I know, I'm late! I promised blog posts on Mondays and yet here we are, Tuesday evening. Well this one took a while because it's a work in progress about a situation that still has me reeling a bit. But I decided that I wanted to get it down somewhere so that I could reflect on it more.
The first week of my cardiology rotation we admitted an older woman who we will call Betty, who presented with heart failure. These symptoms tend to include (or at least the ones we ask about are) trouble breathing, lower extremity swelling, more trouble breathing when you lay down, and swelling in the liver. As I was just explaining to the second year medical students I am tutoring, heart failure is really a spectrum of heart dysfunction; the signs and symptoms depend on the location of the problem and the severity depends on how much the rest of the heart can compensate (and for how long).
When she arrived at the hospital, Betty was a widow of many years who never had children but had an extensive family in the area. She lived independently, even mowing her own lawn up until a year ago when she started feeling really awful, went to the doctor and found out that she had atrial fibrillation. Atrial fibrillation is when the top chamber(s) of the heart, the atria are beating too fast and too unorganized to send productive signals to the bottom chamber(s) of the heart, the ventricles, which pump blood through your lungs and into the rest of your body. It also has a spectrum, but atrial fibrillation makes it difficult for your heart to fill with blood completely because it's always beating.
At first, with Betty, we did everything we could to try to get her heart functioning again. Afterall, cardiology is a field where we have a lot of options for interventions and medications. We can control the electrical system of the heart with a pacemaker, we can control the pumping system of your heart with medications and other interventions. But we can't quite do it perfectly, especially if the heart has plans of its own.
Because she was in the hospital for so long, and had so many people working on her care, I designated myself her point person and tried to stay on top of everything. This wasn't always easy as lots of things happen without anyone thinking to tell the medical student, however important I might finally feel to this patient. But when she asked me to be in the operating room with her when she had her pacemaker placed, I said yes. When she asked if I would hold her hand while she had her dialysis catheter placed, I said yes. When she asked if I would examine her "down there" because no one had in a while, I did - and found she was bleeding and had stool leaking out of her vagina as well. When she asked if I would come see her in dialysis, even though she did not have enough energy to open her eyes, I did.
In our daily check-ins, Betty told me about her life, which mostly consisted of her living in her own mobile home and keeping track of everything she needed (up until a year ago when "it all fell apart"), spending time with her nieces and nephews and her grand-nieces and grand-nephews, and mostly getting along just fine. But she was always tired and while I tried to get her to eat, she would sort of humor me while I was standing with her, then I would come back later to see that she hadn't really eaten much at all.
Fast forward 20 days later - Betty is in complete renal failure with a catheter in her neck vein for dialysis, has had a pacemaker placed in her heart, is on several medications trying to get her heart to pump harder but slower, and other medications to get blood flow to her kidneys and help get the fluid out of her extremities and lungs so that she can breath. She starts bleeding from her vagina, made worse by the anti-coagulation (blood thinning) medications she is on to prevent her dysfunctional heart from forming clots that could pass to her brain and cause a stroke.
That's when she really started refusing things. Instead of just refusing her medications occasionally and not really eating much food, soon she was refusing exams, refusing to talk with certain members of the staff, refusing blood draws for labs, and x-rays to see if there was fluid building up in her lungs - along with refusing all her medications and all the food we gave her.
Some of the staff and our team were annoyed by her behavior, thinking - with reason - that if she was refusing our tests and treatments, what was she doing in the hospital at all? I agree - and ultimately, when she moved to a rehab center, it seemed like the the right move to our staff and Betty and her family. But I think she stayed in the hospital because she felt safe there. She thanked me again and again for taking care of her. She told me how great the staff were and how helpful everyone was in getting her better. It's amazing to me that she felt that way. Because I just can't help but think she may have been better off if she had just stayed as far away from us as possible. She is definitely a person that I'll think about when weighing the risks and benefits of treatments - and maybe make different decisions than the ones that were made in her case.