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Writer's pictureChristine Petrides

When Breath Becomes Air: What is patient-guided treatment?

Updated: Sep 23

By Christine Petrides BA, BSc Physiotherapy


In perfect health I begin, Cease not till death

I was enthralled by this book, I could barely put it down. The story begins with the devastating news, leaving you with little hope from the very beginning. You can’t help but feel the uncomfortable irony so blatantly stated with no attempts to cover up the sad state of things. You feel deeply for this character, for Paul, immediately. 


Paul goes on to tell us his journey of becoming a doctor, holding value in human experience and what it means to be alive. He is ever curious about what makes life meaningful and what the needs of people actually are. This story is so touching and keeps you thinking long after you have put it down. 


Despite the beauty of this story, and wanting to just hold it as such, I couldn’t help but feel frustrated with how the diagnosis and treatment was handled. It felt unjust. I couldn’t understand why the diagnosis seemed so long to come and the treatment, to put it bluntly, felt like subpar treatment disguised as patient-guided care. Now, I recognize that I may be totally off here. I’m drawing on my own interpretation of a small part of what was shared with me. I’m not a highly specialized cancer doctor and most likely, there was more nuance to all of these decisions and more things discussed than was told to me as a reader. However, in this context, it came across to me, as a treatment provider projecting their own values onto a patient and pushing them in that direction. I couldn’t help but feel rigidity in the approach and was left to wonder if that in the end it might have cost the patient his life or at least some more time.  


I find this interesting because we all struggle with flexibility and rigidity as treatment providers. We are all trying to find the balance between sharing what we think is best and allowing space for the patient to share and decide what is important for them. 


I agree that Paul’s identity as a surgeon was a huge part of who he was, but why was there not more space for something new to emerge at the end of his days? Why was it so important that he work himself to the ground before his death, just to hold onto his identity? 


I was frustrated to read about a highly specialized doctor seemingly ignoring some of the most basic principles to health and how the body functions. We need rest, we need proper nutrition, we need to minimize our stress. It was clear that Paul’s residency/surgical lifestyle provided almost none of that. He reminisces about typical lunches consisting of diet coke and ice cream sandwiches. In the first part of his treatment he did take time off, rested, ate well, and it seemed to be helping him, his cancer was at bay. It also seemed at this point that the grip he had on his identity as a surgeon was loosening, he was beginning to accept that there were other things in life for him and that surgery might not be available to him anymore. He seemed okay with that. Then, after some conversations with his treatment provider, he went straight back to this hugely unsustainable lifestyle, and things took a turn for the worse. But, that’s not surprising right?


Perhaps this doctor who continually refused to prognosticate this case, knowing how dire the situation was, wanted to focus the patient to “live fully” until the end, but again, that seemed more in line with their own desires/ideas about what “living fully” meant. If that is the case, then at best it’s misguided, and at worst deceitful. Paul clearly wanted to talk about it, he mentioned it multiple times in the book. I know these things are tricky. Prognostics can be deadly and I don’t know what the right approach ultimately is. But I just kept wondering why isn’t “living fully”, interpreted as something else like; taking care of your body, spending more time with your family, minimizing stress and perhaps allowing yourself more time?

 

There’s the argument to be made, that longevity is not always better and of course that is true. We also know that following a different type of treatment never guarantees another outcome. Paul was going to die no matter what right? So how do you decide what's the next best move? Well, you don't, you help the patient figure it out. It seemed like Paul completely gave this power to his doctor. He was understandably overwhelmed and devastated, as we all would be in that state. Which makes it even more important to recognize as health care providers, to make sure we are not pushing our own values onto patients and to make sure that's really what the patient wants. Often that power is given by default and we have to be responsible enough to give it back.


Perhaps, “cease not till death (as I have always been)” really was the main value here and I just don’t get it. But it felt to me that that conversation didn’t even take place and that felt like a failure of the treatment to me. 




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