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 

Two Doctors, One Patient, the Chicago Cubs and a Common Goal

This piece was written together with a friend and colleague Chadi Nabhan, an oncologist and current Chief Medical Officer at Cardinal Health. This was originally published here in The Oncologist.  

The crowd erupts with joy, champagne bottles pop open, and everyone around me is stunned. The Chicago Cubs have just won the World Series for the first time in over a century! I heartily share the exhilaration of others in my adopted hometown, but my elation quickly deflates as my mind wanders back to 2013 and to one particular patient with one particular disease, which showed that the doctor-patient relationship is not limited to the oncologist but often involves others.

The oncologist: The oncologist’s schedule can be counted on to be overbooked, busy, and regrettably, dominated by patients with cancers that are rarely curable. It is not surprising that oncologists, myself surely included, yearn to see a lymphoma diagnosis in their crowded roster of patients. For when we see a lymphoma diagnosis, we immediately hope for a curable one, such as large cell lymphoma, for which the odds of a successful treatment are much higher than those of other lymphomas. I was thinking about this when she walked into my office, unabashedly in full Cubs gear, even down to her socks. Her husband was by her side, in a male version of the same outfit. Hardcore Cubs fans who were getting ready for another hopeful season, until the C word struck. Cancer. She had been coughing for few weeks. Ultimately, a chest x-ray was ordered, after antibiotics failed to improve her symptoms. She had a diffuse large B-cell lymphoma (DLBCL) and was only 48 years old. Our visit lasted an hour; we reviewed the data and I ordered additional tests to stage her disease in order to formulate a treatment plan. A few days later, she walked back into my office with her husband by her side. She was wearing the Cubs attire again, head to toe. I was ready to deliver good news of her earlystage disease when she interrupted, “Just tell me I will live until the Cubs win a few World Series.” I smiled in return and countered, “More than a dozen, I hope.” She had early and curable disease—the cure rate can exceed 80%. I happily explained how confident I was about her chances. I recommended chemotherapy and we reviewed possible side effects, along with how we would treat or prevent them. We both agreed against radiotherapy and I ended our conversation by making clear that our goal was to attain a cure with little disruption to her lifestyle, especially because the baseball season was starting. Time passed, and my optimism, and her smiles, dissipated. She developed fevers and chills while on powerful chemotherapy and was so sick, unable even to watch the Cubs on TV. Her DLBCL was not following my plan and proved unrelenting. I diagnosed refractory disease; the synonyms for “refractory” perfectly summed up my patient’s disease: stubborn, recalcitrant, and unmanageable. I was upset, angry, disappointed, and speechless. This was the disease I should have been able to cure; this was the diagnosis that cancer specialists enjoy treating because of its favorable outcomes. As the three of us sat in a quiet exam room, I with the white coat and they with full Cubs regalia, we discussed options. “We still have hope to cure this,” I explained. I recommended a stem cell transplantation, using her own cells. I was steadfast in my optimism and determined to project confidence. When she asked about percentages, I avoided the answer. I advised her to focus on the mission at hand and to ignore statistics that could easily eclipse our hopeful march forward. More chemotherapy, more tests, more visits, as we forged toward a transplant. Her transplant was thankfully without complications; she was discharged 14 days after her stem cells were reinfused. The nurses cheered her as she exited the hospital and headed home. The baseball season was over. The Cubs did not win, but her Cubs hat remained a loyal guardian angel, covering her bald head and emphasizing her resilience as she fought this lymphoma tooth and nail. On day 45 after her stem cell transplant, I saw her back. She was not feeling well; the anxious looks in her and her husband’s eyes stabbed me in the heart. The three of us knew her disease was back—it probably never went away; here we were again. The room was quiet and we started talking options. We talked about doing another transplant, but this time using stem cells from a donor and not her own. We then discussed the inherent risks, clinical trials, and novel therapies. Before decisions could be made, the options vanished, one after another, because her disease was as remorseless as it was tenacious. A few weeks later, I was preparing to leave for the International Congress on Malignant Lymphoma in the morning—a gathering of researchers, scientists, and clinicians where I would be presenting data on large cell lymphoma. I got a page from the intensive care unit (ICU): my patient had just been admitted through the emergency room with severe shortness of breath. Imaging showed her lungs were filled with “something funky.” The resident offered an opinion that infection was likely and that his team would start aggressive antibiotics. He was maintaining hope, just like he was taught in medical school. The ICU team would monitor, as the fear of sepsis was looming. I hung up the phone but could not get back to sleep. As I stared at my bedroom ceiling, my mind was racing, both sickened and infuriated by the irony.

