The effects of failing to believe patients’ experience of chronic pain
Clarke, K.A., Iphofen, R. (2008) The effects of failing to believe patients’ experience of chronic pain. This is an extended version of the article published in Nursing Times; 104: 8, 30-31.
BACKGROUND: Some patients with chronic pain complain that they feel they are not believed.
AIM: To explore the effects of healthcare professionals not believing patients with pain.
METHOD: This study (n=8) adopted a multi-method approach involving a low-structured interview coupled with patients’ diaries and a follow-up interview. It is based on a hermeneutic analytical approach within a phenomenological framework.
RESULTS: The themes identified were: ‘I am in pain’; ‘I don’t believe you’; ‘When you feel that you are not genuine’; ‘Alienation’; and ‘Being believed’.
CONCLUSION: This study highlights that healthcare professionals can show they believe patients by simple means. These are: active listening; being non-judgemental; and accepting the pain experience as credible as recounted by patients, thus showing them that the relationship is based on caring and empathy.
Kathryn A. Clarke, MEd, RGN, ONC, Cert Ed, is lead nurse, clinical governance/practice development (surgery), Wrexham Maelor Hospital, North East Wales NHS Trust; Ron Iphofen, FBSCH, FBAMH, FRSA, PhD, MSc, BPhil, BA, Cert tHE, DHyp, is senior lecturer in sociology of health and senior postgraduate tutor, School of Health Sciences, Bangor University, North Wales.
McCaffery’s (1968) definition of pain – ‘Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does’ - is frequently quoted by nursing staff but it could be argued is not always put into practice. From my own experience as a clinical nurse specialist in pain management, I know patients often attended the pain clinic and expressed relief at having their chronic pain experience believed. Sometimes patients felt they were being believed for the first time. This observation led me to conduct a small study, exploring the effect of believing patients through the use of interviews and diaries.
Although the study’s primary aim initially was to explore the lived experience of chronic pain, the effect of not being believed and the issues around this became a central focus. The second aim of the study, therefore, was to examine the effect of not being believed by healthcare professionals.
The literature search was performed via Medline, the British Nursing Index, PsychINFO and CINAHL using the keywords ‘believe’, ‘confirmation’, ‘attitude’ and ‘listening to’, combined with ‘chronic pain’. On reading the abstracts, there were very few articles that actually examined the effect of believing patients with pain.
The studies that emerged are mainly qualitative. Many only marginally referred to the notion of the importance of believing patients who said they had chronic pain. This section of the literature review has been published previously (Clarke and Iphofen, 2005) and has been updated for this article.
Believing patients’ pain experience must start with accurate pain assessment (Waterhouse, 1996; Jacques, 1992). Pain assessment depends on the patient’s self-report of pain and therefore accurate assessment cannot be achieved unless practitioners believe patients. Jacques (1992) examined the assessment process and subsequent interactions between nurses and patients. She argued that nurses should approach each patient as an individual and with an open mind. The research concluded that accurate pain assessment depends on patients feeling that they are believed by healthcare professionals.
Waterhouse (1996) detailed poor post-operative pain management in a case study. However, the author said it was not mismanaged due to inadequate pain assessment, but solely because nurses did not believe the patient’s self-report of pain. The author concluded that pain relief should be a two-way process between nurses and patients, and that believing patients is the first step.
Most of the literature sourced was phenomenological. Owing to the subjective nature of individual experience, phenomenological research tends to be regarded as being difficult to generalise from, but can provide insightful and illuminative data.
When we updated the literature review in January 2008, we used the same search strategy. No further papers were identified by this method, but all online pain journals were searched and the abstract for each paper published in 2007 was read. This identified one further paper.
Frantsve and Kerns (2007) reviewed literature on chronic pain patients’ and healthcare providers’ interactions within a shared medical decision-making context. This depends on a ‘process of collaboration’ that incorporates joint decision-making and joint treatment planning. The authors concluded that patients felt doctors found it difficult to believe their pain reports when there was no apparent physiological cause. Preliminary findings were that patients seek understanding from doctors while struggling to legitimise their pain concerns.
