Ilana Yurkiewicz, MD

A 45-year-old comes to the emergency department because of abdominal pain for the last few months. She has been belching and hiccuping, and she has lost 20 pounds.

A 45-year-old comes to the emergency department, where a CT scan shows a large mass in her stomach. There also are enlarged lymph nodes nearby and far away, and the wall of her abdomen is studded with smaller tumors.

A 45-year-old comes to the emergency department and is told she needs to be admitted to the hospital to work this up. It’s likely cancer, she is told, but the only way to confirm the diagnosis is with a biopsy. They do a procedure in which they insert a camera through her mouth and down her esophagus, and they take a sample of the large mass in her stomach. It is cancer – and it’s widely metastatic.

The resident on her team sends me a text. She wants to know: “What do you do in cases like this?”

Except she is not asking for my advice on medical management. The same day the patient is told it’s cancer, she has a confession. She has no insurance.

I read the text, then turn to the oncology case manager sitting next to me. We talk it through and the answer is as I suspected.

“She can be seen in the county clinic,” I text back, and give the name of an oncologist there. “Or, she can apply for emergency Medi-Cal to follow up at our hospital. But that process can take over a month to get approval.”

Except the case manager looks into it further. Actually, she does not qualify for emergency Medi-Cal because she invoked it earlier that year when she had an infection.

When it’s an emergency, hospitals tend to handle this kind of situation well. I’ve seen hospitals absorb the costs of major medical interventions when a person is acutely ill. They call it a charity case, and they cover all the costs of acute illness and treatment when the patient cannot.

But what this person needs is different. The treatment she needs is not emergent. What she needs is a regular oncologist who can give chemotherapy, monitor for side effects, check her blood counts, get regular scans to monitor the disease, and have conversations with her to navigate the bigger questions. What she needs is an ongoing relationship.

That is harder for a hospital to absorb.

I think back to a year ago, when I was volunteering at the free clinic. A 77-year-old man came in complaining of increased urinary frequency. I did a rectal exam, and I felt it: a large, irregular prostate mass. I thought of all I would normally do, down the algorithm of treatment – I’d order a PSA blood test, arrange for him to have a biopsy, likely get a CT scan, then get him back in the clinic to start treatment. But there, I could not do any of that. There, I was lucky when I could get someone a $4 medication. There, all I could do was hand him the truth. “I am concerned you have prostate cancer,” I said.

I remember how he began crying tears of joy. “God bless you,” he said, grabbing my hand. God bless me? For what? For handing him a problem but no solution? For sharing a suspicion of a diagnosis that could kill him but being unable to intervene? Is it really better knowing?

I deliver a lot of bad news in oncology, but I usually get to blame the disease. The cancer is aggressive. The cancer is causing your pain.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

A 45-year-old comes to the emergency department because of abdominal pain for the last few months. She has been belching and hiccuping, and she has lost 20 pounds.

A 45-year-old comes to the emergency department, where a CT scan shows a large mass in her stomach. There also are enlarged lymph nodes nearby and far away, and the wall of her abdomen is studded with smaller tumors.

A 45-year-old comes to the emergency department and is told she needs to be admitted to the hospital to work this up. It’s likely cancer, she is told, but the only way to confirm the diagnosis is with a biopsy. They do a procedure in which they insert a camera through her mouth and down her esophagus, and they take a sample of the large mass in her stomach. It is cancer – and it’s widely metastatic.

The resident on her team sends me a text. She wants to know: “What do you do in cases like this?”

Except she is not asking for my advice on medical management. The same day the patient is told it’s cancer, she has a confession. She has no insurance.

I read the text, then turn to the oncology case manager sitting next to me. We talk it through and the answer is as I suspected.

“She can be seen in the county clinic,” I text back, and give the name of an oncologist there. “Or, she can apply for emergency Medi-Cal to follow up at our hospital. But that process can take over a month to get approval.”

Except the case manager looks into it further. Actually, she does not qualify for emergency Medi-Cal because she invoked it earlier that year when she had an infection.

When it’s an emergency, hospitals tend to handle this kind of situation well. I’ve seen hospitals absorb the costs of major medical interventions when a person is acutely ill. They call it a charity case, and they cover all the costs of acute illness and treatment when the patient cannot.

But what this person needs is different. The treatment she needs is not emergent. What she needs is a regular oncologist who can give chemotherapy, monitor for side effects, check her blood counts, get regular scans to monitor the disease, and have conversations with her to navigate the bigger questions. What she needs is an ongoing relationship.

That is harder for a hospital to absorb.

I think back to a year ago, when I was volunteering at the free clinic. A 77-year-old man came in complaining of increased urinary frequency. I did a rectal exam, and I felt it: a large, irregular prostate mass. I thought of all I would normally do, down the algorithm of treatment – I’d order a PSA blood test, arrange for him to have a biopsy, likely get a CT scan, then get him back in the clinic to start treatment. But there, I could not do any of that. There, I was lucky when I could get someone a $4 medication. There, all I could do was hand him the truth. “I am concerned you have prostate cancer,” I said.

I remember how he began crying tears of joy. “God bless you,” he said, grabbing my hand. God bless me? For what? For handing him a problem but no solution? For sharing a suspicion of a diagnosis that could kill him but being unable to intervene? Is it really better knowing?

I deliver a lot of bad news in oncology, but I usually get to blame the disease. The cancer is aggressive. The cancer is causing your pain.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

A 45-year-old comes to the emergency department because of abdominal pain for the last few months. She has been belching and hiccuping, and she has lost 20 pounds.

A 45-year-old comes to the emergency department, where a CT scan shows a large mass in her stomach. There also are enlarged lymph nodes nearby and far away, and the wall of her abdomen is studded with smaller tumors.

A 45-year-old comes to the emergency department and is told she needs to be admitted to the hospital to work this up. It’s likely cancer, she is told, but the only way to confirm the diagnosis is with a biopsy. They do a procedure in which they insert a camera through her mouth and down her esophagus, and they take a sample of the large mass in her stomach. It is cancer – and it’s widely metastatic.

The resident on her team sends me a text. She wants to know: “What do you do in cases like this?”

Except she is not asking for my advice on medical management. The same day the patient is told it’s cancer, she has a confession. She has no insurance.

I read the text, then turn to the oncology case manager sitting next to me. We talk it through and the answer is as I suspected.

“She can be seen in the county clinic,” I text back, and give the name of an oncologist there. “Or, she can apply for emergency Medi-Cal to follow up at our hospital. But that process can take over a month to get approval.”

Except the case manager looks into it further. Actually, she does not qualify for emergency Medi-Cal because she invoked it earlier that year when she had an infection.

When it’s an emergency, hospitals tend to handle this kind of situation well. I’ve seen hospitals absorb the costs of major medical interventions when a person is acutely ill. They call it a charity case, and they cover all the costs of acute illness and treatment when the patient cannot.

But what this person needs is different. The treatment she needs is not emergent. What she needs is a regular oncologist who can give chemotherapy, monitor for side effects, check her blood counts, get regular scans to monitor the disease, and have conversations with her to navigate the bigger questions. What she needs is an ongoing relationship.

That is harder for a hospital to absorb.

I think back to a year ago, when I was volunteering at the free clinic. A 77-year-old man came in complaining of increased urinary frequency. I did a rectal exam, and I felt it: a large, irregular prostate mass. I thought of all I would normally do, down the algorithm of treatment – I’d order a PSA blood test, arrange for him to have a biopsy, likely get a CT scan, then get him back in the clinic to start treatment. But there, I could not do any of that. There, I was lucky when I could get someone a $4 medication. There, all I could do was hand him the truth. “I am concerned you have prostate cancer,” I said.

I remember how he began crying tears of joy. “God bless you,” he said, grabbing my hand. God bless me? For what? For handing him a problem but no solution? For sharing a suspicion of a diagnosis that could kill him but being unable to intervene? Is it really better knowing?

I deliver a lot of bad news in oncology, but I usually get to blame the disease. The cancer is aggressive. The cancer is causing your pain.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

I cared for my first patient with leukemia my first month as a doctor. Actually, he would protest that characterization. Marty didn’t have leukemia anymore. After chemotherapy and a bone marrow transplant, he was a few years out with no evidence of disease. While his hematologist was hesitant to use the word “cured” until more time had passed, he had been in a lasting remission.

Except that was the chart version of Marty’s story, not his own. He was profoundly depressed, he confided in me during our first meeting. The part missing from his chart was the toll this entire saga had taken on his emotional well-being and personal life. He was diagnosed as a college sophomore, left school for treatment, and then never went back. He was pulled from his friends and his life.

“I never thought I would be the guy living in my parents’ basement,” he told me. “No job. No friends. No girlfriend.”

And, the graft-versus-host disease was still affecting him. His skin chronically itched. The light bothered his eyes, so he couldn’t drive long distances. Insecure about his skin and his vision, he self-imposed limitations on his activities, which in turn limited his hobbies.

In medical literature, what Marty was going through is chalked up to issues in survivorship. Many patients experience some version of this story. And it’s often not the hematologist or oncologist, but primary care physicians, who are responsible for managing this challenging aftermath.

Primary care physicians are responsible for a lot. After a certain duration of remission, I’ve noticed we tell some of our hematology and oncology patients, “Congratulations! You’ve graduated our clinic. We are happy to see you back if you’d like. But really, your primary care physician can manage your health now.”

In addition to depression, there was anxiety, understandably centered on the tenuousness of his health. I remember how Marty would send urgent emails and call the office after each blood test. If anything came back abnormal, there came a slew of questions. The meaning behind them was clear: The questions were filled with a fear that it could be the leukemia coming back.

What he didn’t know was that I was scared, too. After all, I was an internal medicine resident, not a hematologist. Was I checking the right labs? Was I taking his concerns seriously enough? Behind the scenes, I checked myself by running things by his bone marrow transplant doctor on a regular basis. She guided me on guiding him.

I often thought that I couldn’t imagine what he was feeling. We were the same age, but our day-to-day concerns took a drastically different tone. We both took a deep interest in his blood work, but while I felt angst over taking responsibility for them, he worried about whether they signaled an impending death.

“If the leukemia does come back,” he told me one day, “I don’t think I want to treat it. I can’t deal with all that again.”

There were many times he wanted to give up, he told me, and it was only for his parents that he pushed through. But now, he said, if it came back and the odds of curing it were that much smaller, he couldn’t do it for his parents again. He would take his savings, travel the world, and not look back.

I listened. I felt I understood his values at that point. I could not disagree.

Looking back, I realize some of my best help to Marty was through paperwork. It wasn’t glamorous, but it was what Marty needed. The passport to putting his life back together included many notes from a doctor: One to get him back into school, another to live in a dorm room, another for accommodations for his vision during exams, another to participate in sports.

At the time, I still was in newfound awe of the power of my signature; suddenly, signing MD at the end of documents persuaded schools, employers, and others to provide necessary services for my patients. I couldn’t think of a better use of my signature than to help Marty get his life back.

At the end of my residency, when I broke the news that I wouldn’t be a primary care physician anymore, I tried to soften it by sharing that I would be staying at Stanford for a fellowship in hematology and oncology. I’d be around. When I casually suggested he could come by anytime to say hello, he said no, and I then realized my blunder. He didn’t want to see me in a cancer center. He had done his time there. That was not the place he wanted to be a patient, ever again.

This month Marty turned 30, and so did I. He occasionally sends me updates from school, which I always enjoy receiving. He is on a sports team; he is pursuing a degree in economics; he has friends. And, he remains in remission. It took a long time, but he is happy.

