I am writing this midway through a Tuesday, meaning that I am about 30% through my working week. How is it going, you ask? Well, it’s all relative isn’t yet? In the last 24 hours, I have had to break some really terrible news to two young patients, both in their mid 30’s, one of whom clearly now has motor neuron disease and the other who has Huntington’s Disease. To say they did not expect this news would be a huge understatement. Neither had a family history, even the patient with Huntington’s Disease, yet both have now received awful diagnoses given that both conditions are incurable and fatal. What do I feel, having delivered this news….well, more on that later. These diagnoses were reached after a long period of investigation and follow-up. Neither had the classical phenotype associated with the disease and both were initially diagnosed as having treatable conditions. Problem was that neither responded to treatment, hence the re-evaluation, hence the prolonged agony (for the patients, not for me I hasten to add).
For anyone who has ever seen a neurologist and who has wondered what makes them tick, here is the answer: neurologists are intellectual junkies. We like the thrill of the chase, we love that feeling of nailing down that once elusive diagnosis. The more rare the disease, the greater the intellectual satisfaction. Eponymous syndromes, new diseases that have not yet been delineated, rare genetic disorders that the medical literature forgot….all fair game. At the end of that diagnosis however, there is a person and while many patients are relieved that a diagnosis is finally reached, all will carry daily physical, cognitive and functional reminders of the intellectual adventure that I, as the neurologist, decided to undertake.
So, how did my consultations with these patients turn out? Well, both patients were accompanied by family and no one, not even the patient or his parent, spouse or child shed even a single tear. There were questions about prognosis, there were questions about magical cures, there were questions about whether I was sure of what I was saying. The answers were: fatal, no and yes.
When it came to my role in this process, there was only one question left? Was I empathetic? The answer I am afraid will never be known but I would not be surprised if I was slightly deficient in that department. I mean, I did all the things they tell you in medical school: don’t deliver news across the table, pull your chair closer to the patient’s, maintain eye contact, be sincere, no prolonged introduction, short, to the point…give time for the news to sink in and stay on message. Be honest.
A recent article from a Canadian centre has assessed the level of empathy demonstrated by young doctors in the delivery of news regarding the diagnosis of motor neuron disease (1). The major finding was that there are issues with the way in which doctors are taught to deliver bad news. The study reflects previous work that has demonstrated dissatisfaction with how doctors deliver bad news to patients (2). Is the problem with medical education or is it doctors who are desensitized to these awful scenarios?
1. Schellenberg KL, Schofield SJ, Fang S, Johnston WS. Amyotroph Lateral Scler Frontotemporal Degener. 2014 Mar;15(1-2):47-54. doi: 10.3109/21678421.2013.843711. Epub 2013 Nov 18. Breaking bad news in amyotrophic lateral sclerosis: the need for medical education.
2. McCluskey L, Casarett D, Siderowf A. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004 Sep;5(3):131-5. Breaking the news: a survey of ALS patients and their caregivers.