Shiu-Ling Briggs, BSc (Hons), RGN, Dip Nurs.
Tissue Viability Clinical Nurse Specialist, Royal Surrey County Hospital, Guildford
‘Pain is whatever the patient says it is, but sometimes the patient doesn’t say’, states the consensus document drawn up by the World Union of Wound Healing Societies (WUWHS, 2004). The experience of pain is commonly cited as an issue in the management of leg ulcers and one that can have a significant effect on a patient’s quality of life.
Studies centred on chronic leg ulceration often find that health-related quality-of-life issues are a major concern for patients (Lindholm et al, 1993; Flett et al, 1994; Franks and Moffatt, 1998; Phillips et al, 1994) - and these findings are generally well known to health professionals. However, there have been limited changes in clinical practice - anecdotal evidence suggests that assessment of patients with leg ulcers remains primarily focused on the ulcer(s) rather than the patient.
Organisations such as the WUWHS and the European Wound Management Association (WUWHS, 2004; EWMA, 2002) have issued detailed documents to remind health professionals that a thorough pain assessment is part of good wound management practice.
This article focuses on one patient’s experience of leg ulcers and explores the way her experience of pain affected concordance with treatment.
A case of chronic leg ulceration
Marie Bolton had experienced repeated episodes of leg ulcers over a period of five years before she was seen in the leg ulcer clinic. She was referred for two reasons: her leg ulcers were failing to heal and she was not adhering to treatment. The clinic staff were informed that she had regularly discontinued dressing or compression therapy regimens - bandages and hosiery - initiated by nursing and medical staff.
On Ms Bolton’s first visit to the clinic, a nurse recorded a detailed nursing history of her leg ulceration prior to referral and undertook a full assessment, including Doppler ultrasound, on the patient. Two venous ulcers just below her left lateral ankle were diagnosed and a treatment plan was devised and agreed with the patient.
During the assessment Ms Bolton reported that pain was a major issue and she appeared quite anxious about the possibility of her pain becoming worse with the proposed treatment. Her previous treatment had resulted in excessive exudate being trapped under the dressing, causing maceration and excoriation to the periulcer skin. She repeatedly reported severe pain to the nurses and the GP about the unrelieved pain and had been told to take her prescribed analgesia at regular intervals. She also had frequent episodes of wound infection which again caused the pain to be much worse.
Compression bandaging was the therapy of choice, and the patient and the nurse reached a clear understanding that Ms Bolton would accept the necessity of compression therapy.At the same time, her pain control would be reviewed and adjusted in order to improve pain relief.
Agreement was reached that she would leave the bandages in situ in between attending the clinic and/or being visited by community nurses at home. It was also agreed that if the compression bandages began to cause excessive discomfort and pain that Ms Bolton would contact the clinic immediately - she would be seen at the earliest time available at either the clinic or her home to review the situation. This was to provide support and supervision during the initial period of treatment. With this level of support, we found that the patient was able to tolerate the compression therapy, while the pain was controlled with regular doses of paracetamol (500mg x 2 four times a day). This was discontinued after the first two weeks of treatment as the pain had reduced dramatically as a consequence of a reduction in the amount of exudate.
Ten weeks after Ms Bolton began attending the clinic, her leg ulcers had healed.
As the ulcers began to heal there was a noticeable change in Ms Bolton. She became happier and began to look younger. She wanted to improve her physical fitness, so she joined a weekly exercise class. The change was so striking that it aroused my interest, leading me to explore Ms Bolton’s experience during the period when her leg ulceration was active.
I interviewed at her home one month after the leg ulcers had healed. This provided an account of her experience of living with active leg ulceration for five years and offered an insight into the relationship between quality of life, pain, communication between health-care professionals and patient concordance with treatment.
