Knowledge is power. The knowledge that I’m talking about comes from an expert. Not Dr Google and not your cousin’s neighbour’s friend. And by expert – I mean a Specialist in your condition. You wouldn’t ask your nail technician to colour your hair. Everyone has their Specialty. Speak to your cancer specialist about your specific cancer questions. Your cancer specialist may be your surgeon, medical oncologist or radiation oncologist.
The best way for you to become more knowledgeable about your condition and to understand your treatment options is to ask your health care team a lot of questions.
If you can, take someone with you. Your partner or a supportive friend can assist by taking notes for you. If you think about and write down your questions in advance, it will help you to be clearer in the appointment about what you want to know. You can then run through your list with your Specialist.
Waiting rooms can be busy. Expect to wait, so perhaps bring a book or headphones to listen to music or podcasts. Appointments often run over time because doctors may need to fit in emergency patients. Doctors may also be called away to see a patient who is critically unwell, take emergency phone calls, or are kept later in the operating theatre because of a complex operation. An expert will always be in demand for their skills and knowledge.
In the flurry of a busy clinic, key messages can be lost or seemingly glossed over. Every patient brings with them their own story, level of health understanding / literacy, emotional load, and ability to process new information. As health professionals, we hear at university that “a stressed patient is only going to take in a very small percentage of what you are saying”. Medical professionals do their very best to titrate the flow of information and not overwhelm their patients. However, when you are being told about your cancer type, grade and stage, prognosis, and treatment options- it is impossible to process every morsel of information. The human brain can only take in so much!
I can’t stress this enough- it is OK (essential) to ask your questions, to need further information, to have to think about what you have been told and to require medical jargon to be explained to you more than once. There is a lot of information to take in.
You may want to know how your diagnosis and treatment will impact your future, what will the side effects be, how long will it all take, how long do you have to spend in hospital, will it hurt, will you loose your hair, what will your quality of life be during and after treatment, when will you feel ‘normal’ again, can you still work, will you be able to drive, can you go on holiday, how will you be able to look after your children, will the treatment impact your fertility, is there a cost, are there other treatment options, what about natural therapies… will you die? What happens if you decide that you don’t want the recommended treatment?
This is your body, your life, and your future, so ask away!
Not everyone knows what questions to ask. Part of the difficulty is that you don’t know…..what you don’t know. It can be frustrating, stressful and even disempowering to leave a medical appointment with multiple unanswered questions. Some patients can feel like they don’t have a voice, ‘a say’ or any control in their care. More vulnerability, more confusion, or more worry about your future is the last thing that you need.
The good news is that there are a lot of great resources out there. Choosing Wisely Australia is an excellent place to start. The Choosing Wisely resources help patients and their loved ones to ask questions and choose the right health care that is:
Have a look at Choosing Wisely Australia’s consumer and carers resources , It’s OK to ask questions- video, and Communicating with your healthcare provider resources. These resources are great to go through prior to your appointment. You can use these tools when talking to any health professional. The concepts can be applied when discussing the treatment plan with your nurses, allied health and holistic health professionals.
It’s also a great idea to write down the names of your health care team and a contact number for them. Some hospitals have appointment diaries or journals that they give to their patients to record information. If your hospital doesn’t have a diary, it’s a good idea to purchase and start your own.
You may have heard about the BRAN acronym? I love it. I first heard about it when I was in my Calm Birth class over 6 years ago. We were learning about how to be empowered to ask the right questions, to make the most informed decision during our labour. This was a revelation to me. Even though I am an experienced nurse, I expected that the obstetrician and midwives would just tell me what I had to do and ‘that would be that’. Remember, knowledge is power. Today BRAN is well established in health care decision making education- and it is an excellent tool for all of us.
BRAN is:
Benefits. What are the benefits of the proposed treatment plan? Why is one treatment preferable to another? When two treatment types are needed- why do I have to start with treatment X?
Risks. What are the side effects- short, medium and long-term? What can go wrong?
Alternatives. What other options do I have?
Nothing. What if I do nothing? What if I wait? What might my future look like… and over what period of time? What happens if I change my mind later and decide that I do want a particular treatment? Would I be too late to start a particular treatment type?
Ask your Specialist how soon you need to make your decision? You can always ask for some time to consider the information that you have been given and ask for a follow-up appointment to discuss your decision. It is important that you feel that you have made the right decision for you. Your Specialist will tell you if your decision needs to be made by a certain time / if there is a need for urgency in your decision making.
Your medical specialist is an expert in their field. Use the BRAN concept to ask questions to thoroughly understand your treatment options and risks to better understand what your future may hold. Also remember that no one has a crystal ball. Patients can respond in different ways to the same treatment. Your medical specialist will use their medical training, the latest research and personal experience in treating patients like you, to provide you with the best advice. It is essential that you have all of the information that you need to understand your condition and make the right health decisions for you. You are your own best advocate and advisor. No one knows you, like you.
If the information is not making sense or you feel that you need more time to consider your options- say so. In the end, it is your body. It is you who will experience the short, medium or forever effects of treatment. No question is too small, silly or insignificant. Having the information that you need will allow you to have some (at least a little) control over your treatment plan. Knowledge is power.
We hope that you enjoyed this article. Please drop us a comment below, we would love to hear from you.
X The Awakened Mumma, Author of ‘A Woman’s Guide to Navigating the Invisible Cancer Load‘
