Walk with me…

Walk with me, why don’t you? It’s about time, don’t you think? We have been avoiding this for quite a while. But it is best to bring this out from the shadows and into the light. Let’s take a walk… Thru a part of my day. But be careful. You won’t like what you see. I don’t like this path very much. It’s why I have not looked lately. 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. Gotta keep up, keep the legs moving. First stop just ahead. Pick a room. Any room. They are all different but the same. Maybe like different flavors but all still ice cream… I’m sorry. Did I just say Ice Cream?  That humors me. Cause you see “ice cream” is happy. Who doesn’t like ice cream? (my apologies to the lactose intolerant). 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 what is behind these doors. If we are going to walk this path together it’s best to be as honest and upfront as possible. Please accept my apologies. But let us move on.

Ah… here we go… No reason to be shy now. Push open that door. Let’s take a peek. Yep Yep. Here we go. Could have been a lot of things behind “door number one” but probably best we start here. It is ok. Walk inside. She won’t mind. 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 for her 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 do believe in the power of words. “Keeping someone alive” sounds good. Feels good. Invokes heroism and strength and knowledge and courage and bravery. But I promised to be honest. And honestly, she is alive. Because I am preventing her from dying. Because if you get rid of the fuzzy and you really take a look here… you would be hard pressed to say she is living. Alive yes. Living no. Alive because of the tubes. All those tubes. We love our catheters and tubes… Tube in the neck to fill her lungs up with air. Tube in her stomach to fill her up with liquid and calories. And tubes in her bladder and rectum to measure her urine and excrement. Let me place another catheter in her neck or groin. A little bigger. All the better to draw out the evil humors and replace them with just the perfect electrolyte replacement soup. Low blood pressure? Ah, time to bathe her heart in the adrenaline I’m pushing thru her veins. You say low urine output? Dialysis. You say fever? I say antibiotics. And see. Look? Her oxygen levels are perfect! Her blood pressure is perfect! Her heart rate and temperature are perfect! And her electrolytes, her sodium and potassium and sugar 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. You looked at her eyes. Those windows to the soul. The glassy stare… into nowhere. You looked at her skin… Grey. Blotchy with bruises. Not cold, but without warmth, paper thin and peppered with tears. You looked at the meager strip of sunlight that has worked its ways thru the blinds into the sterile room that lands on the empty chair next to her. And 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? What the fuck?  Hang on… Breathe. It’s complicated.

Wait… there I go again. It’s not really 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 then just poor bedside communication skills between the doctors and her family. I mean I am a doctor. I am her doctor. And being biased, I view myself as a decent human being. Empathic, compassionate even. So there must be more to the story. I assure you there is. Come… walk. There is another room ahead. Let’s poke our heads in and take a look.

Family. The children, the siblings. Grandchildren. Each bring to this room layers. Years of complicated family relationships filled of love, hate, resentment, guilt. Overtones of religion and cultural bias.  Pre-conceived notions of health, life, disease, prognosis with variable degrees of inaccuracy. And in this quagmire, this powder-keg, we will add the specter of death as an accelerant. This is fun, right?  Walking in to this room, we don’t know any of them. The chances of having any relationship or trust prior to crossing that threshold are slim to none. But I am supposed 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 ten? Not really a lot of extra time in my day to work thru this mess. Virtual piles of notes and documentation still to be done. But wait… You say you want to try? Be my guest. But that path is full of landmines. Beware of the son who knows it all. Beware of the daughter who doesn’t trust doctors. Beware of the child from the coast who hasn’t seen mom in years and decides to play an active role now. Beware of giving any information that contradicts any given prior that will fuel the seeds of mistrust. Beware of the primary MD or the consultants who give updates about the individual tree instead of talking about the forest. Now you think you can do this in 5 minutes?  10 minutes? A day? A week? Would you sacrifice going to your son’s baseball game to work through this? How about your daughter’s musical recital? Do you skip your lunch when you haven’t had breakfast? Do you not return the 5 patient phone calls waiting for you in the office?

Good call walking out and closing that door. Best to kick that can down the road a little bit. Maybe it will sort itself out on its own? Or maybe another doctor or palliative care team will take this on? Probably not… But we’ve got more doors. Come on… I hear something on the other side of the next one.

