I remember very clearly reading Dr. Jeremy Topin’s writing for the first time. When I came across his article The ‘good’ death that could have been much better on StatNews, I immediately thought, This guy gets it. From there I eagerly signed up to follow his blog, started following him on Twitter, and, a few months ago, had the pleasure of “meeting” him over the phone, where we discussed the challenges of practicing medicine, writing, parenting, nourishing our souls, and – perhaps the hardest part of all – trying to do it all at once. The blog where he chronicles these experiences is aptly titled Balance.
Jeremy is an ICU physician in the Midwest, where he frequently faces the types of situations in which there is no clear answer: critically ill patients with multiple comorbidities and family members who may or may not know – or agree with – the patients’ priorities. In the piece His Voice, which first appeared on his blog, he beautifully explores the cascading thoughts and emotions that intersect and diverge during the care of such a patient. I’m so pleased to share it here.
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Jeremy Topin, MD
I pause in front of the door. On the other side, you all wait. A spouse, sons and daughters, sometimes with their own small children in tow. Today it’s your husband and father you have come for. Yesterday it was someone else’s mother. You have come from near and far, across the street and the country. Your weary eyes are unable to mask your sadness.
I introduce myself, acutely aware all eyes are on me. “I’m the intensivist. Your dad’s doctor.” The first part of this meeting is the easiest. The story of your loved one. A medical one. It usually starts on the day of admission, but sometimes we need to go back weeks or months. I guide you all from the beginning to the present, to gather us all in the same space. And as we do this, I observe. Do you comfort each other? Hold hands? Place a head on your sibling’s shoulder? Or are you a room of individuals? Are years of strained family dynamics putting more space between you, than the actual distance between the chairs?Over the past week, you have witnessed a steady stream of nurses, residents, phlebotomists and x-ray techs file in and out of his room. Your dad has withstood a barrage of insults to his body. Radiation to his chest for daily x-rays. Needles piercing skin and veins for IVs and blood draws. Catheters inserted in his neck, his groin and his bladder. Still you hold on to a cautious optimism, clinging to hope. But family meetings usually imply things are not going well, and today is no exception. Taking a deep breath, I open the door and walk inside, leaving for now, the rest of the world behind.
I tell you the story of what my team has done. We have made diagnoses and consulted specialists. I talk of supporting organ systems with breathing tubes and dialysis machines. Of IV’s placed and antibiotics administered. Of the road trips to radiology for cat scans and ultrasounds. Of nutrition given and pockets of fluid drained. The ups and downs of this horrifying roller coaster. Always stressing what we have done. I have trained eleven years to do this. To diagnose. To treat. To fix. To cure. The sickest of the sick. The critically ill.
I stop and ask for questions. Do you understand what I said? Trust is important. You need to trust me. If you don’t, we cannot go on. You don’t need to like what I say, but you must trust that I am advocating for your father. That I have been battling for him. That I have been going to war against his pneumonia or sepsis or cancer or failing heart. You need to know that. Believe that. Because the next part is tricky. I need to share with you that there are limits. That although I want to treat and fix and cure, the reality is that sometimes, I cannot. When I say this will you still trust me? What will you think when I say this battle cannot be won?
Are there tears? Tears usually mean you have heard me. That you are feeling the reality of what I have said. Tears are easier for me than anger. Your anger is more challenging, with your cold stares and raised voices. Threats are hardest. Made to each other; sometimes at me. Taking a deep breath, I hide my pounding heart and rising angst behind a mask of calm. I remind myself you are struggling. I am the messenger making you face your father’s mortality. Anger feels better than the pain of the sadness you want to avoid. So I absorb your pain and I breathe. I absorb your pain and I breathe.
“Can he get better?”
How do I answer that? How do I with my knowledge, experience and understanding, accurately answer that question? There are very few certainties in medicine. How do I explain we are good at keeping people alive, but that is not the same as living? That life can be worse than death? That there may be some path to recovery, but it has long odds and long days and even longer nights? That battle will be even harder than the one they have fought so far. How do I explain this to all of you here in this room? Because in this room alongside us is your fear, sadness, anger, guilt and fatigue. Your family tensions bubbling just under the surface. Your faith and religion and culture mixed in. You are all hanging on by a thread, exhausted, running on fumes.
Lastly, we need to bring one more person into this room. My patient. Your Dad. Your husband. We need to talk about him. Tell me about him. How has he lived his life? What makes him happy? What things give his life meaning? What would he say if he were here in this room? I know this hurts. But we need to try, so we can make this choice through his eyes.
This is where the current road ends and a new path chosen. What are your goals? One will focus on comfort. Forgoing more tests and procedures, we will remove breathing tubes and IV’s. Not another needle to pierce his skin. Morphine for pain. Ativan for anxiety. The end of his life lies further down this road.
Another path is quite different. To continue to fight for an elusive cure or recovery. Tubes once temporary in the mouth and throat become permanent in the neck and stomach. The battle goes on, but to be continued at a long term acute care hospital or LTACH. Hoping your dad’s heart or lungs or kidney or brain will eventually respond to our care, a new therapy, or a miracle through your prayers.
I offer you my recommendation, guided by my experience and knowledge but colored by the stories told of your dad. I want to share in this decision and help shoulder some of the weight of the responsibility I know you feel. More often than not, we agree on a path forward. The reality though is there is no good choice here, no happy ending. All roads lead to some degree of sadness and loss. One road with and end to your dad’s story within sight. The other, still with an end unwritten. Whether we agree or not on the goals moving forward, my job will have been done, if your dad’s voice was ultimately the loudest in the room.
I walk out, nothing more needing to be said for now. My phone catalogs for me the calls missed, the number of pages I’m behind. No time to think or dwell. That will be for another time. A bed rolls by and into the ICU, carrying someone else’s husband. I need to get back to work. His story is just beginning.
To read more of Jeremy’s writing, visit his blog, Balance. You can also can also follow him on Twitter: @JTopinMD.