As the patent rolled in from cath lab he was smiling, happy and grateful. Maybe it was the fentanyl and versed? I mean, he’d just been told he was needing open heart surgery ….. in the morning. Looking at the images, he was a walking miracle or ticking time bomb depending on your perspective. Again, maybe it was the drugs, did he remember what they told him?
The previous nurse had already told me how nice he was. So, I only questioned his smile for a moment, reviewed quickly the scenario to make sure he did in fact remember what he’d been told and then realized he was just one of those patients. The kind that finds the soft spot in our hearts almost immediately. Sometimes it’s because they remind us of someone we know, sometimes we don’t know what it is, but regardless the reason there are some patients that just hit us differently. This was one of those patients and one of those days.
The surgeon showed up just after 5pm to sign consents and go over risks…. the usual. The usual for us that is. After 14 years this doesn’t phase me. But this wasn’t this patient’s 14th year of hearing the run down. This wasn’t “usual” for him. This was his first time. Alone, laying in bed, while a surgeon and nurse he’d just met stood at his side. One talking, quoting risks: stroke risk, overall risk of surgery and the difficulty of recovery itself. One staring at him. Both of us in masks. I thought to myself “I hope he doesn’t have hearing aids that need to be put in” as the surgeon said he’d call his kids to fill them in, in the morning and left the room.
Five minutes later it was all over. I asked how I could explain better and if he understood everything then finished up the consents. He said he thought he did but just wanted to make sure his kids understood too. He didn’t say anything about them not being there or make a complaint but I knew it was hard. I told him I had to finish up staffing for night shift and then promised I would call before I went home so he didn’t have to worry about it over night.
I ended up talking to one of his children extensively. He had so many valid questions. There are reasons this wasn’t a straightforward “let’s go for it” surgery decision for the patient.
Though the patient himself had decided, his kids still had questions and needed them answered. After the patient had spoke with his children he had more as well.
You see in the hospital, as long as a patient is “alert and oriented” (knows who they are, where they are why they are here, and the time/date) they are decisional. It’s their decision what procedures/surgeries are and aren’t done.
But think about this: How often you call your sister to see what paint color looks best on the wall before you change it? How many times have you posted a poll on Instagram about which shirt you should go with, the pink or the black? Most people don’t shop for their wedding dress alone. We need input from others and not just anyone, others who know us. Yet here we are asking people to make some really big decisions alone. Yes, over the phone families are involved but it’s not the same. It’s hard. We are asking a lot.
We’ve taken an already scary, abnormal situation and removed every familiar comfort.
Some of these patients aren’t awake. Some decisions are over the phone for families to make and that adds another layer of hard.
COVID didn’t press pause on all other diseases illnesses and emergencies
About a week into “social distancing” and homeschool, on a Friday, I received a message from a friend that her daughter was in an ER with an all over body rash, fever, vomiting, chills and cough. They ran blood tests, did a chest X-ray, the usual rundown. Eventually they tested for COVID and proceeded with transferring her to a larger facility.
This was the beginning of COVID screening. Everyone on high alert and tests results taking 3-4 days to post.
I had a knot in my gut as if I was overstepping but proceeded in messaging back with “they need to look for other things.” I was certain, after being at my job and seeing how incredibly overwhelmed people’s minds were with the possibilities of coronavirus there would be many cases of other illnesses mistaken and mistreated. After seeing a few pictures of the rash I was even more sure. I told my husband she does not have coronavirus!
Once at the larger hospital, she was assured that they were “sure” it was COVID. So I stepped back and said no more. (Occasionally I know when to keep my mouth shut...)
The following Sunday I received another text with pictures. The rash was evolving. I knew my friend was feeling helpless and desperate. Almost immediately I thought Stevens-Johnson Syndrome. Instead of texting what I was thinking (because the results that pop up on your phone after a search aren’t exactly comforting) I just asked if she’d recently started any new meds. About an hour later she text our group that they were diagnosing her with DRESS syndrome, which is a rare reaction to certain medications and includes a widespread rash as its main visible differentiating symptom.
Eventually her COVID swab came back negative, they narrowed her diagnosis down to Stevens-Johnson, and she was taken off isolation. But, since she had been on the COVID unit she wasn’t allowed to be transferred appropriately to the burn unit as they would have liked. She improved to a point she discharged to finish healing at home. Near miss.
