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 is 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 IVs 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 your spirit?
And there is 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 and 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 smartphones 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.
Jeremy Topin is a critical care physician who blogs at Balance. He can be reached on Twitter @jtopin1.
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