A recent article stated, “It has long been established that phantom limb pain is a real physiological condition.” (here) This statement begs the question, “What limb pain is not real?” Yet many patients and many healthcare professionals still refer to a patient’s pain as being real, with a strong implication that to be real, there must be a demonstrable structural abnormality within the patient. The corollary, often unspoken but usually detected by the patient, is that pain that has no apparent biological cause is, in some way, unreal. As you would expect, this implication upsets a patient. Chronic non-malignant pain is common, and disabling chronic pain affects 20% of the population. Chronic pain is multifactorial and rarely has any specific structural cause. The absence of a particular structural reason suggests to many patients and not a few healthcare professionals that the pain is somehow less real, or at least of less significance. Predictably, many patients with chronic pain feel abandoned and devalued. This post explores some aspects of chronic non-malignant pain and suggests ways to improve rehabilitation for patients with it.
Pain – a response to harm
All living things respond to harm to their being, whether a single-celled amoeba or a human and the reaction limits ongoing harm. The response is rapid and substantial. It is automatic. In animals with nervous systems, the organism may show more complex coordinated actions to reduce and stop injury. Harmful stimuli also stimulate learning, such that the organism learns to avoid dangerous triggers.
Humans can experience psychological harm, such as losing a friend or loneliness. It seems possible that the experience of pain associated with damage to tissues has generalised to the equally important though less easily identified harm to the psyche. This hypothesis is a possible explanation for the pain associated with depression (here and here) and depression presenting with pain.
There is other evidence that psychological harm may be associated with chronic pain. Post-traumatic stress disorder is related to the experience of chronic pain (here). Moreover, patients with chronic pain are more likely to have many other symptoms commonly seen in people with psychological illness when compared to people with acute pain (here).
Association does not necessarily imply a causal link. Nevertheless, the absence of evidence that there is a specific structural cause, either because no one identifies a reason or because there is no association between the putative cause and pain, strengthens the supposition of a causal link.
In summary, I suggest that pain in humans arises not simply when tissue damage occurs but also when there is some damage to the person’s psychological state. I suggest that a mechanism that initially evolved to protect animal bodies against injury adapted as animals developed a psychological structure to protect animals against psychological injury. There is no reason to think pain arising from psychological damage is unique to humans.
The biomedical model’s influence.
“ There is no greater pain than to remember a happy time when one is in misery“. (Dante, Inferno)
Since humanity started writing, people have recognised the association between pain and psychological loss. Poems, religious texts, and secular texts all refer to the pain accompanying grief. Our daily language contains frequent references to heartache arising from emotions, and the language used by people after the loss of a loved one always incorporates pain. One cannot doubt that emotional upset and other psychological stressors cause people to experience pain.
In 1637, Rene Descartes (here) introduced the idea that the body and the soul were separate phenomena, a concept now referred to as Cartesian Dualism. This idea has influenced people since. For example, it is still powerful, justifying the formation of Mental Health services as a healthcare service quite different from healthcare for disease and trauma. It is notable that, in the UK and probably in most countries, services for patients with psychiatric diagnoses receive fewer resources compared with acute medical services.
The Scientific Revolution started in the mid-sixteenth century, and from about 1600 onwards, research into illness and health grew considerably. The previous dogma, based on physicians from Ancient Greece, was slowly replaced by facts derived from studies of bodies and diseased tissues. As knowledge accumulated and as methods and technologies advanced, the diagnosis became more accurate, prognosis more accurate and, eventually, the treatments became more effective.
The model of illness that evolved as scientific knowledge increased was the biomedical model. This model was very successful, but it also had weaknesses. (here) The greatest weakness was the unspoken but widely held belief that all illness and symptoms arose secondary to pathology, to an abnormal structure within the body. The biomedical model does not predict or explain symptoms arising through psychological processes.
Chronic low back pain is an exemplar condition of pain with no specific cause, one where the strong association between social stressors and the frequency of pain is well established. Despite the small proportion of patients with one particular treatable cause (5%-15%), official sources of medical information give great detail about specific reasons with little acknowledgement that psychosocial factors predominate. (here) Reviews and studies show that:
- Between 85% and 95% of people with chronic back pain do not have any specific structral cause. (here)
- Social factors, such as being in debt (here), and demographic factors are strongly associated with back pain. (here)
- Guidelines often make treatment recommentations unsupported by evidence. (here)
The dominant models used to analyse symptoms in the general population are the biomedical model of illness and the closely associated Cartesian Dualist model separating body from the mind. These models do not acknowledge non-structural causes of symptoms such as pain. The dominance of the biomedical model probably underlies the statement about the reality of phantom pain given in the first paragraph. It also underlies the implicit belief that chronic pain is somehow different from and of less significance than the pain arising from tissue damage.
The way forward:
listen to and learn from patients.
