3-4-2022 "Your healthcare team has failed you"

 (Tricia)

"Your healthcare team has failed you." Those were the words that the palliative care team--a nurse and a social worker--used when they visited Ed and me in Linda's room on Wednesday to let us know what the possible options are for Linda's upcoming care. The statement both knocked the wind out of me and confirmed my own assessment. Linda's orthopedic surgeon and his team have failed her every step of the way. And while the palliative care team was referring to Linda's hip replacement surgery, I think the sentence applies to every doctor that Linda has had for the last five years. 

As Marilyn noted, Linda was readmitted to the hospital after we visited the office of her orthopedic surgeon, Dr. M., on Monday. Her incision started oozing last Thursday, and NHC informed Dr. M's office on Friday. Obviously, this unfortunately all happened just before his office closed for the weekend.

When we went to his office on Monday, I don't know what I expected, but I didn't expect her to be readmitted to the hospital. If the wound was infected, I thought a course of antibiotics would be required. But no. When you read about prosthetic joint infections (PJIs), they occur in only about 1% of hip replacements, and the first sentence of nearly every research study on PJIs includes the word "devastating" to describe them. They are particularly devastating to the elderly or to people with underlying health conditions, and Linda unfortunately falls in both categories.

PJIs are also incredibly painful. Linda is now lying in a hospital bed unable to move--when the nurses have to come in to clean her or the doctors to examine, she screams in pain. But how did we get here?

It started with Linda's first surgery on January 14, in which Dr. M. replaced her hip.  In that case, Dr. M. did not come to us before Linda's first surgery to lay out exactly what this surgery was, what the potential complications were, and what we could expect in follow-up care afterward. The only introduction I received to the nuances of partial hip replacements was from the "Ortho-on-Call," and he painted a rather rosy picture of the surgery. He started by explaining that the surgery was necessary to alleviate Linda's pain after her fall. That was very true. I am not disputing that the first surgery was needed. However, he then told me that Linda would be able to begin her therapy within two weeks and after that, with therapy, she would be able to begin using a walker again.  

At no point did Dr. M or Ortho-on-Call explain the very high risk of infection, and the "devastating" impact if a PJI occurred. At no point did Dr. M. sit down with us and walk us through the surgery or explain what we should do if Linda encountered problems. In fact, I think I shared in a previous blog, that on January 14, I got to the hospital around 10 a.m. because they had told me the night before that Linda's partial hip replacement surgery was scheduled at 12:30 p.m. I arrived only to discover that they had already taken Linda to pre-op...she was minutes away from being taken to surgery when I ran into the room. Dr. M. then spent less than five minutes with me before Linda was wheeled away to discuss the surgery. At that point, he told me that, in fact, Linda might never walk again. That was certainly different from what Ortho-on-Call had said.  

After her first surgery, Linda wore a special dressing that was not to be removed for three weeks. I believe it had antibiotic properties and was meant to protect the wound from infection. However, that meant we did not get a good look at Linda's incision for three weeks. When the dressing finally came off in early February, it looked red to me, but I assumed that was just normal.

However, here's where things went downhill. By mid-February, the incision was only getting redder and puffier. I showed it to one of the nurses telling her that it didn't look right. She said, "Oh, that's probably just surface irritation from the dressing."  At the same time, Linda was screaming in pain while doing her therapy--nothing like what we had been told to expect. It was then I called Dr. M.'s office the first time, to tell them I thought something was wrong. The response of his nurse practitioner? "This is normal healing."

The following week, the incision was puffing out and was warm to the touch. Linda was in even more pain. So I called Dr. M's office again, to say that I really thought something was wrong. The NP called me during Linda's therapy session as I was hearing her yell in pain and ask to sit back down. I told Dr. M.'s NP that "Linda is complaining of extreme pain and she cannot put weight on her right leg and it's now more than a month after surgery. I don't want to dismiss that as being part of her brain injury if there is something really wrong. I don't know what to do."