Guilty until proven innocent
Similar to the story above but different in that we already know the issue at hand, patients coming in with a pretty clear cut diagnosis are being tested for COVID additionally.
An example of this: a patient coming in with clear symptoms of a heart attack but someone hears they’ve been short of breath (a symptom that often accompanies a heart attack) So what happens? Swab for COVID.
Then the cascade of events: put them on isolation as a rule out COVID even though we know if it’s found it will be an incidental finding. It’s not what brought them in. They stay on isolation and get medically managed until their swab comes back negative or become unstable and it can’t wait.
People are waiting.
This winter, in December specifically, a friend sought out care because of a particular vague set of symptoms. All which ended up being attributed a large cyst as a probable culprit. Jumping through all the insurance hoops took a good two months, but finally a surgery date was set for late March.
March…. just in time for Corona. Surgery was cancelled and rescheduled for late May. The cyst grew from baseball to grapefruit sized in about a month’s time and now she’s waiting until late May? She has a “grapefruit sized” (at least we hope it’s not grown past that) cyst that needs to be removed from her abdomen and she’s waiting.
This past week as the same symptoms are more persistent. Increasingly uncomfortable, she calls the doctors office and is met with, let’s do another test, maybe you have an ulcer, maybe this, maybe that. All symptoms she mentioned at the first appointment were met with “let’s get this cyst out.”
Now, without a single new symptom, she’s presented with a multitude of new possibilities that cost time, money and do nothing to fix the one problem she knows about. The original culprit that hasn’t been dealt with. The one she was supposed to have removed over a month ago.
Unintended consequences. We are facing so many.
The unintentional consequences specific to healthcare need brought to light both for consumers of healthcare and providers of healthcare.
Lost Comfort
In the case of my patient facing the decision of open heart surgery alone, I asked him if he would like me to pray with him, for him. He said “yes, that would be nice.” So I prayed. I prayed for his decision to be clear, for the surgeon, for him to feel God’s presence as he walks through this and for him to know he is not actually alone.
It always makes me nervous to do this. I wonder, “do they want prayer offered?” But I remind myself they can always say no and it’s the best I’ve got. It’s better than anything else I can do.
Pray with your patients if you can, if they want it. If you aren’t the one for that, find a coworker that you know is willing. We need to understand the families are struggling and at the very least try to be compassionate in our conversations. I’m hearing a lot about healthcare workers but this is hard on patients and families too.
Missed Diagnosis and Delayed Care
In the situation with my friend’s daughter, I wonder what would have happened without a little pushing and questioning? There were three days of waiting before the initiation of a proper diagnosis. In other cases we have a likely proper diagnosis but care is restricted because the other potential hasn’t been ruled out.
In both cases t’s almost as if guilty until proven innocent. The only problem is, there isn’t always time to wait. Often the problems people are coming in for need attention now, not later when we find COVID isn’t the answer.
Postponed Surgery
When does routine elective become urgent and urgent become emergent? Doctors, this is your call. You need to know where to draw the line. You have the right to request OR time when you have a patient that needs it.
Patients, health care consumers. You need to know when to advocate for yourself. If you feel like your concerns aren’t being addressed, push.
In the case of my friend. The hospital she is supposed to have surgery at hasn’t been close to full. In fact, staff are being called off and left home. There are plenty of ventilators. Where do we draw the line and start providing care again.
We must see clearly all that’s happening and rid ourselves of the tunnel vision this has caused.
This isn’t like a bomb going off where one second there isn’t a single victim and the next second there are hundreds or thousands. Also, this didn’t take over as a singular problem and stop all other problems we face from happening. We must not stop advocating for ourselves as patients and advocating for our patients as nurses and providers. It is after all, our job.
It is a doctor’s job to ensure a patient receives care not just put them off until someone says “ok” you can have OR time again.” If it’s becoming urgent you need to make a case to get it done.
We must be aware, both nurses and physicians of the other illnesses, diseases, injuries etc we have seen over our career and be prudent in our observation ensuring patients receive the right diagnosis and treatment. We can not have tunnel vision throughout this event.
We also must see our patients and families as people as we would want our family members, ourselves to be seen and treated. I’m not above this. I’m preaching to myself too.
These are just some of the unintended consequences that apply to the hospital setting. There are many others we face as a nation, some unintended I’m sure, others maybe more intentional. We all need to rid ourselves of the coronavirus tunnel vision and open our eyes to see the domino effect that focusing on just this one problem has had. To be continued….
So very true!