During our last visit together, Marty gave me a stuffed animal with the name of the college I had helped him go back to. It’s sitting on my bookshelf. It reminds me how to be there for patients during the aftermath, a time that can be easily overlooked as the hardest. It reminds me what matters.

Minor details of this story have been changed to protect privacy.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

I cared for my first patient with leukemia my first month as a doctor. Actually, he would protest that characterization. Marty didn’t have leukemia anymore. After chemotherapy and a bone marrow transplant, he was a few years out with no evidence of disease. While his hematologist was hesitant to use the word “cured” until more time had passed, he had been in a lasting remission.

Except that was the chart version of Marty’s story, not his own. He was profoundly depressed, he confided in me during our first meeting. The part missing from his chart was the toll this entire saga had taken on his emotional well-being and personal life. He was diagnosed as a college sophomore, left school for treatment, and then never went back. He was pulled from his friends and his life.

“I never thought I would be the guy living in my parents’ basement,” he told me. “No job. No friends. No girlfriend.”

And, the graft-versus-host disease was still affecting him. His skin chronically itched. The light bothered his eyes, so he couldn’t drive long distances. Insecure about his skin and his vision, he self-imposed limitations on his activities, which in turn limited his hobbies.

In medical literature, what Marty was going through is chalked up to issues in survivorship. Many patients experience some version of this story. And it’s often not the hematologist or oncologist, but primary care physicians, who are responsible for managing this challenging aftermath.

Primary care physicians are responsible for a lot. After a certain duration of remission, I’ve noticed we tell some of our hematology and oncology patients, “Congratulations! You’ve graduated our clinic. We are happy to see you back if you’d like. But really, your primary care physician can manage your health now.”

In addition to depression, there was anxiety, understandably centered on the tenuousness of his health. I remember how Marty would send urgent emails and call the office after each blood test. If anything came back abnormal, there came a slew of questions. The meaning behind them was clear: The questions were filled with a fear that it could be the leukemia coming back.

What he didn’t know was that I was scared, too. After all, I was an internal medicine resident, not a hematologist. Was I checking the right labs? Was I taking his concerns seriously enough? Behind the scenes, I checked myself by running things by his bone marrow transplant doctor on a regular basis. She guided me on guiding him.

I often thought that I couldn’t imagine what he was feeling. We were the same age, but our day-to-day concerns took a drastically different tone. We both took a deep interest in his blood work, but while I felt angst over taking responsibility for them, he worried about whether they signaled an impending death.

“If the leukemia does come back,” he told me one day, “I don’t think I want to treat it. I can’t deal with all that again.”

There were many times he wanted to give up, he told me, and it was only for his parents that he pushed through. But now, he said, if it came back and the odds of curing it were that much smaller, he couldn’t do it for his parents again. He would take his savings, travel the world, and not look back.

I listened. I felt I understood his values at that point. I could not disagree.

Looking back, I realize some of my best help to Marty was through paperwork. It wasn’t glamorous, but it was what Marty needed. The passport to putting his life back together included many notes from a doctor: One to get him back into school, another to live in a dorm room, another for accommodations for his vision during exams, another to participate in sports.

At the time, I still was in newfound awe of the power of my signature; suddenly, signing MD at the end of documents persuaded schools, employers, and others to provide necessary services for my patients. I couldn’t think of a better use of my signature than to help Marty get his life back.

At the end of my residency, when I broke the news that I wouldn’t be a primary care physician anymore, I tried to soften it by sharing that I would be staying at Stanford for a fellowship in hematology and oncology. I’d be around. When I casually suggested he could come by anytime to say hello, he said no, and I then realized my blunder. He didn’t want to see me in a cancer center. He had done his time there. That was not the place he wanted to be a patient, ever again.

This month Marty turned 30, and so did I. He occasionally sends me updates from school, which I always enjoy receiving. He is on a sports team; he is pursuing a degree in economics; he has friends. And, he remains in remission. It took a long time, but he is happy.

During our last visit together, Marty gave me a stuffed animal with the name of the college I had helped him go back to. It’s sitting on my bookshelf. It reminds me how to be there for patients during the aftermath, a time that can be easily overlooked as the hardest. It reminds me what matters.

Minor details of this story have been changed to protect privacy.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

I cared for my first patient with leukemia my first month as a doctor. Actually, he would protest that characterization. Marty didn’t have leukemia anymore. After chemotherapy and a bone marrow transplant, he was a few years out with no evidence of disease. While his hematologist was hesitant to use the word “cured” until more time had passed, he had been in a lasting remission.

Except that was the chart version of Marty’s story, not his own. He was profoundly depressed, he confided in me during our first meeting. The part missing from his chart was the toll this entire saga had taken on his emotional well-being and personal life. He was diagnosed as a college sophomore, left school for treatment, and then never went back. He was pulled from his friends and his life.

“I never thought I would be the guy living in my parents’ basement,” he told me. “No job. No friends. No girlfriend.”

And, the graft-versus-host disease was still affecting him. His skin chronically itched. The light bothered his eyes, so he couldn’t drive long distances. Insecure about his skin and his vision, he self-imposed limitations on his activities, which in turn limited his hobbies.

In medical literature, what Marty was going through is chalked up to issues in survivorship. Many patients experience some version of this story. And it’s often not the hematologist or oncologist, but primary care physicians, who are responsible for managing this challenging aftermath.

Primary care physicians are responsible for a lot. After a certain duration of remission, I’ve noticed we tell some of our hematology and oncology patients, “Congratulations! You’ve graduated our clinic. We are happy to see you back if you’d like. But really, your primary care physician can manage your health now.”

In addition to depression, there was anxiety, understandably centered on the tenuousness of his health. I remember how Marty would send urgent emails and call the office after each blood test. If anything came back abnormal, there came a slew of questions. The meaning behind them was clear: The questions were filled with a fear that it could be the leukemia coming back.

What he didn’t know was that I was scared, too. After all, I was an internal medicine resident, not a hematologist. Was I checking the right labs? Was I taking his concerns seriously enough? Behind the scenes, I checked myself by running things by his bone marrow transplant doctor on a regular basis. She guided me on guiding him.

I often thought that I couldn’t imagine what he was feeling. We were the same age, but our day-to-day concerns took a drastically different tone. We both took a deep interest in his blood work, but while I felt angst over taking responsibility for them, he worried about whether they signaled an impending death.

“If the leukemia does come back,” he told me one day, “I don’t think I want to treat it. I can’t deal with all that again.”

There were many times he wanted to give up, he told me, and it was only for his parents that he pushed through. But now, he said, if it came back and the odds of curing it were that much smaller, he couldn’t do it for his parents again. He would take his savings, travel the world, and not look back.

I listened. I felt I understood his values at that point. I could not disagree.

Looking back, I realize some of my best help to Marty was through paperwork. It wasn’t glamorous, but it was what Marty needed. The passport to putting his life back together included many notes from a doctor: One to get him back into school, another to live in a dorm room, another for accommodations for his vision during exams, another to participate in sports.

At the time, I still was in newfound awe of the power of my signature; suddenly, signing MD at the end of documents persuaded schools, employers, and others to provide necessary services for my patients. I couldn’t think of a better use of my signature than to help Marty get his life back.

At the end of my residency, when I broke the news that I wouldn’t be a primary care physician anymore, I tried to soften it by sharing that I would be staying at Stanford for a fellowship in hematology and oncology. I’d be around. When I casually suggested he could come by anytime to say hello, he said no, and I then realized my blunder. He didn’t want to see me in a cancer center. He had done his time there. That was not the place he wanted to be a patient, ever again.

This month Marty turned 30, and so did I. He occasionally sends me updates from school, which I always enjoy receiving. He is on a sports team; he is pursuing a degree in economics; he has friends. And, he remains in remission. It took a long time, but he is happy.

During our last visit together, Marty gave me a stuffed animal with the name of the college I had helped him go back to. It’s sitting on my bookshelf. It reminds me how to be there for patients during the aftermath, a time that can be easily overlooked as the hardest. It reminds me what matters.

Minor details of this story have been changed to protect privacy.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

Outside the clinic room, I paced the hallway and pressed the phone to my ear, waiting for the resident to pick up.

“I have patient SB in clinic for her appointment now. I’m hoping to get preliminary results of her bone marrow biopsy.”

I had known SB well from her month-long inpatient stay on our leukemia service. She had come in with a white blood cell count through the roof – a relapse of her leukemia, 4 years out from her bone marrow transplant. It was devastating. After a few cycles of chemotherapy and a bone marrow biopsy yesterday to see if it had worked, she was here now to get her results and decide next steps.

“Hello!” I said and we hugged. Her mother and father accompanied her, sitting still with their hands folded nervously. SB had multiple complications during her hospitalization, and we went through how each was doing. Did she get her new heart medication? Did she do okay on the antibiotics? Was the rash improving? With each question, she and her parents seemed more nervous.

There was an elephant in that exam room. Asking a cancer patient in limbo if she refilled her heart medications becomes as trivial as asking her about the weather. SB and her parents were here for one thing, from which everything else was a distraction. The only question that mattered was the one splitting their world in two: Is their daughter in remission or not?

“She’s here with her parents now,” I said outside the door. “What do you think?” The resident told me he had looked at the case this morning, and it looked like 3% blasts. I smiled – anything under 5% is good, considered a remission. But the pathology resident still hadn’t reviewed the sample with his attending.

Inside the room, after exhausting all other conversation, I hesitated. Should I tell SB the preliminary results? Or should I wait for the final diagnosis?

I’d been burned before. Once, I told a patient with a new diagnosis of esophageal cancer that it was early stage. It was not. Upon additional radiology review, the surrounding lymph nodes were enlarged, and they were ultimately found to be metastases. That initial conversation – and the subsequent one, in which I had to walk back my reassurance that the cancer was contained – was seared into my mind.

I learned from it. Giving preliminary results can be dangerous. What if we say all clear and then learn days later it isn’t so? Or what if we reveal the cancer is progressing, causing despair and re-evaluation of life’s priorities, only to find out it was a false alarm? False alarms are terrifying, and false reassurance is cruel, yet all the while, excessive waiting can feel excruciating for the person whose very existence is suspended.

As hematologists and oncologists, we scroll through CT scans, and we look at slides ourselves. But we also value and depend on the expertise of our colleagues in other departments like pathology and radiology who have their own workflow. It’s a process; it’s for quality assurance that we don’t get immediate results, and that’s a good thing.

It depends on the patient, but often I find the most straightforward solution is to say exactly what is true. For some, the combination of incredibly high stakes coupled with extended wait times becomes agonizing. They might incorrectly read into unrelated, benign actions – if my pager goes off or I look at the computer screen a moment too long – as clues into something I know and am not sharing. They might be so distracted we cannot address anything else.

So I’ve walked back from my initial “do not share anything” reaction to “it’s sometimes okay” – as long as the patient understands the nuances of what preliminary results do and do not mean. The problem with my esophageal cancer patient was not that I had shared preliminary results; it was that I hadn’t framed them as such. I had simply stated the findings, portraying them as certain.

Now, I tend to break the fourth wall. I explain that it’s the resident’s read, that it isn’t final, and that it can be amended. Do you still want to know?

Most people say yes.

SB and her parents were in that boat. They had driven 3 hours to make this appointment. They didn’t want to drive home empty handed.

“It’s preliminary,” I carefully qualified.