Her response: "We're in the same boat as you, really. There's nothing more we can do for you." Those were Her. Exact. Words.  I hung up on her, I was so angry. I didn't know what my next steps should be.  A couple hours later, she called back "because she didn't want to end the call like that."  But she didn't apologize or offer any other plan of action.

For the ten days after that phone call, Linda continued doing her therapy, and even seemed to be making some gains. I started to hope that perhaps things actually were going to be OK.  But by last Thursday, Linda's incision started weeping. In Dr. M's office on the following Monday, as his NP and another nurse helped Linda stand, he squeezed out a great deal of pus from the wound, indicating infection. He told me he was going to begin antibiotics and schedule a "washout" for Thursday. He left and then came back into the room to tell me the ER was waiting for us. Then Dr. M., the NP, and second nurse just left us sitting there in the exam room, without further discussion or even pointing the way to the exit. 

What's shocking is that, when you read Dr. M.'s 150+ Google reviews, they are overwhelmingly positive. They talk about his "compassion," "great communication," and "wonderful bedside manner."   Instead, we got the same doctor as those writing the small handful of one-star reviews, who talked about his condescension, bad communication, rudeness, and lack of caring. When I read the many, many five-star reviews after the fact, I thought, "Wow, where was that guy? Sounds like we would have loved him." Unfortunately, we got the "other" doctor.

In that moment, he did not explain to me what a "washout" was. It sounds fairly benign, doesn't it? In my head, I thought he was just referring to washing out the wound with intense antibiotics. In a sense, that is true. But what I learned after we got to the ER, when I asked Dr. Google (who was much more forthcoming than Dr. M.), a washout is actually entails debridement, antibiotics, and implant retention, or DAIR. The surgery is then followed by a six-week course of intravenous antibiotics. It is a surgery that is just as invasive and with the same level of recovery required afterward as the initial partial hip replacement. And while the incidence of infection recurrence can be low for most people, for someone in Linda's compromised condition, the chance of reinfection is high. 

Even with all of the trouble we've had with Dr. M., we had planned on going through with having him do the washout on Thursday, because the situation seemed urgent. But then on Wednesday, Dr. C., the infectious disease doctor working on the case with Dr. M., had scheduled a hip aspiration for Linda. This procedure involves a radiologist using a needle to go into the affected hip and extract fluid so that they can better identify the infecting organism. This allows them to know with more certainty what antibiotic to use.

Originally the procedure was scheduled, without my knowledge, at 7:20 a.m. I hadn't realized they had scheduled it until I saw it hit Linda's online patient chart at around 8:00. Once again, they were planning on taking Linda to a procedure requiring a signed consent form without me present. But when I arrived, her nurse told me that Linda had refused her medications that morning, including the med that controls her atrial fibrillation. As a result, her heart rate had skyrocketed, and they had to reschedule the hip aspiration for the afternoon. I was able to get Linda to take her meds, and about an hour later, her heart rate came back into the normal range.  However, they still transferred her to the cardiac floor at this point, because "ortho doesn't want to deal with racing heart rates," as the cardiologist on call explained to me.

So, Linda got settled into her new room on the cardiac floor, and a few hours later, they came to get her for the rescheduled hip aspiration. I went down to Radiology with her to sign the consent form. The radiologist and tech then told me that I would have to leave the room during the procedure, so I took that opportunity to go to the cafeteria to grab some lunch and take it back to Linda's room to eat.  However, I was only able to sit down and take three bites before Radiology called me--the tech explained that Linda was refusing the procedure and asked if I could come down right away.

When I got there, Linda was on the metal table, crying out that she didn't want to do it. I asked her why, and she said, "because I don't think this is going to make me any better."  I asked the tech and radiologist if the test was absolutely necessary for the surgery, and they said no--it was only to identify the infection, which could be done during the surgery. Linda was so distraught, I then asked, "Linda, do you not want this procedure, or do you not want the surgery?"  And she said, "Both. I'm done."

