Submitted by: Dimithri Silva,
HBSc SRT

Idiopathic pulmonary fibrosis (IPF) is a rare lung disease that results in scarring of lung tissue. Due to varying severity between patients, symptom management is essential. In the article, “The Role of Palliative Care in Reducing Symptoms and Improving Quality of Life for Patients with Idiopathic Pulmonary Fibrosis: A Review”, Zou and others discuss how palliative care can lead to improved outcomes for patients suffering from IPF (Zou, Kass, Gibson & Lindell, 2020). They state that the unforeseeable disease progression of IPF and delays between initial diagnosis and evaluation lead to stress for both patients and their families, which is in addition to symptom burden (Zou et al., 2020). As such, from the reported success of early palliative care (EPC) in oncologic diseases, the authors infer that the same strategy should be used for IPF patients (Zou et al., 2020). The researchers conclude that EPC plus a combination of pharmacologic and non-pharmacologic therapies, improves the quality of life for patients and their families or caregivers by managing symptoms early and providing opportunities for discussing advanced care plans (Zou et al., 2020).

It is known that IPF patients have several unmet needs, such as an adequate diagnosis, access to emotional support, and information resources (Werderman, 2020). It is also known that having care coordinators, as found in palliative care settings, enhances patient satisfaction (Hambly et al., 2019). To expand on this, Zou et al. (2020) mention that palliative care is “underutilized, and often underappreciated” (p. 35) for IPF cases. It should be possible to address IPF patients’ needs by providing an environment that supports a relationship between the patient and healthcare provider (Zou et al., 2020). This relationship would give them the freedom to discuss patient expectations and end-of-life care, which would lead to decreased stress (Pruitt, 2021).

From the limited information available regarding EPC for the management of IPF, it is clear that one issue is a lack of patient and caregiver education. The distinction between early palliative care and hospice care is usually unclear, which leads to the late adoption of palliative care (Zou et al., 2020). Additionally, patients and caregivers lack understanding of the benefits of EPC (Lindell, Kavalieratos, Gibson, Tycon & Rosenzweig, 2017). Thus, if patients were to be provided with more information about EPC, they would make an informed decision before managing their IPF becomes more difficult. From the perspective of families or caregivers, learning about the benefits of EPC would allow them to fulfill a more significant role in managing the disease. A qualitative study found that, in retrospect, caregivers in home-based palliative care settings wished that they had been exposed to palliative care earlier because being trained in “minor clinical procedures and managing symptoms” was helpful (Paul & Fernandes, 2020, p. 306).

Even though the cause of IPF is unknown and the prognosis is difficult to determine, EPC is a viable approach in managing symptoms and improving quality of life. Zou et al. (2020) bring to light that while EPC is underused in IPF, it has positive outcomes in other patient populations. For this reason, there needs to be more research completed that demonstrates the effectiveness of early palliative care in patients with idiopathic pulmonary fibrosis, and additional educational resources should be provided for patients and families to assist in the early adoption of palliative care.

References

Hambly, N., Goodwin, S., Aziz-Ur-Rehman, A., Makhdami, N., Ainslie-Garcia, M., Grima, D., Cox, G., Kolb, M., Fung, D., Cabalteja, C., DeMarco, P., Moldaver., D. (2019). A cross-sectional evaluation of the idiopathic pulmonary fibrosis patient satisfaction and quality of life with a care coordinator. Journal of Thoracic Disease, 11(12), 5547-5556. doi: 10.21037/jtd.2019.11.41

Lindell, K. O., Kavalieratos, D., Gibson, K. F., Tycon, L., Rosenzweig, M. (2017). The palliative care needs of patients with idiopathic pulmonary fibrosis: A qualitative study of patients and family caregivers. Heart & Lung, 2017(46), 24-29. doi:10.1016/j.hrtlng.2016.10.002

Paul, A., & Fernandes, E. (2020). Experiences of Caregivers in a Home-Based Palliative Care Model – A Qualitative Study. Indian Journal of Palliative Care, 2020(26), 306-311. doi: 10.4103/IJPC.IJPC_154_19

Pruitt, B. (2021). Idiopathic pulmonary fibrosis: What nurses need to know. Nursing2021, 51(1), 23-29. doi:10.1097/01.nurse.0000724352.48335.1b

Werderman, D. S. (2020).  Idiopathic Pulmonary Fibrosis. Radiologic Technology, 91(4), 361-376. Retrieved from http://www.radiologictechnology.org/content/91/4/361.long

Zou, R. H., Kass, D. J., Gibson, K. F., Lindell, K. O. (2020). The Role of Palliative Care in Reducing Symptoms and Improving Quality of Life for Patients with Idiopathic Pulmonary Fibrosis: A Review. Pulmonary Therapy, 2020(6), 36-46. doi:10.1007/s41030-019-00108-2

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