Walk with me, why don’t you? It’s time, don’t you think? We have been avoiding this for quite a while. But it’s best to bring this out from the shadows and into the light. Let’s take a walk through part of my day.
You won’t like what you see. I don’t like this much, but I just keep moving forward, one foot in front of the other. Don’t stop. Can’t stop. Movement keeps things blurry. And blurry is less defined. And less defined is fuzzy. And who gets hurt by fuzzy? Fuzzy is soft and safe. Fuzzy can’t hurt. Fuzzy can’t reach into my heart and soul and hurt me from the inside out.
You’ve taken the dare, I see. Well good for you. Come on. No time to waste. Got to keep up, keep the legs moving. First stop. Pick a room. They are all different but the same. Maybe like different flavors but still ice cream. I’m sorry. Did I say ice cream? That makes me laugh. You see ice cream is happy. Who doesn’t like ice cream? But ice cream is about being a kid and eating something cold and sugary and sweet on a hot sweaty day. It is summer and outdoors and sun and youth. And that is not behind these doors. If we are going to walk this path together, best to be as honest and upfront as possible. Please accept my apologies and move on.
No reason to be shy now. Push open that door. Let’s take a peek. Here we go. Probably best we start here. It’s ok. Walk inside. She won’t mind. As a matter of fact, your presence is probably breaking up the monotony of her day — of her life. Yes. Yes. I assure you she is alive. I am very good at what I do, and what I am doing is keeping her alive. Oh, wait. There I go again. I’m sorry. This can be hard. One might say it’s just semantics, but I believe in the power of words.
“Keeping someone alive” sounds good — feels good. It invokes heroism, strength, knowledge and courage. But I promised to be honest.
And honestly, she is alive but only by preventing her from dying. If you get rid of the fuzzy, and you really take a look — you would be hard pressed to say she is living. Alive, yes. Living, no. Alive because of all those catheters and tubes we love. A tube in the neck to fill her lungs up with air, in her stomach to fill her with calories, in her bladder and neck and groin to draw out the evil humors and replace them with electrolytes. Low blood pressure? Bathe her heart in adrenaline. Low urine output? Dialysis. Fever? Antibiotics. And look: her oxygen levels are perfect! Her blood pressure is perfect! Her heart rate and temperature are perfect! And her electrolytes are perfect!
But I can see you were not fooled. You looked, didn’t you? Not at the tubes or the ventilator or the monitor. You looked at her eyes — those windows to the soul. A glassy stare into nowhere. You looked at her skin, gray with blotchy bruises. Not cold, but without warmth. You looked at the narrow strip of sunlight working its ways thru the blinds, landing on the empty chair next to her. You know that although she is alive, she is not living. You looked, and It’s not fuzzy.
I know you have questions. How? Why?
Wait, there I go again. It’s not complicated. I mean the big picture is simple. What we have here is “a failure to communicate.” But to be fair, there is more to the story than just poor bedside communication skills between the doctors and her family. I mean, I am a doctor — her doctor. And although biased, I view myself as decent, empathic and compassionate. So there must be more to the story. I assure you there is. Come on, let’s walk. There is another room ahead. Let’s take a look.
Family. Siblings. Children. Grandchildren. Each brings their own layer. Years of complicated family relationships filled with love, hate, resentment and guilt. Overtones of religion and cultural bias. Pre-conceived notions of health, life, disease, prognosis with variable degrees of inaccuracy. And in this this powder-keg, we will add the specter of death as an accelerant. Fun, right? Walking in, we don’t know anyone. The chances of having any relationship or trust prior to crossing that threshold are slim to none. But I am to guide this family, with these layers, to a better understanding of what lies ahead for mom or dad or sister or brother. Five minutes maybe? How about 10? Not really a lot of extra time in the day. But wait. You say you want to try? Be my guest. But that path is full of pitfalls. Beware of the son who knows it all or the daughter who doesn’t trust doctors or the child from the coast who hasn’t seen mom in years and decides to now play an active role. Beware of giving any information that contradicts prior that will fuel the seeds of mistrust. Beware the primary MD or consultants who give updates about their “trees” instead of talking about the “forest”. Now do this in five minutes? Ten? A day? A week? Would you sacrifice your son’s baseball game for this? Or your daughter’s musical recital? Do you skip lunch when you haven’t had breakfast? Do you not return the five patient phone calls waiting for you in the office?
Good call walking out, kicking that can down the road a bit. Maybe it will sort itself out on its own. Or maybe another doctor or palliative care team will take this on? But we’ve got more doors. Come on. I hear something on the other side of this one.
Ah, here we go. A room of suits. Accountants and administrators all in front of computers and spreadsheets. Payer mix, length of stay, DRG’s, severity of illness. Counting the catheters and procedures, adding them up. They see no patient or family. Just a medical record number. Can’t find a nurse? There are now two fewer on the floor due to that spreadsheet. A delay in answering the call light? That PCT now covers two units instead of one. The phone going unanswered? They have cut back on secretaries. Delays in blood drawn, CXR’s, supplies missing? Those decisions are being made in this room. By those suits. Success and failure determined by the score on a spreadsheet and not by the patient’s clinical course.
Let’s move on. You notice we have slowed? Managing all of this is like dragging an anchor. It’s not even noon, and I am so drained. Aren’t you? We still have notes to write and billing to hand in and another hospital to visit and 14 outpatients to see and phone calls to return and residents to teach and mentor. And on the horizon, there is MACRA, MIPS, ACO and PPO to learn and adjust to — there’s a private practice to keep afloat.
What? You want to know what’s behind the door down there at the end? I don’t go in there often. That door opens less frequently these days. Sometimes I forget it exists. But now is a good time. Maybe now is a good time to share with you.
The light is more abundant here. Plenty of people milling about. Who are they, you ask? Some were “saved” from their sepsis or cancer. Some were saved by a morphine drip and removal of plastic tube from their lungs. Some are the parents and children of patients who I sat with and shared both the best and worst of news. Some are the students and residents who I have impacted in positive and meaningful ways. They are the “wins”. They help me to continue to walk back into the LTACH or ICU or hospital floor or my office. I used to think every day I would add to this room. But that is not reality. But it is a nice room nonetheless don’t you think? It’s a room to keep in your back pocket, saved for a rainy day. The day you want to find a stairwell and curl up in a ball and close your eyes and hope that the dying thirty-year-old and his large overwhelmed and distraught family will just fade away like it never happened. Or when it’s hour thirteen on a Saturday call and the patients just keep coming and the pager keeps going, and you just want to lay down on a couch with your family around and close your eyes and let yourself drift into sleep. It is the room I walk into when I need to remember why I battle every day. Because make no mistake, it has become more and more of a battle.
Well, my friend. I think it’s enough for today, don’t you think? Quite a bit to see and hear and process. I know. I understand. But I appreciate the company, if only for a little while. But it is time to part ways. Not asking for sympathy, but it is nice to share. It can feel a bit lonely sometimes. But I need to keep moving forward and finding my way. Need to keep things fuzzy. But not too fuzzy to miss those wins, however few and far between they are.
Thanks for taking this walk with me.
Jeremy Topin is a critical care physician who blogs at Balance.
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