“Okay.”

“The final results may be different.”

“Okay, yes. We understand.”

The three of them held hands. They were holding their breath.

“It looks like remission.”

SB cried. Her mother threw her arms around my neck. “You know, she broke down when you stepped out,” her father whispered to me. “She was sure it meant bad news.”

I tried to be happy for them and with them, but now I was the one holding my breath. I hoped I wouldn’t have to take it all away.

For the next 24 hours, I compulsively checked SB’s chart, hoping final results would populate that would be consistent with what I had shared.

The next day, the pathologist called me, and I called SB.

“I have the final results,” I said, followed by my favorite phrase in hematology and oncology. “I have good news.”

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

Outside the clinic room, I paced the hallway and pressed the phone to my ear, waiting for the resident to pick up.

“I have patient SB in clinic for her appointment now. I’m hoping to get preliminary results of her bone marrow biopsy.”

I had known SB well from her month-long inpatient stay on our leukemia service. She had come in with a white blood cell count through the roof – a relapse of her leukemia, 4 years out from her bone marrow transplant. It was devastating. After a few cycles of chemotherapy and a bone marrow biopsy yesterday to see if it had worked, she was here now to get her results and decide next steps.

“Hello!” I said and we hugged. Her mother and father accompanied her, sitting still with their hands folded nervously. SB had multiple complications during her hospitalization, and we went through how each was doing. Did she get her new heart medication? Did she do okay on the antibiotics? Was the rash improving? With each question, she and her parents seemed more nervous.

There was an elephant in that exam room. Asking a cancer patient in limbo if she refilled her heart medications becomes as trivial as asking her about the weather. SB and her parents were here for one thing, from which everything else was a distraction. The only question that mattered was the one splitting their world in two: Is their daughter in remission or not?

“She’s here with her parents now,” I said outside the door. “What do you think?” The resident told me he had looked at the case this morning, and it looked like 3% blasts. I smiled – anything under 5% is good, considered a remission. But the pathology resident still hadn’t reviewed the sample with his attending.

Inside the room, after exhausting all other conversation, I hesitated. Should I tell SB the preliminary results? Or should I wait for the final diagnosis?

I’d been burned before. Once, I told a patient with a new diagnosis of esophageal cancer that it was early stage. It was not. Upon additional radiology review, the surrounding lymph nodes were enlarged, and they were ultimately found to be metastases. That initial conversation – and the subsequent one, in which I had to walk back my reassurance that the cancer was contained – was seared into my mind.

I learned from it. Giving preliminary results can be dangerous. What if we say all clear and then learn days later it isn’t so? Or what if we reveal the cancer is progressing, causing despair and re-evaluation of life’s priorities, only to find out it was a false alarm? False alarms are terrifying, and false reassurance is cruel, yet all the while, excessive waiting can feel excruciating for the person whose very existence is suspended.

As hematologists and oncologists, we scroll through CT scans, and we look at slides ourselves. But we also value and depend on the expertise of our colleagues in other departments like pathology and radiology who have their own workflow. It’s a process; it’s for quality assurance that we don’t get immediate results, and that’s a good thing.

It depends on the patient, but often I find the most straightforward solution is to say exactly what is true. For some, the combination of incredibly high stakes coupled with extended wait times becomes agonizing. They might incorrectly read into unrelated, benign actions – if my pager goes off or I look at the computer screen a moment too long – as clues into something I know and am not sharing. They might be so distracted we cannot address anything else.

So I’ve walked back from my initial “do not share anything” reaction to “it’s sometimes okay” – as long as the patient understands the nuances of what preliminary results do and do not mean. The problem with my esophageal cancer patient was not that I had shared preliminary results; it was that I hadn’t framed them as such. I had simply stated the findings, portraying them as certain.

Now, I tend to break the fourth wall. I explain that it’s the resident’s read, that it isn’t final, and that it can be amended. Do you still want to know?

Most people say yes.

SB and her parents were in that boat. They had driven 3 hours to make this appointment. They didn’t want to drive home empty handed.

“It’s preliminary,” I carefully qualified.

“Okay.”

“The final results may be different.”

“Okay, yes. We understand.”

The three of them held hands. They were holding their breath.

“It looks like remission.”

SB cried. Her mother threw her arms around my neck. “You know, she broke down when you stepped out,” her father whispered to me. “She was sure it meant bad news.”

I tried to be happy for them and with them, but now I was the one holding my breath. I hoped I wouldn’t have to take it all away.

For the next 24 hours, I compulsively checked SB’s chart, hoping final results would populate that would be consistent with what I had shared.

The next day, the pathologist called me, and I called SB.

“I have the final results,” I said, followed by my favorite phrase in hematology and oncology. “I have good news.”

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

Outside the clinic room, I paced the hallway and pressed the phone to my ear, waiting for the resident to pick up.

“I have patient SB in clinic for her appointment now. I’m hoping to get preliminary results of her bone marrow biopsy.”

I had known SB well from her month-long inpatient stay on our leukemia service. She had come in with a white blood cell count through the roof – a relapse of her leukemia, 4 years out from her bone marrow transplant. It was devastating. After a few cycles of chemotherapy and a bone marrow biopsy yesterday to see if it had worked, she was here now to get her results and decide next steps.

“Hello!” I said and we hugged. Her mother and father accompanied her, sitting still with their hands folded nervously. SB had multiple complications during her hospitalization, and we went through how each was doing. Did she get her new heart medication? Did she do okay on the antibiotics? Was the rash improving? With each question, she and her parents seemed more nervous.

There was an elephant in that exam room. Asking a cancer patient in limbo if she refilled her heart medications becomes as trivial as asking her about the weather. SB and her parents were here for one thing, from which everything else was a distraction. The only question that mattered was the one splitting their world in two: Is their daughter in remission or not?

“She’s here with her parents now,” I said outside the door. “What do you think?” The resident told me he had looked at the case this morning, and it looked like 3% blasts. I smiled – anything under 5% is good, considered a remission. But the pathology resident still hadn’t reviewed the sample with his attending.

Inside the room, after exhausting all other conversation, I hesitated. Should I tell SB the preliminary results? Or should I wait for the final diagnosis?

I’d been burned before. Once, I told a patient with a new diagnosis of esophageal cancer that it was early stage. It was not. Upon additional radiology review, the surrounding lymph nodes were enlarged, and they were ultimately found to be metastases. That initial conversation – and the subsequent one, in which I had to walk back my reassurance that the cancer was contained – was seared into my mind.

I learned from it. Giving preliminary results can be dangerous. What if we say all clear and then learn days later it isn’t so? Or what if we reveal the cancer is progressing, causing despair and re-evaluation of life’s priorities, only to find out it was a false alarm? False alarms are terrifying, and false reassurance is cruel, yet all the while, excessive waiting can feel excruciating for the person whose very existence is suspended.

As hematologists and oncologists, we scroll through CT scans, and we look at slides ourselves. But we also value and depend on the expertise of our colleagues in other departments like pathology and radiology who have their own workflow. It’s a process; it’s for quality assurance that we don’t get immediate results, and that’s a good thing.

It depends on the patient, but often I find the most straightforward solution is to say exactly what is true. For some, the combination of incredibly high stakes coupled with extended wait times becomes agonizing. They might incorrectly read into unrelated, benign actions – if my pager goes off or I look at the computer screen a moment too long – as clues into something I know and am not sharing. They might be so distracted we cannot address anything else.

So I’ve walked back from my initial “do not share anything” reaction to “it’s sometimes okay” – as long as the patient understands the nuances of what preliminary results do and do not mean. The problem with my esophageal cancer patient was not that I had shared preliminary results; it was that I hadn’t framed them as such. I had simply stated the findings, portraying them as certain.

Now, I tend to break the fourth wall. I explain that it’s the resident’s read, that it isn’t final, and that it can be amended. Do you still want to know?

Most people say yes.

SB and her parents were in that boat. They had driven 3 hours to make this appointment. They didn’t want to drive home empty handed.

“It’s preliminary,” I carefully qualified.

“Okay.”

“The final results may be different.”

“Okay, yes. We understand.”

The three of them held hands. They were holding their breath.

“It looks like remission.”

SB cried. Her mother threw her arms around my neck. “You know, she broke down when you stepped out,” her father whispered to me. “She was sure it meant bad news.”

I tried to be happy for them and with them, but now I was the one holding my breath. I hoped I wouldn’t have to take it all away.

For the next 24 hours, I compulsively checked SB’s chart, hoping final results would populate that would be consistent with what I had shared.

The next day, the pathologist called me, and I called SB.

“I have the final results,” I said, followed by my favorite phrase in hematology and oncology. “I have good news.”

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

One evening as the oncology fellow on call, I received a phone call from the ICU fellow.

“Can you meet me in the emergency room?” he asked. “I want to make sure we’re on the same page.”

A patient we had discharged from the hospital 2 days before was back. He had metastatic stomach cancer that had spread into his lungs and the lymph nodes in his chest. While he was in the hospital, he had required several liters of oxygen to maintain a normal work of breathing.

But now, he was in the emergency room, he was requiring a full face mask to help him breathe – and his oxygen levels were still dropping.

The ICU had been called. The next step along the algorithm of worsening breathing would be intubation. They would have to sedate him, put a breathing tube down his throat, and connect him to a ventilator to keep him alive.

But they didn’t want to do that if he was dying from his cancer.

Hence the call to me. My job, as the oncologist on call, was to answer the question: Is he dying?

Specifically, that meant weigh in on his cancer prognosis. Put his disease into context. Does he have any more options, chemotherapy or otherwise?

As an oncology fellow, I’ve found this to be one of the most common calls I get. Someone is critically ill and they need something to survive – maybe it’s intubation; maybe it’s surgery. The patient also happens to have metastatic cancer. The question posed to me is: Should we proceed?

It’s also one of the most difficult calls. Because doctors are historically bad at prognosticating. Because often I’m meeting the patient for the first time. Because the decision is huge and often final, and because both options are bad.

Suppose I say he has a good year or 2 ahead of him, and we intubate him – and then he never comes off the ventilator. We are eventually forced to withdraw care, and to the family it’s as though they are killing their father. It’s traumatic; it’s painful; and it deprives someone of a comfortable passing. Suppose I say he is dying from his cancer and we decide against a breathing tube. If I am wrong in that direction, a person’s life is cut short. It’s a perfect storm of high risk and low certainty.

Many people with metastatic cancer say they wouldn’t want invasive treatment near the end of life. But how do we know when it’s the end? There is still a moment when you must determine: Is this it? The truth is it’s not always clear.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

One evening as the oncology fellow on call, I received a phone call from the ICU fellow.

“Can you meet me in the emergency room?” he asked. “I want to make sure we’re on the same page.”

A patient we had discharged from the hospital 2 days before was back. He had metastatic stomach cancer that had spread into his lungs and the lymph nodes in his chest. While he was in the hospital, he had required several liters of oxygen to maintain a normal work of breathing.

But now, he was in the emergency room, he was requiring a full face mask to help him breathe – and his oxygen levels were still dropping.

The ICU had been called. The next step along the algorithm of worsening breathing would be intubation. They would have to sedate him, put a breathing tube down his throat, and connect him to a ventilator to keep him alive.

But they didn’t want to do that if he was dying from his cancer.

Hence the call to me. My job, as the oncologist on call, was to answer the question: Is he dying?

Specifically, that meant weigh in on his cancer prognosis. Put his disease into context. Does he have any more options, chemotherapy or otherwise?

