Two words that often go together: Pain, Suffering. Pain we can define according to the IASP definition –
An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage (Read the note below as well).
Suffering? What is that?
My favourite definition comes from Eric Cassell (Emeritus Professor at Cornell University). He makes the point that bodies don’t suffer, only people do, saying that “in all the situations in which suffering comes about the meaning of the occurrence to the person and the person’s perception of the future are crucial” (Cassell, 2011). The point he makes is that while bodies may have nociception, and neuroendocrine responses to emotional stimuli, bodies do not have a sense of the future, and bodies don’t know meanings, only people do. Illness doesn’t come from disease, it comes from a process that “unfolds over time” as the sickness and how it is lived show the individual character of the person who has them.
So, then, what is suffering? It is the response to a threat to self-integrity. This means the way we suffer is always personal to what matters most to us.
Cassell’s paper outlines why some of our healthcare efforts result in more suffering than less. He argues that health professionals want to alleviate suffering, but need some sort of measurement tool to detail whether their efforts have met with success. But being better, or worse, is “ultimately defined by the patients themselves”, and when sickness is defined, it should reflect what it means to be well in the patient’s terms (Cassell, 2011, p. 12).
Now here’s where it gets interesting. Because health professionals make assumptions about what it is that is causing the suffering in their patients. And in many cases, the assumption in pain management is that it’s the pain that is causing the suffering. If that were the case, people with low levels of pain wouldn’t seek help, and people with extreme pain would be seeking treatment. Is that the case? Well, not exactly, actually. People seek treatment because their pain is beginning to interfere with what they want to do (Ferriera, Machado, Latimer, Maher, Ferriera & Smeets, 2010). It’s the meaning of the pain that drives people to look for help. So, we have people with arm pain they’ve had for months, but they seek treatment only when there is a change at work because now they can’t keep up. People with low back pain who only look for help because it’s winter now and they can’t stand on the rugby field to watch their son playing.
The problem with assuming that having pain is equal to suffering is that there is an expectation that treating the pain intensity will automatically alleviate the suffering.
Let’s think about that for a moment: Jonathan has just had his first episode of angina. He came into hospital for it to be checked out, and has been given a clean bill of health but given tablets to take if the pain returns. He’s advised “this is a bit of a warning”, and told to go on his way but perhaps lose a little weight and do some more exercise. Jonathan hears “next time you have this it could be the Big One”, and because his pain occurs when he’s doing exercise, he doesn’t exercise very often. He takes his angina pills as soon as he begins to feel a little tightness in his chest. And he seems to be having this quite often, especially when he starts thinking about how he nearly had a heart attack. He has no pain – but he is suffering.
Or another example: Frances has had a series of blocks to locate the source of her pain in her lower back. They’ve found it, but the results of the radiofrequency neurotomy are not as good as the blocks were. She has a lot less pain, but she’s afraid that if she moves too much, she might do more damage to her back and this will bring her pain on, so she’s playing it safe and hasn’t returned to her netball. She misses the social atmosphere of netball and, to be honest, she’s feeling down in the dumps, and because she’s not exercising she’s gaining weight. She’s suffering although her pain has been reduced.
I’ll conclude with these thoughts from Cassell (2011). I think this paragraph is profound –
A human being in all its facets interacts simultaneously outwardly into the world and with others, as well as inwardly in emotions, thoughts, and the body, and these are generally consistent and harmoniously accordant. By contrast, suffering variously destroys the coherence, cohesiveness, and consistency of the whole. The person’s experience of this is of no longer being in accord and “whole,” but rather of “being in pieces,” of not being able to “hold themselves together.” It is in this sense that suffering threatens or destroys the integrity or intactness of the person.
He points out that some practitioners think almost two kinds of knowledge exist: medical science about the body and disease, and knowledge of the person. And that these only join together at the bedside. He says “The problem is not two kinds of knowledge in medicine, the problem is that the goals of practice are almost universally divided – treat the disease and care of the patient focusing on the personal asepcts of the illness – as though these were two separate elements to be brought together. That is not correct. There is only one goal: the well-being of the whole person who is the patient.”
