Palliative Care: Simply Put Real Stories from Specialists #5

Palliative Care: Simply Put
Real Stories from Specialists

The Outcome is in the Trust.
The Story of Apay
A case report by palliative care mobile team nurse Sholpan Utebayeva, Kazakhstan

Palliative Care:
Simply Put
Real Stories from Specialists

The Outcome is in the Trust.
The Story of Apay
A case report by palliative care mobile team nurse Sholpan Utebayeva, Kazakhstan

Sometimes I hear people say: ‘How can you work in palliative care? There is no outcome there. Just constant death and suffering…’ At moments like that, I never argue. I simply reflect on the process itself, because that is where the meaning of our work lies. I have been in palliative care since 2013, and over this time, I have learned the most important lesson: you must never begin this process with medical procedures. First, you need to build trust.

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In the autumn of 2025, we took on the care of a 75-year-old woman with lung cancer. She was in severe spinal pain; as a result, she barely moved, because even the slightest change in body position caused her suffering. She was cared for by her two daughters, who were also at their emotional and physical wits' end. This was evident in everything: their tense postures and the sharp way they reacted to our questions.

The younger daughter met us warily and said from the doorway: ‘We’ve already done everything. Please don’t disturb her unless absolutely necessary.’ She did not want us to visit.

To a novice specialist, such a reaction might seem aggressive. But we know that behind these words lies fear. When a loved one suffers for a long time, relatives begin to fear everything: touch, injections, physical management. It seems better to do nothing at all, just to avoid causing any further pain.

I did not argue. At first, I simply observed: how the household was managed, how the family moved their mother, and what they feared. Then I began to calmly explain the basics: how to change her body position without pain, how to care for her skin, and why they shouldn't fear gentle care.

Gradually, trust grew between us. We adjusted the therapy, the pain became manageable, and apay*—which is how we affectionately address elderly care-receivers—began to sleep normally.

This case became a major success for our team. A woman who had previously refused to let anyone approach her was now looking forward to my visits. Peace returned to her home. When a person is clean, lying in a fresh bed, and free from pain, everything changes. Sometimes, as I was leaving, I would see her quietly drinking tea or eating broth.

Apay passed away shortly before the New Year. She died at home, surrounded by her daughters, without fear or pain.

In palliative care, we do not just help the patient; we help the family to live on after the loss, without a heavy sense of guilt, knowing they did everything possible. After apay's death, her daughters called me and asked, ‘Did we do everything right? Did mum hold any resentment against us?’ Such questions do not stem from real doubts—they are a way of navigating grief, a need to be reassured once more that their loved one died enveloped in love and care.

*Apay (Kazakh: апай) is a respectful form of address for a woman, commonly used to address a female teacher or an older woman in Kazakhstan.

Gradually, trust grew between us. We adjusted the therapy, the pain became manageable, and apay—which is how we affectionately address elderly care-receivers—began to sleep normally.

This case became a major success for our team. A woman who had previously refused to let anyone approach her was now looking forward to my visits. Peace returned to her home. When a person is clean, lying in a fresh bed, and free from pain, everything changes. Sometimes, as I was leaving, I would see her quietly drinking tea or eating broth.

Apay passed away shortly before the New Year. She died at home, surrounded by her daughters, without fear or pain.

In palliative care, we do not just help the patient; we help the family to live on after the loss, without a heavy sense of guilt, knowing they did everything possible. After apay's death, her daughters called me and asked, ‘Did we do everything right? Did mum hold any resentment against us?’ Such questions do not stem from real doubts—they are a way of navigating grief, a need to be reassured once more that their loved one died enveloped in love and care.

Sholpan Utebayeva’s conclusion:

I will never accept the idea that there is ‘no outcome’ in our work. When, after sleepless nights, a person finally falls asleep without pain, that is an outcome. When a family stops fearing they will be unable to approach their loved one, that is an outcome. When a person can live their final months at home, in dignity rather than in loneliness and fear, that is our ultimate outcome. We cannot stop the illness, but we have the power to ease suffering and restore a person's sense of peace. That is where the profound meaning of palliative care lies.

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