Sixty-one out of 391 invited patients expressed an interest. We subsequently interviewed 23 patients (17 women; mean age 54 years; range 31 to 89 years; Table
1). Fifteen patients were on stable, prescribed, mostly strong, opioids. Five had stepped up opioid strength within the preceding year and three had stepped down. The mean duration of opioid use was 14 years (range two to 35 years). There were discrepancies between prescribing records and patient self-reports. For example, three patients indicated that they were no longer taking prescribed opioids; one because of recommendations from a specialist and two because of personal choice. All had experienced adverse side effects coupled with minimal or no pain relief. We interviewed 21 patients at their homes, one at a general practice and one at the University. Spouses were present in two interviews. We held 12 interviews before the first GP focus group and six were held following the second GP focus group. Mean interview duration was 53 minutes (range 34 to 77 minutes).
Table 1
Patient sample characteristics
Female | | 17 |
Median age in years (range) | | 54 (31–89) |
Mean Index of Multiple Deprivation (SD) | | 20 (12) |
Coded mental illness | | 17 |
Current opioid strength | Strong | 15 |
Weak | 5 |
Non-opioid | 3 |
Trajectory (changes within the preceding year) | Step-up | 5 |
Step-down | 3 |
Stable | 15 |
Total | | 23 |
Fifteen GPs (11 female) from 13 practices (five urban and eight rural) participated in two focus groups. One GP had agreed to participate but subsequently did not attend. Participants had on average 10 years’ experience as GPs (range two to 36 years) and a median list size of 7500 patients (2400 to 25000 patients). Two GPs had special interests in pain management, one in mental health and one in palliative care.
Patient drivers to seek help
Patients sought pain relief, an explanation of their symptoms and to improve or maintain quality of life. Such hopes and expectations often continued to be unmet amongst those patients we interviewed. Sometimes this was because expectations of achievable pain relief were unrealistic:
‘[I wanted the GP] just to relieve the pain really… more or less just give me the medication to take the pain away. Nothing other than that.’ [Male, 61 yrs, maintained on weak opioids, D1; 64&208]
Patients repeatedly consulted with poorly controlled pain despite continuing or even increased doses and strengths of pain killers. However, they often recognised that they had to balance any benefits from pain relief with the adverse effects of opioids. Hopes for pain relief were tempered by fears about adverse effects of treatment escalation, particularly opioid dependence:
‘… and from what I’ve read up, because I like to, sort of, keep on top of things, that it’s an opium based drug, so you will build up some tolerance and you will build up [becomes tearful] And you will potentially become sort of addicted to it, if you like.’ [Male, 47 yrs, increasing strong opioids, C2; 62]
Patients sought an explanation for their symptoms and often struggled to receive one. The patients we interviewed often described complex narratives, sometimes relating the onset of their symptoms to specific events (such as accidental injuries) and often requiring multiple investigations and consultations with primary and secondary care clinicians. They picked up partial or even contradictory explanations for their symptoms; diagnostic labels such as osteoarthritis, fibromyalgia and hyper-mobility syndrome did not appear to sufficiently capture their suffering. Doctors’ explanations which attributed poorly controlled pain symptoms to lifestyle factors or life events were received with or even fuelled scepticism:
‘Well it was like a challenge for me…because all they did really was to tell me to lose weight, it’s the menopause, and that was it…and I kept going to the GP because I knew something wasn’t right. But I had the stamina to say well I know something’s not right, I want to be seen.’ [Female, 54 yrs, maintained on strong opioids, G4; 38–54]
Patients’ abilities to cope with pain varied over time, and they were driven to seek help when medication or other coping measures no longer work and their pain interferes with their usual activities. The centrality of quality of life to patients was apparent in their distress when seeking help from GPs:
‘I don’t know how many times I’ve sat and I’ve just sat and cried and said, I’ve had enough, you know. And before I got on the gabapentin I just sat in the GP’s office in floods of tears like a lumbering idiot and said if you can’t take this pain away from my legs just chop them off, because it’s just 24/7…’ [Female, 37 yrs, maintained on weak opioids, G2; 105]
Features of transactions between patients and GPs
Four themes characterised not just the views of patients or GPs, but some feature of the transactions between them.
Absence of a shared management plan. First and most importantly, the management of patients with chronic pain often unfolded in the absence of a shared long-term management plan so that prescribing occurred as a default reaction. Prescribing decisions for unfamiliar patients, often with long and complex pain histories, were made within the time constraints of routine consultations:
‘They’ll be down for their medication review but they’ll say, I’m here for my medication review, you’ll spend some time doing the tablets. Oh and whilst I’m here I’ve got this rash, I’ve got this, whatever it is. So that automatically then reduces the time you can actually spend looking at all of their medication which might include their painkillers.’ [GP, female, Leeds focus group; 246]
Pain management was often marginalised in the context of co-morbidities, especially given the absence of clear treatment goals compared with other long-term conditions, such as diabetes.
