Nicole Cooper is a management consultant, advocate and patient. She was diagnosed with terminal cancer four years ago and essentially told she had no options.
She did not accept the prognosis. Over four years later, Ms Cooper shares her remarkable experience with BioPharmaDispatch, as a patient who has experienced the 'system' and emerged as an incredibly powerful advocate.
"I was diagnosed with stage four colorectal cancer in March of 2017, so have very much been wearing the patient hat for a while now. Somewhere in amongst that experience I managed to transition from patient to advocate, which has been an amazing opportunity and experience," she said.
"When I found myself in the health system and as a patient, as a cancer patient with a pretty dire prognosis of 18 months to 24 months, I had to call on a lot of my own skillset, my education, to guide the system, to guide myself, to guide my care team towards the treatment pathway that I needed.
"I realised my capacity to do that really sat in my experience and that the system needed to do better for patients, that it should not be up to the patients to advocate for themselves, particularly because they would not necessarily have my work experience."
Ms Cooper said her diagnosis essentially involved an oncologist saying it was "just too late" and that a "multidisciplinary team meeting have all agreed and we are all in very strong agreement that this is a very sad set of circumstances, but unfortunately there is nothing that can be done."
"That was an incredibly isolating experience and an incredibly disempowering experience because they had not met me as a person. They had never seen me. They had no idea about my broader health status, my experience of life, my capacity to fight my cancer, my interest in doing so, my reasons for living, anything like that.
"So that initial opinion, of course, was one that I instinctively rejected and it did not sit comfortably with me for all of those reasons. It was not of course until I sought a second opinion and saw the alternative points of view that I realised just how personally tragic that diagnosis was for me, how very much alone I was, in a set of circumstances where I should, as a patient, a newly diagnosed patient, have access to information and support and what have you, but also just how much the decision on the future direction of my health had already been made and was completely outside of my hands."
Ms Cooper said the 'system' was willing to 'embrace her' as a patient if she was prepared to accept its predetermined view of her prognosis. "If I had my own opinion, my own insights, my own intelligence, my own research, my own insights, anything like that, then the system was a little bit offended and the system, the power dynamics that existed, did not really support that."
"They are a service provider. I am paying for this service. I am ultimately the client in this situation, not to mention this system exists to achieve an outcome for me. And yet, the expectation is that we are so deferential and we do not even address our esteemed doctors by their first names. We are invited into conversations when it is appropriate to do so, as determined by someone else and not ourselves."
Ms Cooper said she finds the idea of 'inviting in the patient voice' as "quite offensive".
"That suggests I can adequately speak on behalf of all of these individual patients with very individual stories that are impacted by the decisions made by many other individuals within the system and the nuance of that experience.
"The idea I could speak on behalf of that, but also that it would be adequate to have a process of design of any system or structure and suggest that it would be appropriate to also design the point at which we invite in a patient voice, hear it, and then politely ask them to leave and we have heard enough."
She continued, "I am speaking quite bluntly here, but I feel like this needs to be said because I feel that the majority of patients who are out there experiencing things, that are really, really important, have no idea about these opportunities to share their voice because they are over here doing really important life fighting or health experience work. They are in the system doing their thing, so they do not have an opportunity and an angle to come in. When they do, they want to do more than just having a moment to share their voice. We are not going to see a lot of change from just sharing a voice."
Ms Cooper said, "...every time we are doing anything in health we need to look around that table and say, where is the patient? Do we have a patient in the discussion?"
She added, "Everyone wants to wear their health economics hat because that is the fashionable thing to do. It would be nice if it was fashionable to care about the patient and their outcome, and wow, this diagnostic test might actually show something up that could change your treatment pathway and extend your life by 12 months or 24 months or 12 years. It would be great if that was the thing that we were all thinking about, the hat that we were all wearing."
