Pediatric palliative care does not erase the harsh reality of the disease; Rather, softens the edges and provides renewed hope.
Quetta’s gladiators were playing Lahore Qalandars in the ninth edition of the Super League of Pakistan in Karachi. The gladiators sealed the playoff for six WICKETS, with the most crucial taken by the former pakistan pakas Muhammad Amir.
Amir’s performance that day barely impressed his critics. But it was a resounding success for a 14 -year -old fan with the same name, who had also been looking from the stands at the National Stadium that day.
It was a dream come true for this teenager, MA, attending the game, since he first had to get the approval of his oncologist and palliative care doctor to attend. Acute myeloid leukemia that threatens Amir’s life, which was diagnosed two years earlier, had forced him to give up school, but his fever for Cricket had not decreased. When he told our quality of life team of the pediatric palliative care service of the Aga Khan University how much he yearned to see Muhammad Amir in action, we hurried to get PSL tickets to see his favorite team and player in the flesh.
Pediatric palliative care doctors, as defined by The lancetTake care of children with serious and complex diseases. They prepare the family with early orientation about what is coming in this difficult trip, during which communication between parents and children often decreases while both try to protect themselves from the pain facing the inevitable. Pediatric palliative care doctors walk this trip with the family and the patient, providing constant and holistic support throughout the child’s disease to ensure that they experience the best possible quality of life given the prognosis.
In Pakistan, less than half of children with cancer survive and many more are diagnosed with inherited disorders that limit life, such as muscle atrophy and dystrophy, myopathies, leukodystrophies, cystic fibrosis and epilepsy syndromes. This means that thousands of them and their families need palliative care, which is a relatively new health concept in Pakistan. Most of our common conversations about the disease tend to revolve around prevention and cure. But if there is none, we tend to avoid discussion about the other results. That’s where palliative care intervenes.
It is not the usual type of hope
Pediatric palliative care is often misunderstood. It is not about giving up hope; Rather, it’s about redefining it. He focuses on living well and as fully as possible, even in the face of serious diseases.
For children fighting cancer, genetic disorders, serious congenital conditions or complex disease either towards recovery or death. It also includes providing families with holistic attention that approaches not only physical symptoms but also emotional, spiritual and social needs.
However, our medical care system is still lacking pediatric palliative care. And the challenges are multiple.
In Pakistani society, where pain and symptoms not of pain, as well as psychological, emotional and social suffering, remain absent, discussions about death, terminal disease and pain are severely neglected. As a result, families often do not know how these sufferings contribute to the quality of general life, as well as how palliative care can help them navigate through these challenges.
Many medical care providers who care for these children lack formal training in palliative care, which leads to lost opportunities for early intervention that could significantly reduce the suffering of a child and family. With few palliative care programs, families often struggle to access specialized support.
Compassion, dignity and improvement of the quality of life
When the six -year UA was admitted to the Oncology Room at the Hospital of the University of Aga Khan, its fragile body carried the weight of an aggressive diagnosis of cancer. He was in physical and emotional pain and was withdrawing in silence while his mother looked helplessly. Like many families, they believed that if a cure was not possible, there was nothing more to do.
But then something unexpected happened.
Our quality of life team visited it, not to replace the treatment of their illness, but to walk through it. We adjust your medications to better control your pain and nausea. We spend time with her, involving and organizing small surprises to rejoice her days.
His parents also received support, learning how to take care of her both in the hospital and at home. They also understood how they could handle their own fears, and most importantly, they realized that comfort and quality of life were still available.
When a four -year -old boy named Mr’s Blood Cancer resurfaced for the second time in 2023 and his condition worsened, we approached his mother and asked him if he would consider memory with a pendant made of his small digital footprints.
He found the comforting idea and got involved with the designer who put them superimposed to form a heart. Mr. died on November 4, 2023. In the following months, his mother often climbed to the base of his throat where the pendant sat. She would caress the filigree furrows and the small object would offer something ineffable.
“People don’t know what palliative care is; It’s not about dying, it’s about how the rest of the days pass, ”he said.
Parents now request memory with these pendants that can be done in gold or silver. Sometimes, they come with digital footprints, sometimes messages written by hand for their children, sometimes it is his son’s favorite drawing. The designer and artisanal jeweler each memory at no cost and the effort is supported by a group of wonderful ladies called Choti Choti Khushiyan.
Only the beginning
Palliative care are well established in other parts of the world, but in Pakistan and much of South Asia and the Eastern Mediterranean region, it is still misunderstood and underutilized, especially for children.
People believe that palliative care means giving up hope. But hope is not just a cure; It is about ensuring that each child, regardless of their prognosis, can live with dignity, comfort and joy.
And this is just the beginning. To really meet the needs of the youngest and most vulnerable patients in Pakistan, palliative care should be integrated into the National Medical Care Agenda. This means assigning resources for specialized training, establishing palliative care in hospitals throughout the country and, perhaps, most importantly, changing cultural perceptions about what it means to take care of a child with a potentially deadly and limiting disease of life.
In addition, it is crucial to work with political leaders to guarantee sustainability. The quality of life offers an idea of how compassionate medical care should be. It is a model not only for Pakistan, but for the world, which shows that even in environments limited by resources, it is possible to provide dignified and high quality care.
For children like MA, Au and Mr. Palliative Care does not break the reality of a disease, but can soften their edges. It provides a different type of hope, one that ensures that even in the face of unimaginable challenges, life can still have moments of light, love and meaning.
Obair Khan’s art work
