COMMENTARY

What Do You Do When Your Patient Starts to Cry?

What I Learned From Breaking Bad News to Cancer Patients Around the World

Bishal Gyawali, MD, PhD

Disclosures

September 25, 2019

In my brief medical career, I have worked in quite a few different countries. I went to medical school in Nepal, where I was born and raised. I then went to Japan in 2012 to train in medical oncology. Five years later, in 2017, I returned to Nepal to work as a medical oncologist before moving to Boston, Massachusetts, for a research fellowship in cancer policy in 2018. I now live and work in Kingston, Ontario, Canada, having moved here from Boston in early 2019.

Bishal Gyawali, MD, PhD

Starting clinical work in a new country is always challenging, not only because of differences in healthcare systems but also because of the cultural differences that shape the practice of medicine.

As I was becoming oriented to the oncology clinics where I now practice at Queen's University in Canada, I was not worried about treatment protocols and drug doses. Cancer treatments change swiftly. Treatments for some cancers literally change overnight during major conferences. I knew that I could always look up the most appropriate therapy in a given situation.

Keeping up with the latest cancer treatments is one thing, but delivering difficult news—and adjusting how it is delivered based on the individual and the culture in which they live—is quite another.

Andrea was one of my first patients in Canada. (Andrea is not the patient's real name, and some details of this case and those that follow have been changed to protect the patients' privacy.) She had stage III colon cancer that was treated with surgery and adjuvant chemotherapy. Unfortunately, her tumor had recurred and I was there to deliver this bad news. She was waiting in the clinic with her husband. I introduced myself first and we chatted about Kingston, the weather, and our families. I couldn't gather the courage to bring up the real news. But I had to. I went through her history and made sure that she understood why she had received chemotherapy after surgery. Then I delivered the bad news: The cancer had returned, involving multiple spots in her liver and lungs.

Andrea was shocked. I suspect she had imagined herself cured. She started to cry. Her husband was quiet, his eyes revealing despair. I stood motionless, not knowing what to do. Should I hold her hands or give her a hug? Should I start rambling about the treatment options in the metastatic setting, perhaps provide some false hope by offering immunotherapy? Or should I just give her some tissues and stay silent, and then offer her and her husband private time and leave the room?

What do you do when your patient starts to cry?

This was my biggest worry as I started clinical work in Canada. I know how to treat cancer. Yet I still don't know how to react when giving patients the saddest of news: relapses, incurable diagnoses, and transitions to end-of-life care. Thus, when Christopher Booth, MD, my mentor in Canada, asked me if I had any questions about the cancer clinics, I asked him: What do I do when my patient cries? To me, this was the most important of all questions. I have since learned that in the West, most oncologists will bear witness to sadness and show empathy with words of comfort or a reassuring physical touch.

East Versus West

When I returned to Nepal in 2017 after 5 years of postgraduate training in Japan, I worked in a public hospital in Kathmandu. Ramesh, a 45-year-old man, arrived at my clinic with his brother. He was referred with a liver mass that revealed metastatic adenocarcinoma on biopsy. A CT scan suggested pancreas as the likely primary site. In Nepal, the cancer clinics in public hospitals are hugely crowded and there is very little, if any, privacy—not the ideal setting in which to have these important conversations. The SPIKES protocol for "breaking bad news" is not very helpful in most clinics throughout low- to middle-income countries; the first step—"arrange for some privacy"—literally fails.

During the visit, I tell Ramesh and his brother that Ramesh has pancreatic cancer. They are both aghast. A pause. "Are you sure, doctor?" asks the brother. The inevitable question follows: "He doesn't drink or smoke; how can it be true?" Only after a couple of minutes do I find the courage to say that the cancer is incurable. Ramesh starts to cry. I don't know what to do. This is not a foreign country for me; this is Nepal and these are my people. I am one of them. I am supposed to know what to do in these situations but I have absolutely no clue.

I am faced with the same dilemma: Should I hold his hands or hug him? But I have never seen Nepali doctors hug their patients.

The brother asks if going to India for treatment would improve the chance of cure.

Should I encourage that and escape this uncomfortable situation even though I know that metastatic pancreatic cancer is incurable, no matter how much money they spend or where they seek care? No, my ethics would never allow that.

Should I tell him that I'll give him chemotherapy and maybe it will cure him? No, I should be honest and not offer false hope.

That evening, I speak with one of my colleagues about how he deals with such scenarios in his practice. He tells me that patients and their families expect us to be strong. Apparently, if the doctor displays visible signs of empathy, patients may believe the prognosis to be far worse than it actually is. Our patients in Nepal seem to sense a doctor's love and care in strong words of courage, much like finding a parent's love in their stern words.

