You will get to know the patient beyond the medical history in their chart. You will see the patient as the individual that they are and not only by their tumour type. Patients and their families will be very grateful to you for this approach! We are all different and I don’t think there is any such thing as a “typical brain tumour patient”. So the “cookie cutter” approach - using the same prepared speech for every patient - may not address an individual patient’s concerns and priorities. I believe that a personalized approach at the initial appointment can go a very long way in developing a mutually respectful and trusting relationship between patient and doctor and can help to soften the blow of such a terrifying diagnosis. And always - keep in mind that although you have probably had to give this diagnosis to many patients in the past, this is the first time that this particular patient is hearing the devastating news.
Another thing… Most patients and their families are understandably incredibly nervous whenever they go to see their doctors. It’s really helpful if the doctor is calm and relaxed in the appointment and most especially, when delivering bad news. Being calm and focusing your time on the patient will create an environment that helps the patient (and his or her family, if they come to the appointment) to better absorb and retain the information you give. Being told you have a brain tumour - no matter what age you are - is a highly emotional and frightening time. On giving the news, allow the patient a few minutes to sort through their emotions and absorb their diagnosis. Keep the information during this appointment specific, and remind the patient that there will be more meetings later on to discuss future questions and concerns. It also helps to repeat your key points and takeaway message. Many patients are in a fog of disbelief when they get their diagnosis so they sometimes don’t hear things properly the first time they are said. You can also suggest to the patient and/or family members/caregivers that they write down certain key points that you would like them to remember. Whatever the patient says, keep in mind that they are terrified and you need to make them feel that their questions (no matter how many times you’ve heard them before) are extremely important to you. And please, if you can, make sure and give the patients and their families written resource materials, including commonly asked questions with answers, as well as contact numbers for physicians, nurses, social workers, and any local brain tumour patient
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organizations which offer support, information and advocacy. I can’t tell you how important this is to do. With regard to the notion of hope you, as a doctor, are one of the most important sources of hope to a brain tumour patient and their family because you are an expert in this field of medicine. Delivering a message of hope in what is seemingly a hopeless disease can be a real challenge. I know that. And the message also has to be truthful as well, making it even harder to be positive about what is often seen as an utterly hopeless situation. But you can give a message of hope without sacrificing either truth or hope. You can say that this is a tough disease, that it will change one’s life forever and that the journey may be full of substantial challenges. But you could stress at the same time that you are going to give your patient the best care humanly possible. You are going to do your utmost to help in any way you can. You can tell the patient that there have been some significant advances in the treatment of brain tumours and that the science and treatments are changing and improving. You can tell them that there are a number of new therapies in the developmental pipeline. You can communicate your dedication and determination to the patient, and explain how you want a positive outcome for him or her as much as they do. What about the tough question: “How much time do I have?” Well, I think that a clinician’s prognosis is really only a “best guess” or estimation based on averages, and unless a patient is adamant about a timeframe, perhaps a statement of specific months and years is best left unsaid, certainly in the early days. You could tell the patient some success stories. There are always people who overcome the odds and become long-term brain tumour survivors. I have met people like this who have lived beyond what everyone expected and who have confounded the odds. We all need to accept our diagnosis and understand the significant challenges but we can all hope that we might be a longterm survivor too. I want to thank you for taking the time to read this letter and for helping brain tumour patients like me to live the “new normal”.
Yours sincerely,
Janet Dukowski Brain Tumour
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