting a dignified and empathetic approach to death. Embracing conversations about death helps people appreciate life more fully and ensures that those nearing the end of life can do so with peace, dignity, and support.