There was a potentially controversial opinion piece published in a medical journal this week: How Chronic Pain Treatment Falls Short of Patient-Centered Care.(1) The title is somewhat misleading as it’s about neither treatment options nor specific patient outcomes. It’s an article regarding attitudes, or perspectives, on chronic pain.
The author is a professor of Psychiatry and Behavioral Sciences, as well as being an adjunct professor of both Anesthesiology and Pain Medicine and Bioethics and Humanities. If you feel that patient-centered chronic pain care is focused too much on a consumer approach to healthcare, or that the practice of pain medicine has become too concerned with obtaining good patient ratings, you’ll probably enjoy some portions of this article.
My field is bioethics, so this piece was of interest to me on that front. As I’m now a chronic pain patient myself, I feel that certain sections of this article might cause some misunderstanding or confusion from a patient perspective. This blog isn’t meant to be a book/article review site, but every now and then I read an article that I think merits some comment. This is one of them!
Dr. Sullivan discussed the importance of “helping a patient live his or her life as fully as possible. Specifically, clinicians need to promote the patient’s capacity for personally meaningful action.(1) To do this, of course, healthcare professionals must view each patient holistically; as a whole person.
This is a concept on which many of us in bioethics have been focusing for very long time now, as have many within the field of medicine. Unfortunately, our healthcare systems don’t often allow clinicians adequate time for this.
For the best outcomes, and for a patient to feel comfortable in a treatment relationship, it’s important for them to feel that their voice is being heard. That’s also necessary for a physician – or other pain care professional – to be able to understand what’s important to that particular patient. What the goals and dreams of that patient are, despite their chronic pain.
In my view, the best treatment plans take into account both the patient’s short- and long-term objectives or plans. Otherwise the patient may feel that they’re being recommended a ‘cookie-cutter’ treatment plan; this may lead to them not feel invested, or motivated, to follow it. They won’t, to use one of my favourite expressions: “Feel the why”.
Dr. Sullivan writes that the correct approach to patient-centered health is to focus on “the capacity for meaningful action”(1) on the patient’s part. This meshes with my viewpoint, that the patient’s own goals and plans should be a fundamental aspect of their treatment plan. And that any assessments should include not only the patient’s pain levels, but also their participation in meaningful activities and pursuits:
This is where engagement with the patient who has chronic pain must begin: with his passions, with those things worth doing for their own sake, with the things he loves in life.
Reviving these goals is the first step toward reviving the patient. Restoring the capacity for meaningful action is what transforms someone with chronic pain from a patient back into a person.
Pain reduction may be the first step, the last step, or not involved in this process.”(1)
I actually used that term, ‘patient to person’ as the title of one of my blog posts back in 2016; after I went out on my bicycle for the first time, after my diagnosis with a rare neuro-inflammatory disease that causes high-level chronic neuropathic pain.
So at this point, you’re likely wondering why I feel this opinion piece is potential controversial. Why did I think it might cause some misunderstanding, or confusion, for patients? And here we come to the crux of my concerns.
Dr. Sullivan states that many pain specialists are making a serious “error about the goals of chronic pain care. Our foremost duty to patients with chronic pain is not to reduce their pain intensity, but to improve their health.”(1) He’s arguing that pain reduction should not be the primary goal of treatment.
It’s not always possible to reduce pain levels, so I concur that it’s not realistic for a clinician to set this as the only acceptable outcome. That said, there’s no justifiable reason for a clinician not to try to reduce a patient’s pain level; which is the position for which he seems to be advocating.
It’s clear that Dr. Sullivan is making these statements within the backdrop of what he refers to as an opioid epidemic, so we can read between the lines that opioid prescribing is to a great extent the underlying cause of his concerns.
While I agree with his statement that “Simply because a patient prefers an increase in his opioid dose to reduce his pain level does not make this the right treatment choice”(1), I feel that he swings too far in the opposite direction:
It is surely a good thing to reduce pain, but it is neither the only good thing nor the most important thing, even if patients desire it.