As an oncology fellow, I’ve found this to be one of the most common calls I get. Someone is critically ill and they need something to survive – maybe it’s intubation; maybe it’s surgery. The patient also happens to have metastatic cancer. The question posed to me is: Should we proceed?

It’s also one of the most difficult calls. Because doctors are historically bad at prognosticating. Because often I’m meeting the patient for the first time. Because the decision is huge and often final, and because both options are bad.

Suppose I say he has a good year or 2 ahead of him, and we intubate him – and then he never comes off the ventilator. We are eventually forced to withdraw care, and to the family it’s as though they are killing their father. It’s traumatic; it’s painful; and it deprives someone of a comfortable passing. Suppose I say he is dying from his cancer and we decide against a breathing tube. If I am wrong in that direction, a person’s life is cut short. It’s a perfect storm of high risk and low certainty.

Many people with metastatic cancer say they wouldn’t want invasive treatment near the end of life. But how do we know when it’s the end? There is still a moment when you must determine: Is this it? The truth is it’s not always clear.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

One evening as the oncology fellow on call, I received a phone call from the ICU fellow.

“Can you meet me in the emergency room?” he asked. “I want to make sure we’re on the same page.”

A patient we had discharged from the hospital 2 days before was back. He had metastatic stomach cancer that had spread into his lungs and the lymph nodes in his chest. While he was in the hospital, he had required several liters of oxygen to maintain a normal work of breathing.

But now, he was in the emergency room, he was requiring a full face mask to help him breathe – and his oxygen levels were still dropping.

The ICU had been called. The next step along the algorithm of worsening breathing would be intubation. They would have to sedate him, put a breathing tube down his throat, and connect him to a ventilator to keep him alive.

But they didn’t want to do that if he was dying from his cancer.

Hence the call to me. My job, as the oncologist on call, was to answer the question: Is he dying?

Specifically, that meant weigh in on his cancer prognosis. Put his disease into context. Does he have any more options, chemotherapy or otherwise?

As an oncology fellow, I’ve found this to be one of the most common calls I get. Someone is critically ill and they need something to survive – maybe it’s intubation; maybe it’s surgery. The patient also happens to have metastatic cancer. The question posed to me is: Should we proceed?

It’s also one of the most difficult calls. Because doctors are historically bad at prognosticating. Because often I’m meeting the patient for the first time. Because the decision is huge and often final, and because both options are bad.

Suppose I say he has a good year or 2 ahead of him, and we intubate him – and then he never comes off the ventilator. We are eventually forced to withdraw care, and to the family it’s as though they are killing their father. It’s traumatic; it’s painful; and it deprives someone of a comfortable passing. Suppose I say he is dying from his cancer and we decide against a breathing tube. If I am wrong in that direction, a person’s life is cut short. It’s a perfect storm of high risk and low certainty.

Many people with metastatic cancer say they wouldn’t want invasive treatment near the end of life. But how do we know when it’s the end? There is still a moment when you must determine: Is this it? The truth is it’s not always clear.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

The evening James Wu (not his real name) learned he had leukemia, he asked his nurse to please get his doctor. There was something important he had to ask her.

“I have this mole. On my back.” He squirmed anxiously. “Doctor, is it dangerous?”

James did have something dangerous – though it had nothing to do with a skin blemish he’d had his whole life. Earlier that day, I had pulled up a chair and told him we had final results from the bone marrow biopsy I had done the day before. It was unfortunately what we suspected. James had cancer. It was a type of cancer called acute lymphoblastic leukemia, a cancer of the blood.

James had said nothing. He looked down, shocked, and crestfallen. Even though we had planted the seeds early that this was likely cancer, the confirmation is always heartbreaking. It closes the door on optimism, shutting out the slim hope that it could be something else. Anything else.

I could have said more. But I waited.

I stopped talking because my experiences have mirrored what the data shows: Once a patient hears “cancer,” they often stop listening. We could go on, spelling out the next steps and treatment options. But patients usually don’t retain it. The details don’t mean anything right now.

Instead, I usually just hint at what’s to come. Most importantly, I reassure them that we are with them now, every step of the way. This will be a road we’ll walk together.

It was silent for a while. Finally, James spoke.

“OK,” he said. “So … it’s not something in my diet?”

“No. It’s a leukemia.”

“It cannot be related to stress?”

“No. You did nothing to cause this.”

For most, it’s a process. After dropping the diagnostic bomb, treatment is another conversation. Prognosis another. If I have the luxury of continuity, I try to carve the information into chunks, giving patients time to process each piece.

This felt especially salient for James, who was in his mid-30s and had never even been in a hospital before, much less dealt with a serious diagnosis. His grandparents had died of “old age,” and no one in his family had been sick. He had never interacted with the health care system in a meaningful way. Even words like chemotherapy seemed beyond him, existing in a different world from the one he lived in. Cancer was abstract.

“Would I be awake during chemotherapy?”

“Yes. Completely.”

James had a wife, a 2-year-old, and a full-time job. Watching his daughter aimlessly wander around the hospital room, I wondered, were they planning on having more children? We could get the fertility specialist to see him before starting chemotherapy.

I looked at his nightstand, where his laptop was open to data-packed spreadsheets, and I wondered what his work meant for him. Would he want to continue working through his treatment? We could have our social worker write a letter to his employer.

There would be time for all of that. Later.

I said that, for tonight, there would be nothing else. Tomorrow, we would do an ultrasound of his heart and arrange for a special IV to administer chemotherapy. Then, I would come back, and we would talk about the treatment, and what it all means, in a lot more detail.

I asked James if he had any questions right now. As expected, he said no. Until a few hours later, when I was called about his very important question.

That day, looking into the terrified face of a previously healthy 30-something-year-old, I could see the future. I could see the month-long hospital stay. The chemotherapy would kill his immune system, he would get fevers, and bacteria would grow in his bloodstream. He’d get short of breath and we’d find fungus growing in his lungs. He’d take an antifungal and it would make him hallucinate. Maybe he’d spend a few days in the ICU, requiring a large catheter in his neck just to maintain his blood pressure. He would bleed; we would transfuse him with blood. He would get so many bone marrow biopsies and lumbar punctures that his skin would be marked, and he would tell each proceduralist where to go. It would be months of treatment. And then miraculously, it would go into remission. He would celebrate; his wife would cry. Maybe he’d get a bone marrow transplant; we’d find out his brother was a match, and he’d fly in from thousands of miles away. He would get graft-versus-host disease, and his skin would harden. And even after all of that, even if his bone marrow was clear of disease, he would not say he was “cured.” He would live in fear of this because he would know how likely it was to relapse. Maybe in a few months, maybe in a few years. Every cough would be a catastrophe. Every ache a fear of the worst. He would become intimately familiar with words like minimal residual disease and neutropenia, frequent the message boards, and always have a bag packed in case he needed to come back to the hospital. Everything else, from that moment on, would come in second place.

There, then, with his toddler playfully tugging at his hospital gown, I said none of that.

Instead, I examined his back. I told him his mole looked fine.

“Wow,” he breathed a long sigh of relief. “Thank you, doctor. That’s good news.”

Certain details of this story were modified slightly to protect privacy.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

The evening James Wu (not his real name) learned he had leukemia, he asked his nurse to please get his doctor. There was something important he had to ask her.

“I have this mole. On my back.” He squirmed anxiously. “Doctor, is it dangerous?”

James did have something dangerous – though it had nothing to do with a skin blemish he’d had his whole life. Earlier that day, I had pulled up a chair and told him we had final results from the bone marrow biopsy I had done the day before. It was unfortunately what we suspected. James had cancer. It was a type of cancer called acute lymphoblastic leukemia, a cancer of the blood.

James had said nothing. He looked down, shocked, and crestfallen. Even though we had planted the seeds early that this was likely cancer, the confirmation is always heartbreaking. It closes the door on optimism, shutting out the slim hope that it could be something else. Anything else.

I could have said more. But I waited.

I stopped talking because my experiences have mirrored what the data shows: Once a patient hears “cancer,” they often stop listening. We could go on, spelling out the next steps and treatment options. But patients usually don’t retain it. The details don’t mean anything right now.

Instead, I usually just hint at what’s to come. Most importantly, I reassure them that we are with them now, every step of the way. This will be a road we’ll walk together.

It was silent for a while. Finally, James spoke.

“OK,” he said. “So … it’s not something in my diet?”

“No. It’s a leukemia.”

“It cannot be related to stress?”

“No. You did nothing to cause this.”

For most, it’s a process. After dropping the diagnostic bomb, treatment is another conversation. Prognosis another. If I have the luxury of continuity, I try to carve the information into chunks, giving patients time to process each piece.

This felt especially salient for James, who was in his mid-30s and had never even been in a hospital before, much less dealt with a serious diagnosis. His grandparents had died of “old age,” and no one in his family had been sick. He had never interacted with the health care system in a meaningful way. Even words like chemotherapy seemed beyond him, existing in a different world from the one he lived in. Cancer was abstract.

“Would I be awake during chemotherapy?”

“Yes. Completely.”

James had a wife, a 2-year-old, and a full-time job. Watching his daughter aimlessly wander around the hospital room, I wondered, were they planning on having more children? We could get the fertility specialist to see him before starting chemotherapy.

I looked at his nightstand, where his laptop was open to data-packed spreadsheets, and I wondered what his work meant for him. Would he want to continue working through his treatment? We could have our social worker write a letter to his employer.

There would be time for all of that. Later.

I said that, for tonight, there would be nothing else. Tomorrow, we would do an ultrasound of his heart and arrange for a special IV to administer chemotherapy. Then, I would come back, and we would talk about the treatment, and what it all means, in a lot more detail.

I asked James if he had any questions right now. As expected, he said no. Until a few hours later, when I was called about his very important question.

That day, looking into the terrified face of a previously healthy 30-something-year-old, I could see the future. I could see the month-long hospital stay. The chemotherapy would kill his immune system, he would get fevers, and bacteria would grow in his bloodstream. He’d get short of breath and we’d find fungus growing in his lungs. He’d take an antifungal and it would make him hallucinate. Maybe he’d spend a few days in the ICU, requiring a large catheter in his neck just to maintain his blood pressure. He would bleed; we would transfuse him with blood. He would get so many bone marrow biopsies and lumbar punctures that his skin would be marked, and he would tell each proceduralist where to go. It would be months of treatment. And then miraculously, it would go into remission. He would celebrate; his wife would cry. Maybe he’d get a bone marrow transplant; we’d find out his brother was a match, and he’d fly in from thousands of miles away. He would get graft-versus-host disease, and his skin would harden. And even after all of that, even if his bone marrow was clear of disease, he would not say he was “cured.” He would live in fear of this because he would know how likely it was to relapse. Maybe in a few months, maybe in a few years. Every cough would be a catastrophe. Every ache a fear of the worst. He would become intimately familiar with words like minimal residual disease and neutropenia, frequent the message boards, and always have a bag packed in case he needed to come back to the hospital. Everything else, from that moment on, would come in second place.

There, then, with his toddler playfully tugging at his hospital gown, I said none of that.

Instead, I examined his back. I told him his mole looked fine.

“Wow,” he breathed a long sigh of relief. “Thank you, doctor. That’s good news.”

Certain details of this story were modified slightly to protect privacy.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

The evening James Wu (not his real name) learned he had leukemia, he asked his nurse to please get his doctor. There was something important he had to ask her.

