Palliative care in lupus
Palliative (pronounced PAH-lee-uh-tiv) care is a health care approach that tends to the physical, emotional, social and spiritual needs of a person with an illness and the needs of his or her family. It can be offered to people at any age and at any point in an illness such as lupus.
Palliative care, also called comfort care, is delivered at the same time as other ongoing treatment either by your regular care team or by palliative care specialists at home, in a physician’s office, in a hospital or in another care setting. Typically palliative care is given when patients request it. Some palliative care services may be covered by insurance.
In serious chronic illnesses such as lupus, palliative care aims to give a person with an illness the best possible quality of life from the time of diagnosis forward. It strives to keep him or her as comfortable as possible and functioning as well as possible.
Palliative care helps manage symptoms such as pain, fatigue, depression and difficulty sleeping. It offers practical support, functional support and psychological help from people from varied disciplines including physicians, nurses, social workers, nutritionists and clergy. When a child or teenager receives palliative care, plans may include helping the child in school, at home and in extracurricular activities and may involve school professionals, coaches or peers.
Family members also benefit from palliative care that helps them deal with the stress of illness in the family and possible changes in family roles and expectations due to the illness.
Palliative care helps you advocate for yourself with your health care team, because it ensures your voice is heard by professionals who take the time they need to grasp your unique needs. This helps you and your family understand your illness, the types of treatment you may receive and what to expect. Palliative care also provides a plan to deal with any issues you may face.
Palliative care is a relatively new concept in medicine. Though it is part of hospice care (care for the terminally ill who forgo further treatment), palliative care can be offered to anyone with a serious illness including those, like many lupus patients, who will likely live many years with their diseases.