Guest Post: Control

It is my pleasure to introduce to the readers of Balance, Dr. Rebecca MacDonell-Yilmaz. Becky is a pediatrician out on the East coast who has not only just completed a fellowship in hospice and palliative care medicine, but has just embarked on her third board certification, this time in pediatric hematology and oncology. We connected through social media and over shared themes in our writing. I have read many of her posts on her blog The Growth Curve and wanted to share her work with all of you. I am honored that Becky has offered to post a piece she has written and publish it first on Balance. I could spend some time describing to you all how her story resonates with me, but instead I will let the beauty of her writing speak for itself.  You can follow her on her blog or via Twitter @BeckyMacYil 

Control

By Rebecca MacDonell-Yilmaz

In the afternoon I’m asked to attend an urgent family meeting. I press the resident who has consulted me for details – a middle-aged woman with ailing heart and lungs – and scour the chart to fill in the rest. When she came into the hospital, they asked, inelegantly, “If your heart stops, do you want us to do everything or nothing?” and she chose everything. Never mind that her organs will fail soon, that putting a breathing tube down her throat and hooking her up to a machine is unlikely to lead to any sort of improvement and she will eventually die with the tube in her throat or when her family members make the decision to remove it. She’s deteriorating, and the prospect of intubation is becoming more and more real. Yet she seems to grow less and less sure of what she wants.

I enter the room and heavy conversation is already underway. The resident is explaining that no, she wouldn’t feel pain with the tube because she wouldn’t be awake. But we would also ensure that she wouldn’t feel pain if she chose to forego the tube, to “die a natural death,” as we put it when trying to convey to patients that even our most heroic-appearing interventions – in fact, especially those – are unlikely to bring them back.

She says that she doesn’t want the tube. “I’m tired.” We repeat back to her what we understand her choice to be; she confirms. Her son arrives. He is large – in habitus, tone, voice. He starts yelling immediately. This is the third time (fingers held up for emphasis) that he has been called in to discuss this. And she keeps giving the same answer every time. She wants the tube. She should get the tube.

Two days ago, though, she said she didn’t want it. She decided on comfort only, no more treating, no more fighting. Home with hospice and hopes for a peaceful end. Then he visited and she wanted the tube again, or said she did. And now this conversation that has begun ripping apart the moment he barreled into the room.

We don’t know that she won’t recover, he says – no one can say that for sure. I can say it with high likelihood, I say, with medical experience and knowledge. But anything short of certainty holds no clout. In fact, he points out, we must be asking these questions repeatedly because we don’t like the answers we get. From this point forward, he notes, waving his phone,  he is recording our conversation.

The thing is, if she wants the tube, I want her to have it. It’s not what I would choose, or what I would wish for her – I know what that looks like, that ICU stay, that death. But it’s not my choice to make, it is hers. And whatever she chooses, I want to honor it. But I want it to be truly hers.

More yelling. He knows she’s sick, knows she might not get out of here. But it’s her right to have the tube if she wants it. (And her right, I add – if I can finish, sir – to change her mind.) He doesn’t disagree with this last but wants us to stop asking; she’s tired. We all are. I thank everyone for their time.

Back in my office, it’s dark. I make tea, sigh, stretch, and sit to document my work from the day, my work listening, speaking, trying to hear and to help others be heard.

My pager alarms. She has changed her mind, the resident reports; the whole family has. She is tired. She does not want the tube. She wants a natural death, when death comes. This time they all agree.

On the drive home, with little warning, I begin to scream. It rips up my throat, tearing at my vocal cords. The silence afterwards reverberates, hums, and my muscles relax. I inhale and scream again, the deep breath before it like a silent meditation, the eruption a vehement release. Next comes more tearing. And again the relief.

*                      *                      *

I’m late getting home. My boys need to eat – the youngest to nurse, or to spit pureed foods at me; the oldest demanding waffles and syrup. My husband is on a conference call already so can I please distract them, feed, them, try to keep their voices down?

Attempting to head off the toddler’s impatience, I request his help: can he pull open the frozen packaging? Can he put the waffles on the pan? No, don’t touch the oven – for this part, please just watch.

I’m feeling accomplished with waffles ready, baby happy in highchair, toddler climbing hungrily into his seat. The special fork (the one with rainbow stripes) is ready, syrup is on hand, the prognosis for the evening favorable. I pour generous pools of syrup, slice the waffles into bite-sized pieces, and sink into my seat.

“Move waffles,” my toddler says. Move them? Move them where? “Move waffles.” I don’t understand. Show me; help me; can’t you do it?

The fork is suddenly waving in the air, cutting frustrated arcs. “MOVE! WAFFLES!” I hear the tears welling, the wail erupting, as arms and legs start to fly. Baby is whining, upset at the commotion, and also wanting more puree. The conference call is only a room away and voices continue to rise.

“This is not how we act.” I am seething, though I don’t want to be. I pick him up, move us into the next room where there is space to explode and calm down. I know it’s not the waffles. It’s the communication, the struggle to make his needs and wants known with language that has only just begun to blossom. It’s the control, the need to exert any scrap of ownership and direction over his life. And he’s tired. I’m home late, dinner took too long to even start, his brother needs me as well. And he needs food, sleep, reassurance.

Limbs fly through the air, crashing again and again onto the carpet. He yells and yells, face red, cries lashing out at us all. I sigh, grab the baby from the highchair and pull him onto my lap in the living room, latching him to my breast. It consoles him and he eats hungrily, fussing only when I reach away to pull his brother, who is now simmering, whimpering, to my side. I feel the tension seep out of him as I nestle him close, the molecules of my being reaching out to soak up his unhappiness. The cries die down: his, his brother’s, my own. The three of us exhale as one.

 

Rebecca MacDonnel-Yilmaz can be followed at: The Growth Curve and @BeckyMacYil 

Defending the Lob, Managing the ICU and Emotional Intelligence

The lob shot.

As a goalie, it’s my nemesis. It was my major weakness in college and even more so today. Standing (or more appropriately treading) 6’3″ tall, with an even longer wingspan, I have always been eager and ready to explode up and out of the water, my arms outstretched, to intimidate a shooter. My height, along with my gangly arms and a quick first reaction, are great tools to disrupt, alter and ultimately block my opponents’ shots.

But my kryptonite is the lob shot. It turns my strength against me. A patient opposing player, by waiting a split second, lets my aggressiveness work against me. By allowing me to rise up and out of the water first, a shooter can then release an agonizingly slow arcing shot, up and over my now sinking self, to then drop into the opposite corner of the net. I react. They wait. And I’m beat.

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“Doctor…She wants a chance. She wants to live!”

“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.

We Failed Her

The alarm sounds, a painful reminder that it’s my week to cover the ICU. I take off my favorite sweatshirt, stripping away its warmth and comfort. I quickly jump into and out of the scalding shower, racing to get ready. Making my way toward the kitchen, I roll my eyes at my teenage daughter who is eating ice cream and waffles for breakfast. Her ride waits out front but before she can escape, I get a rare hug, her wet hair cool as it brushes against my cheek. I spy her melting, unfinished breakfast and I shovel what’s left into my mouth. The cold vanilla ice cream and maple syrup drips down my chin. Wiping away the evidence of my indiscretion, I get into my jeep with the top down. The twenty-minute ride is a guilty pleasure, with the spring air cool across my face. The coffee in my hand warms me from the inside out as I make my way to work. Read more