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Zachary Reese ~

"Does a rock float on water?" I asked the haggard woman lying in the ICU bed.

I was an intern, in the first rotation of my medical residency, and Mrs. Jones had been my ICU team's patient for the past week. Over that time, she'd looked more and more uncomfortable, constantly gesturing for her breathing tube to be removed.

Mrs. Jones tried to form words in response to my question, but the plastic tube in her mouth prevented it. Her chest rose and fell in rhythm with the ventilator's hiss as the machine pumped air into her lungs; her muscles were too weak to do the work themselves.

After several attempts at speaking, she gave up and shook her head. No.

"Do you want the tube out of your throat?" I asked.

Slowly, she nodded.

"Do you know what will happen if we remove the tube?" I asked.

Again, she nodded.

"You'll most likely die," I said, trying to stay stoic. In medical school, I'd learned not to use vague phrases when talking about death. Still, it stung to say it out loud.

A pained look came into her eyes, and tears welled up--but again, she nodded. Then she gestured at the tube, miming its removal.

I gave her a pen and paper so that she could write down what she wanted to say, but her muscles were so wasted that the pen slipped from her grasp and clattered to the floor.

Mrs. Jones was sixty-seven years old. She had acute myeloid leukemia that was resistant to chemotherapy. Over the past year, her health had declined rapidly. Last month, she'd been admitted to the ICU for pneumonia. After suffering respiratory failure, fever and septic shock, she'd been intubated.

Her oncologist had told us that her prognosis was very poor. Despite this, her status was "Full code"--meaning that if her heart stopped, she would be aggressively resuscitated.

Clearly, that was not Mrs. Jones' wish. She wanted the tube out of her throat. But something stood in the way of this: Mr. Jones.

Mr. Jones was his wife's healthcare proxy--and, as luck would have it, he was currently a patient in this very hospital, having been admitted for a flare-up of his chronic lung disease.

Mr. Jones was adamant that everything possible be done for his wife. "That's what she would want," he asserted whenever we asked him.

After debating among ourselves, my team consulted the palliative-care team, whose attending physician met and talked with Mr. and Mrs. Jones about their goals of care.

"She doesn't have the capacity to make this decision on her own," he concluded. "Her husband is continuing as her primary decision maker, so she'll stay intubated."

To make Mrs. Jones more comfortable, we increased her dose of pain medication. Over the next few mornings, I felt a sinking feeling inside whenever I walked into the unit.

I always checked on Mrs. Jones first. When awake, she looked uncomfortable and unhappy, continually gesturing to have the tube removed. Then, once she received her pain medication, her mental awareness would slip away.

I found it harder and harder to see her oscillating between extreme discomfort and sedation. After three days of this, I felt thoroughly exasperated. That was the morning when I asked her if a rock floats on water--and, during rounds, voiced my concern.

"What are we doing for her?" I asked. "She's answering complex questions, so I think her mental status is intact. She's making it very clear that she doesn't want this anymore."

The attending looked at his watch. We were only four patients into rounds, with seven others still to see.

"What about an ethics meeting?" he suggested.

The next day, all of the parties involved squeezed into Mr. Jones' tiny hospital room: the Jones' three children, a social worker, Mrs. Jones' nurse, the palliative-care team, the ICU attending and an oncologist.

Unfortunately, I had to leave the meeting early; but I learned afterwards that it didn't go well. Because of several bad past experiences, Mr. Jones and his children felt a deep-rooted distrust of the medical system. They wanted the tube to stay, and they were unwilling to budge. Ultimately, the medical team told them that, if Mrs. Jones' decline reached the point of no return, the team would override the family's wishes and enforce a Do Not Resuscitate order.

Feeling disappointed, I went to Mrs. Jones's room and sat with her. I had so many unanswered questions.

I began thinking about the words we mention when talking about cases like this: autonomy, justice, beneficence (doing or producing good), nonmaleficence (doing the least harm possible to reach a beneficial outcome), paternalism. As medical professionals, when does our desire to do no harm actually get in the way of doing good?

I didn't know the right answer to that question, if there is one. But I sat there with Mrs. Jones because that's all that I knew to do.

After a while, I stood up to leave.

