Abstract
S
My story starts with the fact that my mother is an actor—not just a woman with dramatic flair (which she is), but also an actual Actors Equity card-carrying professional actor. And I am a palliative care physician. From the outside we couldn't be more different: she is a charming extrovert in a dazzling world of theatrical people; I am an earnest introvert spending time with seriously ill patients. We have always been close, though, sometimes despite our differences and sometimes because of them.
After completing my palliative care fellowship, I became interested in teaching communication skills. I asked my mother whether she wanted to be one of our standardized patients, and she became one of the crew of actors hired for our CME courses, OSCE's, and faculty trainings. Sometimes I didn't even know she'd been hired by a colleague to help teach a communication skills seminar; I would only find out later if she happened to mention it.
Then things took a turn. My mother was diagnosed with chronic myelomonocytic leukemia (CMML), a sometimes indolent but incurable leukemia with a median survival of 18 months. The line between my personal and professional lives blurred. I facilitated advance care planning discussions for my parents. I fielded calls from concerned family and friends wanting to know what to expect. We all braced for an uncertain future while continuing to live our regular lives.
Eventually, since my mother continued to feel well and her counts remained fairly stable, we sometimes allowed the word “leukemia” to slip from our minds. My mother said to me laughingly, “I just don't think about it!”
But in the spirit of wanting to make the most of the time we had, my siblings and I planned a big 70th birthday party for my mother. She is perhaps the most popular person I know, with scores of adoring friends, most of whom call her, “Lovey.” The party was a joyous, full-hearted celebration of her. All of the attendees knew about her diagnosis, so there was an even deeper sense of relishing the connections between us all. And then, unexpectedly, my mother gave a speech, and again the boundary between my professional and personal lives blurred.
I don't remember the whole thing, but part of my mother's speech went like this: “I have been realizing that the most precious thing in my life is my relationships with all of you. As I look around, I am so grateful for the thoughts and prayers I have received from everyone over these last months.” And then she took a dramatic pause, and said jubilantly, “And the good news is…they worked!”
Enthusiastic cheering and applause erupted from the group. Meanwhile, my mind raced. Had I not explained things clearly to her? Was this a lapse in prognostic awareness, or simply wishful thinking? And would all of the party goers believe that thoughts and prayers had cured her leukemia, making the work of my fellow palliative care clinicians all the more difficult? I could hear it in my mind, “Well, I have this amazing friend—we call her Lovey—and her leukemia was cured through the power of prayer!”
Later my mother explained to me, “Well, the prayers did work—look how well I'm doing!” I said, “But mom, some people will think that you've been cured.” And she said, “Well, I feel great, so I think that's OK.”
Meanwhile at work I was helping revamp the communication curriculum for our two-week CME course, Palliative Care Education and Practice. The curriculum overhaul entailed actor training sessions, and so for the first time my mother and I found ourselves in the same hotel conference room for the same training: she as an actor being trained, I as faculty helping do the training.
My boss was running the training session, and I was asked to participate in the role-plays that would teach the actors to respond to various cues. I pretended to be a course participant practicing a communication skill, sometimes well, sometimes badly, and the actors were asked to respond in various ways, depending on the skill level of the “learner,” namely me.
Eventually, perhaps inevitably, I was facing my mother. The role-play involved a standardized patient (my mother) who was resisting coming to terms with a bad prognosis and relying on a miracle to save her. I was the pretend course participant who was trying new communication skills to help assess this patient's prognostic awareness and coping. Things went from blurry to surreal.
Me, looking at my mother, who has leukemia: Mrs. Jones, what's your understanding of your illness?
My mother, looking at me, her daughter who is a palliative care physician: Well, the doctors think there aren't more treatments for my cancer, but I seem to be beating the odds. I feel good. I have been praying to God and I think he has a different plan for me.
Me: I'm glad you're feeling good, and it sounds like prayer is really important to you. Can you tell me more?
My mother: Well, the doctors are just humans, right? But I have lots of people praying for me, and I think a miracle is possible. I have too much to live for.
Me: Yes, I can see that. Let me ask you: are there ever times when you worry that things may not go as well as you'd like?
My mother: Well, I believe in the power of positive thinking. I just remember all the people who love me, and their prayers on my behalf, and I am reminded that the doctors don't know everything. This is in God's hands, not theirs.
At some point along the way, the utter lunacy of the situation caused me to leave my body and watch us from the outside, like watching a play. I couldn't tell what I was saying in character and not, what she was saying in character and not. Ostensibly we were only acting, but given her speech at the party, I wasn't entirely sure. And in that moment, the barrier between my personal and professional lives completely dissolved, and I was in the human soup.
Somehow I made it through the conversation with my mother about terminal illness and prognostic awareness and the power of hope in that hotel conference room, in front of my boss and the other standardized patients. I felt like I had been naked in public without anyone noticing. We had a very nice lunch afterward.
My experience might have been unique in some ways; I'm not sure how many palliative care clinicians have mothers who are standardized patients and who are coping with a terminal diagnosis. Perhaps not many. But this situation was an example of a widely experienced phenomenon for clinicians in our field: the blurring of personal and professional worlds, our vulnerability when those we love get sick, and the struggle of using our professional skill set when we ourselves are affected.
As our field gets bigger and touches more lives, we will find ourselves drawn into trying to help an increasingly large circle of people connected to us personally. We will have to develop a better vocabulary for those situations, better ways to define boundaries, and better coping skills for the sadness and confusion that can crop up. Otherwise, as I was reminded forcefully that day in the hotel, we will just end up in the human soup, all distinction between clinician, patient, and loved one dissolved by the enormity of being mortal, interconnected humans.
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Dedicated with love to my mother, Sarah deLima.