By Doug Wolfberg
It took me almost 25 years to be able to write this.
EMS leaders should establish a culture that values and rewards honesty. Healthcare providers of all types – EMS practitioners included – need a core of honesty. Honesty must be at the center of how we interact with patients, families and our community. Sometimes, honesty can be brutal and painful, but at the same time, it can be intimate and beautiful.
I want to talk about the most intimately honest encounter I’ve ever had with another human being and the lesson it taught me. It happened when I had to tell my mother that she was soon going to die.
This particular story took place in January of 1996. Just six months earlier, we had buried my father, who died of cancer at age 64. He was gone exactly three weeks after the day he was diagnosed. His decline and death happened quickly. I was still reeling from that loss when, a couple of months later, my newly widowed mother asked me “what do you make of this lump behind my ear?”
Having just lost my dad to cancer, I’d be lying if I said cancer didn’t again come to mind. But I figured that the law of averages said we’d already paid our dues; we’d already surrendered one beloved family member to cancer only months before. Surely, our statistical debt to the Reaper had been paid and our account was current.
‘The surgery went fine; but …’
A round of tests confirmed that my mother had thyroid cancer. But, we were assured, “this is the kind of cancer you want to get if you’re going to get cancer.” We were told it was highly treatable and that it had a very high cure rate. Surgery was scheduled to remove her thyroid, my mom would take Synthroid the rest of her life, and all would be well.
The day of her surgery, my siblings and I, along with some other family members, gathered at the hospital. We waited for what seemed like longer than a typical thyroidectomy should take. Perhaps the OR was busier than usual. Perhaps the start of the surgery had been delayed.
A few hours later, the surgeon came to see us in the waiting room. He took us to a private room. In all my years in healthcare, I knew nothing good happened when a family was escorted into a private waiting room. I swallowed hard and braced myself.
“The surgery went fine,” he began, and then almost as quickly added the word “but.” The moment the word “but” came off his lips, all our hearts sank and dread infused the room.
“The surgery went fine, but ... the cancer was more extensive than we expected. There was extensive undifferentiated tumor throughout her neck and into her mediastinum. We de-bulked as much of the tumor as we could, but there were still positive margins. I’m sorry, I know you all have had a rough time recently and I wish there was better news. This looks like a very rare and aggressive type of thyroid cancer called anaplastic thyroid carcinoma.”
I was overcome. This was just damn unfair. I thought, “No, doc, you must have us confused with the family in the next room. We already did this. We already went through this. Our dad just died of cancer. This can’t be right. It’s not possible. Not again.”
Facing bad news with bravery and humor
Even though the prognosis had switched from good to grim, my mother’s care team devised a treatment plan, and my mom resolved to fight the good fight. Some of the treatment was brutal, but she was determined. For six weeks or so, she went through a medical assault to combat the callous and indifferent cancer that was attacking her body.
After the initial course of treatment, I took my mom to the hospital for tests to gauge her progress. Even though she wasn’t being admitted, it was a long day, so they gave her an inpatient room to make her comfortable. My siblings and I were taking turns accompanying our mom to her appointments, and this happened to be my day.
After the tests had been completed, the oncologist asked if he could speak with me alone. I went to his office. I remember him being among the most caring and compassionate human beings I’d ever encountered. He told me that my mom’s cancer wasn’t responding to the treatments, and, in fact, was becoming more aggressive. He told me it was a matter of a couple of months. There was no further hope. She was going to die. Soon.
I left the oncologist’s office and took a few minutes to gather my thoughts and emotions. I called my older brother and we conferred. We concluded this was a must-lie situation. When I went back into my mom’s hospital room, we’d agreed that when she asked what the doctor said, I would be general and evasive; “He didn’t really say a whole lot, just that you should keep fighting the fight.” At least that’s what I had planned to say.
Fate had different plans for me when I entered her room.
I screwed on the closest thing to a brave face that I could find. I tried my best to appear relaxed. As soon as I walked into the room, my mom looked me in the eye and spoke.
“I’m going to die, aren’t I?”
A rush of thoughts went through my head. “She’s an adult. She has a right to know.” “She’s your mother, don’t make her give up hope.” “Reassure her, tell her it will be alright.”
The time it took me trying to think of what to say next probably gave it away. It was only a few seconds, but it was an emotional eternity. From a place I couldn’t fathom, a word I never expected bubbled to the surface and came out of my mouth as I nodded and looked her in the eye.
“Yes.”
For the next 5 minutes or so, there were no more words. Just tears. A long embrace. And then my mom looked at me and said, “Well, I guess lifetime membership in the book club isn’t such a good deal anymore!”
We laughed. I was caught off guard by the bravery and dignity – and humor – my mother displayed just after being told her life was at its end. Immediately, I knew I had just shared an incredible moment with another human being. It was, no doubt, one of the saddest – but the intimacy that came with that kind of honesty – the delivery of just about the worst possible news a person could hear – was startling. We both knew we had just shared a moment that transcended anything either of us had ever experienced.
My mom went into hospice care and died the next month. She had just turned 60. We made another trip to the cemetery and reunited her with dad.
Intimacy and human connection in the worst of circumstances
I was 30 years old and both my parents had died with months of each other. I wasn’t a kid, but I didn’t yet have the wisdom bestowed by middle age. The moment of brutal but beautiful honesty with my mom on that January day in 1996 in her hospital room taught me that there is intimacy in truth; even in truth blackened by the prospect of imminent death. That unvarnished, brutal truth can foster a human connection like no other.
As someone who’s been in EMS and healthcare a long time, I know it’s not ordinarily our role to tell patients with cancer or other deadly diseases that their time is up. But every day, we communicate with patients, family members, friends, members of the public and others, and it’s vital to remember that truth is the currency of all human interactions. Even when we must deliver hard truths, there can be an intimacy and a human connection that comes with honesty in the worst of circumstances.
I wish this was a lesson I could have learned under happier circumstances. But we don’t get to pick our life lessons. As John Lennon once sang, “life is what happens to you while you’re busy making other plans.”
About the author
Doug Wolfberg is a founding partner of PWW and was a longtime EMS provider and EMS system administrator prior to becoming an attorney.
