There is a stigma that comes with the term “palliative care,” as it is typically associated with hospice and terminal illnesses. This is not the case, as palliative care is simply meant to improve quality of life and relieve any patient suffering. Recently, the Pulmonary Wellness Foundation organized a peer support group to better understand palliative care in terms of idiopathic pulmonary fibrosis.
About Idiopathic Pulmonary Fibrosis (IPF)
Idiopathic pulmonary fibrosis is the hardening and scarring of the tissue in the lungs that is the result of an unknown cause. While medical professionals do not know the cause of this disease, they do have theories. They suspect that people have a genetic mutation that makes them more susceptible to environmental triggers, such as smoking cigarettes and viral infections. Symptoms include shortness of breath, a dry cough, decreased appetite, weight loss, and the clubbing of fingers and toes. These symptoms can develop slowly over time, making it difficult to obtain a diagnosis. Unfortunately, a diagnosis comes with a life expectancy of 3-5 years. Treatments are meant to address symptoms.
Palliative Care for IPF
First, it is important to define what exactly palliative care is: a specialized form of treatment intended to provide relief from the stress and symptoms that come with a rare or serious illness. In terms of IPF, a large focus is alleviating any anxiety that patients may face, along with a number of other goals.
Palliative care providers are important and understand the intricacies that come with a severe condition. They will present a patient with all options, always keeping quality of life in the conversation. They also understand that the patient makes the final choice in regards to their care, and they will always respect that choice.
These providers are understanding in another sense: they can validate fears. They understand that living with a severe illness is scary, along with the symptoms and experience that comes with that illness. As many patients do not feel comfortable discussing their fears or concerned with loved ones, the palliative care team can be there for them.
This team can help with other difficult tasks as well, such as paperwork like wills and advance directives. They know how to remain comforting, while also giving patients some control over their life. This process also takes some of the stress away from loved ones. In fact, many palliative care approaches take the entire family into mind when creating their treatment plan. They know how to provide support for loved ones as well.
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