Pediatric Palliative Care Program

Children with complex, life-limiting or life-threatening conditions represent a heterogeneous population characterized by a variety of disease trajectories. These children often have complex care needs. Along the way, family members regularly go through an array of strong emotions and have to take multiple complex and difficult decisions regarding care. Pediatric palliative care is a field that specializes in addressing these challenging, complex, and emotionally-charged situations of care.

 

Types of conditions for which a pediatric palliative care approach can be of benefit: 

  1. Conditions where curative treatments are possible but may fail (e.g. cancer, congenital heart disease, children awaiting organ transplant);
  2. Condition where intensive long-term treatment can provide a quality of life for a chronic, potentially progressive condition (e.g. cystic fibrosis, severe immunodeficiency, severe, progressive neuromuscular diseases);
  3. Non-progressive, irreversible conditions with vulnerability to various health complications (e.g. children with severe developmental disabilities such as severe cerebral palsy, hypoxic brain injury, or brain malformations);
  4. Progressive conditions without a curative option from diagnosis (e.g. trisomy)

 

Team Mission:

The Pediatric Palliative Care team ensures the provision of holistic care which takes into consideration the physical, psychological, social, and spiritual aspects of every experience. The team also gives equal attention to providing support to the child’s family. The involvement of a specialized Pediatric Palliative Care team should optimally begin as early as possible when a potentially life-limiting condition is diagnosed, even if remission in the future may be foreseeable (e.g. leukemia). A Pediatric Palliative Care team provides support and expertise to children regardless of whether or not they are receiving treatments directed at the disease (e.g. chemotherapy, bone marrow transplant). One of the key aspects of their work is to ensure a continuity of care along the whole disease trajectory: from inpatient to outpatient settings, from pediatric to adult care, from curative to palliative care goals.

The logo chosen by the Pediatric Palliative Care team is a colorful butterfly. It symbolizes the multiple transitions children and families go through along the disease trajectory. The logo was designed by one of the patients who followed at King Fahd Children Cancer Center. 

 

Click here to see our Pediatric Palliative Care Services Leaflet.

 

Goals of Palliative Care Services:

  • Pain and symptom management
  • Psychological support for children
  • Communication with family about end of life goal-setting and expectations
  • Family support and assistance with dealing with transitions
  • End-of-life care

The involvement of a Pediatric Palliative Care team also aims to reduce avoidable clinic and emergency department visits while addressing children and families' need with flexible outpatient options (e.g. phone clinic, virtual clinic, home visits).

 

Modalities of Service:

  • Inpatient consultations (Main Hospital and King Fahd Children Cancer Center)
  • Outpatient clinics
  • Consultation and Support in Home Health Care

 

Days and Hours of Operation:

The team usually operates according to the Hospital usual working hours:

Sunday to Wednesday (0730-17:00H)

Thursday (0730-16:00H)

 

Team Members:

The team is composed of specialized nurses and a physician. It works in close collaboration with a play therapist, psychiatrist, social worker, and patient relation representative. Charity organizations and volunteers from the hospital are also a source of support to some of the team activities.

 

Areas of Research and Publications:

Publications 

  • Sadler, K., Nancarrow, L., Alyami, H., & Abudari, G. Implementing a Nurse-Led Pediatric Palliative Care Service in a Tertiary Hospital: Steps and Recommendations Through a One-Year Retrospective Analysis. (Accepted for publication in 2021). Intl J Palliat Nursing.
  • Sadler, K., Abudari, G., Snelling, D., & Aljawi, D. (2020). Deaths in the Emergency Department: An Assessment of Patients’ End-of-Life Trajectory and Quality of Care, Indian J Palliat Care, 26(3), 352-357.

 

Ongoing research

  • Khan, S.J. & al. Should we refer patients to palliative care?
  • Khan, S.J., Sadler, K., Alyami, H. Algarni, M. Pediatric and Adolescent Palliative Care Awareness Survey in Saudi Arabia.

 

Staff Education Opportunities:

  • The Pediatric Palliative Care team members are official trainers for the recognized course “Pediatrics Education in Palliative and End-of-Life Care” (EPEC-Peds).
  • Medical, nursing, or allied health care provider trainees can request a stage with the team going through their respective academic department.