The intensivist: Every other day is an “on-call” day for the critical care team, and today was one of them. Taking admissions for 24 hours in the ICU is a mixed bag. No one wants more work on top of the already challenging cohort of patients on the service, but the opportunity to take care of patients in the midst of critical illness is a privilege. As an intensivist, more often than not, I haven’t met my patients before they are admitted to the ICU. For the doctors who have known them for years, as the internist or specialist caring for their chronic illnesses, trust and comfort has been built up and earned over time. I rarely have that luxury. My access to patients’ worlds is born out of the necessity of their critical illnesses: the onset of something acute or the progression of something more insidious. I get to ask the most personal of questions, place a stethoscope on their chests to listen to their hearts and lungs, palpate their organs to search for pain or tenderness, and put my hand on their skin to feel how strongly or weakly their blood flows. With this privilege of such intimate and personal interaction come amazing opportunities but also heavy responsibilities. To help heal and comfort. To offer hope and calm, amid the fear and angst that come with critical illness. The charge nurse shouted a quick summary, alerting me to a new patient rolling into the ICU. Late 40s, refractory lymphoma, maybe pneumonia, short of breath. Only four pieces of information, but they painted a picture. No positive mental images came to mind. Angst and foreboding filled my chest. A quick scan of the chart, more words and phrases, and the picture went from bad to worse. “Multiple failed rounds of chemotherapy.” “Status post stem cell transplant.” “Progressive lung infiltrates without a clear diagnosis.” “Increased work of breathing and short of breath.” “Unclear” diagnosis. These were not words you wanted in your medical records. I saw the date of her diagnosis and wondered how she and her husband dealt with that blow. Were they overcome with fear and despair? Did they get angry and defiant? Were they united in their reactions? Did they struggle together or separately, lying awake in a darkened bedroom before the light of dawn? I read about the rounds of chemotherapy, but it didn’t tell me about the nausea, the vomiting, the loss of her hair and weight and possibly her sense of self. I saw the date of her relapse. But it didn’t tell me if she took the weight of those words in stride or if they shook her to her core. All told, these words described a young woman who was running out of options and time. I knew this patient, like many with severe illness too early in their lives, had kept hope near her side. Carried it with her through it all. This is the worst part of my job. Along with the opportunity to help and heal, cure and comfort, I have an obligation to explain the painful truth about the limits of what medicine has to offer. The ICU is often a place where patient and doctor, disease and medicine, are all thrust together. Where hope meets reality. Now I needed to go into the room. Knowing everything. Yet knowing nothing.

The oncologist: Before leaving for the airport, I headed to the hospital to visit her. It was early; her eyes were closed; her husband was resting on the bedside couch. I sat down on a chair by her bed, looking at the monitor’s green lines jumping up and down, showing her heart rhythm. The noises from various monitors punctuated my sullen thoughts. She opened her eyes and offered a gentle smile. She said, “I thought you were leaving today.” “Yes, but I wanted to check on you,” I replied. We both knew her current state was not due to infection, even though we held onto this improbable hope. Hope, however, cannot replace reality; her cancer was getting worse and it was winning the battle. We sat in silence. “Are you ready for your presentation?” she inquired. “Yes, but I will be further preparing on my way there,” I replied. “Good luck and be safe,” she said kindly. I had to leave; I stood up and was at a complete loss for words. What could I say? I wanted to wish her a speedy recovery, but knew that wasn’t even an option. I wanted to tell her and her husband that I would see them upon my return. But would I? I knew deep down that I would not and that saying so would be a lie. I struggled to find the right words. I wanted to keep the hope going, but wanted to be realistic. I wanted to wish her luck, but didn’t know where to find luck when you needed it the most. Our journey was ending. I mumbled something as I exited her room. To this day, I can’t even recall what I said.

The intensivist: I saw the oncologist leaving the room. I felt his anguish as we conferred briefly before he had to leave. The reality is that with growing trends toward hospitalists, a majority of admitted patients will be cared for by physicians they have never met, especially during times of significant decompensation in their health. Most oncologists, however, continue to be an exception. Their relationships with patients are forged in the midst of a life-altering event: the diagnosis of a life-threatening illness, when patients are forced to face their own mortality. At a time when a patient is most fearful and vulnerable, the oncologist has the ability and the mandate to help ease fears and provide a path of hope. With trust and a bond earned over weeks and months of therapy, the highs and lows of treatments, and follow-up scans and labs, they move forward with a common mission and purpose. I often admire the powerful and deep relationships oncologists have with their patients. But I do not envy the burden those doctors carry, one of providing and maintaining hope. I walked toward her room, soon to be the newest doctor in her life. In the next few minutes, I had some basic tasks. Establish a physician-patient relationship. Provide or confirm existing information about her disease. And outline the options for care to her family and her. The challenge was to do this while earning immediate trust, being honest and accurate about the severity of her terminal disease, fighting my own human instinct to present things in the most hopeful of terms, and emphasizing possible options without lingering on how few remained. I didn’t want to hurt her any more than the cancer already had. I wanted to be honest without crushing her spirit. This was where hope met reality. How could I do this? I had no script. I headed to her room with a weight on my shoulders. But whatever burden I felt paled in comparison with hers. As I walked into her room, I saw her for the first time. I noticed her shirt, baseball hat, and socks. This was the first thing I learned about her. I knew her heart bled Cubbie blue. I offered my hand and said hello.

REFLECTION: She died during that hospital stay. Although several years have passed, she was one of the first people we thought of when the Cubs won the World Series. The physician-patient relationship is not one sided. Hope, and the comfort it brings our patients, touches our hearts as well. Doctors are not immune to the emotional challenges of recognizing, accepting, and communicating when our shared hope is no longer consistent with reality. For baseball, hope springs eternal. But unlike the Cubs, she did not have the luxury of an endless number of seasons to start over and try again.

Chadi Nabhan can be followed @chadinabhan
Jeremy Topin can  be  followed @jtopinmd

 

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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Faces and Futility

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 effectCardiac 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.