Unhappiness with modern medicine is becoming pretty common, at least our ability to tell the stories has expanded. The internet has become the campfire we sit around and share the tales of our lives and as our expectations of medicine have grown our impatience with its problems has flowered. In the liver community the stories of delayed or missed diagnosis, lack of communication, hurried explanations, and fear of the future are common. Some of that kind of stress led to the creation of this foundation as I went through years of being told I was OK when that just couldn't be really true. At times the anger I felt post diagnosis about my loss of time and life energy was heavy on my soul. I'm perhaps a bit wiser now as I've been able to understand the bigger picture and the challenges doctors face with the limitations of our tools and the mindless bureaucracy that has bound us all in soul searing edicts. I recently found a wonderful blog by a doctor who speaks of his profession with a clear eye but unbounded humanity. I'd like to share one of his posts with you and encourage you to get acquainted with his work. He is Dr Jeremy Topin and this is a link to his blog
I want to share a little from one of this entries called "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. Push open that door. Let’s take a peek. Could have been a lot of things behind “door number one” but probably best we start here. Walk inside. She won’t mind. 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. 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. You looked, you know that although she is alive, she is not living.
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. 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.
Family. Each bring to this room layers. Years of complicated 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 powder-keg, we will add the specter of death as an accelerant. 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. 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. 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? Best to kick that can down the road a little bit.
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.
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.
What? You want to know what’s behind the door down there? I don’t go in there often. It seems that door opens less frequently these days.
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 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. It’s a room to keep in your back pocket, saved for a rainy day. For the day I want to find a stairwell and curl up in a ball and close my eyes and hope that the dying thirty year old and his massive angry family will just fade away. Or when it’s hour thirteen on a Saturday call and the patients just keep coming in and the pager keeps going off and I just want to lay down on a couch and close my eyes and 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.
This is a paraphrased snippet of Dr Topin's essay. Read the real story here