Be “That” Patient

Nobody wants to be a complainer, or that patient who stalls the start of a procedure because of last-minute concerns. Especially those patients who happen to work in healthcare or have a close relative that does. We strive to be the perfect patient, the perfect caregiver with a head-nod directed toward the provider, indicating we agree and understand everything. We dispense grace and justification when something is not clear, or we regrettably overlook inappropriate statements that are overheard when the provider believes they are out of earshot. Maybe this is not you. Maybe you are a strong self-advocate who asks questions and takes an extra 10 minutes with your provider even when you know there is an operating room full of staff waiting for you, or that the doctor is one hour behind in his schedule. I hope this is the case for most people. But for those who don’t want to “inconvenience” their medical team or “be that patient,” I urge you to rethink your position.

 My husband Todd was a patient at a large hospital system in Charlotte, North Carolina and was being “cared for” by the area’s predominate cardiology practice. Historically, we experienced great care from them, until this time when we didn’t. On this fateful occurrence, an upgraded pacemaker implantation was scheduled by a cardiology nurse practitioner when we’d been told “it is too risky” by the cardiologist. The cardiologist who performed the upgraded pacemaker procedure was overheard saying “It’s too bad I’m not doing this for someone it might help” minutes before my husband was wheeled into the catheterization (cath) lab. At discharge, following the outpatient procedure, my husband experienced excruciating pain between his shoulder blades and was discharged with this pain. He returned to the ER the next day for ongoing pain and shortness of breath. A perforation to his heart was noted on the cat scan, resulting in fluid accumulating around his heart. This is a potentially life-threatening complication. The team took him back to the cath lab the next day. The problem was corrected during a grueling 4-hour procedure when the pacemaker wires were pulled from him, and new wires were inserted. The nurse practitioner who scheduled the upgraded pacemaker came into Todd’s room afterwards, declaring “I guess this is all my fault.” After three more days of observation and rest, he was “stable enough” to be discharged and a blood thinner was restarted.  We went home, and he nestled into his recliner, cozy and happy to be home, but still feeling poorly. The next morning, he was miserable. He was vomiting, had the ongoing, severe, recurring pain between his shoulder blades and was short of breath and pale. I called an ambulance, and we went back to the ER.

 We arrived at the ER at 10:30 in the morning. The process to evaluate him and provide the proper interventions for treatment proceeded at a snail’s pace. We were told at 12:30 he very likely had “pericardial tamponade,” a potentially fatal complication if not treated promptly, which translates to an abnormal volume of blood that had accumulated between the heart and the sac in which it is contained. At 1:30pm, a bedside echocardiogram was performed with a cardiologist (not the one who performed the original procedure. We never saw him after the initial fateful procedure) in attendance. The cardiologist said that there are two things that are true emergencies in the cardiology field. One of which is a heart attack, the other is pericardial tamponade, which was now unquestionably confirmed. He said the intervention team would be dispatched and they would get Todd to the catheterization lab as quickly as possible. Meanwhile we waited. Todd’s blood pressure was dropping, and he was having difficulty breathing. He went into cardiac arrest at 3:00pm, just as the intervention team and another cardiologist arrived. They were not able to save him.

 This is a difficult story to write and tell. I have felt immense guilt for not speaking up and acting when I had the chance. Todd never questioned his caregivers. He had implicit trust in his team and me. And I, having a strong working knowledge of how things work in the medical field, did not want to rock the boat. I made excuses for them, felt that my presence was enough for the team to act appropriately. Sadly, it was not. I failed my husband.

 Be “that” patient. Be “that” caregiver. Ask questions. Report concerning actions. Act on your observations. If you have a question, ask. If you overhear something, report it. If something doesn’t feel right, act. Ask. Report. Act. There are no “routine procedures” in healthcare. Your interventions on behalf of yourself or a loved one could save their life. I will have more posts that discuss the details of my husband’s experience. There were so many junctures where the ship could have been righted, but there was utter failure. In the healthcare world of documentation, “If it didn’t get charted, it didn’t get done.” Mistakes are never charted.

 Stand by. More to come.

 In Memory and with Honor for my Beloved Husband, Todd A. Lowther

 March 13, 1947- October 31, 2021