“I have this mole. On my back.” He squirmed anxiously. “Doctor, is it dangerous?”

James did have something dangerous – though it had nothing to do with a skin blemish he’d had his whole life. Earlier that day, I had pulled up a chair and told him we had final results from the bone marrow biopsy I had done the day before. It was unfortunately what we suspected. James had cancer. It was a type of cancer called acute lymphoblastic leukemia, a cancer of the blood.

James had said nothing. He looked down, shocked, and crestfallen. Even though we had planted the seeds early that this was likely cancer, the confirmation is always heartbreaking. It closes the door on optimism, shutting out the slim hope that it could be something else. Anything else.

I could have said more. But I waited.

I stopped talking because my experiences have mirrored what the data shows: Once a patient hears “cancer,” they often stop listening. We could go on, spelling out the next steps and treatment options. But patients usually don’t retain it. The details don’t mean anything right now.

Instead, I usually just hint at what’s to come. Most importantly, I reassure them that we are with them now, every step of the way. This will be a road we’ll walk together.

It was silent for a while. Finally, James spoke.

“OK,” he said. “So … it’s not something in my diet?”

“No. It’s a leukemia.”

“It cannot be related to stress?”

“No. You did nothing to cause this.”

For most, it’s a process. After dropping the diagnostic bomb, treatment is another conversation. Prognosis another. If I have the luxury of continuity, I try to carve the information into chunks, giving patients time to process each piece.

This felt especially salient for James, who was in his mid-30s and had never even been in a hospital before, much less dealt with a serious diagnosis. His grandparents had died of “old age,” and no one in his family had been sick. He had never interacted with the health care system in a meaningful way. Even words like chemotherapy seemed beyond him, existing in a different world from the one he lived in. Cancer was abstract.

“Would I be awake during chemotherapy?”

“Yes. Completely.”

James had a wife, a 2-year-old, and a full-time job. Watching his daughter aimlessly wander around the hospital room, I wondered, were they planning on having more children? We could get the fertility specialist to see him before starting chemotherapy.

I looked at his nightstand, where his laptop was open to data-packed spreadsheets, and I wondered what his work meant for him. Would he want to continue working through his treatment? We could have our social worker write a letter to his employer.

There would be time for all of that. Later.

I said that, for tonight, there would be nothing else. Tomorrow, we would do an ultrasound of his heart and arrange for a special IV to administer chemotherapy. Then, I would come back, and we would talk about the treatment, and what it all means, in a lot more detail.

I asked James if he had any questions right now. As expected, he said no. Until a few hours later, when I was called about his very important question.

That day, looking into the terrified face of a previously healthy 30-something-year-old, I could see the future. I could see the month-long hospital stay. The chemotherapy would kill his immune system, he would get fevers, and bacteria would grow in his bloodstream. He’d get short of breath and we’d find fungus growing in his lungs. He’d take an antifungal and it would make him hallucinate. Maybe he’d spend a few days in the ICU, requiring a large catheter in his neck just to maintain his blood pressure. He would bleed; we would transfuse him with blood. He would get so many bone marrow biopsies and lumbar punctures that his skin would be marked, and he would tell each proceduralist where to go. It would be months of treatment. And then miraculously, it would go into remission. He would celebrate; his wife would cry. Maybe he’d get a bone marrow transplant; we’d find out his brother was a match, and he’d fly in from thousands of miles away. He would get graft-versus-host disease, and his skin would harden. And even after all of that, even if his bone marrow was clear of disease, he would not say he was “cured.” He would live in fear of this because he would know how likely it was to relapse. Maybe in a few months, maybe in a few years. Every cough would be a catastrophe. Every ache a fear of the worst. He would become intimately familiar with words like minimal residual disease and neutropenia, frequent the message boards, and always have a bag packed in case he needed to come back to the hospital. Everything else, from that moment on, would come in second place.

There, then, with his toddler playfully tugging at his hospital gown, I said none of that.

Instead, I examined his back. I told him his mole looked fine.

“Wow,” he breathed a long sigh of relief. “Thank you, doctor. That’s good news.”

Certain details of this story were modified slightly to protect privacy.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

The textbook answer would have been straightforward: No additional chemotherapy. Focus on palliative care.

But Max (not his real name) was not a textbook case. He was a person, and he was terrified of dying.

When I met him in clinic, four lines of chemotherapy had not slowed the spread of his rare cancer that was already metastatic at the time of diagnosis. His skin was yellow. His hair had fallen out in clumps. His legs were swollen to the point that he couldn’t walk. He had trouble transferring from his wheelchair on his own.

All this was offset by the college hoodie he wore, a disarming display of his youth. I had to look at the chart to remind myself. He was only 19 years old.

“Will Dr. D give Max chemotherapy?” his mother asked me, referring to the attending oncologist who had been caring for her son since the beginning. “I think he needs it right away,” she said. She was holding back tears.

Protected by the fact that I was a visiting fellow in her clinic for the day, and I was just meeting Max, I deferred the decision to Dr. D.

Dr. D and I reviewed Max’s case outside the room, scrolling through his PET scans showing spread of cancer in his liver, lungs, and bones in only 2 short months. We recounted the multiple lines of chemotherapy and immunotherapy he had tried and that had failed him.

Palliative care? I offered. She agreed.

But as we went back in together, it was harder. Max’s mother began to cry as Dr. D tried to broach the option. To her, palliative care meant death. That was not something she could swallow. Her questions turned back only to the next chemotherapy we would be giving.

I learned that Max’s father worked in a hospital. He knew how serious it was. “He calls me every day, crying,” my attending later told me solemnly. Begging her to do something. Pleading for more chemotherapy.

After some painful back and forth in the room, we didn’t come to a resolution. Dr. D would call them later, she said.

It was a busy clinic day, and we saw the rest of her patients.

“What are we going to do about Max?” I asked at the end of the day. I was writing the note in his chart. We still didn’t have a plan.

More chemotherapy, from any technical and data-based standpoint, was not the right choice. We had no evidence it would improve survival. We did have evidence that it could worsen the quality of life when time was limited. If we gave him more chemotherapy, it would be beyond guidelines, beyond evidence. We would be off the grid.

I thought about the conversations I’d been privy to about giving toxic therapies near the end of life. While a handful felt productive, others were uncomfortably strained. The latter involved a tension that manifests when the goals of the patient and the oncologist are misaligned. The words may be slightly different each time, but the theme is the same.

The oncologist says: “More chemotherapy is not going to work.”

The patient says: “But we don’t know. It’s better than doing nothing. Can’t we try?”

This can be excruciatingly challenging because both sides are correct. Both sides are logical, and yet they are talking past each other.

From the point of view of the person desperate to survive, anything is worth a try. Without trying some form of treatment, there’s a zero percent chance of surviving. Low odds of something working are still better than zero percent odds.

But it’s not an issue of logic. For people like Max’s parents, the questions come from a place of helplessness. The cognitive dissonance sets in because our job is to help and we struggle when we feel we cannot. We want to say yes. I wish we had a treatment to slow Max’s cancer, too. I wish more chemotherapy would help him.

What I’ve learned from these conversations is the importance of defining terms. Specifically, what do we mean when we say a treatment will or will not “work”? What are we trying to achieve? To prolong life by weeks? By months or years? To make your pain go away? To help you feel stronger? To allow you to spend time doing what you love?

The relevant question is not: Will this treatment work? It is: What are your goals, and will this treatment help you achieve them?

Defining terms in that way can mean the difference of a conversation where two sides are talking past one another to one that comes to a mutual understanding – even if the ultimate conclusion is painful for everyone.

Yet sometimes, even for the most skilled communicators, there may be compromise. There may be an agreement to trial Nth-line chemotherapy, even without evidence that it will achieve a person’s goals. It will require nuanced informed consent from both sides. And it will come from a place of compassion.

This is what I thought about as I signed chemotherapy orders for Max that evening. I felt for him, for his parents, and for his oncologist.

Because even though I suspected the treatment wouldn’t work the way they all hoped it would, I also wasn’t the one fielding daily phone calls from a father, begging his oncologist to do something, anything at all, to save his son’s life.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

The textbook answer would have been straightforward: No additional chemotherapy. Focus on palliative care.

But Max (not his real name) was not a textbook case. He was a person, and he was terrified of dying.

When I met him in clinic, four lines of chemotherapy had not slowed the spread of his rare cancer that was already metastatic at the time of diagnosis. His skin was yellow. His hair had fallen out in clumps. His legs were swollen to the point that he couldn’t walk. He had trouble transferring from his wheelchair on his own.

All this was offset by the college hoodie he wore, a disarming display of his youth. I had to look at the chart to remind myself. He was only 19 years old.

“Will Dr. D give Max chemotherapy?” his mother asked me, referring to the attending oncologist who had been caring for her son since the beginning. “I think he needs it right away,” she said. She was holding back tears.

Protected by the fact that I was a visiting fellow in her clinic for the day, and I was just meeting Max, I deferred the decision to Dr. D.

Dr. D and I reviewed Max’s case outside the room, scrolling through his PET scans showing spread of cancer in his liver, lungs, and bones in only 2 short months. We recounted the multiple lines of chemotherapy and immunotherapy he had tried and that had failed him.

Palliative care? I offered. She agreed.

But as we went back in together, it was harder. Max’s mother began to cry as Dr. D tried to broach the option. To her, palliative care meant death. That was not something she could swallow. Her questions turned back only to the next chemotherapy we would be giving.

I learned that Max’s father worked in a hospital. He knew how serious it was. “He calls me every day, crying,” my attending later told me solemnly. Begging her to do something. Pleading for more chemotherapy.

After some painful back and forth in the room, we didn’t come to a resolution. Dr. D would call them later, she said.

It was a busy clinic day, and we saw the rest of her patients.

“What are we going to do about Max?” I asked at the end of the day. I was writing the note in his chart. We still didn’t have a plan.

More chemotherapy, from any technical and data-based standpoint, was not the right choice. We had no evidence it would improve survival. We did have evidence that it could worsen the quality of life when time was limited. If we gave him more chemotherapy, it would be beyond guidelines, beyond evidence. We would be off the grid.

I thought about the conversations I’d been privy to about giving toxic therapies near the end of life. While a handful felt productive, others were uncomfortably strained. The latter involved a tension that manifests when the goals of the patient and the oncologist are misaligned. The words may be slightly different each time, but the theme is the same.

The oncologist says: “More chemotherapy is not going to work.”

The patient says: “But we don’t know. It’s better than doing nothing. Can’t we try?”

This can be excruciatingly challenging because both sides are correct. Both sides are logical, and yet they are talking past each other.

From the point of view of the person desperate to survive, anything is worth a try. Without trying some form of treatment, there’s a zero percent chance of surviving. Low odds of something working are still better than zero percent odds.

But it’s not an issue of logic. For people like Max’s parents, the questions come from a place of helplessness. The cognitive dissonance sets in because our job is to help and we struggle when we feel we cannot. We want to say yes. I wish we had a treatment to slow Max’s cancer, too. I wish more chemotherapy would help him.

What I’ve learned from these conversations is the importance of defining terms. Specifically, what do we mean when we say a treatment will or will not “work”? What are we trying to achieve? To prolong life by weeks? By months or years? To make your pain go away? To help you feel stronger? To allow you to spend time doing what you love?

The relevant question is not: Will this treatment work? It is: What are your goals, and will this treatment help you achieve them?

Defining terms in that way can mean the difference of a conversation where two sides are talking past one another to one that comes to a mutual understanding – even if the ultimate conclusion is painful for everyone.

