COMMENTARY

How Do You Tell Someone Over the Phone That They're Dying?

Bishal Gyawali, MD, PhD

Disclosures

January 12, 2021

During the week of Christmas, I was asked to cover the clinic of a colleague who had to leave suddenly due to a personal emergency. Most of the patients were unknown to me; I had no established relationship with them from which to work. Furthermore, Ontario had gone into lockdown for COVID, which meant that many patients had to be consulted over hastily arranged telephone calls rather than in person or even by video.

Giving good news to patients over the telephone is a joy. And among these patients there was plenty of good news for me to impart: continued remission, scans showing good tumor response, the ending of chemotherapy cycles. The background noises of Christmas presents being wrapped and meals being cooked, the spouses and family members responding with gratitude and laughter when put on speaker phone — all of this provided me with a fuller understanding that is not present during an in-person consultation.

But oncology is hardly good news alone. There can be bad news — very bad news. On some of these calls, I'd be giving the latter.

The Limits of Our Training

Breaking bad news is one of the most important responsibilities of an oncologist, and as one of my mentors once told me, it never gets easier, no matter how often you do it. That's because you can't just replicate this process from one patient to another; patients react very differently to receiving bad news. Some seem to take it easily and some very hard; some have been expecting bad news all along, while others are resolute that they can defeat any fate with their willpower.

Oncology trainees are offered various formal training programs on breaking bad news, often developed using the SPIKES protocol. SPIKES is useful in teaching basic skills for communicating such news, and there is even some recent guidance on implementing it remotely.

However, this protocol doesn't take into account cultural differences (which I discussed in a previous commentary), family dynamics, and other nuances. And any protocol is only useful if you have the time, environment, and resources to apply it properly. Otherwise, you're at risk of coming across like a robot rather than as someone who is truly sympathetic.

This is where informal training comes into place. I think most of us have learned this skill from watching our mentors in action and imitating their overall approach, from bringing up the topic to handling the outpouring of emotion from patients and their family, be it anger, frustration, or simply bursting into tears. There are good mentors and bad mentors, however, from those with tremendous sympathy who cry along with patients or smoothly sail the course, to those so unwittingly inept that I imagine they have turned a brief encounter into a scarring memory that can stay with the patient's family for ages. I have learned valuable lessons, positive and negative, from these encounters. But none of them prepared me for this most recent experience.

Uncharted Territory

One of my calls was to a young patient with glioblastoma who has progressed on temozolomide. I informed her that her tumor continues to grow and that her liver enzymes are bad, precluding treatment with lomustine.

The patient asked, "What next?"

I had no answer.

The spouse asked about treatment with bevacizumab. I had to tell the truth, based on clinical trials: Bevacizumab would improve neither survival nor quality of life.

The patient asked, "What then?"

How do you tell people whom you have never met, over the telephone and on Christmas Eve, that you don't have anything else to offer? This is a young family with two children.

I talked about looking into clinical trials. But I also had the difficult conversation about whether they have a palliative care physician taking care of them, what to expect in the days to come, what the patient's preferences would be, and so on.

The spouse said, "2020 sucks." I couldn't agree more. My eyes filled with tears.

The patient asked me for the spelling of my last name. I understood. That name is going to be a lifetime memory for them. I feel bad that this difficult-to-pronounce name is going to be stuck with them for the rest of their lives. Then the patient said, "Dr Gyawali, thank you for being upfront and honest. We really appreciate it." Emotionally, it was uncharted territory for me. I didn't know how to feel or react. It was as if her words were healing me.

I also called a 75-year-old woman with metastatic pancreatic cancer. The latest scan showed disease progression on a gemcitabine-abraxane regimen after previously progressing on FOLFIRINOX. The disease had now flared with multiple metastases in the lungs, lymph nodes, and liver. I realized that, despite such bad scans, she did not have many symptoms. Apparently, this was not the first time she had exceeded a medical prognosis. She was diagnosed with metastatic pancreatic cancer in 2016; thus, this telephone conversation with her in 2020 was logic-defying.

Both she and her husband were on speakerphone. They started talking about a better 2021 and a better Christmas next year. How could I tell them that this might be her last Christmas?

I explained that the disease had progressed. To my surprise, they took the news with extraordinary calm. They asked what the next treatment would be. I repeated that there was no further evidence-based, funded option I could recommend. She had even had gene sequencing and no actionable mutation was found. We could possibly look into clinical trials if any were available.

They sounded panicked and frustrated now. I realized that their voices were calm before because they thought there would be a next line of treatment.

The initial discussion about how this cancer is "incurable" and that the treatment intent is "palliative" must have been lost with time, as can happen when patients with metastatic disease do remarkably well on treatment.

I debated whether I should postpone having this conversation until the next appointment in the new year. She told me that she preferred honesty and wanted to know whether she would have a post-COVID Christmas to celebrate.

Carrying These Emotions Home With Me

I usually leave these emotions at the hospital when I go home, but not this time.

The fact that I had never seen these patients in real life made me imagine all sorts of havoc that my 20-minute telephone call may have created in their lives right before Christmas.

I called a couple of colleagues and asked if they had ever been in such a situation. Fortunately, this does not seem to be a common occurrence.

In non-COVID times, patients would come to the clinic in person. Likewise, in non-urgent situations, there would be time to arrange the clinic schedules so that the whole package of "new doctor–new patient–bad news over the telephone" would not have happened simultaneously.

Telephone visits and video visits have had several advantages, and their becoming mainstream is one of the few silver linings of this pandemic. After going through this particular experience, however, I now appreciate the age-old privilege of breaking bad news in person.

Dr Gyawali would like to thank Drs Scott Berry and Christopher Booth for reading an earlier version of this article and providing valuable feedback.

Bishal Gyawali, MD, PhD, has lived and worked as a physician in Nepal, Japan, the United States, and Canada. He is currently an assistant professor in the Department of Public Health Sciences, a scientist in the Division of Cancer Care and Epidemiology, and a clinical fellow in the Department of Medical Oncology at Queen's University in Kingston, Ontario, Canada, and is also affiliated faculty at the Program on Regulation, Therapeutics, and Law in the Department of Medicine at Brigham and Women's Hospital in Boston. His clinical and research interests revolve around cancer policy, global oncology, evidence-based oncology, financial toxicities of cancer treatment, clinical trial methods, and supportive care.

Follow Medscape on Facebook, Twitter, Instagram, and YouTube

Comments

3090D553-9492-4563-8681-AD288FA52ACE
Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.
Post as:

processing....