My attempts to juggle being a physician, husband and father, playing goalie for the Gators water polo team and Iron Distance Triathlons
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Northwest Pulmonary Associates
If I knew then, what I know now…
I would hug them more. For longer. Squeeze harder.
I would listen more and react less.
I would be sillier and goofier with them and pay less attention to the thoughts of others.
I would cave in more often when they would ask for “one more” bedtime story or book to read or batting practice pitch thrown.
I would write and share with them just how beautiful they are.
The patient, previously a John Doe, is now known. Family now present, when before there was none. A spouse, siblings, and young kids all around. Despite seventy-two hours in the ICU, his lungs have failed, his heart has failed, his liver has failed, his kidneys have failed. Too unstable for dialysis, his potassium level climbs higher and higher, despite attempts to slow down and mitigate its lethal effect. Cardiac arrest is no longer an “if” but a “when”, having reached medical futility.
Kids at the bedside, so young. Unaware. Watching. The face of their dad distorted by tubes in his mouth, IV tubing tugging on his neck, eyes yellow from jaundice, skin all swollen and puffy from edema. Family tension between his siblings and his wife percolates, as his heartbeat becomes more erratic and slow.
In the hallway outside his room, I have a hurried discussion with his wife. She is overwhelmed. Burdened by feelings of guilt competing with anger. Her sadness and despair are palpable. Their last words, their last fight, was days ago, before he was found in a locked motel room, with alcohol around him. Inside him. Poisoning him.
His heart stops while we are talking. We go into his room.
Kids at the bedside, so young. Unaware. Watching. The face of their dad distorted by tubes in his mouth, IV tubing tugging on his neck, eyes yellow from jaundice, skin all swollen and puffy from edema. His heartbeat no longer erratic and slow, because it is no longer beating. This outcome was already determined hours ago.
Compressions will not lower his potassium. IV’s have been pouring adrenaline non-stop into his heart and veins. All to no avail.
I tell the wife to hold his hand and say goodbye. We are not doing compressions. She does not argue.
Is it assent or consent? Medical futility? All of the above?
She holds his hand. She yells. She cries.
Kids at the bedside, so young. Unaware. Watching.
Years pass. I no longer see his face, distorted by tubes in his mouth, IV tubing tugging on his neck, eyes yellow from jaundice, skin all swollen and puffy from edema.
I still see their faces. The kids. They have not left me. I doubt they ever will.
I’m not sure when Facebook added the THIS DAY ___ YEARS AGO feature, reminding us what we had posted on this day in years past. It is often nice to reminisce about a concert a year ago or some silly family event that a picture captured perfectly. I often stop for a moment, let my mind drift back in time, smile, and move on.
In addition to those relatively recent events, come posts as long as ten, twelve even THIRTEEN years ago! First, I am not sure what I was doing, chronically every Americano I drank or telling the world I was on call in the ICU. I sincerely apologize to anyone and everyone I was Facebook friends with back then for annoying you with such egocentric musings. But what is truly killing me are the other post and pictures. My kids when they were well “kids” instead of the young adults they are now. Seeing curly hair that is now straight, braces now removed, playing a little league game with that mitt broken in from a winter’s worth of nights under the mattress, innocent smiles that hopefully are not gone forever. I see myself in some of these pictures. More hair on my head and a lot less grey. Long runs at three in the morning while still at work by seven. Fewer wrinkles, no beard. Carrying less weight on my shoulders despite a child sitting on top of them.
It takes me more than a few moments before I am able to collect myself from these memories.
Facebook continues to remind me that at one point I thought I had all the time in the world. More time to watch the girl with curls swing across the monkey bars. More time to play catch with the boy wearing that baseball mitt. More time to run before my knees creak and my back aches.
How naïve I was.
I am working on embracing, not lamenting, the inevitable changes in myself and family that continue to occur. I am also trying to avoid all the clichés here.
“If I knew then what I know now”
“If I could do it all over, I would change…”
I will admit these thoughts flutter and float between my ears longer than I’d like. I try to change my focus to the future. And then I remember there is still the here and now. My daughter, who has outgrown her curls, is driving and dancing while fitting in her homework and friends. My son, who has outgrown that baseball mitt, is taking on new challenges on a daily basis. And I have a few more early morning runs left in my knees and back before I hang up my running shoes and visor.