This study adopted a multi-method approach: an extended, low-structured taped interview with each patient coupled with diaries, and a follow-up ‘debriefing’ interview. It is based on a hermeneutic analytical approach within a phenomenological framework. Ethical approval was given by the local research ethics committee.
The sample (n=8) was a purposive convenience sample, generated from those patients who had been attending a pain clinic in a district general hospital in North Wales for at least three years. Attendance ranged from 3-6 years with a mean of five years. The sample comprised four men and four women, aged 37-74 years. Confidentiality was preserved by using a coding system and pseudonyms for family and friends.
The bodily location of the chronic pain was varied. It included back pain (n=4), stump pain (n=1), bladder pain (n=1), abdominal pain (n=1) and foot pain (n=1). The location of the pain was not considered to be a factor in the inclusion criteria (see Box 1), as it was the experience of living with chronic pain that was to be explored.
Box 1. Inclusion criteria
Phenomenology was chosen as the underpinning methodology as it recognises the value of human experience. Phenomenology is defined as a science of essential being, although today it is accepted as a philosophical method (Mautner, 2000), which seeks to understand and place meaning on lived experience.
Two methods of obtaining data were identified as the most appropriate: interviews and diaries.
Selected patients were approached during a routine clinic appointment and asked if they were willing to participate. Written information was provided and written consent obtained if they agreed to take part. Eight initial interviews lasting 50-90 minutes were taped and transcribed verbatim. The second interview, also taped, lasted 15-30 minutes and was used as a closure interview. They were conducted either in hospital or in patients’ homes.
Patients were presented with a blank diary during the first interview. The only instruction they had was simply to record their everyday life, living with chronic pain, with as much detail and thought as they wished to share. The diaries were maintained for approximately four weeks and were collected from patients at the second interview.
The eight diaries all varied in length. All patients wrote a daily diary entry and the quality of data differed between patients and entries. All were transcribed exactly as they had been written.
Using both methods of data collection ensured that we gained a wealth of detail from each patient. If only one method had been used, the detail and depth of data would have been compromised (Clarke and Iphofen, 2006).
Six out of eight patients reported incidents indicating their pain account was not believed. This study uses data from those interviews and diaries for analysis. The two patients who did not have an issue with being believed both had a long-term physical disability. Perhaps it can be assumed that their accounts were always accepted as credible because they had a physical disability that made the pain appear more visible.
Through reading and re-reading of transcripts, a sense of the emotions associated with feeling disbelieved was revealed. In addition, the reasons why patients felt they were not believed were highlighted. The effect that feeling disbelieved has on patients can be far-reaching. The themes identified were labelled as: ‘I am in pain’; ‘I don’t believe you’; ‘When you feel that you are not genuine’; ‘Alienation’; and ‘Being believed’.
‘I am in pain’
Throughout the interviews and diaries, there were several reasons given for patients feeling they were not believed. The withholding of analgesia figured strongly in two transcripts, although in one instance it was an episode of acute-on-chronic pain that had warranted admission to hospital and had prompted the request for further analgesia:
‘I think it’s partly my own anxiety which is convincing myself that some of the nurses don’t believe that I’m that bad. That I’m just having the pain relief or the pethidine just for the sake of it. I associate the word pethidine with relief, I’ve never been tempted to look for opiates on the street at all. I really don’t think some of the nurses actually realise what the pain entails’ (interview).
Another patient recalled being prescribed pethidine for chronic bladder pain and then her GP shouted at her for taking more pethidine than had been prescribed.
‘I don’t believe you’
The attitudes of healthcare professionals towards patients experiencing chronic pain vary from showing empathy and understanding to being extremely disbelieving to the point of appearing rude. Practitioners who showed poor manners appeared to be unfriendly or actually told patients they did not believe their story, which further compounded the feeling of being disbelieved.
‘He (GP) was another one who blatantly said to me “I do not believe you are in pain” and he went to walk out the house – he wouldn’t give me pain relief’ (interview).
One patient recalled feeling that the nurses caring for him as an inpatient were unfriendly towards him:
‘12.45pm I have seen X from the pain team – we are sticking with the same oxy pain tablets. I suffer from anxiety – but I feel that some of the nurses are unfriendly’(diary).