The impact of leg ulcers
The interview illustrates how greatly the leg ulcers had affected Ms Bolton’s daily life. It was clear that chronic leg ulceration had had an all-encompassing impact on her quality of life. It touched all aspects of daily living, and the effects ranged from sleep disturbance, reduced mobility, pain, altered body image, reduced level of independence, and a feeling of anger and resentment regarding communication between herself and health-care professionals (Box 1).
Pain and concordance
The true extent of any patient’s pain experience is often subsumed by the focus on the wound (Hallett et al, 2000). In the case of Ms Bolton, it is likely that her pain she was experiencing had not been explored adequately before her referral to the leg ulcer clinic.
Ms Bolton’s non-concordance was the result of two conflicting actions: while the health-care professionals were giving treatment based on their expert knowledge, according to what they interpreted as the aetiology of the leg ulcers, the patient was instigating actions that she felt necessary to alleviate her pain and discomfort. There was an obvious gap in communication between patient and professionals - Ms Bolton’s own words (Box 1) illustrate the nature and extent of the problem. Unfortunately, the actions she instigated contravened the professional advice.
The failure of satisfactory pain relief appears to been the main motivation for Ms Bolton’s non-concordance - she wanted to avoid pain and, as a result, she did not follow the prescribed treatment. Without concordance with treatment, it is not possible to achieve therapeutic goals, resulting in poorer patient outcomes (Finfgeld et al, 2003). While Ms Bolton understood the purpose and necessity of the prescribed treatment, the pain she was enduring was so distressing that she felt compelled to instigate actions contrary to the advice of the health professionals. The impact of the psychological distress arising from the pain directly led to her non-concordance.
Studies that investigated patient concordance with treatment (Kyngas et al, 1996; Wainwright and Gould, 1997) found that the success of a treatment regimen depended on a patient’s willingness to comply. Elliott and Turrell (1996) and Myers and Macdonald (1996) advocated patient empowerment - they proposed viewing patients and health professionals as equal partners in planning care.
The implication of their proposal is to give patients an equal share of the decision-making process as the health professionals. However, Ms Bolton felt she had no part in decision-making on the choice of her treatment. This led to her non-concordance and being labelled by health professionals as a ‘difficult’ and ‘non-compliant’ patient.
Further analysis of information relating to Ms Bolton’s experience of pain demonstrates that her pain and discomfort were poorly controlled. Box 2 lists factors that had the effect of exacerbating the pain she experienced.
Dimensions of pain
Paracetamol had initially been administered to relieve Ms Bolton’s ulcer pain. However, as she explained, at times it failed to provide satisfactory pain relief, such as when the ulcer was not healing and especially when exudate was a significant problem. This may have been partly due to the fact that before she came to the leg ulcer clinic only the physiological aspect of her ulcer pain had been addressed.
Clinicians acknowledge that if they rely solely on the physiological model, satisfactory pain relief is difficult (and sometimes impossible) to achieve (McCaffrey et al, 2003). Melzack and Wall (1965) put forward the gate-control theory of pain, which incorporates the affective-motivational as well as the sensory-discriminative components of pain. This theory supposes that the nature and severity of pain are the combined consequence of affective, cognitive domains, as well as physiological processes.
Stressful events can also perpetuate pain or reduce an individual’s capacity to tolerate it (Leavitt et al, 1980; Feuerstein, 1985). Keefe and Gil (1986) proposed the idea of a ‘pain- anxiety-tension’ cycle to account for the chain of events whereby pain provokes anxiety, in turn enhancing the perception of pain. The anxiety state caused by, first, the failure of the wound to heal and, second, the unrelieved pain and discomfort, may lead to enhanced pain perception. Chen et al (2000) confirmed the relationship between pain and anxiety. To achieve satisfactory pain relief both the physiological and affective components must be addressed.
Another psychological dimension of Ms Bolton’s pain was the intense emotional distress associated with it. Her efforts to protect herself from the pain (Box 1) increased in direct proportion to the emotional distress she experienced. This distress was a powerful motive for non-concordance with treatment.
