Published on September 10, 2016Featured in: Editor’s Picks, Healthcare, Pharmaceutical, Social Impact, The Weekend Essay
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Louis M. Profeta MD
Louis M. Profeta MDFollowLouis M. Profeta MD
Emergency Physician at St. Emergency Physicians Inc., Author and Public Speaker on the Topic of Spirituality in Medicine
I didn’t plan on typing those words and changing the course of your life.
It was a Friday night and I was working in one of our smaller ER’s. I had been mulling around an article in my brain on palliative and end-of-life care. We were not too busy – in fact, we had no patients at the time — so I sat down and started tapping away in my two-finger, “never-took-typing” style.
Tap tap…tap tap tap…tap…tap tap.
In just a few hours, between sips of old coffee and bites of stale doughnuts, I had inadvertently penned one of the most-read essays ever on LinkedIn and perhaps one of the most-read articles of all time on end-of-life care: “I Know You Love Me — Now Let Me Die.”
And when the comments started appearing under the post and the emails flooded my inbox, my heart broke because I came to understand that while my case for allowing you to be comfortable in letting you and your loved ones die in peace was well received, you also shed light on the sad reality that we as physicians were failing you.
You commented thousands of times on LinkedIn and various blogs. You wrote a thousand more emails to me and I read them all. Some broke my heart.
“I’m forty years old in hospice and dying of breast cancer…”
“I have been torn with guilt because of what I put my mother through…”
“The doctors just did not tell me…”
“They didn’t seem to care…”
“They were too busy…”
“I now realize how much she suffered because of what I put her through…”
“I just could not let go…I hope she is looking down and forgives me.”
But most of them started like this…
“Dr. Profeta, I wanted to thank you…”
I simply had no idea the impact it would have and the emotion I would stir. It became clear that families literally were sitting around a table together and reading the essay as they decided to take their father or mother off life support. Still others in the final days and months of their lives were forcing the paper into the hands of their children in order to be allowed to die in peace. I had no idea you would pour your heart out to me and I could literally feel you trembling and sobbing as you hit the send key. I’d see an email from someone I didn’t know and my mouth would dry and my throat would thicken and I’d feel a bit like I did when I found out my own child had leukemia. I noticed people staring at me at the Starbucks as tears poured down my face, wondering perhaps, what was going on in my life. I tried to shield my eyes with a venti.
I did not plan to leave my mark on the world like this. I figured being a simple ER doc was enough. Is it possible to be thankful and proud, sad and heartbroken at the same time?
Countless numbers of you, on LinkedIn and other blog sites, were weighing in about how the hospitals and doctors don’t know shit or don’t care or don’t communicate or just want to milk you and the insurer for every buck you have. All jostling to get the most thumbs ups on how best to care for you or your mom or your dad. Substituting the wisdom of the doctor, for some nebulous friend who just a week earlier posted a recipe on how to make a breakfast danish bake out of pop-up rolls and a carton of brown sugar.
We live in a world of far too many chiefs and it is now way too easy to get other opinions that are flat out wrong.
“So doctor, tell me please. Why can’t you communicate better, be straightforward and honest? “
I warn you. You will find the answers to some of these questions disturbing.
You see, we are just too busy with electronic medical record data entry. This is the new norm. In the olden days, we spent our time in front of you. Pre-med students who shadow me fidget a bit. They want to see patients with me; instead, they get hourglasses and spinning cursors.
We are not at your side anymore, answering your questions, addressing your concerns. We have to move on, we have more clicks to do, more print functions to hit. We don’t have time for you. You are our patients, but the computer is our master. You do what the master tells you.
We have a breakdown of our doctor patient relationship. We have moved away from our personal doctor to a hospitalist/hospital employee model. Your family doctor does not take care of you in the hospital anymore. Your health defaults to someone whose shift starts at 6 in the morning and ends at 6 at night. He or she is just not as vested in you. Also, the resident physician will be gone in a month and you will be turned over to someone else.
We fear malpractice. We’d rather do too much than face the prospect of someone accusing us of doing too little. We don’t want our names plastered all over some rating site or Angie’s List. (It’s good, though, if you need a plumber or carry out Chinese noodles.) You pay the price for this. I am human.
You are our patients, but the computer is our master. You do what the master tells you.
We are tired and we just don’t want to deal with your arguing families and explain the same thing over five different iPhones; trying to assuage the guilt of children all over the country who may just see you on holidays and who, in many cases, may have an exaggerated understanding of your condition.
We also are afraid of you to some degree. The physician is not held in the same reverence as days gone past. Right or wrong, so much of our suggestions are questioned and scrutinized by you or your family. Not to say that you shouldn’t but eventually you have to trust us. I know you will have your experiences telling me I’m misguided. I may nod my head and act like I agree, then I’ll move on.
As I said, you don’t trust us like you used to. Sadly we are to blame. Our own communication skills are not the same as they once were. When my own son got cancer, I surrendered myself. “You tell us what to do. We are in your hands,” I told his doctor. “Really, what do I have to offer? My job is to cradle my child and stroke his hair while you plan his treatment? I know Emergency Medicine. I don’t know chemo.”
So much of our discussions have become defensive, so we just quit. We don’t do well with conflict. We’re the china cup generation of medicine.
We can’t say no or we are not allowed to say no. Think about it. We ask code status, meaning how much aggressive end-of-life care you expect: “Do you want to be on life support? Do you want to have CPR?”
I want to be able to say: “You do not meet code criteria, but I promise to keep you comfortable and to do everything I can do to ensure this, and allow you to see more sunsets with your mind intact.” I need to be able to do this for you. I don’t want to play god; I just want to do what is best and what is right. Please surrender yourself a bit. Let me take that burden off you and your family.
I know you think your living will covers your bases, but there is a very real possibility that when you suddenly come to the ER in the final hours of your life, your family will panic and override your wishes. They are human too. They love you and are not ready to see you go.
In many cases, your living will most likely will not be readily available to us. Perhaps it is tucked away somewhere next to the file folder of old light bills and with that I’ll pound away on your chest. You see, I don’t know you. I don’t know your wishes.
I want you to ask me. “What would you do? What would you hope for if this were you lying on this cot?” Insist and even demand an honest answer, not choices of answers. “Doctor…again, what if this were you, what if this was your mom? I trust your experience.”
You should hope for a doctor that knows love. Most of us do. We know the kind of love that transcends space and time. The kind of love that one feels when they hold their child as he suffers through chemotherapy. The kind of love that makes them cry when they think about fighting god for a chance to come down to earth and hold their 90-year-old child in the arms because they love them no less than when they were born. That is the kind of love most of your doctors hold in their hearts. I want you to know that about me. I want you to know that about us.
We want to do what is right. We want to comfort you. We want to be the voice of wisdom, of understanding and compassion. We want you to look back years from now and feel at peace. I don’t want to have my mouth dry, my throat thicken or to have to shield my eyes at Starbucks because I opened your email and read that all to familiar in-box lament. The one that reflects a depth of agony, fear and regret that is infinite.
“I hope she can forgive me.”
Dr. Louis M. Profeta is an emergency physician practicing in Indianapolis. He is the author of the critically acclaimed book, The Patient in Room Nine Says He’s God.
Feedback at firstname.lastname@example.org is welcomed.