“40-something year old woman, history of metastatic breast cancer, now with pneumoperitoneum likely secondary to hollow viscus perforation. Surgery consulted, dispo based on reccs.”
The patient was uneventfully signed out to me that night. I knew I was in for a long shift, but the ED looked relatively quiet. My patients were “tucked away" nicely, which means they were waiting for scan results or recommendations from consultants. I signed up to see some of the new folks waiting for a doctor to evaluate them. After I spoke with one of them, Surgery caught me in the hallway.
“Hey, that patient — she’s palliative,” they said. I looked at them, thumbing through the mental notes I had made about the patients signed out to me.
“The one with the air in her belly?” I asked, spelling out what we medically call ‘pneumoperitoneum.’
“Yeah, it was a tough call because of her underlying condition, but we offered her surgery for the pneumoperitoneum and she declined. She wants to stay comfortable through the end and I agree with her decision, the risks of surgery are quite high,” he explained.
I sighed. Given her medical history, it made sense that she would decline the surgery, especially with the risks involved with operating on her. “Okay,” I said. “I’ll check in with her and get our internists involved.”
I walked over to her room to introduce myself. “Hi there, Ms. Calo,” I said, “I’m Dr. Pavitra, I’m your previous doctor’s relief for the night. How are you feeling?”
Ms. Calo looked exhausted, her skin and eyes yellowed with jaundice. Her cancer had spread everywhere — most notably to her liver, where it had wreaked such havoc that her liver function tests were highly abnormal. The yellowing of her skin was from high levels of bilirubin streaming through her blood, depositing in her skin and mucous membranes.
She lay there, breathing hard and inhaling oxygen from a nasal cannula, clearly in pain from the inflammation and buildup of air in her abdomen. Her belly looked swollen against her thin frame, physically making it difficult for her to take a deep breath. She had a wet cloth laying on her forehead to make her more comfortable. Swaddled in blankets, she looked over at me. “Fine, thank you,” she responded.
Ms. Calo had kind eyes — the kind that had lovingly raised two children, protecting them from the evils of the world for as long as she could. One of them sat by her side quietly and solemnly, understanding entirely well how his mother was faring and trying with every fiber of his being to stay calm so he could be there for her through her ordeal.
I sat by her bedside. “I heard the surgeons had a chance to speak with you,” I started.
“Yes, yes,” she responded.
“And I heard that you didn’t wish to have surgery to close the hole in your digestive tract that is leaking air into your belly, is that right?”
“No, I don’t want,” she responded.
“Okay. If you’d like, we can get you upstairs and make sure you are comfortable then. Is that alright?” I asked.
“Yes, it’s alright,” she said. Ms. Calo could only speak in discrete phrases; long conversations were taxing. I looked over at her son, who silently held his mother’s hand.
“What questions can I answer about everything that is happening — I know it can be overwhelming…” I started.
“Nothing,” Ms. Calo noted. Her son acknowledged her response.
After a pause, I thanked them and excused myself. Ms. Calo had already heard about her prognosis from the surgeons. I didn’t want to harp on it in what may be the final days of her life. As I started to reach out to the Medicine team, the nurse walked past me.
“Hey, did you speak with them?” she asked.
“Yeah, Surgery spoke with them too and said they wanted palliative care; she declined surgery when we spoke just now as well,” I said.
The nurse looked at me quizzically. “I don’t think her son knows how serious her situation is,” she started.
“What do you mean?”
“I mean, he’s been saying she can be upstairs for a week to see if she will heal and then they can decide about the surgery.”
“But, she’s probably not even going to make it through the week with her condition. Surgery told me she understood the risks of declining the operation…”
“I don’t know, I just know she’s still full code in the chart,” the nurse said, referring to the fact that Ms. Calo’s records still indicated that she would want every life-saving measure taken if her health were to decline.
