Have you ever had a loved one receive a spine chilling diagnosis? One that took your appetite away and kept you awake for an ungodly number of hours (days) as you manically (desperately) searched for answers. Upon hearing the news you felt the color drain from your face and yet suddenly… all eyes are on you – the family’s beacon of hope. As the lone healthcare worker of the entire extended family, suddenly the entire responsibility of understanding the situation, asking the right questions, and making the right decisions falls solely upon your shoulders.
To say that it is a heavy burden to carry is an understatement. We step up to the plate because we have to. We have to be the source of strength and support because without our ability to understand and assess situations we realize our family would have a much harder time getting through such a difficult time. So somehow our medical brain kicks into gear and navigates the boat through murky, oftentimes unknown, waters.
Then sets in the denial. We go into flight or fight mode which numbs our emotions as we intellectually and logically power through each day trying to ensure that our loved one gets the most timely and best care possible. We meticulously pour over the smallest of details to ensure no stone is left unturned because they must get better.
And… what to make in situations of mistakes made by their care team. The delays, the potentially bad decisions, sometimes even misinformation and incorrect guidance from professionals within your own fraternity that makes you wonder how they earned their seat! Rage! As you catch and correct these mistakes you feel a sense of bewilderment because what if you weren’t here to rectify what was being done wrong? Would your loved one have had a different kind of [negative] outcome?! That thought alone makes your heart momentarily stop in it’s tracks.
It’s only after resolution of the issue that we are able to take a small breath of brief relief while everything we had been denying ourselves comes crashing through. We catch a moment to think… to analyze. The what ifs. The tears. The fear. The knot of anxiety in your stomach even though you know the worst is behind you.
How I envy those who come from families filled with medical professionals. They have one another to lean on. One another to ask questions to… to discuss plans with. A plethora of resources and most importantly- an abundance of BRAINS to put together to come up with the most appropriate solutions.
But not for those of us who are lone warriors. No, we fight the battle alone for our loved ones, and when we’re done we are left to face our emotions alone because in the end, while everyone else is living in blissful ignorance, we alone know the reality of what the alternate outcome could have been.
Recently a loved one of mine developed a pretty serious infection. One that needed emergent attention after months of being blown off and neglected despite them voicing concern. Malpractice aside, they were sent home on oral antibiotics with a follow up for 8 days later. 8 whole days later with zero instruction about what to look out for. Despite antibiotics the infection kept spreading and they kept getting sicker, but because the “Doctor’s word is God’s word” they never thought to question the growing ailment because they weren’t told thoroughly what to look out for. What kind of practice is that?! On a casual video call with them, It took me seconds to note that a visit to the ER was necessary… so what exactly had their physician missed??
That night my loved one became septic and had a Rapid Response called on them (this is an emergent situation) as their blood pressures tanked. I can’t even imagine what would have happened if I hadn’t casually called by chance. While visiting them in the hospital and meeting with the medical team the number of misinterpretations of labs, and mistakes I encountered was sickening. I am a part of this fraternity. I do my job with 100% due diligence and am so thorough because I don’t want someone to get hurt because of my oversight. Most provides I know are the same so I don’t want to tear down the medical community, however it is frightening to realize that a few careless apples slipped through.
How do we teach vigilance to those who never studied medicine? How do we insist that everyone looks into their own health and disease states? How do we ensure they ask the right questions and advocate for proper timely care? I was mortified at one point as a doctor with horrible bedside manners snapped at the patient saying “YOU AREN’T IN MEDICINE YOU DON’T UNDERSTAND”. I’m so thankful to have been there that day. “But I am” I responded, “and you are doing this wrong”. To try and suppress an already scared voice is such a failure of our system.
Eventually we got to a much better place but…
As all these thoughts swim around in my mind there was one question that came making a repeat appearance:
“What if along the way… what would have happened if… in any of these scenarios… one of my assessments or decisions had ended up being wrong?”.
And my chest feels heavy with fear and tears as I realize, of course… it is one thing to be the patient fighting for their own life, and I would never want to take away the priority of that gravity. But it is also one thing to be the only person who knows how to assess the given information.
Being the only person qualified to make trigger pulling decisions, and having to make them alone, is perhaps the heaviest responsibility any shoulders have ever had to carry.
From a mind that spends a lot of time thinking... 