Cystic fibrosis (CF) is a progressive and genetic disorder characterized by excessive production of mucus, inflammation, and abnormal levels of salt in the body. This leads to increased congestion in the lungs and often severe complications in the digestive system. Although 65 years ago the disease was understood and until recently it has been fatal, in the present day many medical treatments of CF exist, which contributed to an immense extension of life expectancy. However, due to the multidimensionality of the disease, CF remains a heavy burden and sets severe limitations in life quality, not just for the patients but also for their families. In order to address the needs of those patients and their families to improve the life quality of cystic fibrosis patients, palliative care needs to be integrated earlier in the progression of the disease.
Understanding Palliative Care in Orange County
Palliative care is most often defined as ‘medical care that provides relief from the symptoms and stress of serious illness’. Patients can receive palliative care at any point in a serious illness, including alongside treatment that’s intended to be curative; unlike hospice care, which refers to end-of-life palliative care (or, in certain circles, ‘curative care that’s simply not working’) – something that simply isn’t available for most patients in the US until they’re literally weeks or days from death – it aims to help patients and families live as well as possible through an illness.
The Impact of Cystic Fibrosis
Cystic fibrosis (CF) affects many diverse organ systems. The lungs and the efficiency of the immune defense are particularly impacted. As a response to longer states of hypoxia from overflowing airways in the lungs, excess fluid is released – a failed evolutionary reaction to try to counteract the hypoxic (low oxygen) condition, which in turn results in untreatable bronchiectasis that could lead to untimely death through major infection and respiratory failure – typical of the ‘fibrosing’ mindset of CF. Another important system affected by CF is the digestive system, which can cause a number of digestive problems and inflammation. The sinuses, ears and even libido can be affected, while in males cystic fibrosis can adversely affect the reproductive system. More generally, CF affects a person’s energy and appetite, his digestive efficiency, his respiratory effort and feeling of fitness and wellbeing. So many respiratory, digestive and antibiotic-based treatments linked to CF can be heavy and energy-sapping, and erode quality of life.
Benefits of Early Palliative Care for CF Patients
Symptom Management – Palliative care teams specialize in the complex symptom management unique to chronic illness such as control of pain, nausea / vomiting, shortness of breath with respiratory distress, gastrointestinal distress, and fatigue. For the deeply fatigued CF patient, coordinating effective painting can lead to a better quality of life and fewer hospitalizations.
Psychological and emotional support: Living with cystic fibrosis can lead to psychological issues, such as anxiety, depression and stress. The palliative care provides psychological support, such as counseling, psychotherapy/talking therapy, and support groups. These help patients and their families and friends deal with emotional distress.
Better information sharing and care coordination: patients, families and all healthcare providers must be on the same page in terms of understanding the treatment goals and care plans.
Improved Quality of Life: The clearest way palliative care helps CF patients is by increasing their quality of life. Because palliative care is aimed at the person as a whole, it can help patients be more independent, participate in meaningful activities, and achieve their life goals.
Providing palliative care for the patient is primordial. It is also important to provide palliative care for their families — they get guidance, respite care and empathy. Supporting families is a vital part of eleventh-hour care.
Integrating Palliative Care Early
Incorporation of palliative care early in the course of illness of cystic fibrosis patients translates to improved outcomes and improved quality of life. Below is an instruction that describes a task, paired with an input that provides further context.
Early Referral: CF healthcare providers should consider a referral to palliative care services at the time of diagnosis or when the patient’s condition declines to a later stage of the disease. Early referral facilitates symptom management and care.
Patient and Family Education: Addressing misconceptions through patient and family education can help patients and families better understand and anticipate the goals and supportive care that palliative care can provide. It therefore supports both the acceptance and uptake of palliative care services.
Collaborative care: Multidisciplinary teams of pulmonologists, gastroenterologists, palliative care physicians or nurses, and other healthcare providers have the knowledge and skills to provide thorough care for the person, without focusing only the lungs or guts.
Conclusion
For cystic fibrosis patients, early guidance towards palliative care could make them lead more fulfilling lives. By controlling their symptoms and associated mental and physical problems, we aim to improve their emotional, social and spiritual wellness, and give them a chance to achieve a better quality of life. At Beta Hospice Care, we are committed to offering excellent palliative care for cystic fibrosis (CF) patients and their families. We want to enrich lives even in the midst of life-threatening conditions like cystic fibrosis. With the integration of palliative care early, we could help cystic fibrosis patients live a better life! Offering palliative services in Los Angeles, San Bernardino, Riverside, Orange County and Ventura.