Worried about the conversation, I confirmed with Surgery that the discussion had been comprehensive and that the patient understood the options available to her as well as the risks and benefits of each option before making a decision. They re-emphasized that the patient preferred palliative or end-of-life care. I stepped back into the patient’s room.
“Ms. Calo, I’m back!” I said. She turned her head a bit to see me.
“Hello!” she exclaimed back.
“I just wanted to ask a couple of more questions,” I started, sitting back down on the stool near the bed. I looked at the dying woman in front of me and was reminded profoundly that this, my first end-of-life care conversation, would likely be one of the last conversations she would have in her life.
As my hand rested on her thin bony shoulder, it surprised me that this woman, so much younger than my own mother, could have such a slight frame. In that moment, as she turned to look at me and her son turned his gaze downward quietly, I noticed just how young her son was. He had to be around my age, still learning to be an adult yet saddled with the immense responsibility of caring for a terminally ill loved one. I thought about just how typical their family must have been before hearing the news of her cancer.
I didn’t know anymore how to have this conversation with Ms. Calo. Discussing end of life care with a patient and their family is both an art and a science. Medical school taught me the science, but nothing truly prepares anyone to tackle the art. Nothing prepares anyone to be the sole physician in that room sitting by a critically ill patient discussing what they will want in, not a remote possibility, but rather an overwhelming probability of quickly impending death.
How, I wondered, could I ask a dying woman what she would want if she died sooner than she had ever anticipated.
And, how could I do that with overhead alerts calling me to other patients who were rushed in with gunshot wounds and heart attacks. Though Ms. Calo was critically ill, she was relatively stable compared to the patients announced overhead, who required my emergent and immediate attention.
However, Ms. Calo, too, deserved my undivided attention. It struck me just how challenging it would be to have this conversation in a busy emergency department in what may be the last few days of Ms. Calo’s life.
The woman in front of me had two very undesirable paths ahead of her from a medical standpoint —
- She could be DNR/DNI and pursue palliative care options towards the end of her life: This essentially meant that she would forego any heroic life-preserving measures in the event that her heart or breathing stopped. It also meant that she would receive pain medication in the mere days it would likely take for the pneumoperitoneum to take her life.
- She could pursue surgery: As the only definitive way of addressing her pneumoperitoneum, this option could potentially preserve Ms. Calo’s life past this particular medical event. However, given her baseline state of health, it also meant taking an enormous risk that could rob her of any meaningful life that very night.
If Ms. Calo refused surgery, any heroic life-saving measures would likely be futile with a small chance that they may leave her unconscious but alive on machines she may never come off of. It was a Catch-22 no one anticipates when they visit the Emergency Department for belly pain.
“Ms. Calo,” I started, “thank you again for taking the time to speak with me. I know a lot has happened since you came into the Emergency Department today, and I understand that this is a very difficult experience. But I want to make sure that we are honoring your wishes as we help you through it.”
“Your condition here, the air in your belly,” I started, “can you tell me more about your understanding of it?”
Ms. Calo verbalized a crystal clear understanding of her condition before I explained to her that surgery would possibly alleviate the problem, but also pose its own set of risks.
“What’s the alternative?” her son asked.
“Well, the alternative is making sure your mother is comfortable through this experience. These holes don’t often close by themselves,” I turned to Ms. Calo, “and the inflammation can lead to malfunctioning of other organs in your body, which can be a painful experience. We can help address that with pain medication.”
Ms. Calo’s son looked at her, verbalizing what I had danced around. “There are two options ma: 1) the surgery, which you may not wake up from, but which could help you live a bit longer, or 2) probably dying comfortably with pain medication, but being alive for a few more days.”
“I know,” Ms. Calo paused, “I don’t know. I need time,” she finished, asking for the one thing she did not have.
I nodded my head. “I understand,” I said, “There are a few other things we should discuss though.”
“Okay,” she said.
