Dear Doctor... Janet Dukowski is a brain tumour survivor and lives in Vancouver, Canada, where she works as a Registered Dietician at Vancouver General Hospital
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Dear Doctor, My name is Janet Dukowski and I’m a brain tumour patient living in Vancouver, British Columbia, Canada. I was diagnosed with an oligoastrocytoma in 2009. One night, I had a grand mal seizure, which took me to the hospital. I had a CT scan and an MRI, and was diagnosed with a brain tumour by morning. I remained in hospital until I had my craniotomy. Up until that point, I had been told that my tumour was benign, and that further treatments would be highly unnecessary. It wasn’t until a few weeks later, sitting in the office with my oncologist (who was over an hour late and didn’t have the right chart for me not a good start), that I received the pathology results - my tumour was malignant, and I was going to have to go through both chemotherapy and radiation. Time stood still at that point, and although there were three of us in the room with the doctor, none of us had come prepared to ask questions about this “new” diagnosis. As we didn’t seem to have any questions, the oncologist took his chance to go and see his other patients.
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We were left in the dark, wondering what was going to happen next. My life had suddenly changed permanently. It wasn’t until my first consultation with the British Columbia (BC) Cancer Agency that I could see a light at the end of the tunnel. They did a thorough patient interview, took the time to outline my treatment options, and answered all of my questions. They gave me hope when everything seemed hopeless. I’m writing to thank all of the healthcare professionals and researchers who have dedicated their lives to this devastating disease. Without you, I would not be here today. I would also like to thank my healthcare team at the BC Cancer Agency - I am truly appreciative of everything they have done for me too. But I also wanted to share some of my thoughts in this letter to you on how doctors communicate with patients. I’ve had a bit of experience of this now. Maybe what I say will strike a chord. Maybe it will help. Being given a brain tumour diagnosis is the most life-altering event that has ever happened to me. I now appreciate that the way in which a clinician communicates the devastating news of a brain tumour diagnosis to the patient can have a significant positive or negative impact on that person’s journey, no matter how long or short that journey might be. As I see it - and having been on the receiving end of some tremendously upsetting news when I was diagnosed with my brain tumour - there are some things clinicians should do when delivering bad news. From the patient perspective, it’s really important to take a bit of extra time to learn about who your patient is as a person during the first appointment. I know that time for appointments is limited and you have many other patients to see in your day. So, in the first place, I think it’s best to be up-front about the length of the initial session. For example, let the patient know that you have one hour (or whatever) to spend with them. When there are approximately 15 minutes remaining in the session, you could say: “I am aware of the time, and we have about 15 minutes remaining in our session - have I addressed all of your priorities today? Do you have any remaining questions I can answer during these last 15 minutes?” Please also reassure patients that there is no such thing as a “stupid” question! However long you have with the patient during that first, difficult and life-changing meeting, try and take the time to listen to the patient’s individual story, and gain some insight into what they have been through up to this point. Ask the patient what he or she already knows about brain tumours, and more importantly what they want to know at this time.