I recently spent a few days visiting a relative in the hospital. Fortunately, all is well for her, but observing intense medical care as the visitor for a change gave me time to think about what it means to be a “good patient.”
While considering this issue, I learned that the notion of “good” or “bad” patients is the subject of some debate and scholarship in the medical community.
For instance, in a study of HIV patients (who are similar to multiple myeloma patients in their repeated visits to clinics over long periods of time), researchers discovered that trying to be a “good patient” is one of the only things in the treatment experience that patients can influence in their favor, and that doing so often led to positive treatment outcomes.
As myeloma patients, especially those of us receiving long-term maintenance, we develop ongoing and sometimes long-term relationships with our medical team. Actively nurturing positive and productive relationships must be healthier for us.
Some people hold the mistaken belief that a “good patient” is quiet, doesn’t complain, and submits to his doctor’s directions. I don’t believe this, and it isn’t supported in the literature.
I don’t want to sound self-congratulatory, but I think I’m a good patient, and I think some of my recovery is due to this fact.
Perhaps one of the hardest things to do as a patient is following doctor’s orders. The recommendations often require us to alter the way we enjoy living. Whether it means changing our diet, taking medications, or adjusting our daily habits, we generally don’t want to change. Change is inconvenient, and in the case of medical care, it can be unpleasant.
Following doctor’s orders can also feel like surrendering to the illness. If I don’t really feel sick, following doctor’s orders seems like an admission that I’m sick.
No matter why or how much I want to ignore the directions of my medical team, doing so is fundamental to achieving a positive recovery.
Perhaps I put too much faith in medicine, but I like to think my doctors and nurses know more about my disease and treatment than I do. They have my best interest in mind. I’m foolish if I choose to ignore them.
I don’t, however, turn complete control over to my doctors. I can only trust they are giving me the best advice if I participate in the process and understand the instructions.
At first, I thought being a good patient meant avoiding being viewed as a complainer. There is a natural instinct to want to look tough, to be brave. This is totally wrong. I’ve witnessed too many patients try to “tough it out,” only to see their ailment become more serious and consequently more difficult to treat.
I tell my team everything. I disclose every ache and pain, funny rash, and bump or bruise. The key to reporting to my doctor is being honest about what is happening and how I feel.
I’m not afraid of being judged for my disclosures. Perhaps the ache is nothing, but if it bothers me, I will report it without hedging how it makes me feel. I trust my doctor to balance the irrelevant and relevant information. If the doctors have a complete picture of what is happening, they can make better recommendations.
It’s also acceptable and necessary to ask questions. Parents know that when children are always asking questions it can get annoying, but that is how they learn. Most patients didn’t go to medical school, and we are “children” when it comes to knowledge about multiple myeloma. I don’t worry about being annoying; I ask questions because I want to learn.
Along with asking questions, I find other ways to educate myself. I spend a lot of time reading and learning about multiple myeloma at websites like The Myeloma Beacon, and I’ve attended a local myeloma education forum. If I educate myself outside the doctor’s office, I will better understand what is being said inside the office and ask better questions during those conversations.
I always try to be a patient patient. For instance, I’ve learned that a consistent bottleneck at my treatment center is the pharmacy. When I have an infusion appointment, I’m typically brought back for treatment on time. Because of the medication’s short half-life and significant cost, it is only mixed after a nurse checks me in. Consequently, I know I will wait at least 30 minutes before the infusion will begin. When the pharmacy is busy, it’s a much longer wait.
My medication won’t arrive any faster if I yell at the nurses or make a scene. My time in the clinic will only be more unpleasant if I raise my own stress level and become belligerent with the people responsible for my care.
I will advocate for myself when there is a failure in the system. Instead of taking it out on nurses, who can’t immediately fix the system, however, I inform the doctors and administrators who are charged with making the system work.
If I’m polite and bring a positive attitude and professional demeanor into all of my appointments, I expect it is much easier, and hopefully more pleasant, for my treatment team to work with me. The lines of communication are open, honest, and productive. This won’t happen if I force my care providers to be defensive and want to leave my room as quickly as possible.
My golden rule is to treat my care team with the same respect and professionalism I expect them to provide to me.
Cooperate. Communicate. Be polite. The more I think about it, being a “good patient” is a lot like being a “good person.”
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Photo Credit: (c) 2013 Mark Pouley
This image, “Sunset Perch,” is the result of much patience and planning. I live near Kayak Point on the shores of Port Susan and have taken hundreds of photographs there, especially at sunset. I’d long envisioned a photo of the sun setting behind the pier with the local cormorants perched on the posts, but it never materialized. After many previous visits, this image presented itself, and I was in the right place at the right time to capture it. The cormorants even posed just long enough to complete the photo that I’d imagined for years.
Lens on Myeloma 