The primary duty of health care professionals is not to satisfy patient preferences (despite perverse incentive payment schemes that instantiate this idea), but to promote patients’ health.”(1)
Dr. Sullivan seems to be advocating that the reduction of pain levels should no longer be one the primary goal for chronic pain. Given that there are so many types of chronic pain, and so many options for pain reduction, this statement might well be upsetting to a large proportion of pain patients.
To take my own case of Complex Regional Pain Syndrome (CRPS, also still called Reflex Sympathetic Dystrophy or RSD) as an example, my treatment so far – for chronic neuropathic pain – have included a number of non-opioid approaches:
- Ten or so different oral medications
- One topical medication
- Six stellate ganglion blocks, immediately after diagnosis; to halt the spread of the disease
- Two Bier blocks, or IV blocks, with physiotherapy
- Several axillary brachial plexus blocks
These treatments were administered or prescribed in hospital, within Canada’s taxpayer-funded public health insurance systems. Each of them was considered to be medically necessary, otherwise they would simply not have been provided in government-operated hospitals.
These treatments were provided specifically with the reduction of chronic pain as the primary goal, the most recent by my multi-disciplinary pain management unit which is housed within a large university hospital centre.
If I understood Dr. Sullivan’s position to be an argument that attempting to relieve my chronic neuropathic pain should not have been the primary goal of my medical team, I would likely be an irate patient.
It seems, however, that he’s arguing only that – in some cases, for certain patients – there could be considerations greater than the relief of pain. At least I sincerely hope that’s what he’s saying.
Now let’s go back to the longest quote that I’ve include from this article, above, in light of the comments I’ve just made. This is the other serious point of contention that struck me as I read this opinion piece:
Restoring the capacity for meaningful action is what transforms someone with chronic pain from a patient back into a person.”(1)
From both my bioethics and chronic pain patient perspectives, I find this comment to be somewhat insulting. Dr. Sullivan seems to equate being in chronic pain with having more or less given up on life, on activities and purpose; to a lack of any meaningful action being taken by the patient.
Despite my neuro-inflammatory disease, I’ve continued to work full-time, to socialize, and to fully participate in life. It is insulting to have a physician make the assumption that, because I live with severe chronic pain, I lack the “capacity for meaningful action”.(1)
Yes, I’ve had to reduce some of the activities I used to do – and even to give some of them up altogether. I love cycling, so I’ve adapted to riding my bike using only one hand. Although I can no longer manage individual rides of up to 100 km (62 miles), I aim for 50 km (31 mile) rides; still much more cycling than many people I know who aren’t living with chronic pain!
I haven’t lost my capacity for meaningful action, even though I’ve had to give up cross-country skiing, embroidery, knitting, and some other creative pursuits.
For Dr. Sullivan to assume that I need a clinician to restore my “capacity for meaningful action”(1) is to assume that – as a patient – I was incapable of doing this myself.
This attitude harks back to the paternalist views in medicine, in which there was no shared decision-making in healthcare; back to a time when a patient was supposed to do whatever a physician recommended – often without even so much as a question from the patient.
In 2017, that attitude should no longer be accepted within the realms of healthcare and medicine. And it’s this, above all else, that I find so controversial about this opinion piece; a return to doctor-knows-best paternalism and the failure to acknowledge patients as being fully autonomous.
Thanks for reading and, as always, feel free to reach out via social media; I’ve had to disable the comments feature on the blog due to high volumes of completely inappropriate spam.
There’s also a comment section on the NEJM website; see the link below.
Reference:
Sullivan, Mark D., MD, PhD. How Chronic Pain Treatment Falls Short of Patient-Centered Care. NEJM Catalyst, ePub 18 May 2017. Accessed 19 May 2017. Web:
https://catalyst.nejm.org/chronic-pain-care-falls-short/