I now understood that the most important aspect of delivering bad news is ensuring that the patient feels that you care deeply for him or her.

After digesting the diagnosis, Ramesh comes back to my clinic with his wife and two kids, along with his brother. He opts for treatment at our center. We discuss his prognosis and treatment options. As I go through the list of side effects, he bursts into tears again. I tell him that I will do my best to help him and instinctively put my hand on his back. He starts crying even more heavily. His wife is also weeping. I remember my colleague's advice and try to act strong, offering him more firm advice and less Western-style empathy. I tell him to think about his kids. I remind him that he is the leader of his family. "What will your family do if you weep like this? Look at your wife and kids and be strong for their sake."

This seems to actually work.

Ramesh stops crying and thanks me. He acknowledges that what I told him is true and affirms that he'll do his best to stay strong and positive for his family. In later visits, his wife also thanks me. This approach is totally the opposite of how I was trained; in fact, you might risk your job in the West if you ever told a crying patient to stop. But this approach seems to work in Nepal because empathy can be expressed in different ways. I now understood that the most important aspect of delivering bad news is ensuring that the patient feels that you care deeply for him or her.

'Thank You Very Much'

In Japan, where I spent 5 years in oncology training between 2012 and 2017, the culture differs from both Nepal's and North America's. In Japan, it was not unusual to see books with titles like What Is Death?, Death Is New Life, or Enlightenment and Zen at the bedside of hospitalized patients with cancer. Discussing death was not as taboo as it is in the West. Often, I counseled patients on end-of-life issues and the patient would burst into tears, but both the patient and their families would bow and thank me. I used to feel deeply humbled and sad to be a part of such conversations. We had just told the patient that he was going to die soon, yet he and his family had responded to us with "Aarigatou gozaimashita" ("Thank you very much").

Sometimes, families brought us souvenirs after the death of the patient to thank us for our care. It was not unusual for a patient to say, "I am happy that I could live this long. You did your best, doctor. Don't worry about me; I will go when my time comes." It was as if patients were counseling us to stay strong. Oddly, however, physical contact in such discussions was rare, as was hearing someone say, "I am going to fight this disease." I realized then that cancer care wasn't solely about doing things; toward the end of life, it was more important to simply be there for the patient and to care for them more as a person than as a patient.

The Real Practice of Personalized Medicine

Breaking bad news and end-of-life discussions are among the most delicate issues in cancer care. Unfortunately, the training we receive doesn't feel adequate for handling such situations. Although there have been some attempts to standardize the process of delivering bad news, it is not an exact science. This is the art of oncology. It demands that we be genuinely present for the patient in front of us and care for them in a way that displays our empathy but is also culturally appropriate.

Although training does help, the most crucial elements of delivering bad news to patients—having empathy and being sensitive—cannot be trained. Knowledge can be obtained anywhere, but listening to and genuinely caring for a patient has to be built into an individual's character with inspiration from experienced mentors. Protocols and guidelines help, but the richness and diversity of the patients we serve are reminders that we need to be flexible, listen to our patients, and respect their values and the culture that created those values.

In telling these stories from three different countries, I do not mean to suggest that one approach is better than another; every culture is different and every patient within the same cultural context is also different.

I also do not want to generalize the culture of different countries with this narrative, but rather highlight the richness of the human experience and how we can learn from each other's culture to continually refine the art of cancer care. Even though many of us have practiced in only one country, we have witnessed a diversity of patients, treatment needs, and emotional reactions.

Acknowledging that every patient is different (even if in the same country) and that we need to tailor our delivery of bad news to the cultural context of the patient is a first step in providing personalized care to our patients, at the worst of times for them. This, to me, is the real practice of personalized medicine. The fear is the same for every patient—the fear of impending mortality. And yet, how a patient's culture affects their response to this fear and how we, as physicians, tailor our approach based on these cultural differences is the beauty of practicing medicine—and the beauty of being a human.

Bishal Gyawali, MD, PhD, currently works as a medical oncologist and scientist in the Division of Cancer Care and Epidemiology at the Queen's University Cancer Research Institute in Kingston, Ontario, Canada, where he is also an assistant professor of public health sciences. He would like to dedicate this article to all of the patients whom he has had the privilege of caring for across several different countries. Special thanks to Christopher Booth, MD; Saroj Niraula, MD; Kazunori Honda, MD; and patient advocate Sally Schott for their helpful suggestions during the writing of this article.

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