‘Tell me it will be OK:’ Learning to deal with patients’ pain
She looked up at me earnestly – “So can you tell me that everything will be OK?”
I shifted my eyes, the way I do when I’m contemplating, choosing my words. “Well …”
She knew what I was doing, she interjected “I know you don’t want to but just say it to me. I just need to hear it. That I’ll be OK.”
Some of my best friends in medicine chose a career in palliative care. When I decided on general surgery, I did not anticipate how much of it would be palliation. I flashbacked to the single palliative care lecture we had in medical school. Dr. Alan Tanaguchi, a palliative care legend, was trying to plant an early seed of the true meaning of palliative care in the minds of fertile medical students – much more effective than dissipating misconceptions in seasoned physicians. He told us that palliative care is delivered over a lifespan – it is not just end of life care. That any kind of treatment to make symptoms better qualifies as palliative care. Years later, his words gave me the context I needed to choose my words.
Ella was my youngest patient on the chest surgery service at the time. She had recurrent collapsed lungs (pneumothoraces), treated with recurrent chest tubes – tubes that we shove into the chest cavity through the chest wall while the patient is lightly sedated. The chest tube sucks the air out of the chest and sticks the lung back up to the chest wall. It’s a painful procedure to have once – she had had it five times. Now, she was four days after her pleurodesis operation – a procedure where we put talc in the chest cavity to cause inflammation that scars the lung to the chest wall, which ensures it doesn’t collapse.
“Tell me it will all be OK.”
“I can’t tell you that, Ella. I can tell you that 95 per cent of people who have this operation at two years are pneumothorax free. I can tell you that you are less likely to have a pneumothorax again after this operation – that’s why we did it. I can tell you that, if you don’t smoke, you’ll likely be part of that 95 per cent. But what I cannot say for certain is whether it will all be OK.”
She appeared frustrated. And anxious. Not the response she wanted. She continued to try to coax me into comforting her: “Before this all happened, I was perfectly healthy. I was going to my classes like a normal student. After this happened the first time, I couldn’t stop thinking about it. What if it happens again? When I’m in class? When I’m at a party? When I’m going for a jog? When I’m at work? Every little twinge I feel – I wonder if it’s happening again.”
Another one of Dr. Tanaguchi’s pearls came to mind. Sometimes your patients will have symptoms like pain or nausea. You will easily become adept at dealing with those. But sometimes it will be more complicated. Like a daughter realizing her mother will forever be bedbound. Her daughter’s grief may need more palliation than the patient herself. Like a man newly diagnosed with Type 2 diabetes, mourning his once healthy, non-medicalized self. And his mourning needs palliation. It won’t always be as straightforward as you expect.
Ella didn’t need a surgeon or a surgical resident or any of the data from the studies I had read. She was fixed from a surgical perspective. She was “dischargeable,” as we would say amongst ourselves. But she needed more than to be fixed, she needed palliation. And that palliation was not end of life care or pain or nausea control. Ella was mourning her once healthy self. And that’s what she was really saying to me, in between the lines.
When my dad had his heart attack, he did the same thing. He asked everyone, “Why did this happen to me? I’m not overweight. I exercise. I eat healthy food. I don’t smoke. I don’t have diabetes.” I told him that sometimes, bad things happen in medicine and there is no closure, there is no why, there is no prophecy for the future. That answer was similarly unsatisfactory to him as it was to Ella. He sat on our plush carpet atop our cool hardwood day in and day out, pondering why and how. Asking friends, more doctors, family. Mourning his once healthy self. He never got the answer he wanted.
Ella was doing the same thing.
“Ella, I cannot tell you it will be OK. I can only tell you the facts. You have to know that you have an illness now, you have a medical history. And no one can change that. You have to leave here with a strategy to cope with that – the small possibility that it might not be OK. And if you need help building those strategies, we are here for you. But things will never go back to the way they were before.”
There are many moments in surgical care like this. When our patients are mourning something other than death. To us, the cause of the mourning may not amount to much. It may pale in comparison to the crashing patients we see on call, the severity of disease in patients from underserviced areas, the ICU patients on the verge of losing everything. And because of this, we often fail to address the moments of grief in which we are needed as palliative care physicians instead of as surgeons.
On the other hand, because we deal with so much sickness – a new diagnosis of IBD, an incurable metastatic small bowel tumour, positive margins on the breast resection, a new permanent stoma – we need to be even more adept at palliation than other disciplines. As a surgical resident, unexpectedly, a huge part of my job is palliation. But I’ve never received training on how to do it. I’ve never received feedback on delivering palliation. Am I doing it right? I wonder.