“Sometimes, when a person is very sick, there is a risk of them feeling worse,” I took a deep breath, “If they start to feel worse, something bad could happen to their heart or their breathing, and if that were to happen, we have some ways of helping them if they would like.” I paused and Ms. Calo nodded in acknowledgement. “We can try CPR to try and bring back a person’s heartbeat and we can use a breathing tube that is attached to a machine that can breathe for a person. People are not generally conscious when we do those things and we try not to wait for people to get that sick to discuss those options.”
Ms. Calo was still, her eyes closing from fatigue.
“Ms. Calo?” I tapped her on the shoulder and she opened her eyes slowly again, “Are you understanding some of the things we can do when people get really sick?
“Yes,” she said.
“Some people want us to do all of those things and others do not — they say ‘just let me go if I go.’ I’m hoping to get a better idea of whether you would want us to do those things for you or not if you were to get sicker.”
Ms. Calo closed her eyes again and was silent. Her son squeezed her hand.
“Ma, she’s asking if you want them to put a tube in you and hook you up to a breathing machine if you need it to stay alive.”
I jumped in, “I just want to clarify that if that were you happen, you wouldn’t really be able to interact with anyone while on the breathing machine and there is no guarantee that you would be able to stay alive after we take you off of it.”
The seconds that Ms. Calo spent thinking about her decision were excruciating.
“Yes,” she finally said.
“Yes…” I paused to clarify.
“Yes, I want the machines. Do everything.”
“Okay, Ms. Calo,” I paused. “But can you tell me more about why you would like the machines, but not the surgery?”
Ms. Calo looked appropriately distressed about the decisions she was having to make. “I want to be alive,” she finally said.
I looked at her cachectic body, turning yellow from the metastases to her liver, swelling up from the air in her belly, and I understood.
Ms. Calo had a greater chance of being alive tomorrow if she didn’t do the surgery tonight. And though she had a more certain chance of dying in a week without a successful operation, her surgery was far from being a guaranteed success.
Ms. Calo wanted to be resuscitated and be on machines if that’s what it took for her to be alive because that’s all she wanted. That’s all she must wanted since her diagnosis, through multiple rounds of chemotherapy and the radiation therapy she was scheduled to have earlier that very day. Yet, even if Ms. Calo were to survive any of the options she was having to choose between, her health would likely deteriorate until the cancer or another medical complication took her life.
Ms. Calo wanted to be alive, but her body was just not giving her that option. Ms. Calo wanted to be alive, but nothing we could do would help her accomplish that. Nothing a physician, nothing a nurse, nothing a healer or a human being or cutting-edge technology could do would give her a better chance that not of being alive.
I remember that sobering moment of realization with such clarity. Her heart rate elevated, her O2 saturation stable at 95% as she breathed in what she hoped would be life-restoring oxygen. Her eyes pleading for the impossible as she looked me with such a deep sense of sadness and disillusionment. Those eyes that lovingly raised the son who was by her side now showed me they knew she was not going to be around to see the type of man he becomes.
I sat with her for as long as I possibly could. I let my attending physician know it may be a while and my other patients would have to wait a bit longer. I was thankful it was a slow night and that I was only interrupted twice during our conversation. And when I finally got home after the night was over, I sat in the driver’s seat of my car outside of my apartment, leaned my head back against the headrest, closed my eyes against the sunlight that had peaked over the horizon, and finally let free the tears that had been forming behind my eyelids throughout my thirteen hours at the hospital.
I found out later in the week that Ms. Calo had died just four days after our conversation. She will never get a chance to read this, but I hope she knew that she was loved during her visit to our Emergency Department. And, even though there wasn’t a thing I could do about it, I hope Ms. Calo knows just how much her resident physician wants her to be alive too.
Pavitra P. Krishnamani is an EM resident physician with a background in global health interested in innovating how we deliver healthcare to our patients at home and abroad. To learn more about her and her work, check out her website.
*Publish dates for articles discussing patient encounters are disparate from when the encounter actually occurred in order to protect patient privacy. Names, ages, and other encounter details are also modified to protect patient privacy.