How could I tell my 25-year-old patient she was dying?
What do you do when you know someone is going to die? I’m not talking about death when it comes at the end of a long protracted illness or a terminal diagnosis. Or the final act at the end of a long life, when the body and mind have ultimately given way. I’m talking about when you realize the 25-year-old woman in front of you, whom you met five minutes ago, has no idea she will not survive to see another sunrise.
Moonlighting during residency in the intensive care unit of a community hospital, I was summoned to the emergency department to evaluate a feverish, septic young woman. In his book “Blink,” Malcolm Gladwell describes the reflexive first impression we make before our “thinking” brain starts getting in the way of those initial thoughts.
Walking into the ER bay, all the mental warning bells were ringing. The mottling of her skin told me she was in shock. The visible, rapid rise and fall of her chest told me she was working hard to blow off the accumulating acids in her blood and body. Her eyes told me she was afraid, and rightfully so. The blinking red numbers on the monitor told me how rapid her pulse and how critically low her blood pressure were. She looked sick, but the reality was much worse. I had known her now all of 10 seconds. But I didn’t know she was dead. Not just yet.
A couple of quick questions followed, as I tried to piece together some context for her critically ill state. Fever for two days, chills and rigors. No obvious source of infection. No cough or pain in the belly. But then, the next critical piece of information. The one bit of information that took this from the realm of critical illness to literally life and death.
She had no spleen.
I forgot the reason she didn’t have a spleen; it made no difference now. Its absence was the crucial part.
The spleen is a funny organ. It’s basically a big bag of blood that we can do without. But it does play a crucial role in our immune system, acting as a giant filter or sieve for our blood supply, screening for invaders. Bacteria that have somehow breached our first line of defense and gotten access to the blood supply can, unabated by a spleen, use the high-speed highways of blood vessels to travel and infect, almost instantaneously and simultaneously, any part of the body.
As medical students and young doctors, we are trained to be cautious with overuse of antibiotics. In most people with an intact immune system, the pace of a bacterial infectionis slow enough to temper the need to have antibiotics given reflexively for any random fever. But one of the first exceptions to that rule is when a patient has no spleen. Antibiotics are to be given early and quickly. Within hours. Treat first and think later.
She had had a fever for more than 48 hours.
Forty-eight hours. Two days for this infection to have run amok, unabated. Two days’ head start with her kidneys failing, her circulation failing, her breathing failing. Bloodstream infections can be life-threatening all on their own. Compound that with one arm of the immune system tied behind its back and a two-day head start without antibiotic reinforcement, and she was gravely ill.
Truth be told, there was no time to think much about what to say. There was work to be done. She needed a tube placed in her lungs to breathe for her. She needed a large IV in her neck to replace the fluids that were leaking out of her blood vessels. She needed a dialysis catheter in her groin to help with her electrolytes and acidic blood. She needed medicine to support her heart. She needed powerful antibiotics to start fighting the infection. As I told her and her father all this in the tiny little ER bay, this young woman, through her labored breath, asked me whether she could talk with her fiance first, before we put the breathing tube in her.
Did I forget to mention that she was engaged? Her fiance was in the waiting room.
I will admit I did not know for sure whether she was going to die that night. I know I was scared. Scared for her. Scared of her. Scared I wouldn’t know the right things to do. Not so much by what needed to be done medically. But I was overwhelmed with the responsibility of what to tell this 25-year-old woman, my patient for all of 15 minutes, with her dad beside her. A few minutes away from life support, and along with it, a drug-induced sleep from which she would probably never awaken.
Do I tell her she might die? While truthful, it kind of understates the risk at the moment. Do I tell her she is more likely than not to die? More accurate. But do I need to add to the immense stress and worry that she and her family are already under? Does she even want to know? She has potentially five minutes left to be awake and cognizant in the world. Not much she can do, right? But what would she say? To her dad? To her fiance? Are there things that have been left unsaid? Wrongs to apologize for or to be forgiven? Words of love assumed but not spoken? Five minutes could mean everything. . . . But who was I to make this decision for her?
I was her doctor. A doctor moonlighting in his last year of residency. A doctor whose brain was filled with a growing body of practical knowledge but still short on experience and wisdom. But there I was, and without the luxury of time, I started talking, more by feel than design.
“Let’s get your fiance in here. You’re pretty sick.”
The young man came into the room and held her cool, dusky hand. I talked to the three of them as another doctor walked in to place the breathing tube.
“You are critically ill. Probably from a life-threatening blood infection. Your spleen being gone is part of the problem making your immune system weak. Your organs are shutting down. You need to go on life support.” And then…
“You may die from this.”
Those words hung in the air for a long moment. Only to crash down all around them under the weight of their meaning. I am not sure how much was understood even with the tone of my voice and concern in my face reinforcing those words.
What do you do when you know someone is going to die? They do not teach you this in medical school, and no simulation or role-playing can prepare you for this. I don’t know whether I made the right choice that night. I did what felt right in those few minutes I had to talk to her and her family. It felt honest. It felt as though I balanced the gravity of the situation without depriving them of any hope. I felt she would use those minutes with her family knowing that her next few words might be her last.
Thankfully, there were not many questions. A hug for dad. A tearful kiss and embrace with her fiance. Quiet words were spoken. What was shared was only for them to know. The two men tearfully left the room.
We placed a breathing tube. We used a respirator to breathe for her. We moved her to the intensive care unit. We gave her medicine to make her sleep. We placed large IVs. We gave powerful antibiotics. We gave her medicine to make her heart and blood pressure stronger. We tried dialysis, but she was too sick. We did compressions on her heart when it stopped the first time. We did compressions on her heart when it stopped the second time, her fiance and father never more than a few feet away.
She died before the sun rose the next morning.
Editor’s Note: This piece originally ran in the Washington Post.
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About the Author
Dr. Jeremy Topin is a board certified pulmonary and critical care physician. He provides care and helps manage the ICU at Advocate Lutheran General Hospital in Park Ridge, Ill.
Powerful. I’m grateful to be able to read this account. I’m sure a lot of people wonder what goes through a doctor’s mind in various situations.
You did what I would have want done. It took as much courage as compassion to tell the truth. You made her last words with her fiancé and family all the more meaningful to them.
Thank you for sharing, and somehow it’s a blessing that you were able to be both forthright and compassionate in that young woman’s last hours.
Thank you for sharing your powerful story. Thank you for providing her some comfort at the very last moments of her life.
Thank you for sharing your experience. This article gives insight into the difficult and emotional situations physicians are faced with daily. Your honesty gave a family the chance to say goodbye in a meaningful way.
Dear Dr. Topin~ Thank you for such a beautiful and heartrending account of your experience with your critically ill patient. It took great courage, strength and compassion to let everyone know the truth of her situation… and the truth of how it affected you. The next time I see or talk to one of my physicians, I will share this story, and express my gratitude for their compassion, dedication, and humanity.
What beautifully written heartbreaking situation. Thank you for sharing. A physician’s role is to save lives and dealing with the subject of death honesty is barely taught, so kudos to you.
Thank you. I can’t imagine being her or the family member there to support her or say their last goodbyes. At least you gave them the chance to say goodbye and tell her they loved her.
Thank you Dr. Topin for sharing. This is truly an example of treating the whole patient and I want to to say thanks for such compassion and dedication.
You showed us that being an excellent physician is more than just practicing medicine.
This was really a compelling read. I would love to read more stories like this. It really shows what goes in to being a physician.