Having practiced physical therapy now for 32 years, with a Bachelor of Science and a doctorate of Physical Therapy under my belt, one would think I know a thing or two about what it means to be a good patient. But recently, after having been hospitalized for nearly 5 days for infarctions in both of my kidneys, with subsequent visits to specialists, I’ve been re-thinking a lot about patient care and what goes into being a good patient. There is a critical role a patient plays in acquiring optimal healthcare. It’s not just about being “nice” and doing what we’re told.
Having worked in health care for decades, I can tell you the shades of “pain-in-the-behind kind of patient”:
Oblivious to how hard the medical team works and what goes into care
Unaware of the constraints that are placed on the health care team by insurance and corporate, state and federal guidelines
Focused solely on needs and fears
Oh so demanding
As a physical therapist, I have thought a good patient is an individual who respects my education, my training and is open to my suggestions. And along with that, I truly appreciate it when my patient is curious and engaged in their care. They ask questions like, “What about this?”, “Why are you doing that?,” or, “What do you think of this?” Questions from a patient make me think deeper and help me be a better clinician.
The challenge of patient-hood
Now that I have joined the undesirable club of patient-hood, with an impressive array of tests and scans in my wake, I am reminded that being a patient means that something is happening that I don’t understand. This can make anyone fearful, and in some instances, despair. If we’re already prone to anxiety, then an illness, injury or new diagnosis can push us over the edge.
Fear is an obstacle to being a good patient. It is difficult to think clearly through fear. Generally, reactions from fear rarely lead to healing, but instead, attempt to protect us, hide us, and unfortunately disable us from receiving help. A better bet is to step back from the fear, recognize what is happening, and remain in that moment. Fear resides in and is generated by our amygdala, the primitive brain, the Great Reactor. The amygdala is not known for a reasoned, well-thought-out response, which is what you want in your healthcare, especially in your health crisis.
A good place to start in the art of being a good patient is embracing some good ol’ fashioned self-autonomy. I am responsible for my health and there is no need to be afraid to ask questions, especially if I am worried or confused, or just slightly unclear.
To help with this, it is good to have a template of questions to ask the clinician and if possible, have them written down. Keep them on my phone for easy reference. Otherwise, the rush and time constraints of the appointment can intimidate me and cause me to be forgetful.
Here are some good questions:
- Time questions: How long with this take (in all its forms: the procedure, recovery, rehabilitation, program)? When can I participate in normal life? How long do I have to be on this intervention (medication, activity restriction, exercise, etc.)?
- What’s the Goal? The desired outcome? And with it, what Effects and/or Reactions are possible? How will it make me feel?
- Optimizing questions: What can I do to offset negative effects and optimize strength/health (diet, exercise, etc.)?
- Complications: What drug interactions are possible? What shouldn’t I do/eat with this intervention? (I wish I had asked this question before my renal angiogram. I had no idea I’d be off exercise for another two weeks and was bummed.)
If I have received care and my symptoms haven’t changed significantly within a week, I contact my provider. For example, at the beginning of this illness, I was initially diagnosed with infection in both of my kidneys and prescribed Cipro. I felt better but was still having significant symptoms on day 4, along with new symptoms (a rash on my back, hypertension, and what felt like a blood pressure headache). I contacted my doctor who said, “That shouldn’t be. You should be markedly better. I’m getting a nephrologist involved. Call me first thing tomorrow.” I did and that’s when she urged me to go to Emergency.
If I have a non-urgent request, I can communicate through a patient portal online. I love this and generally hear back within the day.
If I have received test results and it’s been a week and I still haven’t heard from my doctor, I contact them with something like, “Hey, got the test results back. Where do we go from here?”
Good questions and the conversations that follow are great at setting fears to rest. Plus the conversations create a comradery and a sense that I am not doing this alone.
Facing my fear
Finally, another important tool for working through fear is using methods of prayer and imagery. For me, these are powerful weapons.
My first night in the hospital this past April, fear began its silent ambush. It was midnight, and I began thinking about what I did and didn’t know about kidneys. There is a lot I don’t know. Science has shown us that knowledge gives us confidence and can calm us, and the lack of knowledge can fuel anxiety. Both my lack of knowledge and my knowing just enough began dragging me in the wrong direction. “What if’s” were elbowing their way into my thoughts.
And then I saw it. In the upper left-hand corner of my visual field, I saw an image of my kidneys, with what looked like black goo descending over them from the top and spreading downward. A burning sensation of dread sickened my stomach.
But then, in my right visual field, I could see the image of Jesus sleeping soundly in the boat while a storm raged around him. His disciples were terrified by the storm, and awakened Jesus, exclaiming, “Master, Master! We’re gonna die! Do something!”
He arose, looked into the storm, and commanded, “BE STILL!” and it shut up like it had been smacked down.
So I took my cue, looked at my left visual field fear, and shouted in my head (lest I awaken my roommate), “BE STILL!!” Then I prayed for my roommate who I knew was highly anxious and very discouraged. And I prayed for myself. And shortly thereafter, fell soundly asleep.
There is a principle St. Paul teaches in 2 Corinthians 10:5: We take captive every thought to make it obedient to Christ. My understanding of Christ is that He is ultimately for our good.
Thoughts that are destructive are not “for my good.” Fears are destructive and taking them captive frees me from their control or influence. And that takes practice.
And being a good patient takes practice. From one fellow patient to another, these principles really do help.
- I am responsible for my own health.
- It is important to respect the learning and expertise of my provider(s).
- Asking questions and thinking critically enables me to optimize my healthcare.
- For me, trusting in God to care for me and comfort me is a precious cornerstone.
You’re amazing. I hope you continue to heal and thrive.
Thank you, Carol. I appreciate your encouragement. I am healing and thriving, and am grateful for my community that has been so supportive 🙂
So wise, Karen. Congratulations on your completion of the Tour de Whatcom.. Looking forward to seeing you in Kentucky and sooner, I hope.
sooner, we hope 😀
Fantastic rendition on being a patient… I read so much of your father in that and towards the end your mother as well. Amazing care of yourself and template for others… Gracias.
Thank you, Barb. Dad and Mom sure set the bar 😀 I appreciate the template you have demonstrated with your care of your health.