‘When you feel that you are not genuine’
Patients expressed various emotions about feeling they were not believed. This ranged from anger, frustration and sadness to thoughts of suicide:
Patient: ‘They’re the only two who I think don’t really believe me.’
Interviewer: ‘And how does that make you feel?’
Patient: ‘Angry. And of course some of the doctors in A&E. It makes me feel angry, very angry, that they are not taking me seriously.’
Another patient expressed frustration at being made to feel that they were not genuine, while emphasising the effort needed to maintain normality:
‘It does bother me because I work very hard to cope with it and when people make you feel that you are not genuine it’s frustrating. It’s very frustrating because they will never know how much effort goes into putting on a smile and getting out of the house some days’ (interview).
Finally, one patient acknowledged how pain caused feelings of depression, but it was the feeling of not being believed that caused her to contemplate suicide:
‘The pain depresses me but the suicidal thoughts are more to do with people not believing the intensity of the pain, as if you’re trying to make it all up and that makes me feel that I’m wasting their time’ (interview).
Feeling disbelieved has a negative effect on patients. Apart from feelings of frustration and depression, it alienates patients from healthcare professionals, who are there to help them manage pain:
‘You think you’re going mad because you know there’s something wrong – why can’t they find something?’(interview).
Some patients felt they could no longer ask for help from practitioners because they were made to feel as if they were nuisances. Another felt that her pain caused the nursing staff additional work:
Patient: ‘He (husband) says “I know you’re in pain but you’re not letting staff know it” and I’m afraid I hold my hands [up] to that, I don’t like putting them out.’
Patient: (Silence) ‘I feel like I’m a burden.’
Patients recalled a variety of different practitioners whom they felt did not believe their chronic pain story - it is not restricted to a particular profession. Although this article focuses on patients’ experiences of not being believed, there are also examples of empathic and understanding relationships.
One patient explained the difficulties he experienced in expressing his pain:
‘I know that the girls (physiotherapists) here are great and they will help you all they can but …she thinks it’s all muscular you see, so she gave me these exercises, and I’m doing [them], doing all these exercises faithfully and yet I’m still getting worse not better. And how do you explain to people what pain is? Or the extent of the pain?’ (interview).
To be believed
Not all recollections are negative, however. One patient recalled her first appointment at the pain clinic where she had been referred for instruction in the use of a TENS machine:
‘And it was such a new experience, to be believed…’ (interview).
Another patient spoke with gratitude about a previous hospital admission:
‘I mean the nurses are lovely… and they said, “Oh you are in pain, we can see the pain in your face…,” they are very nice and understanding’ (interview).
Successful pain management depends on accurate assessment (Plaisance and Logan, 2006). It is not possible to provide appropriate treatment or management options if an accurate appraisal has not been undertaken. Pain assessment is often seen as the cornerstone of acute pain management and nurses are still taught McCaffery’s (1968) famed definition of pain.
This definition immediately acknowledges the subjectivity of the process and places the onus of the pain intensity in the patients’ domain. In other words, healthcare professionals are obliged to accept patients’ reports of pain because there is no objective way of determining whether it does or does not exist.
This, however, is the point at which pain assessment frequently fails. Healthcare professionals - through attitude or actions such as withholding analgesia - demonstrate that they are not accepting patients’ reports of pain.
Chronic pain has further assessment difficulties. Acute pain is often accompanied with physiological signs such as tachycardia, sweating, hypertension or tachypnoea, whereas chronic pain frequently has no signs or symptoms other than patients’ self-report. This further compounds the invisible nature of the chronic pain experience.
McCaffery and Beebe (1989) stated that practitioners have a professional responsibility to either believe patients’ report of pain or give them the benefit of the doubt. They said that each professional is entitled to their own opinion about the credibility of patients’ accounts but it is a professional responsibility to accept their report and to help patients by adopting a positive and responsive manner.
Under-administration of analgesia is frequently associated with poor pain assessment (Salmon and Manyande, 1996). Within this study the under-administration or withholding of analgesia is perceived by patients as evidence that healthcare professionals do not believe their pain account.