When discussing a diagnosis with a patient, many clinicians believe they have a duty to help the patient understand their analysis of the situation. This perceived duty often takes the form of telling the patient, teaching them, and dispelling the incorrect nature of their own beliefs. The clinician will come across as a person who knows the truth and knows that the patient’s interpretation is wrong and needs to be corrected. The clinician will often justify this by saying one should not perpetuate false beliefs.
“What is truth?”
Why is the doctor’s (or nurse’s or psychologist’s) opinion given more weight than the patient’s opinion or another doctor’s opinion? The answer given by the clinician will usually call on scientific analysis and scientific evidence while, at the same time, disvaluing the experience and interpretation of the patient. For example, one might say, “There is no good evidence that chronic low back pain comes from a problem in the back. Most people your age have degeneration in spinal discs, but most do not have chronic low back pain.” The patient’s experience and reasoning are discounted and dismissed.
Put another way, in a clinical encounter, each party – doctor and patient – has their internal model of illness and, starting from the same facts, each will arrive at their explanation for the disease. The doctor is most likely to use a biomedical model, but the doctor will usually recognise the influence of psychosocial factors to a greater or less extent. The patient may also use a variation of the biomedical model or have some unspecified other models. The two explanations will likely have areas of overlap and similarity, but it is unlikely the two explanations will be identical.
This discrepancy between a patient’s explanation and a clinician’s explanation is expected, though the degree of disparity will vary. The difference will likely be more significant when the clinician considers that most symptoms are not secondary to tissue damage but arise from psychosocial factors. A recent article discussing patient beliefs about symptoms attributed to vaccination (here) states that “it is important for the therapeutic process to find an explanatory model that satisfies both the clinician and the patient.“
In other words, the expert, the clinician approached for an answer, will naturally believe their explanation to be better. The clinician should also recognise that their description may not be correct and that alternative reasons exist. The clinician’s responsibility is to explore, with the patient as an equal, the nature of the two explanations and the differences between them, negotiating an agreed description for making decisions. The clinician should not try to educate the patient into accepting their answer.
Chronic non-malignant pain.
Evidence from qualitative research.
Qualitative research can reveal the patient’s perspective. The clinician will hear the patient’s experiences and interpretations in an individual case. However, it is easier for the clinician to elicit and understand the patient’s descriptions if they know what to look for. One approach is ethnography.
Ethnography has been described thus: “Ethnography is a qualitative research method in which a researcher—an ethnographer—studies a particular social/cultural group with the aim to better understand it. Ethnography is both a process (e.g., one does ethnography) and a product (e.g., one writes an ethnography). In doing ethnography, an ethnographer actively participates in the group in order to gain an insider’s perspective of the group and to have experiences similar to the group members. In writing ethnography, an ethnographer creates an account of the group based on this participation, interviews with group members, and an analysis of group documents and artifacts. ” (here)
Toye and her colleagues recently analysed data from 195 qualitative reports from 170 studies that collected data from at least 3,589 people living with chronic pain. (here) This study’s goal was to “understand what it means for a person with chronic pain to heal.” They identified ten themes,
- four themes describing the experience of patients living with chronic pain, and
- six themes describing what it means to be recovering from the pain.
Four experiences of chronic pain
My pain is invalid.
The patient feels that the absence of any specific tissue damage as the cause means that the pain is not real. More importantly, other people, including professionals and friends and family, will consider the pain unreal. The patient is likely to formulate their situation using the biomedical model of illness. They will use logic such as, “I experience pain; all symptoms arise from disease (i.e. tissue damage); I do not have tissue damage; therefore, my experience has no cause and must be ‘imagined'”.
I am invalid.
This follows on from the first theme. The patient believes, possibly accurately, that their reports are not accepted as accurate, that others think that the patient does not experience pain. Closely associated with this, the patient feels that they are not treated with respect but are judged by others and treated without dignity.
I am split as a person.
The patient experiences tensions within themselves. They feel that their body is somehow fighting against them as a person, that the pain generated by the body has subverted the person they once were. To counter this, they often put on a brave face and feel that their appearance and behaviours belie their actual feelings. Despite appearances, they will often feel ashamed, lacking in self-esteem and worthless and guilty.
I am split from the world.
The patient feels that they are no longer involved in external, worldly activities; they feel like an observer who cannot influence the world and that they can only live for the moment. Other associated feelings include being disenfranchised, not being taken seriously by others, and feeling that there is no future, nothing that can be done (by others) to help.
Six experiences of recovery
The six themes are the mirror images of the first four themes. Four are explicitly the opposite, and the last two are the opposite of sub-themes identified within the first four themes arising from patient experience.
My pain is valid.
This feeling arises when the patient understands their pain in a meaningful and acceptable way to them. These secondary consequences include a reduction in fear and anxiety, an increased feeling of control over the pain, and restitution of order from chaos.
I am valid.
The patient feels that others accept their account without judging and that people admit that they experience pain. They think that others accept their suffering.
