Helping Patients Participate In Their Care

When I had surgery in June, I was struck by radical differences in bedside manner between my perioperative nurses, anesthesiologist, and doctor. Some of these differences were due to variances in personality, but they also had a lot to do with training and medical specialty. As a patient, I felt like my role alternated wildly between informed and empowered participant in the process, and passive object to be evaluated, which made it hard for me to advocate for myself by asking questions or articulating specific concerns and needs. Most patients want to get involved in the process, but we need to be given tools to help us do so.

My surgeon met with me two days before the surgery for an examination and a detailed description of the surgery. He explained what he was going to do and how, and he talked about alternative approaches if the initial approach wasn’t successful. We discussed risks and benefits. He made sure I understood what we were doing and what the consequences were, and he confirmed that I was consenting to the procedure of my own free will, with no external pressures. He made me feel like an active participant in my care, and encouraged me to communicate with him about any questions or concerns I had, no matter how minimal.

When I arrived at the hospital, I was paired with a perioperative nurse who was extremely friendly and awesome, but also very professional. She made sure I knew what she was doing, why, and when, and she talked me through the process of being in the hospital, with information about how long I should expect to wait before transferring to the OR, and how much time I’d spend in recovery when the procedure was done. As she worked through my presurgical checklists, she tried to keep things fun, but also made sure she got the information she needed.

She also regularly checked in with me to see if I was too hot or too cold or uncomfortable in any way. As a nurse, she looked out after me physically, but she also empowered me as a patient by educating me and making sure I was able to articulate myself. She kept me comfortable, and regularly checked in to see if anything had changed. Critically, she warned me about some things I might experience when I came out of the OR, and explained why; for example, it’s common for O2 sats to drop in recovery because people are breathing slowly as they come out of anesthesia, so it’s not uncommon for a nurse to ask you to take a few deep breaths.

My nurse focused on demystifying the process of surgery and preparing me with tools I’d need in recovery. Her goal was to make me an informed participant at all stages of the process, and it’s a goal that worked. At every stage, I understood what was going on and why it was happening, and I was prepared for it; for example, she put the rails on my bed up after I got my Versed because it’s hospital policy to do so when a patient is sedated, and thus I wasn’t alarmed or put off by suddenly being trapped in my bed. When she handed me off to my circulating nurse for transport, I knew what to expect then as well. My nurses definitely fulfilled their roles as care providers.

My anesthesiologist, on the other hand, came in shortly before surgery to rapidly go through a checklist and have me sign some paperwork. I had to specifically prompt him to get any information about the anesthesia; my nurse had already told me about some of the things I would expect, for example, but the anesthesiologist didn’t volunteer any information or discuss alternatives with me. I had to ask him about all of that. As someone who tries to be rather informed about things, I already had the tools I needed to do that, but not every patient would.

And while I think patients should educate themselves and prepare for surgeries and other procedures, they shouldn’t have to guide their medical providers through every step of the way when it comes to getting information about an upcoming procedure. Providers should be doing some of the work there by volunteering information and providing resources to help patients empower themselves, because empowered patients tend to have better outcomes. Patients who take an active role in their care can perform better, because they can understand what they need to do, or can do, to help things go more smoothly; for example, I could take deep, even breaths in recovery without prompting because I’d been advised that my oxygen saturation might drop.

There’s a frustrating tension that exists between patients and care providers, and it’s sometimes more tense in some specialties than others. Patients are sometimes expected to be meek and compliant, while at other times they are chastised for not being informed and aware, and it’s hard to know when which behaviour is wanted.

And, as a bottom line, it’s difficult to understand why care providers would prefer silence to involvement when a patient who is communicating and participating is actively contributing to care; a patient who talks, for example, is providing information about side effects and unexpected sensations that might be important for a medical team to know about. A patient who has been told to be quiet might not mention a burning sensation around an intravenous line, while a patient who hasn’t been informed about the risks of some intravenous medications might not understand that such sensations are a sign of a potentially dangerous complication, and wouldn’t think to say something. In both cases, it’s the patient who loses out, because the medical team didn’t encourage and facilitate open communication.