So thank you Facebook. For my daily reminder of “this day years ago”. And in turn, hopefully not forgot what I still can do today.
“Doctor…She wants a chance. She wants to live!”
How often have I heard those words? Or some version of them? The location of the conversations varies. I might be standing outside the curtain of an emergency room bay or sitting on a worn chair inside a cramped waiting room adjacent to the ICU. Possibly on the phone in the dark of my bedroom at some pre-dawn hour. Those words, coming from the mouth of a spouse, a child, or a sibling are usually imploring and pleading and occasionally defiant and demanding. But always beneath the surface, at its origin, is fear.
Critical illness, almost by definition, does not come on slowly. Occasionally it starts as a quiet whisper, allowing time for patients and families to absorb and adjust. But all too often, it presents as a roar. Infection takes hold and explodes. A vessel once open becomes completely blocked. A beating heart suddenly arrests. An aneurysm ruptures and bleeds into the brain or belly. An accident or trauma, completely unforeseen, literally crashes into a life.
The brutal and cruel physiological disruption these insults cause a patient are usually obvious to both the care team and the family. But the additional traumas to the family and friends left to make decisions in the wake of critical illnesses are more subtle.
Some choices can be relatively simple, like placing large IV’s or draining a collection of infected fluid. But what about issues of life sustaining or death preventing treatments such as ventilators for breathing, powerful infusions of medicines to make the heart beat quicker and squeeze stronger, a machine outside the body to filter and clean the blood the kidney cannot, or chest compressions and electric shocks when the heart completely stops? These decisions are literally of life and death. And as physicians look to surrogates to help guide our interventions, we often ask, “What would the patient want?”
“Doctor…She wants a chance. She would want to live!”
And there lies the dilemma.
A chance to live. It seems like a straightforward statement.
Critical care is an amazing field. With appropriate aggressive intervention we are often able to halt the progression of and stabilize dangerously low blood pressure or oxygen levels. We can cool a patient’s core body temperature to protect injury to the brain, perform emergency surgery to repair leaks in large arteries or perforations of parts of the bowel.
But what does it mean to say we want to live?
Is it just a heart that beats? Lungs filling with air while lying in bed? Skin warm and damp on hospital sheets? Liquid calories delivered to the stomach by a plastic tube? A hand held by family sitting at the bedside? Light filtering through a window, giving just a glimpse of what lies on the other side?
Or is it a heart able to soar with love or ache from loss? To breath in air while laughing or crying? Sweat dripping from a brow, stinging the eyes, while working hard in the yard on a hot and humid summer day? A stomach full, from one too many pieces of Chicago style pizza, or a brain buzzing from that first morning cup of coffee? To be able to hug or be hugged and feel the warmth of an embrace on the surface of your skin and on your spirit?
And there are an infinite number of possibilities between these two extremes. Our interventions are often good at preventing death. But not always as effective at helping us live. And what is living? To you? To me? In my thirties with young children still to raised? In my seventies with grandkids to watch grow? What is enough quality in life to lift our hearts up high, when our bodies are still tethered to the bed?
Most of us only glance at these questions. To see them obliquely. Set them aside to deal with tomorrow. And the sequence of routines in our day to day lives help us do that, beginning with the starting gun of the morning alarm. The routine drive to work where we put in our time. Then the race to a soccer practice or baseball game and dinner on the go. Help with homework, pay some bills, read some emails, off to bed and then repeat. On our way to the next job, the next raise, the next game, the next tournament. All with our distracting smart phones in hand. To photograph, to read and reply, to text and tweet.
These questions about what makes life worth living are complicated. Not only do they make us recognize our own mortality, they also force us to confront the lack of mindfulness in our day to day lives. To separate patterns and routines from what is purposeful and meaningful.
By answering these questions directly, we can create two powerful gifts. The first is for our families, loved ones and surrogates. Having discussions with them ahead of time decreases their burden, by providing a better understanding of what it is that makes life worth living. So they may be more prepared to speak for us, if and when we cannot.
The second gift is to ourselves. Not for the future, but for the here and now. As we recognize what gives us purpose and meaning in moments of mindfulness, we learn what we want to do, not what we feel obliged to do. And in doing so, we then learn what truly makes our hearts soar.