Yet sometimes, even for the most skilled communicators, there may be compromise. There may be an agreement to trial Nth-line chemotherapy, even without evidence that it will achieve a person’s goals. It will require nuanced informed consent from both sides. And it will come from a place of compassion.

This is what I thought about as I signed chemotherapy orders for Max that evening. I felt for him, for his parents, and for his oncologist.

Because even though I suspected the treatment wouldn’t work the way they all hoped it would, I also wasn’t the one fielding daily phone calls from a father, begging his oncologist to do something, anything at all, to save his son’s life.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

The textbook answer would have been straightforward: No additional chemotherapy. Focus on palliative care.

But Max (not his real name) was not a textbook case. He was a person, and he was terrified of dying.

When I met him in clinic, four lines of chemotherapy had not slowed the spread of his rare cancer that was already metastatic at the time of diagnosis. His skin was yellow. His hair had fallen out in clumps. His legs were swollen to the point that he couldn’t walk. He had trouble transferring from his wheelchair on his own.

All this was offset by the college hoodie he wore, a disarming display of his youth. I had to look at the chart to remind myself. He was only 19 years old.

“Will Dr. D give Max chemotherapy?” his mother asked me, referring to the attending oncologist who had been caring for her son since the beginning. “I think he needs it right away,” she said. She was holding back tears.

Protected by the fact that I was a visiting fellow in her clinic for the day, and I was just meeting Max, I deferred the decision to Dr. D.

Dr. D and I reviewed Max’s case outside the room, scrolling through his PET scans showing spread of cancer in his liver, lungs, and bones in only 2 short months. We recounted the multiple lines of chemotherapy and immunotherapy he had tried and that had failed him.

Palliative care? I offered. She agreed.

But as we went back in together, it was harder. Max’s mother began to cry as Dr. D tried to broach the option. To her, palliative care meant death. That was not something she could swallow. Her questions turned back only to the next chemotherapy we would be giving.

I learned that Max’s father worked in a hospital. He knew how serious it was. “He calls me every day, crying,” my attending later told me solemnly. Begging her to do something. Pleading for more chemotherapy.

After some painful back and forth in the room, we didn’t come to a resolution. Dr. D would call them later, she said.

It was a busy clinic day, and we saw the rest of her patients.

“What are we going to do about Max?” I asked at the end of the day. I was writing the note in his chart. We still didn’t have a plan.

More chemotherapy, from any technical and data-based standpoint, was not the right choice. We had no evidence it would improve survival. We did have evidence that it could worsen the quality of life when time was limited. If we gave him more chemotherapy, it would be beyond guidelines, beyond evidence. We would be off the grid.

I thought about the conversations I’d been privy to about giving toxic therapies near the end of life. While a handful felt productive, others were uncomfortably strained. The latter involved a tension that manifests when the goals of the patient and the oncologist are misaligned. The words may be slightly different each time, but the theme is the same.

The oncologist says: “More chemotherapy is not going to work.”

The patient says: “But we don’t know. It’s better than doing nothing. Can’t we try?”

This can be excruciatingly challenging because both sides are correct. Both sides are logical, and yet they are talking past each other.

From the point of view of the person desperate to survive, anything is worth a try. Without trying some form of treatment, there’s a zero percent chance of surviving. Low odds of something working are still better than zero percent odds.

But it’s not an issue of logic. For people like Max’s parents, the questions come from a place of helplessness. The cognitive dissonance sets in because our job is to help and we struggle when we feel we cannot. We want to say yes. I wish we had a treatment to slow Max’s cancer, too. I wish more chemotherapy would help him.

What I’ve learned from these conversations is the importance of defining terms. Specifically, what do we mean when we say a treatment will or will not “work”? What are we trying to achieve? To prolong life by weeks? By months or years? To make your pain go away? To help you feel stronger? To allow you to spend time doing what you love?

The relevant question is not: Will this treatment work? It is: What are your goals, and will this treatment help you achieve them?

Defining terms in that way can mean the difference of a conversation where two sides are talking past one another to one that comes to a mutual understanding – even if the ultimate conclusion is painful for everyone.

Yet sometimes, even for the most skilled communicators, there may be compromise. There may be an agreement to trial Nth-line chemotherapy, even without evidence that it will achieve a person’s goals. It will require nuanced informed consent from both sides. And it will come from a place of compassion.

This is what I thought about as I signed chemotherapy orders for Max that evening. I felt for him, for his parents, and for his oncologist.

Because even though I suspected the treatment wouldn’t work the way they all hoped it would, I also wasn’t the one fielding daily phone calls from a father, begging his oncologist to do something, anything at all, to save his son’s life.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

Martha Boxer (not her real name) had mentally prepared herself that this could happen, but the news still hit hard. Her doctors on the leukemia service broke the facts as gently as we could: The chemotherapy she had been suffering through for the last 2 weeks hadn’t worked. The results of her latest bone marrow biopsy showed it remained packed with cancer cells.

As Martha absorbed the news quietly, her son, sitting next to her bedside with his hand on hers, spoke first. “What now?”

I looked at my attending and nodded, as we were fully ready to answer this question. From the outset, we knew that Martha’s leukemia carried a genetic mutation that unfortunately put her in a high-risk category. The chances of her cancer responding to the first round of chemotherapy were low. When this happens, what we typically do next is reinduction, we explained. It’s a different combination of chemotherapy drugs, with a somewhat different side effect profile. But it would give her the best chance of response, we believed. We could start the new chemotherapy as early as today, we said.

Martha took this in. “Okay,” she said pensively. “I’ve been thinking. And I think maybe … I won’t do chemotherapy anymore.”

Her words caught me off guard because, frankly, they seemed premature. Her leukemia had not budged with the first round of treatment. But we still had an option B, and then an option C. It was usually at a later, more dire stage – when multiple lines of treatment had not worked, and instead had only caused harm – or, when the decision was forced by the medical system’s admission that we had nothing left to offer – that I’d heard patients express similar preferences. It was then that I’d seen patients and their loved ones flip a mental switch and choose to focus the time they had left on what really mattered to them.

It didn’t feel like we were at that point.

And so, as we debriefed outside her room, my first instinct was to convince her otherwise.

However, Martha had other priorities, as I would come to learn. Above all else, she hated the hospital. She hated feeling trapped in a strange room that wasn’t hers; she hated how the chemotherapy stole her energy and made her feel too weak to even shower. She wanted to be in her own home. She wanted to eat her own food, sleep in her own bed, and be surrounded by what she recognized.

But, she also wanted to live. Two paths lay ahead of her. It was a trade-off of more suffering with a small chance at remission, versus accepting no chance of cure but feeling well for as long as she could. She soon clarified that she wasn’t definitely against chemotherapy. She couldn’t decide. She needed more information from us to make this decision, the hardest of her life.

Over the next few days, I watched as our attending physician expertly provided just that. There were actually three options, she laid out. There was aggressive chemotherapy, entailing at least 3 more weeks in the hospital and coming with significant risk of infection, nausea, vomiting, and fatigue. The chances of inducing a remission were about one in three to one in two, and that remission would likely last between several months and 2 years before the leukemia would relapse. The second option was a chemotherapy pill she could take at home, an option with fewer side effects but no longer aimed at cure. The third option was home hospice support, focused on symptoms, without any anticancer medication.

I noticed a few things during those conversations. I noticed how my attending took a navigator role, not pushing Martha in one direction or another, but rather imparting all the relevant information to empower Martha to decide for herself. I noticed how she provided realistic estimates, not hedging away from numbers, but giving the honest, nitty-gritty facts, as best as she could predict. I noticed how she took the time and never rushed, even in spite of external pressures to discharge the patient from the hospital.

There was no right or wrong answer. I no longer felt that we had something in our grasp – a clear-cut, best decision – to persuade Martha toward. Is one in three good odds, or bad odds? Is 2 years a long period of time, or a short one? Of course, there is no actual answer to these questions; the answer is as elusive and personal as if we had asked Martha: What do you think?

What I learned from Martha is that, with a devastating diagnosis, there isn’t a right time to make this decision. There isn’t one defining moment where we flip a switch and change course. It isn’t only when we run out of treatment options that the choice to forgo it makes sense. That option is on a flexible line, different for every person and priority. As my attending later said, with Martha’s diagnosis and her values, it wouldn’t have been unreasonable to decide against chemotherapy from the start.

The language we use can sometimes mask that reality. As doctors, we may casually slip in words like “need” and “have to” in response to patients’ questions about what to do next. “You need more chemotherapy,” we might say. “We’d have to treat it.” We have “treatment,” after all, and so we go down the line of offering what’s next in the medical algorithm. That word, too, can be deceivingly tempting, enticing down a road that makes it seem like the obvious answer – or the only one. If the choices are treatment versus not, who wouldn’t want the treatment? But the details are where things get murky. What does that treatment involve? What are the chances it will work, and for how long?

Surreptitiously missing from this language is the fact that there’s a choice. There’s always a choice, and it’s on the table at any point. You can start chemotherapy without committing to stick it out until the end. You can go home, if that is what’s important to you. The best treatment option is the one the patient wants.

After 4 days, Martha decided to go home with palliative chemotherapy and a bridge to hospice. Each member of our team hugged her goodbye and wished her luck. She was nervous. But she packed her hospital room, and she left.

I recently pulled up her medical chart, bracing myself for bad news. But the interesting thing about hospice is that even though the focus is no longer on prolonging life, people sometimes live longer.

She felt well, the most recent palliative note said. She was spending her time writing, getting her finances in order, and finishing a legacy project for her grandchildren.

For Martha, it seemed to be the right choice.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

Martha Boxer (not her real name) had mentally prepared herself that this could happen, but the news still hit hard. Her doctors on the leukemia service broke the facts as gently as we could: The chemotherapy she had been suffering through for the last 2 weeks hadn’t worked. The results of her latest bone marrow biopsy showed it remained packed with cancer cells.

As Martha absorbed the news quietly, her son, sitting next to her bedside with his hand on hers, spoke first. “What now?”

I looked at my attending and nodded, as we were fully ready to answer this question. From the outset, we knew that Martha’s leukemia carried a genetic mutation that unfortunately put her in a high-risk category. The chances of her cancer responding to the first round of chemotherapy were low. When this happens, what we typically do next is reinduction, we explained. It’s a different combination of chemotherapy drugs, with a somewhat different side effect profile. But it would give her the best chance of response, we believed. We could start the new chemotherapy as early as today, we said.

Martha took this in. “Okay,” she said pensively. “I’ve been thinking. And I think maybe … I won’t do chemotherapy anymore.”

Her words caught me off guard because, frankly, they seemed premature. Her leukemia had not budged with the first round of treatment. But we still had an option B, and then an option C. It was usually at a later, more dire stage – when multiple lines of treatment had not worked, and instead had only caused harm – or, when the decision was forced by the medical system’s admission that we had nothing left to offer – that I’d heard patients express similar preferences. It was then that I’d seen patients and their loved ones flip a mental switch and choose to focus the time they had left on what really mattered to them.

It didn’t feel like we were at that point.

And so, as we debriefed outside her room, my first instinct was to convince her otherwise.

However, Martha had other priorities, as I would come to learn. Above all else, she hated the hospital. She hated feeling trapped in a strange room that wasn’t hers; she hated how the chemotherapy stole her energy and made her feel too weak to even shower. She wanted to be in her own home. She wanted to eat her own food, sleep in her own bed, and be surrounded by what she recognized.

