I’m not sure how it works elsewhere, but this post relates to my patient experience so far – three weeks after diagnosis and no meeting with an Oncologist. The decisions so far are being driven by my radiologist, my surgeon and my GP.
Wait a minute, says both the patient and the User Experience person in me, where’s the Oncologist? I have cancer – in my mind, the most important person in this mix is the Oncologist – the specialist who knows cancer treatment. Why am I not talking to that person? Decisions made now affect my choices later – even as a newbie/uninitiated cancer patient, I figured I needed more input. I wanted a 360 degree view up front.
So far, my patient experience consisted of
- breast self exam discovery
- GP referral for diagnostic mammogram and ultrasound
- radiologist (who I never met) referral for needle core biopsy
- different radiologist conducted needle core biopsy
- informal advice from radiologist to book a surgical appointment
- GP delivery of diagnosis based on pathology report
- GP referral to a surgeon (whom I have not met yet at this point)
No contact from the Cancer Agency that coordinates all cancer care. No orientation to the type of cancer I have and the path that’s ahead of me. Just appointments made and tests ordered.
So, I got on my soap box with my User Experience hat firmly in place and ranted. To Executive Directors and CEOs and radiologists and my GP that, with all due respect, this was not a very friendly patient experience. How did this qualify as patient-centred care?
Note that this was not about the quality of care I was receiving. The quality was and is excellent! I am very lucky and very grateful to have access to the best cancer care in my country. What I feel is missing is the inclusion of the patient at the very start of the course of care about all decisions – the moment of diagnosis. When they tell you you have cancer, I want every type of specialist who is going to be a part of your future path to be a part of that first discussion.
I learned that, behind the scenes, that 360 degree approach is taking place on the clinical side. Comprehensive and collaborative consultations are held by the team of specialists – including my surgeon – regarding my course of care at every decision point. That’s great, and I am deeply grateful for the excellent care they’ve given me so far. They are making decisions about my choices, though, without consulting me.
It turns out that, based on the size of your tumour – that stage/grade thing again – there are protocols for care that are followed. My tumour was small and my stage was early. Surgery would be my first step, followed by Oncology treatment (including adjuvant endocrine therapy, if appropriate). For others, they might need what’s called neoadjuvant therapy before surgery – their tumour might be too big or inappropriate for surgery first and needs to be shrunk. In that case, they get to meet their Oncologist and/or Radiologist first.
Regardless of the grade or stage, in my opinion, the patient-centred approach should be that the first meeting after diagnosis includes all of the specialty types who will be a part of the journey forward. That discussion should be had before a single final decision is made. It doesn’t have to be the specific person (nice, but not essential). But someone from that area of specialty should be included in that first patient meeting. Protocol has apparently already determined what’s required based on the pathology report, so it shouldn’t be hard to pull that team together and put them all in a room with the patient so we can ask questions and get a view of the journey up front.
My care team has been excellent, and I consider myself extremely lucky to have literally received the best available care in my country. I was also lucky to have had the benefit of my work friend who had just trod this path and provided several heads up moments. And, my GP had a personal connection to the best breast surgeon in the city (literally), so, again, after the bad news of having cancer, the rest of my news and options have been very good.
Several people have told me that, if they or their family members knew at the start what they learned later during their course of care, they would likely have made a different choice when they had that initial discussion with their surgeon. That choice made up front – before a meeting with the Oncologist – put things in play downstream that, given the choice to do it over again, they would reconsider that first step.