​​​Palliative Care at Paediatrics & Child Health: Quality of Life service

​At AKUH, our Quality of Life team run by Assistant Professor Shahzadi Resham offers​ ​Palliative Care to patients and their families facing life-threatening or life-limiting illnesses. We do this through the prevention and relief of suffering by means of early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual.​

For oncologists the enemy is cancer but for Palliative Care physicians, the enemy is suffering. ​Distress comes in different forms. ​For a sick child it can be physical symptoms and challenges in understanding what is happening. ​​​For the parents or caregivers it can be psychosocial distress from seeing the child su​ffer and existential distress. ​​For the siblings it can be a change in the family dynamics and challenges in understanding what is happening.​ The Palliative care team tries to help families cope with the new diagnosis and maintain hope for recovery.

Suffering requiring communication:
  • Identifying problems and challenges
  • Understanding illness
  • Exploring hopes/setting goals
  • Advanced care planning
  • Making decisions
​
Suffering requiring interventions:
  • Physical suffering
  • ​Psychosocial suffering
  • ​​​Spiritual suffering
  • Ber​​eavement 
  • Fam​​ily support
  • Tea​m support
  • Community support

​​​Suffering requiri​​ng ​​coordination:

  • Collaborating with other providers or specialists
  • Facilitating logistics of medical and social needs
  • Partnering with community programs
  • Identifying community resources

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​​​Hammad's story

This photo is of 14-year-old Hammad with his favourite cricketer Babar Azam. 

Hammad had a relapse of leukemia after a bone marrow transplant when he came to AKUH. The Quality of Life team worked on care coordination with the primary team, home care, lab tests and hospital admissions. Initially he had chemotherapy   and then transfusions. The Palliative care team worked on his s​ymptom management, pain, anxiety, depression, nausea and vomiting, fevers. His parents were offered psychological support and Hammad was given end-of-life care. 

Amir's wish

How can a Palliative care physician work with a child who has a life-limiting illness?

Full story

​​Does Palliative care make a difference?

  • Significant improvement in children’s symptoms
  • Improvement in child’s quality of life
  • More likely to report experiencing meaningful event/fun in the last months of life
  • Increase documentation of psychological diagnoses or mental health needs
  • Less intensive care at the end-of-life; less likey to die in the intensive care unit or on a ventilator
  • Undergoes fewer intensive procedures
  • Improved family statisfaction
  • Family reported increased health care provider “willingness to listen” to parental questions and improved communication among health care providers 
  • Accoriding to parents: the childs dying place had been a “good place” with a noted peaceful death
  • Decrease caregiver burden in terms of anxiety and depression
  • Increase in referral patterns and consulation frequency, earlier consulations and regular long-tem followups​