“I don’t know how much you want to know,” said the oncologist when I had my first cancer (ovarian) in 1996. I said nothing but the first chance I got, I grabbed a big cancer book off a shelf in the old Whitcoulls in Queen Street and looked up the possible diagnosis he had given me. Shock, horror. No one seemed to survive it. Later on I said to him, “The stats are terrible.” He bumbled through an answer, poor guy.
We were just on the verge of getting the internet then – the following year I would have it – but in the meantime my cancer was re-diagnosed by a specialist oncologist and treated. I was cured – but the difficulty in getting a diagnosis and the lack of information seemed to cause me permanent trauma. I suffered my first ever bout of depression AFTER treatment and was never really the same again. Long story.
So how much does the average cancer patient need to know when first diagnosed? It’s easy for me to say “everything” now after that experience and three subsequent moments of diagnosis for head and neck cancer in the years since then.
Personally I believe this even when I take all factors into consideration because I think that “knowledge is power”. However I have met numerous people who have told me that everyone is different. Some people are not in denial as such, they know very well what’s going on, but they don’t want the gory details. And I can well understand that people need different levels of information as they progress along the cancer pathway.
My attitude to knowledge and information, though, is partly related to my main coping skill which is quite simply to expect the worst and hope for the best. I have to know the worst case scenario so I don’t get a nasty shock further down the line. I also believe that acceptance is a beautiful word. “Shit happens” in this life and people who accept that save themselves a world of grief.
And a disclaimer here. I have NO religious beliefs but was also fortunate to live next door to some practising Buddhist meditators for a couple of decades. To my shame I can’t sit still long enough to meditate but the basic philosophy of Buddhism, the “Four Noble Truths” have helped me through many a tight spot. This link is the simplest I could find.
I mean I don’t really live this but the knowledge it is there is strangely comforting and fits in with my idea of acceptance of life’s basic truths (while not passively accepting the status quo – no way.) I don’t have any insight into the concept of nirvana. Guess I just like this framework as a philosophy. There is also the beauty of mindfulness and compassion as core values.
Now the above worship of “acceptance” is all very well if you have not been fully tested but coming from that viewpoint, I believe that an “acceptant” method of coping with head and neck cancer is the best way to go. Break through the fear barrier early and learn as much as you can. Don’t let someone do it for you unless you are very sick. That is disempowering. When you are empowered, you will feel a little less fear. (According to my theory which is just that, my own coping strategy, and not for everyone.)
And since 1996 there has been a transformation in the way people acquire information. We had no Google back then but since the introduction of this massive search engine, there has been a move to democratise medicine.
Although some patients say they don’t want to know the details, it’s pretty hard to avoid them in this information soaked day and age. A lot of patients are very well-informed about the rarest conditions which their doctors struggle to understand.
An article in the Society of Participatory Medicine has this to say (referring to an article by ePatient Dave (Dave de Bronkart) :
“The power structure of the clinical relationship is inevitably altered,” the article says, “as constraints on patient knowledge are loosened by the internet, apps, and devices,” continuing that this undermines the “paradigm of patients as uninformed recipients of care based on a one-way flow of wisdom from providers.”
This is aligned with SPM’s description of patients shifting “from mere passengers to active drivers” of their care, with physicians welcoming the new behavior.
To achieve the vision of physicians welcoming e-patients, vs saying “stay off the internet,” “new standard must be to teach clinicians to recognize, welcome, and work with empowered ‘e-patients’ in the new model of participatory medicine.”
In this new model of healthcare, the patient is an active participant in their care. E-patients are engaged and empowered and get that way from researching their disease on the dreaded Google, joining other patients in internet groups and using apps that enable them to manage their care. The old hierarchy, the old paternalistic model of “ doctor knows best” is no more, according to this model.
We are by no means there yet though. Certainly not in my little corner of the world.
Another interesting nugget I turned up in my admittedly skimpy research for this piece is that female patients tend to want to know more, especially about psychosocial needs.
A lot of studies showed that most patients want to have more information than they are currently receiving.
“Referring and encouraging patients to use the growing number of cancer information centres may be an effective way of ensuring patients have access to information. This study reinforces the finding that most cancer patients wish to know more about a wide range of factors. It also demonstrates that information seeking continues from diagnosis to follow-up.”
In some cultures, the whole family or whanau would like to be better informed. A recent PHD thesis on Maori and Pacific families dealing with Starship Children’s Hospital found the following.
“Some of the Pacific men talked about how they had become experts in their child’s care over the extended periods they had been in the hospital. In the provision of healthcare the clinician is often driven by the medical culture. It has been noted that clinician-based views can be further prejudiced by their background values and social class. As well, training and teachings towards their qualifications create a sense of superiority and authority for them where the doctor holds all the power and knowledge.”
(The writer. Rachel Brown, quotes a paper by Putsch and Joyce, written way back in 1990, but still …)
Here is Rachel talking to Jesse Mulligan on RNZ last week.
To conclude, being informed, facing up to the truth about one’s cancer, accepting that life is tough for many of us but actively seeking to improve one’s care and health by participating actively in the cancer treatment process is a direction that has a lot to recommend it in my not so humble opinion.
Te ara pai, my Maori language phrase of the day meaning “the good or best way”.