Quality of life (QOL) is a palliative term (not to be confused with hospice or end-of-life care) which looks at the comfort of the patient and their family and refers to issues that cause discomfort including environmental, position, change in location, caregiver, sensory input (light, noise, smell, etc.) or discomfort / pain. Many patients with complex conditions are not able to clearly communicate what is upsetting them. While it is generally felt that "true pain" is often under treated in children, it is important to separate discomfort that can be caused by environmental issues, abnormalities involving bodily functions, or family / caregiver stress which can often be relieved or corrected without pain medications. Patients with significant brain injury often are agitated and it is challenging to the caregivers and physicians to identify physical causes before concluding that it is a behavior. A stressed caregiver may be quick to ask for pain medication when there are alternative approaches that may be of help. In addition many patients with pain develop one of these other conditions as a side effect of the pain medication. QOL approach to the family may involve counseling, respite, and/or referral to their physician.
This care focuses on enhancing quality of life for the child and family, minimizing suffering, optimizing function and providing opportunities for personal growth. Effective management of pain and other distressing symptoms, together with emotional, social and spiritual care are the core of care provided by the palliative care team. The goal is to help patients and their families live as normally as possible and to provide them with timely and accurate information and support in decision-making.
Respite care and care through death and bereavement also are components of palliative care. Such care and assistance are not limited to people thought to be dying and can be provided concurrently with curative or life-prolonging treatments.
Most patients / families receive only end-of-life services and this often means in the last 3 to 14 days. Many professionals and organizations such as Children's Hospice International and the American Academy of Pediatrics endorse the provision of palliative care from the onset of a life threatening condition, even when life-prolonging care is also being provided. While this coordination of care is ideal, many insurers and government programs will not pay for both hospice and palliative care services if they are delivered at the same time. However, Ohio Home Care Waivers are now able to cover both types of services.