"I'm sorry," I said quietly. I wasn't offering Mrs. Jones the medical care that she wanted, but I felt powerless to change that. As I'd soon discover, this was only the first of many such times.

In the days that followed, Mrs. Jones stayed intubated, and her condition continued to deteriorate. In the end, her heart failed--and we did not resuscitate her. She died, intubated, in her hospital bed.

There were no winners in this story. The patient was frustrated, the family was upset, and the medical team was discouraged.

The medical and legal systems have tried to make end-of-life decisions easier through powers of attorney, healthcare proxies, living wills, palliative medicine and ethics committees. Knowing this, I sometimes imagine what documents might have made Mrs. Jones' situation easier--an updated living will, for instance. But only a minority of patients have those. And it's not possible, or healthy, to live in "what ifs."

When someone's life hangs in the balance, it's never easy.

What Mrs. Jones taught me is that, when all else fails, I can still sit with a patient and be present. Sometimes, amid all of the ambiguity that comes with end-of-life decisions, that's all I can do.


About the author:

Zach Reese is a third-year internal-medicine resident at Beth Israel Deaconess Medical Center in Boston. He received his undergraduate degree from Georgetown University, where he first learned about the Jesuit ideal of cura personalis, "care of the whole person." After graduation, he moved to Philadelphia to attend Jefferson Medical College. In medical school, he was inspired to write after reading articles by Atul Gawande in The New Yorker. "I wrote this story after observing and experiencing the many emotions that accompany end-of-life care for patients, their families and the medical providers involved. Each scenario is so unique and complex, and for me, writing about them helps to highlight the humanity in each one." He is interested in pursuing a fellowship in pulmonology and critical care after residency, and he wants to help to keep humanism alive in critical-care medicine. When not in the hospital, he enjoys running along the Charles River.

Story editor:

Diane Guernsey

Comments   

# Ron Banner 2018-08-18 14:21
Dear Zach,

Sorry for your suffering. More to the point, I am sorry for your patient's suffering.

Why was the medical ethics meeting help in the husband's room without the patient even present ? What was done by neurologists or others to determine if the decision what whe wanted was understood by her and fit with her previous wishes?
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# Ronna Edelstein 2018-08-18 09:59
Zach, I lived in Michigan during the Dr. Kevorkian years. That experience made me believe that we each have the right to determine, to the best that we can, how we want to die. We do not deserve to suffer when we have no hope for recovery. You did what you could for Mrs. Jones; your presence was a profound present to her. I am confident that you will continue to help patients and their families with end-of-life choices.
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# Mary Porter 2018-08-18 05:08
Thank you - this brought tears to my eyes - for your patient's powerlessness to have her needs and wishes respected, and for your powerlessness to influence - but it also brought tears of respect for you and the gift you were able to give her of acknowledging her needs and her disappointment and most of all the gift of your presence. I write as a Humanist member of a hospital spiritual and pastoral care team
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# Dr Janelle Trees 2018-08-18 04:10
Thank you for writing this, Zach. It's a situation all health workers understand. You've managed to articulate powerful, conflicting feelings.
Dolores, thank you for sharing the profound experience you had at the time of your wife's death. It takes great love, respect and courage to live through such a time and heal.
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# Pamela Mitchell, RN 2018-08-17 23:19
Thank you Zach for a beautiful, inspirational & courageous story. Tough work; tough decisions. Yet never underestimate the power of presence. Thank you.
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# Dolores Dewbury 2018-08-17 20:21
I lost my wife on Juky 12. She had a stroke and brain bleed. I had to frost make a decision on surgery. Mary was 83. The neuro surgeon was very direct and honest with e and I said no to surgery. Mary was intubated I sat with her all night and again had to decide what to do. We both talked about such a scenario and I knew she would not want to continue to be in this state. The tube was removed and Mary passed within the hour. Both decisions were the most difficult things I had to do even knowing what Mary wanted. It was still difficult. Have the hard talk with your love ones - it will still be a hard decision but you will know you are doing what they want.
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# Peter de Schweinitz 2018-08-17 20:02
What a poignant essay. I was impressed with the ability of the author to tell this difficult story, starting with the conversation--d oes a rock float on water--and then staring earlier in time and moving forward through the very difficult--emot ionally and intellectually- -task of making end of life decisions by committee.
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