You’re on your oncology rotation and you’re faced with Mr Smith, a 57 year old father of three who’s been feeling off for a few months and interestingly, he’s been looking a little bit more yellow as well. A blood test shows a raised bilirubin and the CT scan shows a large head of pancreas mass with lesions in the liver and lymph nodes. He came in through ED with nausea last night, and now you, the junior doctor, the registrar and the consultant are reviewing him.
His family hasn’t arrived yet and he looks frightened. He is a Samoan man who was well up till a few months ago, and works as a labourer. He left school in Year 8. He doesn’t quite understand what’s happening but knows its bad. Really bad. He’s asking a lot of questions but its not information he wants, its reassurance and the consultant isn’t prepared to give him that. He is a physician scientist who runs multiple clinical trials and feels that patients are better served by having the truth given to them early and quickly. At the end of the conversation, the man is in tears, frightened, and the registrar helpfully passes him a box of tissues and then heads bowed, all three of you solemnly move on to the next patient.
The above is a fictional scenario but the elements will be appreciated by all junior doctors – the junior doctor witnessing a senior doctor breaking bad news, the breaking of bad news in a busy morning ward round and ultimately the poor delivery of bad news.
There are many ways around the issues this vignette raises (simulated training, simple rules like finding a room with a specified time of day to break bad news, doing it when family are present) – but one of the ways through it is the illness narrative. This is a genre of non fiction writing where a patient writes about their own illness, and in my opinion is a great window into building empathy for doctors (so that vignettes like the above don’t arise!). Thankfully, few of us will have first hand experience in being ill, and then again, it is unlikely that we will experience first hand many of the illness we treat. By reading first person accounts of illness we can begin to appreciate the isolation, stigma, shame, disempowerment and suffering that diseases can lead to for a person.
The Diving Bell and the Butterfly (Jean Dominique Bauby) is likely one of the most popular illness narratives and has in fact been turned into an award winning movie. It’s a story by a man who had a brainstem stroke leaving him with “locked-in” syndrome, possibly one of the cruelest diagnoses leaving the person with eye movement only (complete quadriplegia and loss of voice). The entire book was written with the author blinking his left eyelid to indicate a letter on a character chart and took ten months to complete. An average word took approximately two minutes. Bauby’s book has become so popular partly due to his ability to rise above a condition which would seemingly break a person’s will to live
“Want to play hangman? asks Theophile, and I ache to tell him that I have enough on my plate playing quadriplegic. But my communication system disqualifies repartee: the keenest rapier grows dull and falls flat when it takes several minutes to thrust it home. By the time you strike, even you no longer understand what had seemed so witty before you started to dictate it, letter by letter. So the rule is to avoid impulsive sallies. It deprives conversation of its sparkle, all those gems you bat back and forth like a ball-and I count this forced lack of humor one of the great drawbacks of my condition.”
Illness narratives like these remind us of the fact that patients we treat have the vast complex moral, emotional and intellectual worlds that we inhabit ourselves; and that we need not reduce them to their diagnosis. On the busy ward round they are a stern reminder that each line on your list is a person that is under your care. The unfeeling doctor, the robotic doctor, the impersonal doctor are all variously parodied in many of these illness narratives. As a junior doctor you can play a key (and hopefully positive!) part in your patient’s illness narrative.
Some of my other favourite illness narratives include
Susan Sontag, Illness as Metaphor
Temple Grandin, Emergence: Labeled Autistic
William Styron, Darkness VIsible
John Diamond, Cowards get cancer too
Anatole Broyard, Intoxicated by My Illness
Susanna Kaysen, Girl, Interrupted
Bryce Courternay, April Fool’s Day
Feel free to add in any ones that you have been inspired by!