“You have cancer.” It’s a statement nobody wants to hear. As a doctor, I find it difficult having to give a diagnosis like this, never mind having to receive one.
I’ve now been on both sides of this life-changing diagnosis. As a medical professional, I strive to take great care in delivering diagnoses clearly, with care and compassion. The diagnosis has direct and important implications. It takes time for the news to sink in. People and their families are often in shock, the diagnosis is frightening, and the words are all new and confusing.
My own diagnosis of breast cancer in 2003 and of advanced breast cancer in 2017 gave me a new understanding of the importance of giving and receiving such a challenging diagnosis. As a patient, I feel fortunate to have much greater medical knowledge than most people. It has helped me to navigate my cancer treatments from a place of understanding. Sometimes, that knowledge means that I understand the implications of things more, which can be frightening, but knowledge is a great leveler to fear. Fear alone without knowledge is much scarier.
“…knowledge is a great leveler to fear. Fear alone without knowledge is much scarier.”
I realized it was time to check in on my practice. How well did I talk to people to give them difficult news? Was I explaining things in a way people could understand? Did I talk too much? Did I take enough time to ask what was important to them; to ask for and answer their questions and ensure they left our appointment with the confidence to undertake their treatment process? Did I provide the emotional support needed to ensure their mental health was cared for to the same extent as their physical?
I am a hematologist who specializes in bleeding and clotting with a particular focus on women’s health. Some of my patients come in with very specific medical issues such as venous thrombosis, commonly known as blood clots. When I give them the results of any medical testing, I take it as my responsibility to talk to them about what is important and develop an individualized, clear plan for their care and treatment that suits their specific needs and lifestyle.
Right now, in healthcare, “self-advocacy” is a popular buzz word.
We understand that it is vital for patients to feel empowered to advocate for their own healthcare and to know who to go to for help when they need it. Given current healthcare challenges, helping people and their families to understand the medical issues and work in partnership with their clinical team is the best way to ensure they receive the medical care that they require. But what is the basis of that partnership and how do we build it?
It starts with creating space for open and unhurried exchange of information. Taking time to establish what patients understand about their diagnosis, to allow a discussion of what their goals are and how they align with those of the medical team. What a patient can expect from treatment, what is the likely long-term outcome, are there any potential complications from treatment and who should they contact if there are problems. These discussions take time, and it is unlikely that all the issues will be covered in a single meeting. Sometimes there are complex issues to discuss and finding the best answer doesn’t happen overnight.
“Sometimes there are complex issues to discuss and finding the best answer doesn’t happen overnight.”
I remember caring for a young woman who was studying to be a nurse who had been found to have Factor V Leiden (FVL), an abnormality of one of the clotting factors in the blood that increases the risk of developing a blood clot in your legs or lungs called deep vein thrombosis or pulmonary embolism. She had no personal or family history of blood clots. At that time, she was in a relationship and went to see her doctor for a repeat prescription for her combined hormonal contraceptive birth control pill. Given the finding of FVL, her family doctor chose to stop her birth control pill, because taking it also increases the risk of blood clots. She tried other forms of contraception, but these failed and she fell pregnant. She chose to continue her pregnancy even though her boyfriend’s family did not approve. The result? The boyfriend broke up with her and she was unable to complete her nursing school training. Therefore, she became a young single mother.
Her life was completely changed because of a decision made by her doctor. Had the doctor taken the time to discuss the pros and cons with her, or asked for specialist input into the decision, the discussion could have led to her making a different choice about continuing the combined oral contraceptive pill. She would have been told that in her case, with her lack of a family or a personal history of FVL but otherwise had no other risk factors for blood clots – her risk of developing a blood clot on the contraceptive pill was around 1 in 1,000 up from a background risk of 1 in 10,000. How would that information affect her decision? Unless she has the chance to hear this information, how can she make the best decision for herself?
When I think back to my own cancer diagnosis, although I went into it with more background knowledge than most people in that position, I appreciated that my doctor treated me as a regular patient and went back to the basics when giving me my diagnosis. This allowed me to absorb all the information, develop an understanding of what would come next, and leave the appointment feeling confident, albeit scared, but not confused or helpless.
As doctors, we should not assume or expect that people will come with full knowledge of their condition and it is our job to start off the therapeutic relationship in the right direction. Do not assume someone’s level of knowledge and take time to explore what is important to them and explain what they can expect. Explore what they want to know and what is important to them. As doctors we should take responsibility in helping patients reach a level of knowledge where they will feel safe in their healthcare journey. It is the only effective way for patient “self-advocacy” to work to improve health outcomes for people.
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