Warriors and Survivors - 60

 

Children Cancer Stories by Rukh Yusuf - Blog # 60

"Palliative care"

 

I am Rukh Yusuf, Clinical Pharmacist, also specialized in Total Parenteral Nutrition and Bone Marrow Transplant. I have been working in Pediatric Oncology unit of a public hospital for several years. The mission of this blog is to bring to you the real-life stories of child patients suffering from cancer. Cancer is still a difficult disease to handle and treat. However, when it strikes the children, some so young that they cannot even speak, their agony is beyond expression and words. Let us pray especially for children suffering from cancer for early and complete remission. May Allah shower His Merciful Blessings upon them. Aameen.

Pediatric palliative care is a special type of supportive care for children facing a serious illness like end stage or non-treatable cancer. Palliative care focuses on comfort and quality of life. The palliative care team works with the primary medical team to personalize care for the child and his/her family.

As per WHO definition, Palliative care is the active total care of the Child’s body, mind, and spirit, and also involves giving support to family. It ideally begins when illness is diagnosed and continues regardless of whether or not a child receives a treatment for the disease.

Palliative care is crucial part of integrated, people-centered health services. Relieving serious health related sufferings-be it physical, psychological, social, or spiritual.

The main goals of palliative care for children with cancer and their families are to:

1)      Manage pain and other physical symptoms such as nausea, loss of appetite, fatigue, and troubled sleeping.

2)      Help with psychological symptoms such as anxiety & depression and other emotional and social support to patients and family.

3)      Match treatment and care choices with patients and family goals.

4)      Provide coordination of care and communication among different healthcare professionals.

5)      Connect families to community-based resources and services.

There are international standards and protocols for breaking bad news to families about the condition of the disease of their children. Breaking a bad news needs courage and empathy. Palliative care team comprised of multi professional team that provide holistic care to the children.

 

It is estimated that globally only 14% of patients who need palliative care receive it and 98% of children who need palliative care live in low- and middle-income countries, where very few palliative care services available.

“Pediatric palliative care is a right, not privilege”.

I met Omer a week ago, he is a 7 year old boy with metastatic Neuroblastoma from Faisalabad.

I was too sad to know that he is on palliative care at such a young age. He was diagnosed with Neuroblastoma two years back. His treatment was started in children’s hospital, and he was getting better initially. Later his disease started spreading in lungs and liver. He was admitted again, and the panel decided that Omer should be on palliative care, as his disease is not treatable any more.

Omer does not speak or respond now; he does not even move. It is his mother’s courage who is managing him alone in such a critical situation. The lady is maid somewhere and Omer’s father is laborer in Faisalabad. They have two other children. Father is taking care of other two in Faisalabad and mother is trying her best to keep Omer alive.

All pediatric cancer patients need extra care and best treatment but those on palliative care are in dire need of excellent treatment and empathy. They are the ones who know that they will die sooner or later. Their families know that their children will be no more in some time, and I believe this is horrific thought for any parent.

In developing or lower income country like Pakistan where treatable disease hardly get excellent care and treatment, palliative care is still in initial stages and there is lot of work to be done on improving palliative care services across the country.

I shall discuss about palliative care and its team members in details in my later blogs.

We pray for Omer and his family. May the family bear the loss with courage and fortitude. Aameen

Prayers for the complete health and recovery of all other warriors who are suffering with their families. May Allah ease and cure all patients and cancer warriors.

 

Note: Names have been changed to protect identity