The Key Role Nurses Play in Patients’ Journeys with Chronic Diseases
It’s an exciting time to be a nurse—our role in health care is as important as ever and we have access to technologies and innovations that allow us to provide better care for patients. Even with these advances, however, the importance of ensuring we are well prepared to be sources of support remains constant.
During the last seven years as a pulmonary nurse practitioner at Temple Lung Center, I’ve found that knowledge sharing amongst peers is key to advancing my clinical skills and providing better holistic care for my patients, especially those with chronic diseases that may be difficult to manage. So in the spirit of National Nurses Week, I wanted to share a few things I’ve learned, both from my experiences and from other amazing nurses I’ve worked with, that may be helpful to you.
- Tailor recommendations and discussions to the individual. It’s important to set realistic expectations about what life will be like with a serious, chronic disease and what the disease trajectory might be, while also motivating patients to actively manage their condition. And while there is a standard of care for most disease states, it’s OK if some patients don’t agree with those recommendations.
Every patient is unique, so treatment plans should reflect individual needs. I partner with pulmonologists to tailor a plan for each patient that takes into account his or her lifestyle, goals, and the quality of life he or she is seeking.
Because information about diagnosis and treatment can be hard for patients to digest, and needs and personal goals change over time, my colleagues and I revisit this information over several appointments. We try to create an open and accessible environment by encouraging patients and their families to reach out to us and by providing clear instruction for how they can do so. I also try to gauge how much a patient is absorbing during an appointment and often proactively follow up if I feel he or she was unsure about anything.
- Think holistically about patient needs. I try to put myself in a patient’s or family member’s shoes, giving them the information I’d want about managing a disease and helping them find the emotional support that’s so important.
With patients I care for who have idiopathic pulmonary fibrosis (IPF), a progressive and irreversible lung disease, I review options such as FDA-approved therapies, supplemental oxygen, pulmonary rehabilitation, nutrition therapy, evaluation for a lung transplant, comorbidity and symptom management, as well as psychosocial support.
I also try to connect patients with sources of emotional support and up-to-date, reliable information such as psychologists, online or in-person support groups, and advocacy groups, like the Pulmonary Fibrosis Foundation.
Through the quarterly support groups I facilitate, I’ve seen first-hand how valuable it is for patients and caregivers to hear from others in similar situations. That environment also provides me the opportunity to offer additional guidance that I may not have time for in the clinic.
- Enjoy that you will never be bored as a nurse—and take advantage of learning opportunities! With ongoing advances in treatment and the variety of conditions you may encounter, there is always more to learn. While it’s impossible to know everything, I try to understand as much as I can about all my patients’ conditions because it helps me better care for them.
I learn from pulmonologists I work with, who are very hands-on, and utilize an on-site pharmacist to help answer patients’ questions about their medicines. Up to half of patients with chronic illnesses do not take medications as prescribed, which may be due to not understanding the dosing instructions, side effects, or insurance and financial implications. If a pharmacist isn’t available to answer such questions, medicine manufacturers often have support programs, trained support nurses, or clinical coordinators who can provide helpful advice. I’ve found that support nurses for IPF medicines are very helpful and compassionate with patients. They take their time, either in-person or on the phone, to discuss the disease, its symptoms, the medicine, and how to address potential side effects.
I also attend relevant conferences and participate in research at Temple, as well as continuing medical education (CME), to learn about the latest evidence-based research. Lastly, I recommend sharing experiences, resources, new research, and advice with your peers. Doing so helps us better educate our patients and offer them the support they deserve.
The work we do as nurses is so valuable. During National Nurses Week, I hope you take a moment to recognize the impact you have in your patients’ lives and share any insights you think might help other members of our nursing community.