And this is The Most Important Thing Ever:
The key to relief of suffering is a focus on function. What do patients have when they have a sense of well-being? They believe they can accomplish their purposes and goals. Put another way, they can do the things they need and want to do to live their lives the way they want to (Cassell, 2011, p. 16).
Note: The inability to communicate verbally does not negate the possibility that an individual is experiencing pain and is in need of appropriate pain-relieving treatment. Pain is always subjective. Each individual learns the application of the word through experiences related to injury in early life. Biologists recognize that those stimuli which cause pain are liable to damage tissue. Accordingly, pain is that experience we associate with actual or potential tissue damage. It is unquestionably a sensation in a part or parts of the body, but it is also always unpleasant and therefore also an emotional experience. Experiences which resemble pain but are not unpleasant, e.g., pricking, should not be called pain. Unpleasant abnormal experiences (dysesthesias) may also be pain but are not necessarily so because, subjectively, they may not have the usual sensory qualities of pain. Many people report pain in the absence of tissue damage or any likely pathophysiological cause; usually this happens for psychological reasons. There is usually no way to distinguish their experience from that due to tissue damage if we take the subjective report. If they regard their experience as pain, and if they report it in the same ways as pain caused by tissue damage, it should be accepted as pain. This definition avoids tying pain to the stimulus. Activity induced in the nociceptor and nociceptive pathways by a noxious stimulus is not pain, which is always a psychological state, even though we may well appreciate that pain most often has a proximate physical cause. [italics my own]
Cassell, Eric J. (2011). Suffering, whole person care, and the goals of medicine. In T. A. E. Hutchinson (Ed.), Whole person care: A new paradigm for the 21st century (pp. 9-22). New York, NY: Springer. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=psyc7&AN=2011-24010-002. doi: 10.1007/978-1-4419-9440-0
Ferreira, Manuela L., Machado, Gustavo, Latimer, Jane, Maher, Christopher, Ferreira, Paulo H., & Smeets, Rob J. (2010). Factors defining care-seeking in low back pain–A meta-analysis of population based surveys. European Journal of Pain, 14(7), e1-e7. doi: http://dx.doi.org/10.1016/j.ejpain.2009.11.005
Reblogged this on videnomsmerter and commented:
Medfører smerte lidelse – eller opstår lidelse når vi ikke kan leve livet som vi ønsker det? Det forsøger dette indlæg, som jeg re-blogger, at se nærmere på.
Very nice indeed. Placebo-professor (does that even make sense?) Fabrizio Benedetti describes a similar thing in his book, The Patient’s Brain.
Yes! And it’s so often true that treatment is about getting rid of the pain, but this means losing more of “self” to have the treatment. Treatment can interfere with “who I am” and “what I need to do”. I wonder who is more scared of pain – the person experiencing it, or some of the treatment providers?
“But being better, or worse, is “ultimately defined by the patients themselves”, and when sickness is defined, it should reflect what it means to be well in the patient’s terms (Cassell, 2011, p. 12).”
This quotation reminds me of Margo McCaffery’s famous definition of pain, “Pain is what the person says it is and exists whenever he or she says it does” (McCaffery, 1968). Sincerity establishes the truth of what the patient says. Truth and truthfulness coincide. Cassell’s insight is under threat from contemporary neuroscientific reductionism involving calls from some researchers and government agencies to replace patient self-report in pain medicine with neuroimaging data.
McCaffery, M. (1968). Nursing practice theories related to cognition, bodily pain, and man-environment interactions. Los Angeles: UCLA Students Store.
Exactly! Imaging only provides evidence of blood flowing to and from various areas of the brain. It says nothing about the meaning of the experience to the person – and we deal with people, not just their brains or nervous systems or bits of body part.