Diseases & Conditions : Care of the Terminally Ill Child
What is supportive (palliative) care?
Supportive, or palliative, care is care aimed at comfort versus cure and treatment. The decision to accept palliative care versus aggressive treatment is often a decision parents struggle with. It is an acceptance of a poor prognosis and an opportunity to provide a very special kind of care to a loved one. The dying process requires as much care and respect as the other stages in life. It is only through this care and respect that parents can truly "be there" for their child. It is a change of direction with new goals and new hopes: a peaceful, pain-free death in the presence of loved ones.
Palliative care can be provided in the hospital, at home, or in a setting specializing in palliative care. The duration of palliative care may be long-term, over several years, or short-term, lasting days or weeks. Palliative care may include chemotherapy or radiation for pain control. Often a progressive disease or tumor may be slowed or reduced by this therapy for pain management. Other methods of pain management may be recommended. It is important to discuss that the goal of therapy is not for treatment or cure, but rather to relieve pain and discomfort.
What are the patient's rights?
Patient's rights are a list of rights to ensure that the quality of care, respect, and decision-making processes will be honored by the company, individual, or institution that is providing his or her care. These rights will be given to the patient and family before care begins. It is similar to a contract that provides protection for the patient and family, and informs them of services and limitations of the caregiver(s).
What are palliative care services?
Either in the home, hospital, or a specialized setting, the services most palliative care providers can offer are extensive. The following are some of the services offered:
Psychosocial support and intervention to help the patient and family members
Equipment for delivery of medications, nutrition, oxygen, and suction
Equipment including special beds, toilets, chairs, wheelchairs, and bath requirements
Skilled nursing care, doctors, pharmacists, and other specialists
Medication and nutrition support
Spiritual, religious, and cultural needs and requests
Special services for siblings or children (for example, support groups)
Respite care allowing the family to rest
Follow-up care for the family after the child has died
The decision to have the child die in the hospital or at home should not be based on the availability of supplies or equipment. All efforts are made to comply with the family and the child's request for care in any setting.