Waterhouse (1996) argued that pain relief should be a two-way process between nurses and patients and that believing patients is the initial step. This study (1996) made a clear link between believing patients and successful pain relief/management. It would appear that if patients are not believed, then assessment and the management that should follow will fail.
The attitudes that healthcare professionals display towards patients have a far-reaching effect. Those who meet healthcare professionals with caring, empathic and friendly attitudes will be remembered positively, while those who are rude, abrupt and do not appear to listen reinforce the negativity of the pain experience and support patients’ feelings that they are being disbelieved. Listening is an action that takes very little physical effort by practitioners and yet appears to be one of the skills most underused.
This study does not examine the attitudes of healthcare professionals per se and therefore cannot be taken as evidence that they are acting in any way that could be interpreted as uncaring or negligent. It suggests, however, that practitioners need to develop skills that show patients they are listening.
Feeling that they are not believed contributes to the negativity of patients’ pain experience by increasing negative emotions. Patients stated that these emotions were further compounded by healthcare professionals’ attitudes, which forced them to use strategies to develop credibility while preserving personal integrity. Werner and Malterud (2003) similarly found that women with chronic pain put a lot of effort into appearing to be credible patients. They concluded that the same effort would be better invested in managing pain.
Being made to feel that they are not genuine questions patients’ personal integrity. The effect of not appearing that they are speaking the truth can lead them to isolate themselves from situations or activities. Isolation can then exacerbate depression, which is frequently associated with chronic pain.
Depression can have devastating consequences for both patients and their families, and there are arguments about whether depression increases the pain experience or whether pain is the trigger for the onset of depression (Ho and Biskupiak, 2004). Depression can lead patients to consider suicide (Fisher et al, 2001), and in this study one patient directly attributed her thoughts of suicide to ‘people not believing the intensity of the pain’.
This indicates that practitioners need to explore ways in which they can confirm the chronic pain experience without reinforcing illness behaviour or disempowering patients.
A further negative effect of not being believed is the damage that it can cause to the patient/healthcare professional relationship. Patients begin to feel alienated from those who they expect to help them and this can cause them to seek alternative help from other sources, compounding the fruitless search for a cure. Watt-Watson (2002) considered this to be a trust issue rather than a belief issue. He stated that unrelieved pain is often the result of healthcare professionals not trusting patients’ pain experiences, although it could be argued that not trusting them is very similar to not believing them.
It is also important to consider why patients need to be believed. Personal integrity does appear to be a key feature. One patient in this study stated she did not want to be thought of as a ‘liar’, but it could be argued that it is more than this. The relationship between healthcare professional and patient is based on trust – patients trust practitioners to listen and respond to their needs and this is usually accepted practice. However, with practitioners continually failing to ‘cure’ the pain, people can be seen as ‘heart-sink’ patients from healthcare professionals’ perspectives.
Having different expectations may be the result of poor communication and lack of understanding on the part of either patients or practitioners. Expectations frequently determine outcome and it is necessary for patients to have the expectation that pain is not imaginary but is real and can be managed successfully.
If patients with chronic pain do not understand the ‘science’ behind it, then it is possible that they may never feel that their experience has been legitimised or confirmed. Equally, if healthcare professionals fail to understand the spiralling negative effects of chronic pain and the inherent need for patients to feel believed, then the relationship may be irretrievably damaged.
This article focuses on the negative effects of feeling that practitioners do not believe patients’ pain experience. It has not explored the effect on patients when they feel believed by healthcare professionals. It could be argued that the reverse happens when a patient feels believed - that trust is mutual, the patient/practitioner relationship is therapeutic, patients feel supported and respected and the effort put into trying to gain credibility can be used to manage pain more effectively. The positive effect of believing patients’ accounts has not previously been studied and would be an area for future research.
Implications for practice
The term ‘healthcare professional’ has been used to encompass all those who come into contact with patients with chronic pain. This includes nurses, doctors, physiotherapists and pharmacists. The following recommendations could be implemented by all these groups, although more research is needed to inform them.
We have illustrated the unseen nature of the chronic pain experience. The lack of clear explanations for continuing pain and lack of a definitive diagnosis or acceptable label also add to its invisible nature.
