https://www.infirmiere-canadienne.com/blogs/ic-contenu/2024/04/15/dinfirmiere-a-patiente
Severe illness gives nurse ‘a new lens through which to view the world’
By April Fox
April 15, 2024
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An important role of the nurse is health educator, to optimize patient knowledge of their health conditions. Because knowledge is power, information enables patients to take an active role in their health.
My pursuit of a career in nursing was interwoven with a desire to help people in times of illness and to contribute to my community with a sense of purpose and passion. For fifteen years, I thrived in the perioperative environment, mastering technical skills and increasing my knowledge of surgical techniques, completing each day with the satisfaction that I had contributed to each patient’s care and healing.
Courtesy of April Fox
“Although the experience with my illness has produced negative and challenging circumstances in my life, I also have viewed it as a teacher. It has helped me improve as a person, a parent, a friend and, most substantially, a nurse,” April Fox says.
My life then morphed into something unrecognizable, and my professional life came to an abrupt halt with the development of a rare autoimmune neuromuscular disease called myasthenia gravis (MG), or grave muscle weakness. Plagued by vague fluctuating symptoms that were difficult to describe, I started on a journey as a patient that has been simultaneously challenging and rewarding.
These are the lessons I have learned as a patient that will guide my continuing practice as a nurse.
Patient advocacy is as important as the physical care nurses provide
The nursing profession is quick paced, requires diligence, and often seems as though the necessary tasks outweigh the available time needed for completion. Nursing care is prioritized, and we perform and engage in our roles to the best of our ability within the circumstances. However, it seems as though advocacy is one nursing role that can fall by the wayside in times of high pressure and limited time or resources. The importance of advocacy has been accentuated for me as I have learned to navigate the health-care system as a patient.
Starting from ensuring that I received the proper referrals and diagnosis, to strongly pushing for the most effective treatments, I have had to advocate for myself numerous times and in varied circumstances. I have delved into the research, have sought the experiential knowledge of others living with MG, and have ensured that I have become a key player on my health-care team. I have achieved success by employing my advocacy skills and knowledge of the health-care system, but it has left me wondering how others without these skills and knowledge can understand and engage in their care plans, let alone become active and have a strong voice. Patient advocacy is a role of the nurse that I previously underappreciated but has been brought to the forefront given my experiences.
Patient advocacy can be a challenging skill to master, requiring a growth mindset, a belief that abilities are not fixed and can be developed with focused effort. Here are some things you can do to be a better advocate for your patients:
- Although nurses cannot have knowledge of all health conditions, especially rare diseases, advocacy boils down to giving a voice to the patient — especially in situations in which they may feel powerless.
- Nurses who are early in their careers can incorporate advocacy into their care by speaking up on the patient’s behalf, educating the patient on their health conditions and associated treatments, and becoming a liaison between the patient and other health-care professionals.
- As nurses progress through their career and expand their advocacy skills, they can engage in continuous learning as they assist patients with unfamiliar health conditions to understand where and how an active voice will be beneficial.
- Through experience and self-education, all nurses can connect patients with resources and support systems and perhaps the greatest resource of all: empowerment when patients begin to advocate for themselves.
The patient is the expert on their illness, and health-care professionals can learn from them
An important role of the nurse is health educator, to optimize patient knowledge of their health conditions. Because knowledge is power, information enables patients to take an active role in their health.
From my experience as a patient, I now firmly believe that in addition to health educators, nurses also should occupy the role of a student and a continuous learner. Although nurses possess vast knowledge of a variety of health conditions, we can always learn more, especially from our patients. Individuals living with a rare or chronic illness understand the daily challenges and limiting factors derived from symptoms that health-care professionals cannot contextualize in the same way without living the experience.
Since my diagnosis, I have encountered numerous health-care professionals, all with different credentials and education, knowledge and experience, attitudes and perceptions. I have been included in and valued as a necessary component of my health-care team and treatment plan, but I have also experienced feelings of disbelief and dismissal from those from whom I sought help. In the time preceding my diagnosis, I was actively seeking answers to my symptoms, sometimes to be met with skepticism and incredulity, leading me to begin to doubt what I was feeling and experiencing. A growing lack of confidence in myself and my assessments led me to reflect on my own practice.
I am fortunate that I also had the opportunity to engage with exceptional care providers who worked relentlessly to organize the correct referrals and to obtain a diagnosis and corresponding treatment. Moving forward, I will never forget how I was made to feel as a patient, on both ends of the spectrum, and will incorporate these lessons into my nursing practice. In a mutual relationship, nurses and patients can learn and benefit from each other.
Reflection on the skill of critical thinking can improve health care
Critical thinking is imperative for nursing practice. Although critical thinking can be defined in disparate ways, it is fundamentally the ability to analyze data and observations, question previously held assumptions and opinions, reason and reflect, and make a clinical judgment based on all available variables. I challenge nurses not only to reflect on their ability to think critically but also to further evaluate the plausibility of finding their voice within a multidisciplinary, hierarchical team when their judgment indicates the necessity.
The consequential importance of critical thinking was personally emphasized during the lowest point of my illness experience — a crisis caused by weakened respiratory muscles. In the emergency department, I explained to numerous health-care personnel that my respiratory weakness will not be reflected in the oxygen saturation reading; it is caused by muscle weakness and is not an issue with oxygen exchange. Yet this was an instance in which I felt dismissed and separated from my role as an active member of my care. I felt as though focusing on the one parameter of blood oxygenation was allowing the health-care team to overlook the pathophysiology that would guide the appropriate treatment. Critical thinking in this scenario would have the health-care team look beyond one diagnostic parameter, involve the patient, consider all influencing factors, and make the most appropriate, evidence-based decision regarding care.
Conclusion
Although the experience with my illness has produced negative and challenging circumstances in my life, I also have viewed it as a teacher. It has helped me improve as a person, a parent, a friend and, most substantially, a nurse. We cannot control most of what happens to us, but we can control how we respond. Although MG is incurable and highly variable in symptom frequency and severity, it can be manageable with the right treatments. I am not symptom-free but have learned to structure my days to accommodate my limitations, and I look toward the future with optimism. I have taken the lessons learned as a patient and will proceed in my nursing career applying the knowledge gained and alternative perspectives.
I have a new lens through which to view the world, in particular patient care and the health-care system. Nursing encompasses ongoing education and professional development. How we gain knowledge and understanding can be as varied and complex as the nature of human beings. As the profession continues to evolve, each nurse must approach their practice with an open mind and a willingness to learn and grow alongside their patients.
I am proud to be a nurse and embrace the lessons I have learned from the other side of the health-care relationship.
April Fox, RN, works as a clinical nurse educator at Red Deer Regional Hospital Centre, Alberta.
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