But, she also wanted to live. Two paths lay ahead of her. It was a trade-off of more suffering with a small chance at remission, versus accepting no chance of cure but feeling well for as long as she could. She soon clarified that she wasn’t definitely against chemotherapy. She couldn’t decide. She needed more information from us to make this decision, the hardest of her life.

Over the next few days, I watched as our attending physician expertly provided just that. There were actually three options, she laid out. There was aggressive chemotherapy, entailing at least 3 more weeks in the hospital and coming with significant risk of infection, nausea, vomiting, and fatigue. The chances of inducing a remission were about one in three to one in two, and that remission would likely last between several months and 2 years before the leukemia would relapse. The second option was a chemotherapy pill she could take at home, an option with fewer side effects but no longer aimed at cure. The third option was home hospice support, focused on symptoms, without any anticancer medication.

I noticed a few things during those conversations. I noticed how my attending took a navigator role, not pushing Martha in one direction or another, but rather imparting all the relevant information to empower Martha to decide for herself. I noticed how she provided realistic estimates, not hedging away from numbers, but giving the honest, nitty-gritty facts, as best as she could predict. I noticed how she took the time and never rushed, even in spite of external pressures to discharge the patient from the hospital.

There was no right or wrong answer. I no longer felt that we had something in our grasp – a clear-cut, best decision – to persuade Martha toward. Is one in three good odds, or bad odds? Is 2 years a long period of time, or a short one? Of course, there is no actual answer to these questions; the answer is as elusive and personal as if we had asked Martha: What do you think?

What I learned from Martha is that, with a devastating diagnosis, there isn’t a right time to make this decision. There isn’t one defining moment where we flip a switch and change course. It isn’t only when we run out of treatment options that the choice to forgo it makes sense. That option is on a flexible line, different for every person and priority. As my attending later said, with Martha’s diagnosis and her values, it wouldn’t have been unreasonable to decide against chemotherapy from the start.

The language we use can sometimes mask that reality. As doctors, we may casually slip in words like “need” and “have to” in response to patients’ questions about what to do next. “You need more chemotherapy,” we might say. “We’d have to treat it.” We have “treatment,” after all, and so we go down the line of offering what’s next in the medical algorithm. That word, too, can be deceivingly tempting, enticing down a road that makes it seem like the obvious answer – or the only one. If the choices are treatment versus not, who wouldn’t want the treatment? But the details are where things get murky. What does that treatment involve? What are the chances it will work, and for how long?

Surreptitiously missing from this language is the fact that there’s a choice. There’s always a choice, and it’s on the table at any point. You can start chemotherapy without committing to stick it out until the end. You can go home, if that is what’s important to you. The best treatment option is the one the patient wants.

After 4 days, Martha decided to go home with palliative chemotherapy and a bridge to hospice. Each member of our team hugged her goodbye and wished her luck. She was nervous. But she packed her hospital room, and she left.

I recently pulled up her medical chart, bracing myself for bad news. But the interesting thing about hospice is that even though the focus is no longer on prolonging life, people sometimes live longer.

She felt well, the most recent palliative note said. She was spending her time writing, getting her finances in order, and finishing a legacy project for her grandchildren.

For Martha, it seemed to be the right choice.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

Martha Boxer (not her real name) had mentally prepared herself that this could happen, but the news still hit hard. Her doctors on the leukemia service broke the facts as gently as we could: The chemotherapy she had been suffering through for the last 2 weeks hadn’t worked. The results of her latest bone marrow biopsy showed it remained packed with cancer cells.

As Martha absorbed the news quietly, her son, sitting next to her bedside with his hand on hers, spoke first. “What now?”

I looked at my attending and nodded, as we were fully ready to answer this question. From the outset, we knew that Martha’s leukemia carried a genetic mutation that unfortunately put her in a high-risk category. The chances of her cancer responding to the first round of chemotherapy were low. When this happens, what we typically do next is reinduction, we explained. It’s a different combination of chemotherapy drugs, with a somewhat different side effect profile. But it would give her the best chance of response, we believed. We could start the new chemotherapy as early as today, we said.

Martha took this in. “Okay,” she said pensively. “I’ve been thinking. And I think maybe … I won’t do chemotherapy anymore.”

Her words caught me off guard because, frankly, they seemed premature. Her leukemia had not budged with the first round of treatment. But we still had an option B, and then an option C. It was usually at a later, more dire stage – when multiple lines of treatment had not worked, and instead had only caused harm – or, when the decision was forced by the medical system’s admission that we had nothing left to offer – that I’d heard patients express similar preferences. It was then that I’d seen patients and their loved ones flip a mental switch and choose to focus the time they had left on what really mattered to them.

It didn’t feel like we were at that point.

And so, as we debriefed outside her room, my first instinct was to convince her otherwise.

However, Martha had other priorities, as I would come to learn. Above all else, she hated the hospital. She hated feeling trapped in a strange room that wasn’t hers; she hated how the chemotherapy stole her energy and made her feel too weak to even shower. She wanted to be in her own home. She wanted to eat her own food, sleep in her own bed, and be surrounded by what she recognized.

But, she also wanted to live. Two paths lay ahead of her. It was a trade-off of more suffering with a small chance at remission, versus accepting no chance of cure but feeling well for as long as she could. She soon clarified that she wasn’t definitely against chemotherapy. She couldn’t decide. She needed more information from us to make this decision, the hardest of her life.

Over the next few days, I watched as our attending physician expertly provided just that. There were actually three options, she laid out. There was aggressive chemotherapy, entailing at least 3 more weeks in the hospital and coming with significant risk of infection, nausea, vomiting, and fatigue. The chances of inducing a remission were about one in three to one in two, and that remission would likely last between several months and 2 years before the leukemia would relapse. The second option was a chemotherapy pill she could take at home, an option with fewer side effects but no longer aimed at cure. The third option was home hospice support, focused on symptoms, without any anticancer medication.

I noticed a few things during those conversations. I noticed how my attending took a navigator role, not pushing Martha in one direction or another, but rather imparting all the relevant information to empower Martha to decide for herself. I noticed how she provided realistic estimates, not hedging away from numbers, but giving the honest, nitty-gritty facts, as best as she could predict. I noticed how she took the time and never rushed, even in spite of external pressures to discharge the patient from the hospital.

There was no right or wrong answer. I no longer felt that we had something in our grasp – a clear-cut, best decision – to persuade Martha toward. Is one in three good odds, or bad odds? Is 2 years a long period of time, or a short one? Of course, there is no actual answer to these questions; the answer is as elusive and personal as if we had asked Martha: What do you think?

What I learned from Martha is that, with a devastating diagnosis, there isn’t a right time to make this decision. There isn’t one defining moment where we flip a switch and change course. It isn’t only when we run out of treatment options that the choice to forgo it makes sense. That option is on a flexible line, different for every person and priority. As my attending later said, with Martha’s diagnosis and her values, it wouldn’t have been unreasonable to decide against chemotherapy from the start.

The language we use can sometimes mask that reality. As doctors, we may casually slip in words like “need” and “have to” in response to patients’ questions about what to do next. “You need more chemotherapy,” we might say. “We’d have to treat it.” We have “treatment,” after all, and so we go down the line of offering what’s next in the medical algorithm. That word, too, can be deceivingly tempting, enticing down a road that makes it seem like the obvious answer – or the only one. If the choices are treatment versus not, who wouldn’t want the treatment? But the details are where things get murky. What does that treatment involve? What are the chances it will work, and for how long?

Surreptitiously missing from this language is the fact that there’s a choice. There’s always a choice, and it’s on the table at any point. You can start chemotherapy without committing to stick it out until the end. You can go home, if that is what’s important to you. The best treatment option is the one the patient wants.

After 4 days, Martha decided to go home with palliative chemotherapy and a bridge to hospice. Each member of our team hugged her goodbye and wished her luck. She was nervous. But she packed her hospital room, and she left.

I recently pulled up her medical chart, bracing myself for bad news. But the interesting thing about hospice is that even though the focus is no longer on prolonging life, people sometimes live longer.

She felt well, the most recent palliative note said. She was spending her time writing, getting her finances in order, and finishing a legacy project for her grandchildren.

For Martha, it seemed to be the right choice.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

Every cancer diagnosis starts out as anything but. That’s what I was thinking when I met Sue Marcus (not her real name) in the emergency department one Friday afternoon.

“You know,” she said in a matter of fact manner. “I think I might have the flu.”

“Yes,” I said. “You might.”

“I was in Vegas a week ago, and the person next to me was sick.”

“It’s definitely possible. That’s one of the things we’ll test for.”

“I mean ... what else can it be?”

I had information Sue didn’t yet. All her blood counts were disturbingly low. On top of that, the lab had picked up several atypical appearing cells. They could be reactive, in the setting of infection, or they could be blasts – a new diagnosis of leukemia.

I paused.

“I’m going to say this now, so you know what we are looking for. There’s a lot more information we still need.”

“But?”

“But, another possibility is that it is cancer.”

“Cancer?”

“Leukemia, maybe.”

I explained the next steps. We would have flow cytometry by that night, but it’s not a perfect test. We were limited, actually, by logistics. It was a Friday night. We would do a bone marrow biopsy on Monday. It would be several days before we’d know with certainty.

That evening, the hematology fellow and I looked at the slide under the microscope. We agreed with the lab.

“That’s a blast, isn’t it?”

“Yes, I think it is.”

But they were not completely classic, and they were sporadic. It wasn’t enough to say for sure. Meanwhile, Sue, understandably, wanted answers.

“What did you see? Is it cancer, or not?”

There was flow cytometry that night, showing an abnormal population of cells. And then, finally, there was a bone marrow biopsy clinching the diagnosis.

We explained what the path ahead looked like: Hospitalization for a month. Chemotherapy, then a repeat bone marrow biopsy to look for response. Then more chemotherapy. Chances of remission. Long-term implications.

As we gathered more information, Sue’s questions evolved.

“Is it curable?”

“Can I go back to work?”

And one day, a week into treatment, she asked, “Am I going to die?”

Over my last 3 years as an internal medicine resident, I’ve been humbled by how often patients turned to me for answers to some of the most difficult questions I could imagine. Sometimes, the questions seemed purely factual, but often, they took a more existential bent: How should I spend my last months? What should I do now? Patients have asked me if they are going to die, along with when, how, and even why.

I’ve wrestled with how to communicate candidly, treading a delicate balance between being as up-front as possible while also recognizing the uncertainty inherent in predicting. I’ve struggled with walking the tightrope of delivering bad news while also emphasizing compassion and support.

I chose hematology and oncology in part because of the gravity of these interactions. I enjoy being a primary doctor for a complex, sick, patient population who are grappling with physically and emotionally challenging illness. I value longitudinal relationships with patients I know well. I found the medicine of hematology and oncology interdisciplinary, the details high stakes, and the big questions always at play. If it was meaningful work I sought, cancer became the ultimate question that mattered.

The changing landscape of cancer care is making these conversations substantially more difficult. A central tenet of medicine is truthfulness: setting the stage for what is going on and what to anticipate. It’s explaining the nuances of the upcoming treatment options, while also addressing what a person’s life may look like down the road. It’s understanding what matters most to a patient, understanding what therapeutic choices we can offer – and then trying to reconcile them, as best as we can.