I am a whole person.
This theme encompasses a range of sub-themes that arise from accepting living with the pain. The patient no longer sees life as a battle between me and my body. They feel they have grown and changed and that others value them as a person.
I am a part of the world.
This theme concerns returning to active social participation with others in the community. One significant part of this is engaging positively with other people who also have chronic pain. A second is a perception that healthcare professionals now treat the patient with kindness and compassion. A third part is a general feeling of safety and support by a caring society.
I am empowered.
The reversal of the negative experiences described in the first four themes above is associated with and may lead to a feeling of empowerment. The patient feels equal with healthcare professionals and thinks they have more power to exercise autonomy and control. Patients often feel able to develop their own strategies for controlling their pain.
I have a future.
Last, the patient moves from a position of hopelessness, unable to envision any future and see any purpose in their life, to one where there is the hope of a better life. They focus more on what they can do and what is personally meaningful, and they will consider possible activities that once they dismissed as impossible. They also no longer see acceptance that the pain may always be present as defeat or giving up. They accept that they are on a journey towards a better life, albeit a journey that will fluctuate in its success and may not include complete recovery to a permanently pain-free state.
What should a clinician do?
The evidence and analysis put forward by Toye and colleagues suggest some concrete actions that may lead to a better outcome.
Negotiate a shared understanding.
Many of the negative experiences of a patient arise from different interpretations of the patient’s account of their illness. Clinicians need to elicit from the patient their understanding and explanation of their pain. Rehabilitation experts should do this as a routine part of their patient-centred assessment. (here) However, the clinician must resist the temptation to educate the patient about the superiority of the clinician’s formulation. Instead, the clinician may give their formulation, emphasising that it is neither correct nor better; it is simply an alternative.
Instead, the clinician should discuss the significant differences between the two formulations with the patient. This discussion should be between equals, constructive, and should reach an explanation the clinician and the patient accept.
The clinician then needs to make public their formulation – not to the world in general, but in any letters or other documents so that other healthcare staff are more likely to use the same formulation. Clinicians should not underestimate the power of their endorsement on the attitude of others. Endorsing an agreed formulation will help reverse feelings of invalidity and attitudes of disrespect.
Aim for improvement,
NOT a cure.
Complete cure is often not achievable in much healthcare and is impossible in most chronic conditions. The findings of the meta-ethnographic study emphasise the importance of helping the patient accept that investigation will not find any unique, specific cause. The goal of management is to improve, and it is not to get better, meaning that the patient is no longer having pain.
Understanding that the goal is not to achieve any specified, fixed target has several benefits. It removes the possibility of failure, both from the healthcare professionals and the patient. Instead, it more-or-less builds in success because success is any change for the better, which is much easier to achieve. It also reduces the emphasis upon pain and enables many other areas of a patient’s experience and activities to be the centre of attention. The patient can focus on positive achievement (e.g. seeing more people) rather than the more negative goal of less pain.
Therefore, the clinician should start discussing with the patient what activities or social roles are relevant to the patient, negotiating one or two that the patient can achieve soon. At the same time, the clinician should pay little attention to pain, both in terms of investigation and specific treatment. They should negotiate a plan to reduce and, usually, withdraw any medications or other therapies exclusively taken to reduce pain. Achieving a reduction in treatment can be considered an achievement.
the third key change.
The third fundamental change is for the clinician to relinquish their position as the expert who will tell the patient what is wrong and what to do to get better and, instead, become a knowledgeable person who the patient can discuss their proposed actions, asking for advice. As part of this, the patient should ask for appointments; the clinician should not give an appointment because the very act of arranging an appointment suggests an expectation by the clinician that they can or will do something.
This approach helps the patient to re-establish control over their illness, and it helps improve self-esteem. It ensures that they feel more respected.
When transferring power and responsibility, the patient must not consider the reason for this to be there is nothing more I can do, especially when the patient does not accept all my advice or do what I say. It is essential for the patient actively to take on their management. Thus, the transfer should be gradual, with the patient slowly taking more control. It should not be seen as well you can take control of your own management now and we will enrol you in a self-management programme. The clinician could phrase it as well, you succeeded in that. Would you like to learn some more about how to succeed? If so, I can refer you to this course.
Chronic non-malignant pain is a challenge to all parties – the patient, their family and friends, the clinical professional, and healthcare systems. All parties need to review their existing beliefs, attitudes, and expectations critically, and they need to recognise that uncertainty will always be present. Clinicians and healthcare systems need to abandon fixed and inflexible processes and centre all decisions and plans on the individual patient. Three principles will help. The patient’s account of their illness is the only valid account. The goal of complete control or cure of the pain and associated symptoms must not be the goal; it is to improve the patient’s life in ways that matter to them. Thirdly, the patient should be encouraged and assisted in taking control over their management but must do so gradually and willingly.