The protracted nature of the patient’s leg ulceration led to two sets of related, but different, interpretations of the situation. On the one hand, is the patient’s perspective and, on the other, the standpoint of the health professionals. This had a profound impact on communication between Ms Bolton and the health-care professionals involved in her care.
When such a disparate situation persists over a considerable time, it invariably raises anxiety levels in both the patient and the health professionals. Elliott and Devine (1994) concluded that disparity between expectation of outcome and reality brought about a state of cognitive dissonance, which in turn increased anxiety.
To reduce the anxiety caused by the disparity, the individuals concerned must be motivated to act in such a way as to iron out the inconsistency. In Ms Bolton case, her anxiety about delayed ulcer healing was due to a perception that the nurses and doctors were not taking a sufficient interest in her situation. The health professionals, on the other hand, attributed the cause of delayed healing to the patient’s non-concordance.
Although the analysis of the situation in general and pain management in particular was solely from the patient’s perspective, this analysis is valid because, in pain management, it is the patient’s perception that is important. Specifically this included:
- Inadequate pain assessment
- Health staff’s over-reliance on physiological bias in interpreting the disease experience
- Inadequate consideration of the psychosocial dimensions of the patient’s pain experience
- Health staff’s reluctance to adjust practice to facilitate genuine patient empowerment.
It has not been the purpose of this article to criticise the health professionals involved in leg ulcer care in general and those involved in this case in particular. The staff involved in this case had done their utmost within the time and manpower resources available.
Within the constraints of community nurses’ heavy workload it is difficult to conduct a detailed pain assessment of all patients. Leg ulcer clinics that have the expertise and resources to provide a dedicated service might be better placed to bridge the gap in services.
If the experience of patients with chronic leg ulceration is to be improved and the quality of provision raised, the issues identified in this case must be addressed, namely:
- We must see improvements in the assessment of patients with leg ulcers in general and pain assessment in particular
- It will be necessary to extend the provision of specialist leg ulcer services.
Pain assessment should be regarded as an integral part of leg ulcer assessment and more than a visual analogue scale should be used (Casey, 1998). In reality, my experience leads me to believe that clinicians often pay only lip service to the significance of pain assessment.
Patient empowerment is the core of the NHS modernisation agenda. Facilitating patient empowerment, however, requires health professionals to make significant changes in the way they relate to patients. If we, as health professionals, are to rise to the challenge of meeting the health-care needs of the 21st century this is one issue that truly needs to be grasped.
- The patient’s name has been changed.
- It is fundamental to appreciate that pain from wounds is multidimensional, and the patient’s psychosocial environment will affect the physiological experience of pain
- Assume that all wounds are painful
- Over time wounds may become more painful
- Accept that the skin surrounding the wound can become sensitive and painful
- Accept that for some patients the lightest touch or simply air moving over the wound can be intensely painful
- Know when to refer for specialist assessment.
Source: World Union of Wound Healing Societies, 2004.
Summary of the WUWHS (2004) and EWMA (2002) guidelines
- Assessment of wound pain should include patient involvement, agreed assessment method, and layered approach to evaluate effectiveness of analgesia
- Initial, ongoing and review assessments are integral parts of pain assessment
- Assessment strategies should be tailored to the individual’s need, taking into account the age, cultural influence and the individual’s interpretation of pain
- Associated factors of pain, for example triggering events, signs of infection/inflammation and condition of periulcer skin, as well as the intensity, should be duly considered
- Systematic and consistent use of pain scale/score provides a reliable method of pain assessment and evaluation of effectiveness of pain control
- If a patient has severe pain during a dressing-related procedure, it is negligent to repeat this without adequate pain relief.
Author’s contact details
Shiu-Ling Briggs, Tissue Viability Clinical Nurse Specialist, Specialist Nurses Office, Level A, Royal Surrey County Hospital, Guildford, Surrey. GU2 7XX. Email: email@example.com
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