I aspire to be a ‘5-star patient’ on my rare disease journey
Committing to actively participate in care benefits everyone involved in process
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Are you familiar with the website Healthgrades? The site allows patients to search for medical professionals and lets them rate their experience with a specific provider. The ratings, or grades, range from 1 to 5 stars. You can read about other patients’ experiences before making an appointment.
When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, I had the great fortune to be referred to Steven Nathan, MD. I learned his name and reputation were well respected in the advanced lung disease community. In that diagnosis appointment, he laid out a plan, and we followed it.
Key to the plan was a commitment to actively participate in my care. Participating in my care was not a single task. I had to be present and on time for appointments, whether they were at the clinic or for tests. I worked hard in pulmonary rehabilitation and demonstrated a good effort. Finally, I had to communicate with my care team. I had to share what I was experiencing, whether it was side effects from my medication or demonstrating an understanding of the next steps my team needed me to take.
Arriving on time for an appointment or test is important
What if a similar website existed to allow medical professionals to rate patients? When you called to schedule an appointment as a new patient, the person taking the call could enter your name on a website. The website would return a patient score. A patient score of 5 stars would indicate a high likelihood of being a desired patient. A patient score of 1 star would indicate that the patient may require more time from the medical office and staff.
While this type of rating system doesn’t exist, I still conduct myself as if it did, striving for the highest rating or score. I want to be a low-maintenance patient who makes my care team happy when they see my name on their schedule.
Arriving on time for an appointment or test is important. Not doing so could create a ripple effect on the provider’s schedule for the rest of the day. Each successive appointment becomes later. This affects not only the medical provider, but also other patients behind you on the schedule.
Being the best patient is my responsibility
Be prepared for your appointment. In a typical appointment, a medical technician will take me to an exam room and check my vitals. A nurse will come in to review my medications, get updates on any tasks I have completed, including appointments with other providers, and compile a list of medication refills I may need. If I have questions for my care team, I arrive with those in hand to discuss. The nurse can share this information with the provider before my time with them.
Before my bilateral lung transplant, I would see one of the pulmonologists in the clinic. Today, nearly five years after receiving an organ donation, I see an advanced practice provider, such as a nurse practitioner or physician’s assistant. Their time is valuable. Arriving prepared for my appointment benefits everyone.
If I were writing the evaluation criteria for patients, it would include the ability to follow directions. On more than one occasion, I have seen people arrive for a bronchoscopy or heart catheterization only to tell the nurse they had recently eaten, which meant that the procedure had to be rescheduled. The patient directions for preparing for procedures requiring anesthesia are mandatory.
The role of the patient can be a lot to take in. Take notes or ask questions if anything is unclear. I make it a habit to review the appointment instructions in MyChart. There is often more information than to arrive 15 minutes before your appointment. Does the lab appointment require fasting? Can I wear jewelry during a MRI appointment? Learning the answers to these questions is all part of being prepared.
If there were a way to score my performance as a patient, I would always want a five-star review. In my view, being the best patient is my responsibility. Achieving such a rating would be another example of my desire to make every breath count.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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