I just finished reading When Breath Becomes Air by Paul Kalanithi. I’m glad that Lucy Kalanithi was speaking at an event with a friend of mine, Kelsey Crowe who wrote the book There is No Good Card For This (highly recommended), as I otherwise may not have added When Breath Becomes Air to my reading list. I’m glad that I did. There were some interesting observations and that I made whilst reading the book that I thought I’d share with you.
It occurred to me that my relationship with statistics changed as soon as I became one.
What patients seek is not scientific knowledge that doctors hide but existential authenticity each person must find on her own. Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability. (p.83-84)
I had said this myself early on – when I talk about the only statistic that mattered was one – the one that I was. I later came to learn that statistics were helpful in making treatment decisions (the unknown future), but there were not helpful after I had made a decision (the known past). Once the decision was made and the treatment was done, the statistic no longer had any value to me. It no longer mattered because I could not change the past – only the future. Although statistics look at past events, they are only useful when helping make decisions about future ones.
“Will having a newborn distract from the time we have together?” she asked.
“Don’t you think saying goodbye to your child will make your death more painful?”
“Wouldn’t it be great if it did?” I said.
Lucy and I both felt that life wasn’t about avoiding suffering. Years ago, it had occurred to me that Darwin and Nietzsche agreed on one thing: the defining characteristic of the organism is striving. Describing life otherwise was like painting a tiger without stripes. After so many years of living with death, I’d come to understand that the easiest death wasn’t necessarily the best. (p.89)
In reading this I had a bit of an epiphany. I had never really understood the idea from Buddhism that life was about suffering, but I had taken suffering to be about agony, and not discomfort or pain. When I hike and I’m pushing up a hill, and I’m breathing hard, I’m not comfortable. I’m pushing through the discomfort because I know that when I get to the top I will feel a euphoria. There will be a reward. I will be happy for having put in the effort. It is that type of suffering that is good suffering. It is the type of suffering that leads to happiness. I do not think we need agony to appreciate happiness, but we need some suffering. That was my ah-ha moment.
In reading the book, I also found myself reflecting on the different lenses associated with decision making. More specifically the ways things change when dealing with critical illness.
“Okay. But there’s one thing.” She paused. “I’m totally happy for us to make your medical plan together; obviously, you’re a doctor, you know what you’re talking about, and it’s your life. But if you ever want me to just be the doctor, I’m happy to do that, too.”
I hadn’t ever considered that I could release myself from the responsibility of my own medical care. I’d just assumed all patients became experts at their own diseases. I remembered how, as a green medical student, knowing nothing, I would often end up asking patients to explain their diseases and treatments to me, their blue toes and pink pills. But as a doctor, I never expected patients to make decisions alone; I bore responsibility for the patient. And I realized I was trying to do the same thing now, my doctor-self remaining responsible for my patient-self. Maybe I’d been cursed by a Greek god, but abdicating control seemed irresponsible, if not impossible. (p.112)
There is so much to unpack in this part of the story. Let’s start with the role of the oncologist. In this case, the doctor sounds absolutely amazing. She appreciates that at different times in treatment, the patient needs different things. With the “expert” patient early on, the doctor is a consultant – providing her expertise on the disease. The patient is the one making the decisions about which treatment path to take. The doctor steps back and has the conversation with the patient as partners in determining a care plan. However, the doctor is also aware that there will come a time when what the patient needs most is for someone else to take charge. She is letting the patient know that when he is ready to let go, she is there to take the reigns and make the decisions that need to be made.
Then there is the doctor-patient (the author) – that is, the patient who is also a doctor. He talks about his time as a junior doctor, willing to learn from the patient. I actually wrote about that from the patient perspective for In-Training magazine: Sometimes the patient is the teacher. The exception I take to his statement is that the author is assuming that all patients of critical or chronic illness are experts in their disease. Not all patients, even the educated ones, want to be experts in their diseases.
The idea that the author never considered the idea of releasing responsibility for his own care may speak to the culture of the US healthcare system – or maybe it is just a Stanford thing? In my experience at Stanford, I had to be the continuity of my care. I had to be the one that knew which doctors to see for which ailments, but also, I had to brief my doctors on what the other doctors where doing and saying. I am the one who knows the whole picture of my care. I do not have a single doctor that can do that for me.
This concept of patient being responsible for care is one that was foreign to me before I got here. I was taught that I brought concerns to my doctor, and my doctor (my primary care physician or family doctor), was the one who was responsible for my continuity of care. She was the doctor who had the ‘entire’ picture of my medical history (one huge paper file). I had no concept that I would be the one to maintain the file and that continuity of care until I moved to the US and had to take on that responsibility myself. I had to learn that through immersion into the system that was foreign to me.
Then there is the issue of responsibility “But as a doctor, I never expected patients to make decisions alone; I bore responsibility for the patient”. This statement bothered me, in part because as a doctor you may make certain decisions about my care, but I’m the one that has to live with those decisions. What you take as responsibility, I need to live with. The statement feels a little patronizing to me, and yet, as I read the book and got to know the author through his writing, I felt that he was anything but patronizing. He was all about helping patients come to understanding their values and how those values helped guide treatment.
One of the bits of advice that I received early on, and regularly talk about is ‘decide who you trust, and trust them’. This is the essence of being able to receive care. Part of that trust is partnership with physicians when it is appropriate to partner, but as a patient also letting go of the need to control things and trusting the physician to take care of you. We do this with surgeons when we go in for an operation. We cede our ability to care for ourselves while we are under anesthesia. We trust that the surgeon we chose will do what is best for us, based upon what they know of our values but also what we know about their skill.
There was also an incident in the emergency room with a resident, that also speaks to how he knew of the inter-workings of the hospital system, and yet was still challenged with getting the care he believed was necessary at the time. Through illness, he was required to cede control of his care to the resident who was on duty that evening.
Overall, I think this book would make for a great read and a great discussion on the role of the physician and the role of the patient. I think there are so many layers to the discussion.
Have you read the book? What did you think? Any insights?