Case Study: Peds Team Support Improves Quality of Life for Patient and Family

CATEGORY: Medical and Clinical
PUBLICATION: Clinical Connections

​Husam is an 18-year- old who is developmentally at a 3-month- old level with Cerebral Palsy, seizures, and respiratory failure. Hospice of the Western Reserve's pediatric palliative care team met Husam and his mother in June  after being contacted by the hospital where he had been receiving treatment.  The family emigrated to the U.S. from  Iraq under refugee status in their quest to find medical support for Husam. An older brother with similar disorders had died in Iraq.

The goal of Husam's mother was to make and keep her son comfortable  so the two could return to their  U.S. home. The hospital staff supported her in this decision and discussed what supports could be used at home to manage respiratory changes.

Hospice of the Western Reserve's pediatric palliative care team worked closely with  Husam's  mother to provide her with the education to care for him in their own home. Goals included weaning him off the ventilator, providing  bi-pap support at night and oxygen during the day. A feeding tube was placed to support his nutritional needs. Once his symptoms were controlled, the team met with other family members involved in his support . The 24/7 on-call support system was reviewed and volunteer  support was arranged to provide the family with  respite to help better manage  daily activities.

Since seizures were also a problem, medications to manage occurrences were placed in the home. Education and equipment were provided to help Husam's mother safely bathe him, and twice weekly visits from a nursing assistant were arranged.

The team social worker helped Husam's mother  to apply for a waiver to permit the family to remain in the U.S. for health and humanitarian reasons, and to ensure social security benefits were put in place. Calls were placed to local organizations to obtain needed equipment such as a wheelchair and car seat to allow Husam greater mobility with his family. The social worker also applied for funding  for a flat screen TV for Husam's room to be used in conjunction with devices from his school to provide greater stimulation.

The team's support extended to the school setting. The team  worked with a physical therapist to make adaptations that would allow Husam to be comfortable in his wheelchair all day, and they  counseled  school staff about Husam's special needs.

Just as important as the care provided to Husam is the support the team provided to his mother. With the additional resources in place, she was able to get much-needed breaks from caring for her seriously ill child to attend to personal appointments,  take occasional walks and  even to gradually increase her independence by obtaining a driver's license. 

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