Palliative Care is a term that gets confused with hospice care because both are forms of comfort care. Hospice care is comfort care for someone dying with a chronic or life-threatening illness. Palliative Care is comfort care for someone living with it.
What they have in common is comfort. Physical comfort is often attainable by the skills of their physician and a good treatment plan. A teenager however, can have the best medicine dripping through his veins, but be suffering from things that cannot be addressed by drugs.
While Palliative Care includes standard medical efforts to relieve physical suffering, it also ministers to the patient’s psycho-social-spiritual needs, which if un-addressed could lead to intensified pain and a poorer response to medical treatment. Comfort care is like a stool with four legs of support: physical, social, psychological and spiritual. To ignore one “leg of pain” will wobble the stool, and leave one uncomfortable.
Palliative Care for the adolescent means dealing with the emotional stress of interrupted psychosocial development, chronic pain in a young body, and fear of premature death. Illness adds layers of complexity to what is already in flux: the quest for identity, peer acceptance, a positive physical appearance, puberty and sexuality, autonomy, independence, and the pressure to form personal spiritual convictions. Who cannot remember the angst of adolescence without wincing at the thought of adding a health care struggle to that picture?
Streetlight helps them navigate through what is arguably the most precarious and difficult stretch of anyone’s journey – a juncture that is fragile in the healthiest teen, and easily derailed by illness.
Palliative Care and support can mean different things for each disease population. The 16 year-old-boy finishing the basketball season with leg pain who finds out he has osteosarcoma (cancer) is dealing with abrupt and sudden interruption of an otherwise normal life. He has a very different kind of need from the girl with cystic fibrosis who has always known her life would be shorter and is struggling to find meaning despite its brevity. And different still is the plight of the teen with sickle cell who is having trouble holding a job down, is falling behind in school, and wonders if it is even worth trying with so many hospitalization interruptions.