Healthcare professionals need to confirm the validity of the pain account by means that do not reinforce illness behaviour but empower patients to accept chronic pain and live with it rather than be ruled by it. This would enable patients to put their energy into developing appropriate coping strategies for pain management instead of convincing practitioners of the credibility of their experience.
This suggests that healthcare professionals and patients should enter into a therapeutic relationship based on shared medical decision-making, where practitioners actively engage patients in choosing the most appropriate treatment plan.
From a nursing perspective, this confirms the concept of holistic care. Although this could be seen as accepted principles of care, this study suggests that this is not currently happening. Patients in this study (and in the literature) consistently highlight that they feel that practitioners disbelieve their account of pain. It is hoped that, by adopting a truly holistic approach to pain assessment, beginning with listening and believing patients, we can then begin to develop an appropriate treatment plan for managing chronic pain.
The emphasis on accurate assessment as the foundation for successful management is an intrinsic principle of acute pain management. This needs to be extended to chronic pain assessment across all disciplines and settings and not restricted to pain clinics only. Although it can be a lengthy process, an accurate chronic pain assessment will provide healthcare professionals with insight into patients’ beliefs, values and concerns, helping to develop the therapeutic relationship.
The effect of believing patients’ account of a chronic pain experience cannot be underestimated. In this small study, patients expressed gratitude, relief and even surprise when they find their pain experiences are accepted at face value without having to ‘prove’ its existence.
This apparent need to feel that their pain story is credible appears to be unique to chronic pain patients. Having healthcare professionals believe the pain experience helps to alleviate its negativity by empowering patients to move forward with management, rather than endlessly seeking a cure.
This study does not provide an answer to chronic pain management per se - what it does show is that by simple means practitioners can help patients to manage pain and also retain a good quality of life. These simple means are: active listening; being non-judgemental; accepting the pain experience as credible as recounted by patients; and thus showing to patients that the relationship is based on caring and empathy. While these may be considered mundane and accepted practice, it is vitally important not to overlook the impact they have on patients with chronic pain.
Clarke, K., Iphofen, R. (2006) Issues in phenomenological nursing research: the combined use of pain diaries and interviewing. Nurse Researcher; 13: 3, 62-74.
Clarke, K., Iphofen, R. (2005) Believing the patient with chronic pain: a review of the literature. British Journal of Nursing; 14: 9, 490-493.
Fisher, B.J. et al (2001) Suicidal intent in patients with chronic pain. Pain; 89: 199-206.
Frantsve, L.M., Kerns, R. (2007) Patient-provider interactions in the management of chronic pain: current findings within the context of shared medical decision-making. Pain Medicine; 8: 1, 25-35.
Ho, M., Biskupiak, J. (2004) Would depression management relieve pain and improve function? Journal of Pain andPalliative Care Pharmacotherapy; 18: 4, 81-87.
Jacques, A. (1992) Do you believe I am in pain? Professional Nurse; 7: 4, 249-251.
Mautner, M. (2000) The Penguin Dictionary of Philosophy. Suffolk: Penguin.
McCaffery, M., Beebe, A. (1989) Pain Clinical Manual for Nursing Practice (UK edition). Aylesbury: Mosby.
McCaffery, M. (1968) Nursing Practice Theories Related to Cognition, Bodily Pain, and Man-Environment Interactions. Los Angeles: University of California at LA Students Store.
Plaisance, L., Logan, C. (2006) Nursing students’ knowledge and attitudes regarding pain. Pain Management Nursing; 7: 4, 167-175.
Salmon, P., Manyande, A. (1996) Good patients cope with their pain: post-operative analgesia and nurses’ perceptions of their patients’ pain. Pain; 68: 63-68.
Waterhouse, M. (1996) Why pain assessment must start with believing the patient. Nursing Times; 93: 38, 42.
Watt-Watson, P. (2002) Unrelieved pain: an ethical and epistemological analysis of distrust in patients. Canadian Journal of Nursing Research; 34: 2, 65-80.
Werner, A., Malterud, K. (2003) It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Social Science and Medicine; 57: 1409-1419.