This has always been hard. But it’s getting harder. The options we have to treat cancer are expanding rapidly as immunotherapy competes with the basics of chemotherapy, radiation, and surgery. We work alongside researchers looking to change the paradigm, collecting information on outcomes and side effects as we go along. We are learning and we are applying what we learn – in real time – on real people willing to try.

How can we speak honestly about a prognosis when our data are limited and our tools are in continuous flux? How can we prepare someone for what lies ahead when we are still trying to grasp what today looks like?

All the while, medical uncertainties are amplified by a complex system with many moving parts. It’s a system in which some patients cannot afford care, in which insurance companies may deny necessary treatment, and where families may come together or fall apart in the face of incredible adversity. There are factors outside the scope of pure medicine that make the path ahead all the hazier and navigating it all the more challenging.

In July, I began my hematology and oncology fellowship. I am caring for patients with a range of cancers, and all of that goes along with the weight of those diagnoses. Learning the most up-to-date management in a constantly evolving landscape will be an ongoing skill. That my patients allow me into their most vulnerable moments – and trust me with them – is a gift.

For patients like Sue, there sometimes remain more questions than answers. She recently underwent her third round of chemotherapy and endured multiple blood clots. With her insurance covering only limited interventions, she is deciding what to focus on and where to receive her care. Her story, like many others, continues to be written.

I am deeply aware of the difficulties that are a part of the world of cancer – and the heartbreak. How can we hold up scans triumphantly showing no recurrence in some patients while others suffer one failed treatment after another? When should we push for more therapy and when should we shift our efforts toward comfort? What should we prioritize – medically and personally – if time is limited?

These questions are hard, but I cannot think of any that are more meaningful.

This is a column about patients and uncertainty as I pursue my hematology and oncology fellowship and grapple with these questions. I look forward to sharing them with you each month.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

Every cancer diagnosis starts out as anything but. That’s what I was thinking when I met Sue Marcus (not her real name) in the emergency department one Friday afternoon.

“You know,” she said in a matter of fact manner. “I think I might have the flu.”

“Yes,” I said. “You might.”

“I was in Vegas a week ago, and the person next to me was sick.”

“It’s definitely possible. That’s one of the things we’ll test for.”

“I mean ... what else can it be?”

I had information Sue didn’t yet. All her blood counts were disturbingly low. On top of that, the lab had picked up several atypical appearing cells. They could be reactive, in the setting of infection, or they could be blasts – a new diagnosis of leukemia.

I paused.

“I’m going to say this now, so you know what we are looking for. There’s a lot more information we still need.”

“But?”

“But, another possibility is that it is cancer.”

“Cancer?”

“Leukemia, maybe.”

I explained the next steps. We would have flow cytometry by that night, but it’s not a perfect test. We were limited, actually, by logistics. It was a Friday night. We would do a bone marrow biopsy on Monday. It would be several days before we’d know with certainty.

That evening, the hematology fellow and I looked at the slide under the microscope. We agreed with the lab.

“That’s a blast, isn’t it?”

“Yes, I think it is.”

But they were not completely classic, and they were sporadic. It wasn’t enough to say for sure. Meanwhile, Sue, understandably, wanted answers.

“What did you see? Is it cancer, or not?”

There was flow cytometry that night, showing an abnormal population of cells. And then, finally, there was a bone marrow biopsy clinching the diagnosis.

We explained what the path ahead looked like: Hospitalization for a month. Chemotherapy, then a repeat bone marrow biopsy to look for response. Then more chemotherapy. Chances of remission. Long-term implications.

As we gathered more information, Sue’s questions evolved.

“Is it curable?”

“Can I go back to work?”

And one day, a week into treatment, she asked, “Am I going to die?”

Over my last 3 years as an internal medicine resident, I’ve been humbled by how often patients turned to me for answers to some of the most difficult questions I could imagine. Sometimes, the questions seemed purely factual, but often, they took a more existential bent: How should I spend my last months? What should I do now? Patients have asked me if they are going to die, along with when, how, and even why.

I’ve wrestled with how to communicate candidly, treading a delicate balance between being as up-front as possible while also recognizing the uncertainty inherent in predicting. I’ve struggled with walking the tightrope of delivering bad news while also emphasizing compassion and support.

I chose hematology and oncology in part because of the gravity of these interactions. I enjoy being a primary doctor for a complex, sick, patient population who are grappling with physically and emotionally challenging illness. I value longitudinal relationships with patients I know well. I found the medicine of hematology and oncology interdisciplinary, the details high stakes, and the big questions always at play. If it was meaningful work I sought, cancer became the ultimate question that mattered.

The changing landscape of cancer care is making these conversations substantially more difficult. A central tenet of medicine is truthfulness: setting the stage for what is going on and what to anticipate. It’s explaining the nuances of the upcoming treatment options, while also addressing what a person’s life may look like down the road. It’s understanding what matters most to a patient, understanding what therapeutic choices we can offer – and then trying to reconcile them, as best as we can.

This has always been hard. But it’s getting harder. The options we have to treat cancer are expanding rapidly as immunotherapy competes with the basics of chemotherapy, radiation, and surgery. We work alongside researchers looking to change the paradigm, collecting information on outcomes and side effects as we go along. We are learning and we are applying what we learn – in real time – on real people willing to try.

How can we speak honestly about a prognosis when our data are limited and our tools are in continuous flux? How can we prepare someone for what lies ahead when we are still trying to grasp what today looks like?

All the while, medical uncertainties are amplified by a complex system with many moving parts. It’s a system in which some patients cannot afford care, in which insurance companies may deny necessary treatment, and where families may come together or fall apart in the face of incredible adversity. There are factors outside the scope of pure medicine that make the path ahead all the hazier and navigating it all the more challenging.

In July, I began my hematology and oncology fellowship. I am caring for patients with a range of cancers, and all of that goes along with the weight of those diagnoses. Learning the most up-to-date management in a constantly evolving landscape will be an ongoing skill. That my patients allow me into their most vulnerable moments – and trust me with them – is a gift.

For patients like Sue, there sometimes remain more questions than answers. She recently underwent her third round of chemotherapy and endured multiple blood clots. With her insurance covering only limited interventions, she is deciding what to focus on and where to receive her care. Her story, like many others, continues to be written.

I am deeply aware of the difficulties that are a part of the world of cancer – and the heartbreak. How can we hold up scans triumphantly showing no recurrence in some patients while others suffer one failed treatment after another? When should we push for more therapy and when should we shift our efforts toward comfort? What should we prioritize – medically and personally – if time is limited?

These questions are hard, but I cannot think of any that are more meaningful.

This is a column about patients and uncertainty as I pursue my hematology and oncology fellowship and grapple with these questions. I look forward to sharing them with you each month.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

Every cancer diagnosis starts out as anything but. That’s what I was thinking when I met Sue Marcus (not her real name) in the emergency department one Friday afternoon.

“You know,” she said in a matter of fact manner. “I think I might have the flu.”

“Yes,” I said. “You might.”

“I was in Vegas a week ago, and the person next to me was sick.”

“It’s definitely possible. That’s one of the things we’ll test for.”

“I mean ... what else can it be?”

I had information Sue didn’t yet. All her blood counts were disturbingly low. On top of that, the lab had picked up several atypical appearing cells. They could be reactive, in the setting of infection, or they could be blasts – a new diagnosis of leukemia.

I paused.

“I’m going to say this now, so you know what we are looking for. There’s a lot more information we still need.”

“But?”

“But, another possibility is that it is cancer.”

“Cancer?”

“Leukemia, maybe.”

I explained the next steps. We would have flow cytometry by that night, but it’s not a perfect test. We were limited, actually, by logistics. It was a Friday night. We would do a bone marrow biopsy on Monday. It would be several days before we’d know with certainty.

That evening, the hematology fellow and I looked at the slide under the microscope. We agreed with the lab.

“That’s a blast, isn’t it?”

“Yes, I think it is.”

But they were not completely classic, and they were sporadic. It wasn’t enough to say for sure. Meanwhile, Sue, understandably, wanted answers.

“What did you see? Is it cancer, or not?”

There was flow cytometry that night, showing an abnormal population of cells. And then, finally, there was a bone marrow biopsy clinching the diagnosis.

We explained what the path ahead looked like: Hospitalization for a month. Chemotherapy, then a repeat bone marrow biopsy to look for response. Then more chemotherapy. Chances of remission. Long-term implications.

As we gathered more information, Sue’s questions evolved.

“Is it curable?”

“Can I go back to work?”

And one day, a week into treatment, she asked, “Am I going to die?”

Over my last 3 years as an internal medicine resident, I’ve been humbled by how often patients turned to me for answers to some of the most difficult questions I could imagine. Sometimes, the questions seemed purely factual, but often, they took a more existential bent: How should I spend my last months? What should I do now? Patients have asked me if they are going to die, along with when, how, and even why.

I’ve wrestled with how to communicate candidly, treading a delicate balance between being as up-front as possible while also recognizing the uncertainty inherent in predicting. I’ve struggled with walking the tightrope of delivering bad news while also emphasizing compassion and support.

I chose hematology and oncology in part because of the gravity of these interactions. I enjoy being a primary doctor for a complex, sick, patient population who are grappling with physically and emotionally challenging illness. I value longitudinal relationships with patients I know well. I found the medicine of hematology and oncology interdisciplinary, the details high stakes, and the big questions always at play. If it was meaningful work I sought, cancer became the ultimate question that mattered.

The changing landscape of cancer care is making these conversations substantially more difficult. A central tenet of medicine is truthfulness: setting the stage for what is going on and what to anticipate. It’s explaining the nuances of the upcoming treatment options, while also addressing what a person’s life may look like down the road. It’s understanding what matters most to a patient, understanding what therapeutic choices we can offer – and then trying to reconcile them, as best as we can.

This has always been hard. But it’s getting harder. The options we have to treat cancer are expanding rapidly as immunotherapy competes with the basics of chemotherapy, radiation, and surgery. We work alongside researchers looking to change the paradigm, collecting information on outcomes and side effects as we go along. We are learning and we are applying what we learn – in real time – on real people willing to try.

How can we speak honestly about a prognosis when our data are limited and our tools are in continuous flux? How can we prepare someone for what lies ahead when we are still trying to grasp what today looks like?

All the while, medical uncertainties are amplified by a complex system with many moving parts. It’s a system in which some patients cannot afford care, in which insurance companies may deny necessary treatment, and where families may come together or fall apart in the face of incredible adversity. There are factors outside the scope of pure medicine that make the path ahead all the hazier and navigating it all the more challenging.

In July, I began my hematology and oncology fellowship. I am caring for patients with a range of cancers, and all of that goes along with the weight of those diagnoses. Learning the most up-to-date management in a constantly evolving landscape will be an ongoing skill. That my patients allow me into their most vulnerable moments – and trust me with them – is a gift.

For patients like Sue, there sometimes remain more questions than answers. She recently underwent her third round of chemotherapy and endured multiple blood clots. With her insurance covering only limited interventions, she is deciding what to focus on and where to receive her care. Her story, like many others, continues to be written.

I am deeply aware of the difficulties that are a part of the world of cancer – and the heartbreak. How can we hold up scans triumphantly showing no recurrence in some patients while others suffer one failed treatment after another? When should we push for more therapy and when should we shift our efforts toward comfort? What should we prioritize – medically and personally – if time is limited?

These questions are hard, but I cannot think of any that are more meaningful.

This is a column about patients and uncertainty as I pursue my hematology and oncology fellowship and grapple with these questions. I look forward to sharing them with you each month.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.