I am now cath free, but still reflecting on my episode of care experience. Relevant background information:
- After months of persistent UTI symptoms and no answers, I had a great first meeting with the surgeon in January who gave me a provisional diagnosis, ordered an MRI, told me what the surgery would be if her provisional diagnosis was correct, and told me that the recovery would be 2-3 weeks with a catheter. Her quote from that appointment: “Most people think the surgery is a piece of cake, but that the catheter is what they can’t wait to get rid of.”
- I called the office with follow up questions shortly after my first appointment (I was having lower abdominal swelling – is that normal with a urethral diverticulum?). I left a voicemail message on the machine. I never heard back.
- As the surgery approached, my pre-op appointment was performed by the nurse practitioner. I had a lot of questions – at this appointment I asked how long I would have the catheter in, the NP said 1 week to 10 days. I did not get clear answers to my questions regarding physical activity or fitness; the NP said that it was such a short period of time with the catheter in that I should just take it easy. There was no physical exam, just the signing of some consent forms. I never saw the surgeon.
- After my pre-op appointment at the urologist’s office, I went to the hospital for a pre-op appointment; they had my surgery scheduled for a different start time. I realized that the urologist’s office never confirmed the time or date of my surgery. I called and left multiple messages on multiple machines – a repeat of my questions regarding physical activity and length of catheter duration, as well as messages confirming the time of my surgery. It took 3 days, messages on multiple lines, feedback on their website, and an email for me to get a call back.
- When I spoke with a nurse on the phone regarding my surgical questions, she answered that I would likely wear the catheter for a week.
- When I spoke to the surgeon immediately before surgery, she told me I would wear the catheter for 2-3 weeks.
- I have been completely miserable, in pain that has kept me from standing up to do so much as fill my own cup of water, for the last 8 days.
So, with that, I attend my post operative appointment at the urologist’s office. The nurse who takes my vitals asks me how I’m doing – I complain about the catheter, about the pain I’ve been in, particularly the bladder spasms. She smiles and tells me that it’s likely the catheter will come out today. I am intrigued.
I see the NP who did my pre-op appointment, and she examines me, telling me that although she didn’t know what it felt like before, things seem to be healing well. She asks me how I’ve been. I tell her that I was prepared for it to be bad, but it has been worse. She listens and tells me that it will likely come out today, we just have to wait for the surgeon to check. I start to really believe that this will be the first thing that has gone right in what seems like an unreasonably long time. She leaves the room, with me still naked from the waist down waiting on the table.
(Not posed. Harry Potter pulled me through some dark days, half naked or not.)
She comes back in 15 minutes later and tells me that the surgeon is stuck in traffic (my appointment was at 7:30, I have been in the office since 7:20, it is now 8:20) but that the surgeon said I still needed to wear the catheter for two more weeks before I could schedule the imaging to confirm that everything is healed. Devastated is an understatement. She is kind, and spends time listening to my concerns and promising me more anti spasmodics and pain medications, before telling me that I can get dressed to wait for the surgeon to talk to me. I am crying.
The surgeon enters around 8:40. Her face is blank and unmoved by my tears. I try to explain why I’m crying – I’ve been laid up, I’ve really been hurting, I’ve talked to multiple people in her office who have told me that I wouldn’t have to wear a catheter for the full three weeks and I got my hopes up that my misery was coming to an end. She tells me that we talked about this – people don’t mind the surgery, it’s the catheter that bothers them. (I can’t help but think that the catheter is a bother the same way that a root canal is, or a gunshot.) She continues to look at me unphased, and I’m feeling a bit like my tears are an annoyance like the traffic that made her 40 minutes late. I hate that I’m still crying and upset, and try to make a joke about being a “needy patient”, and explain how I’ve talked to several members of her office staff who told me to expect less time with the catheter (to the extent that not 20 minutes before, the NP was prepared to pull it out.) I say something about having spoken to so many people because I’ve been scared, and have felt a bit dismissed due to everyone that I’ve spoken with expecting that I would wear a catheter for one week – not three. She cuts me off. “Well, I can’t be around to talk on the phone all the time”. She says. “I’m the one who did the surgery, and I’m the only one that saw what the repair looked like. 2-3 weeks of catheter wear is average for this type of surgery and your diverticulum was about average.” She goes into a long explanation about how most people who come into her office have to wear a catheter – it’s how the urinary system heals, and it’s normal to her office staff. She compares it to someone being annoyed at having to wear a cast for the first time, but the doctors and nurses who take care of broken bones not being phased by splints and casts.
It’s clear that she hasn’t grasped my intended message – it’s not that I’m complaining about the catheter and telling her that I wish she had been around to chat on the phone and hold my hand. I am merely trying to offer her patient perspective and feedback so that she doesn’t have crying patients in her office in the future – and I tell her that (albeit through broken sobs and furious eye wiping). “Well, OK.” she responds. “I guess this tells me that I need to give my staff some more education.” Come on now, was that so hard?
From the patient perspective I think it’s pretty clear how we ended up with me sobbing, half naked, in an exam room surrounded by plastic prostate models. I was given conflicting information from multiple sources after having to do everything shy of sending a smoke signal to get any information at all. I wasn’t adequately prepared for the impact that the procedure and recovery would have on my life. I had a brief feeling of glimmering hope after many weeks of darkness and fear, only to have it snatched back at the last moment. But what about the practitioner perspective?
First and foremost – she is the surgeon. She is the one who saw what the tissue looked like inside. She is responsible for my outcome. (Was the time where I was upset in her office the best time to remind me of that? Perhaps, perhaps not.) What left me so frustrated that morning was not the decision being made about my care, rather the communication surrounding the decision made about my care. While I think that in some circumstances, comparing catheters to casts could be useful (by making them less scary, by explaining their necessity and purpose, for getting patient buy-in) I think that the underlying premise of her explanation (defensive monologue) was this: that because these tools (catheters, casts) are normal to care providers that they have no responsibility to acknowledge the novel nature to their patients. She basically defended a case of providers lacking empathy, with no consideration to meeting patients where they are, all the while minimizing the impact of my subjective experience on the quality of my life.
Ignoring patient’s subjective experiences can take lots of forms – in this example it is the justification of a dismissive attitude from staff regarding something the patient was worried about. It can look like providers not taking the time to educate their patients on what to expect during their episode of care. It can look like blaming the patient when their recovery doesn’t progress as the practitioner expects it should. It can look like ignoring a patient when they express 10/10 pain. It can look like calling a patient difficult or needy when they request information about their healthcare at a time that is inconvenient for you. Surgeons get a bad rap for this sort of jaded approach, but the fact is that detachment knows no professional bounds. I would assert that it’s easier to become skeptical than it is not to, and I am filing this experience away for future Krystyna, DPT: only a concentrated effort to listen to patients, and an intentional dismissal of my own ego will allow me to meet my patients where they are – which happens to be the best position to help them get to where they want to go.