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.
Scope and Standards of Practice – End of life Care
Structure and processes of care: the composition and qualifications of the interdisciplinary team and define how the team should collaborate with patients and families.
Physical aspects of care: management of physical symptoms such as pain, fatigue, anxiety, and others.
Psychological and psychiatric aspects of care: assessment of the psychosocial needs of patients and families. the requirement for bereavement support is included in this domain.
Social aspects of care: focus on leveraging family strengths and social support mechanisms to alleviate family stress.
Spiritual, religious, and existential aspects of care: emphasizes the roles of the members of the interdisciplinary team, especially the chaplain, in recognizing and addressing spiritual and existential distress. Specifically, the competency of all team members in understanding and supporting the religious practice preferences of patients and families is stressed.
Cultural aspects of care: describes cultural competence and defines processes for the provision of culturally sensitive care.
Care of the patient at the end of life: Highlights the importance of providing multidimensional interdisciplinary end-of-life care for patients and their families, which includes educating them and building them through the dying process.
Ethical and legal aspects of care: addresses advance care planning, ethics, and legal aspects of care. The role of the interdisciplinary team in broaching end-of-life conversations and documenting patients’ preferences is stressed. Consultation with ethics committees and legal counsel is also emphasized.
The clinical applications of ventilation and the use of specific modes during the acute stage of illness focus on protecting the lung and improving the patient outcomes.
Acute respiratory distress syndrome (ARDS), the most severe presentation of acute lung injury, results from an acute insult to the body that may be direct or indirect (pneumonia vs sepsis). The release of mediators and a host of other toxic substances affect the alveolar- capillary permeability adversely and result in a noncardiac pulmonary edema. Pathology includes decreased compliance, shunting, and refractory hypoxemia. No definitive treatment, but the therapy focus on managing the underlying condition and on supportive mechanical ventilation.