During a Keynote speech at the virtual Annual Scientific Meeting (ASM) of the Canadian Pain Society (CPS), yesterday (1), Dr. Sean Mackey made a comment that resonated with me – from both my bioethics and chronic pain patient perspectives. It’s a comment that I’ve often heard from other pain patients, and a feeling that I’ve had many times myself.
What was this mystery comment? It was that:
Patients are not averages. They are individuals.” (2)
~ Dr. Sean Mackey, 29 Apr 2021, at the 2021 Annual Scientific Meeting of the Canadian Pain Society
In response, I tweeted/posted this, over on Twitter: “Potentially the most impactful statement at #CanadianPain21, by @DrSeanMackey. “Patients are not averages”, with reference to one of his patients with #CRPS. Yesssssssssss!!!!!!” So far almost 20 people have ‘liked’ my comment and about 10 have shared it, so it seems to have struck a chord with several others as well – among pain patients particularly but also with clinicians, researchers, and healthcare trainees.
Another comment which struck a chord with many pain patients was made in one of the concurrent or breakout sessions; during these periods there are several different presentations taking place simultaneously so you have to decide which one to attend during that timeframe.
Soon after this, while I was viewing another session, I saw over on Twitter that a couple of patient advocates had commented on the use of the term ‘pain catastrophizing’ in a concurrent presentation. That term has historically been used by healthcare professionals to indicate a situation in which a patient will constantly worry about their pain, even leading them to avoid an activity or situation out of concern or fear that it might trigger their pain.
Unfortunately, the same term has also been used disparagingly by healthcare professionals who don’t fully understand its intent. And this, of course, has had a trickle-down effect to patients who have been stigmatized or even traumatized by the use of this term.
Words matter, as we have seen repeatedly over the past decade and perhaps more frequently in the past few years. From a bioethics perspective, in healthcare, we must carefully consider the terms we use to describe patients – particularly those who are members of vulnerable or stigmatized populations.
Given the “historical treatment of women in medicine and how they continue to be underserved” (3) and the fact that women in pain often facie disbelief and even dismissal of their symptoms by clinicians, I’d argue that women in pain can be viewed as a ‘vulnerable population’ in this sense; the type of definition used, for example, within clinical research ethics.
Not to indicate or suggest any individual vulnerability of patients, but rather to claim improvements in care and treatment for a specific group. Vulnerable to being refused care, for endometriosis for example, due to a lack of clinically obvious physiological signs of illness:
medically unexplained symptoms are just another name for hysteria.
Women are more likely to be diagnosed with medically unexplained symptoms.
But there’s also this idea that women can’t be trusted to tell the truth about what’s happening in their body.
If a doctor sees a woman who has lots of symptoms and they can’t diagnose her immediately, they often just put it down to “it’s all in her mind.” (3)
The term ‘pain catastrophizing’ struck me as being so contentious, in fact, that I blogged about it back in 2018; after I’d heard it used for the first time at the 2018 ASM of the Canadian Pain Society here in Montreal.
Whenever I present to healthcare professionals or to medical students/trainees about my own experiences as a person living with chronic pain, I’m asked for my comments or input… So I specifically mention that the term ‘pain catastrophizing’ is being used out of context by clinicians who aren’t pain specialists and who don’t fully understand it’s meaning – that it’s being used against patients rather than with patients; the language is being used to hinder/hurt rather than to help.
But in some ways it’s been like talking to a wall. As a bioethics professional and as a chronic pain patient I understand that there has been a historical use of this term, that it has a background. But that’s also true of other language and terms which have fallen out of favour and been replaced over the years. I know that other healthcare professionals would also like to see this term eradicated; several reached out to me about this yesterday. These comments were in large part the catalyst for this – unplanned – blog post today.
There has been some progress since my 2018 blog post (although my post was not the reason!). Last year the Pain Research Forum published an article entitled: “Calls to Rename “Pain Catastrophizing” Backed by International Patient-Researcher Partnership” (4). This described a project (in which I participated!) led by Dr. Beth Darnell, a colleague of Dr. Mackey, to find an alternate name for this concept:
A study is underway to canvass opinions on replacements for the term “pain catastrophizing,” following concerns from some patients with intractable pain that the term is stigmatizing and poses a barrier to quality care.” (4)
Yet the term is still being used, and continues to stigmatize people who live with pain. There seems to be a growing community of healthcare professionals, with many of those I know in the area of physiotherapy, who have been saying for years – sometimes decades – that patients are individuals not averages, that pain therapy must be tailored to individuals more than is currently being done, and that the phrase ‘pain catastrophizing’ should be replaced as being more harmful than beneficial at this point.
I’m hoping that having had Dr. Mackey draw attention to a part of this issue, during a Keynote presentation, will lend some weight to something that patients have known for years. We’re not numbers, we’re individual people.
It will be fantastic if the comment by Dr. Mackey (that patients are individuals, rather than averages) garners some attention and discussion within the field of pain research, and this gave me an idea…
What if pain patients were to take this and ‘run with it’? What would happen if we started a new hashtag #NotAnAveragePainPatient? Well, let’s find out! This morning I’m going to float the idea, and see whether anyone else is interested… feel free to join in, over on Twitter or Instagram or whether you’re active on a social media that uses hashtags!
Let’s see what happens… if anything!
References
(1) Canadian Pain Society. 2021 Annual Scientific Meeting. Webpage. Undated. Accessed 25 Apr 2021:
https://www.canadianpainsociety.ca/event-4092807
(2) Sean Mackey. Mary Ellen Jeans Keynote (live virtual presentation): “Applying a multi-modal approach to understanding neuropathic pain: Studying small neurons in the era of big data”. Canadian Pain Society: 2021 (virtual) Annual Scientific Meeting. 29 Apr 2021.
(3) Wency Leung. Gabrielle Jackson challenges gender biases in health care with new book Pain and Prejudice. The Globe and Mail. 19 Mar 2021. Online: https://www.theglobeandmail.com/arts/books/article-gabrielle-jackson-challenges-gender-biases-in-health-care-with-new/
(4) Jayden O’Brien. Calls to Rename “Pain Catastrophizing” Backed by International Patient-Researcher Partnership”. Pain Research Forum. 17 Sep 2020. Online:
https://www.painresearchforum.org/news/150718-calls-rename-%E2%80%9Cpain-catastrophizing%E2%80%9D-backed-international-patient-researcher-partnership