That took the wind out of me, because of what it meant. The surgery is an awful prospect, but without it, the infection in her leg will worsen, the pain will continue unabated, and the condition will most certainly take her life. We are under no illusions that Linda's life expectancy was shortened considerably when she broke her hip. However, under palliative care, the end would come far sooner, because simple intravenous antibiotics alone would not be enough to clear the infection.  I was crying as the transport person, a lovely man named Javier, took Linda from Radiology back to her room. After he got her settled, he told us both that he would be praying for Linda. 

And then, before he left the room, he pointed to me and said, "You need to take care of yourself. If you don't take care of yourself, who is going to take care of her?" That was incredibly sweet. We might be facing challenge after challenge in our healthcare system, but the healthcare workers who have helped care for Linda have been largely fantastic. They are just working in a crappy system that doesn't give them the support they need to provide the best care, which has been so incredibly frustrating.

I know this post is getting long, and so much more happened. But I will try to be more concise below than I am above! The palliative care team came in right after Javier left, and they heard our story about what events had brought us to this point. It was at this moment that they said, "Your healthcare team has failed you," and offered as much sympathy as they could. 

We then discussed what palliative care would mean for Linda--she would have control over how she wanted to be treated and be kept comfortable. But during this conversation, Linda said something that surprised us all. She said something along the lines of, "I'll do the surgery, just not with that doctor. I don't like him, and I don't trust him."  I hadn't heard Linda state herself so clearly since coming out of the anesthesia in January, and I didn't even realize she had noted Dr. M. at all. I'm guessing the CT scan in his office on Monday had been traumatic enough for her that it left a memory, or at least an impression, of something she no longer wanted any part of.

The palliative team then left, after telling us to call them with any questions. Soon after, first the hospitalist and then the infectious disease doctor came to Linda's room. Both tried to talk us into sticking with Dr. M, because, as the hospitalist put it, "he was the ortho doctor everyone comes to to fix other ortho doctors' mistakes." The infectious disease doctor told us that Dr. M. is Mo-Bap's "hip guy" and "the best at what he does," and that he wanted to see Linda's case through and make things right. But that completely glossed over the fact that this was his mess he was cleaning up. Anyway, it didn't matter. Linda refused to entertain it, and the doctors eventually relented. 

So, at Dr. M.'s suggestion, they reassigned the case to a new ortho surgeon, Dr. S. The man actually came to Linda's room and talked with Linda, Ed, and me for a good 45 minutes about Linda's situation, the surgery, what he was going to do, and what we could expect. We also discussed the failed hip aspiration, and he explained that it was very likely that the hard table caused far too much pain in Linda's hip, which was why she was so adamant for the procedure to stop--and he said he didn't blame her. We really liked him.

Dr. S. probably spent four times more time talking with us and Linda in that session than Dr. M. had spent talking with us since he took Linda's case January 14. Dr. S. also told us that if his staff had treated me like Dr. M's staff treated me, he would be furious with them. He reiterated that Dr. M. was great at what he did, but agreed that if our confidence in him and his staff was lost, there was no choice but to ask for a different doctor.

However, he explained that there are downsides to switching surgeons midstream like this. For one, he uses different hardware and surgical techniques than Dr. M. He said that those differences "wouldn't stop him," but still, it worries me a little.  Plus, he has a full schedule of surgeries, and at the time of our conversation, he wasn't certain when he could add Linda to his lineup. But he assured us that Dr. M. would be doing all he could to help and they would do the best they could to work Linda in. 

We just got the call today. Her rescheduled surgery will take place at 7:30 a.m. tomorrow morning (Saturday), and they will come to her room to take her to pre-op around 6:30 a.m. We think Dr. S. and Dr. M. made a special effort to get Linda in quickly, because she is in so much pain. Now, we just have to hope beyond hope for a positive outcome. Please keep sending your good thoughts to Linda--she could use them right now.