Palliative care is available to acutely ill patients, may be provided along with disease-specific, life-prolonging treatment. Meticulous attention to be prevention and relief of pain and other burdensome symptoms is a basic part of quality palliative care. Yet, comprehensive palliative care includes much more. Psychosocial and spiritual care, counseling, and guidance in choosing among treatment options, and assisting with practical support for patients and caregivers are all equally fundamental components of comprehensive palliative care. It is critical to stress that palliative care should be provided from the time of diagnosis of a serious, debilitating, or life-limiting illness. Palliative care should be an integral part of healthcare aimed to achieve best possible outcomes including optimal quality of life, function, and opportunities for personal growth across the life span. Palliative care can and should be provided along with any disease-modifying treatments. And, yes, for some people with advanced illness, palliative care may be the main focus of care.
Chronic obstructive pulmonary disease (COPD) is the third leading cause of death in the United States. It is highly prevalent, and as it progresses, causes patients to become too disabled to work, thus creating substantial economic and social burdens. In 2010, U.S. healthcare data estimated the total economic burden from COPD at $50 billion, of which $30 billion was related to direct medical expenditures and the remaining $20 billion related to morbidity, loss of work, and premature death. There are also unacknowledged and unquantified costs including the economic value of care provided by family members and their potential lost wages as they stay home to care for the patient.
As the disease progresses, some patients will choose mechanical ventilation as a palliative treatment option. although the patient with advanced disease is eligible for hospice care, many hospices cannot afford to accept the patient with mechanical ventilation into their programs because this high-tech intervention drives the cost of care beyond the standard insurance reimbursement. Thus, patients and families may be deprived of the benefits of hospice care.
Bronchiectasis develops early in the course of cystic fibrosis, being detectable in infants as young as 10 weeks of age, and is persistent and progressive. Recent data reveal that neutrophil elastase activity in BAL fluid in early life is associated with early bronchiectasis in children with cystic fibrosis.
Systic fibrosis is an inherited autosomal recessive disease in which abnormally thick mucus affects the reproductive, gastrointestinal, and respiratory tracts. Cystic fibrosis causes respiratory disease, characterized by chronic infection, obstructive airway disease, and progressive decline in lung function. Death is most commonly the result of respiratory failure. The life expectancy of patients with cystic fibrosis has increased to the mid-30s as a result of advances in treatment. Adult palliative care providers will be caring for more patient with cystic fibrosis as life expectancy of these patients continues to increase.