Emily Wilkerson, QMed 2021
It’s very hard to ask a question when you’re afraid of the answer.
I can remember sitting there like it was yesterday. It wasn’t a private room, but my grandfather was the only occupant. My grandmother, mother, and I sat in a row on a bench against the wall, facing the end of the bed. The doctor sat in a chair that she brought in with her, and the nurse stood next to her keeping one eye on my grandfather, and the other on my grandmother. It wasn’t the first family meeting we had, and it wouldn’t be the last. It was, however, the first meeting in this new room, with this new doctor, who was now my grandfather’s palliative care physician. My grandfather had just been moved to palliative care after a series of unfortunate events leading to a decline in his health. He had poor shortness of breath and pain control, and we were hoping that making him more comfortable would give us more time. Now that things were a bit calmer, we had to ask the impossible question – how long do we have?
During this conversation, the question never came out quite as bluntly as that. We danced around it, as if to avoid getting burnt by a campfire. Slowly chipping away at our concerns, we finally mustered the courage to say, “Are we being dramatic by having our family fly in to see him by then end of the week?” Taking a deep breath, the physician responded while gently shaking her head, “No. You’re not being dramatic. Everyone who would like to come, should come now.”
It took a significant amount of courage for us to ask this question. We wanted to have all the answers and to know what was coming so we could be prepared. At the same time, we wanted to be blissfully in denial. It wasn’t our intention to step into a world where our timeline was cut down from two months to two weeks, but so we did. We had to be brave so that we could make the most of the time we had left and so we could stop fighting against the clock, and start working with it.
Those two weeks were the slowest two weeks of my life. The days blended together into one. It was as if time stood still. And finally when it was all over, it went by too fast. Even now, some days it feels like it never happened.
In our clinical skills practice in medical school, we have sessions to prepare ourselves for difficult conversations in medicine. Using the SPIKES framework, published in The Oncologist in 2000 by Baile et. al., medical students are placed in simulation environments to practice delivering “bad news.” These simulations are designed to help the medical learner set up a space with a patient and their family in order to communicate key pieces of information, while remaining mindful and empathetic towards the patient.1 These simulations are surprisingly difficult in the beginning. With my first scenario, I felt clumsy, trying to lessen the blow by avoiding harsh words. However, this only confuses the truth. During feedback from the patient actor, they explained that what they really needed was for me to just be honest. While these simulations are extremely valuable, nothing quite prepares you for the day when you must actually deliver bad news, no matter how small, to a real person, with real consequences. Then perhaps your training serves you well, and you get through the first conversation without much difficulty. Soon you realize that in reality it’s not just a single conversation. Rather, it’s a series of difficult conversations, difficult questions, and difficult answers.
I always imagined that to the outside world, physicians, being used to deal with these hard conversations over time with their patients, would somehow be better at receiving it. One would think that since they’ve been on one side of the conversation, they may know all the right questions to ask. They might be eased by their intricate medical knowledge and by the understanding of the progression of chronic disease. They can see it coming, so it doesn’t come as quite a shock. In my experience, this couldn’t be farther from the truth. When it came to having this conversation, it was impossibly hard. I had been in this situation before on the other side of the table, but instead I felt like I was in the passenger seat of a speeding car and had no control over where we were going.
It is always interesting to reflect back on the reversal of the role of patient and physician – and when you think about it, it is a privilege. How can we sit on the physician side of the table and truly understand what goes through the patient or their family’s minds when they are receiving bad news? This is not to say that we as medical professionals cannot be empathetic, conscientious, and mindful communicators. It might just mean that until you experience it yourself, you can’t truly understand the patient’s experience.
In the future, I hope that I will never take for granted having a difficult conversation with a patient. These conversations are moments that last in the minds of our patients and their loved ones forever. They are implanted like art work framed on a wall. These moments are opportunities for connection, for empathy, and for offering peace of mind. I am grateful for the palliative care physician who chose to be honest with us. There are no certainties in the prediction of when death will come. You can only be patient and be quiet. To a mere medical student, this might feel like forever in the moment, but for the patient, there is never enough time.
1. Baile, W.F., Buckman, R., Lenzi, R., Glober, G., Beale, E.A. and Kudelka, A.P. (2000), SPIKES—A
Six‐Step Protocol for Delivering Bad News: Application to the Patient with Cancer. The Oncologist, 5: 302-311.
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