Ah… here we go. No patients in here. No families. All those men and women in suits… Those are the accountants. The bean counters. Administration. All in front of computers and spread sheets. Calculating, adding, subtracting, payer mix, length of stay, DRG’s, severity of illness. Counting the catheters and procedures and tests, adding them up and keeping score. They see no patient or family. Just a financial index number / medical record number. They are not often seen, but always felt. Can’t find the nurse? Well there are now 2 fewer on the floor due to cutting cost. A delay in answering the call light… That patient care tech now covers two units instead of one. You hear the unit phone going unanswered? Well they have cut back on the unit secretaries. Delays in blood drawn, chest x-rays shot, supplies brought to the floor… Those decisions are being made in this room. By those suits. Whose success and failure are determined by the numbers on an excel spreadsheet, but not by the clinical course of the patients we care for and treat.

Lets move on… You notice our pace has slowed? It is hard not to be weighed down by this, no? It is an anchor on the rest of the day. It’s not even noon, and I am tired, so tired. Drained. Aren’t you? We still have notes to write and billing to hand in and another hospital to run to and 14 outpatients to see and phone calls to return and residents to teach and medical students to be a role model for. And on the horizon there are these things called MACRA’s and MIPS and ACO’s and PPO’s to learn about and adjust to and a small private practice still to run and keep afloat. Hopefully we can stop and grab a bite for lunch somewhere a long the way, that is if you still have an appetite…

What?  You want to know what’s behind the door down there way at the end? I don’t go in there often. It seems that door opens less frequently these days. Fewer and far between when I get to go to that place. Sometimes I even forget that it exists. But maybe now is a good time. Maybe now is a good time to share with you.

The light is more abundant but softer in here. There are 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 medical students and residents who I have impacted in positive and meaningful ways. They are the “wins”. They (along with a venti americano) are what help me shed the weight of that anchor you feel on us right now this morning. To help me continue to walk back into the LTACH or ICU or hospital floor or my office. I used to think everyday I would add someone 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. For 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 massive angry 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 in and the pager keeps going off 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 everyday. Because make no mistake. It is 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..

But thanks for taking this walk with me….

 

 

 

10 thoughts on “Walk with me…

  • blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } This is amazing!!!

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  • Dear Jeremy, Many years ago as a social worker I walked into many rooms where children with progressive degenerative diseases and their families were. I was able to plan a stag party in the pediatric ICU for an adolescent boy with Duchenne who wanted that as his dying wish. I could get an air conditioner for a severe asthmatic or a trip to Disneyland for a young girl with Werdnig Hoffman disease. But then things started to change and the number of social workers decreased, the expectations of simply being a discharge planner came into play and I could no longer feel what I was doing mattered. I eventually left Michael Reese and finally social work altogether. I look back at what I did and feel it was the most worthwhile job I ever had. I still hear from a few parents I had in support groups all those years ago. You are not alone in those rooms. Many of us who know how medicine should be practiced are there with you as are all the campers and counsellors from muscular dystrophy camp who taught you how to listen, care, and face one of life’s most difficult challenges. We are all there inside of you even if we are invisible. What you are doing in those rooms matters! You are not alone. Great big hugs, Betty

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  • Very strong piece, my friend. You are such a rock star, and our profession is lucky to have you. Please take care of yourself. Put your own mask on first, as they say on the airplane. You were called to this work, as were we all. The system is broken, and there are those working to improve it. Meanwhile we trudge on. Please visit the room of wins more often. Steel yourself with that energy, as often as you can. That fulfillment sustains us. We also need to sustain one another. I am happy I took this walk with you tonight. I will be happy to walk with you again anytime, if it means we can make each other stronger for it.
    Peace to you and your family this holiday!

  • Speaking as a patient and a friend (and as a social worker who has walked into some of those difficult rooms as well), you know I think that you are so incredible at what you do. But also you need to be happy (most of the time, anyway). Your work itself reminds you that life is indeed precious. Your own life is precious too and it is never selfish to take care of yourself. It’s actually not negotiable. I know the key it to figure out how! I am working on it too. Helpers tend to suck at prioritizing themselves when there is so much to balance. Thank you so much for sharing this.

    • Thank you for your kind words and thoughts Lisa! Always working on ourselves thats for sure. Best to you guys this holiday! Look forward to celebrating and sharing many more for years to come!

  • Read part of this this when you posted and had to walk away to digest. Came back now to re-read and get through the walk with you. Don’t know what else to say except you matter – a lot – to a whole lot of people, especially your family, and maybe that can help bolster you sometimes along with that venti americano. xoxo

  • This is an amazing piece. The feelings cross
    over multiple specialties. I can relate to
    how hard it is to share or even explain
    my job to my family and friends. I think I
    need to visit my own win room a bit more too.
    Thanks for your great insight.

    • Thanks Mary. We all share similar frustrations about what we see. I’m processing a bit out loud I guess. Thanks for taking the time to read and comment!

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