Patients could also receive opioid prescriptions after telephone requests, when GPs were juggling various other urgent calls and queries competing for their time. GPs resorted to the compromise of prescribing further opioids without formal medication reviews. These short-term fixes accumulated so that repeated prescriptions or escalating strengths of opioid became the norm for patients until either party realised that the clinical management approach was not working. At this point, safety concerns may have been raised or the GP may have admitted to running out of ideas on further management:
‘It seems to me that when I got to a certain level [300mcg Fentanyl patch], it was almost like she’d [the GP] not realised that she’d gotten me up to that....and so now all we do is work on getting that level down.’ [Female, 37 yrs, reducing strong opioids, B3; 162, 174]
GPs were aware of the limitations of prescribed opioids, which then compromised their abilities to formulate coherent management plans. They expressed some uncertainty about how to prescribe them appropriately and were aware of giving conflicting advice to patients on balancing pain relief against the risks of tolerance and addiction:
‘… there’s something about us not saying to patients often enough, you know, these are addictive, take them when you’re in pain. Because everybody always says, you need to take them four times a day because if you break that… your pain is going to come through. So we’re telling them that on the one side and then on the other side we’re saying, you’ve got to stop taking it as soon as you’re not in any pain because otherwise you’re going to be hooked on them and your use is going to escalate up.’ [GP, female, Bradford; 736]
Locating control and responsibility for change. Second, we recognised a discussion about where perceived control resided and who has the ability to make change. Sometimes patients positioned control with their GPs:
‘And I know the doctors know what they are doing, I suppose, but you don’t know whether to say ‘I think these patches are working, can you up it?’ [Female, 72 yrs, maintained on strong opioids, A1;126]
At other times, patients felt responsible for controlling the use of prescribed medication. Not infrequently, neither party felt in control and non-pharmacological approaches were limited by resource constraints:
‘He [the GP] said what exactly do you want me to do? You've pretty much been on everything so there is nothing for you to do. There is nothing for you to go on to. And I was like well what exactly am I doing coming off [strong opioids] when you've got nothing to put me on to?' [Female, 37 yrs, reducing strong opioids, B3; 140]
One response to this mutual lack of control was to refer patients on for specialist assessment and management, usually to pain clinics. Access to appropriate pain services, especially those dealing with behavioural and psychosocial aspects of chronic pain management, was limited and GPs felt under pressure to do something whilst patients waited, usually increasing opioid therapy. Referrals allowed some alleviation of clinical responsibility but were made more in hope than in expectation.
‘…every time I send somebody to chronic pain [clinic] they come out with more medication, or injections.’ [GP, female; Leeds; 319]
Patients could go through several cycles of referrals and new treatments, and of building up hopes and being disappointed, so that each cycle reinforced a sense of futility.
‘Well all they do really is refer me to see a specialist, which was what they did in the first place, referred me to see a specialist and give me tablets… It’s like you are banging your head against the wall, you get fed up of going there… it’s a waste of my time, it’s a waste of their time because they’re not interested…’ [Male, 47 yrs, maintained on strong opioids, F1; 365–392]
Long term prescribing often continued because of a perceived lack of alternative options, with neither party feeling in control nor achieving satisfactory outcomes.
Continuity of care. Third, GPs were aware of the needs to get to grips with the key issues in patient narratives and to explore beliefs or behaviours which influenced their experience of pain. Some responded by trying to establish continuity through investing more time in patients with chronic pain.
‘I think it’s good to take ownership…, because it’s that collusion of anonymity thing isn’t it? As soon as someone gets sort of uncomfortable they will shift to a different prescriber and they will push them along a certain course and they’ll go, I don’t like that, and they’ll go to a different one. And I honestly think it’s like a ship without a rudder and it’s just going round and round in circles.’ [GP, male, Leeds; 545]
Patients also highlighted problems with the lack of continuity and did not feel their needs could be properly addressed if their doctors were unfamiliar with their records. However, taking responsibility and trying to establish continuity had two potential drawbacks. It had implications for practice workload and might be perceived as unfair by colleagues because it reduced availability to see other patients:
‘Would you feel guilty, you know, if you were bringing back a patient each week? And I think I’d have a bit of that because I think you don’t want to appear as if you’re seeing someone over and over again to your colleagues. I think that… certainly with me that I don’t want to be seen as that doctor that brings someone back every week…’ [GP, male, Bradford; 371]
Continuity could also result in stagnation, with losses of impetus and ideas for change, making it difficult for GPs or patients to question decisions:
‘She’s [the GP] known me for years and years and she, she’s really nice and, but sometimes, in a way, knowing them can be worse, because you don’t tend to question their judgement, you know, because you don’t want to offend, if you get what I mean?’ [Female, 37 yrs, reducing strong opioids, B3:305]
One GP described her discomfort with consultations dealing with chronic pain and acknowledged that she felt better equipped to deal with different problems. Therefore continuity appeared more likely to be productive if GPs possessed interests and skills in supporting patients with chronic pain.
Mutuality and trust in the relationship. Finally, mutuality and trust between patients and GPs provided a platform for negotiating wider aspects of the relationship and considering more holistic approaches to pain management. However, establishing some level of trust was difficult when GPs had formed fixed, negative attitudes towards patients. GPs anticipated that consultations with certain patients were going to be problematic; this suggested that the problems resided as much within the characteristics of the patient as in the pain itself.
‘I’ve got different responses to different patients I’ve realised just thinking about them. There’s one or two that my heart just goes, “oh dear, here we go…” because I know it’s going to be a tough consultation.’ [GP, female, Leeds; 794]
There could be significant resistance to suggestions of reducing or stopping opioid treatment:
‘They’ve come in to get more medication and that’s their agenda. And you’re sitting there with this other agenda which is, you’re taking too many tablets and I’ve got to now try and address that with you. That is like a completely… they’re opposed completely so you know, they’ve come in with one thing and they know it’s going to be a battle, they’ve already got their hackles up.’ [GP, female, Bradford; 1010]
GPs often suspected they were faced with patients being managed for an incompletely formulated problem, especially in the presence of known or suspected mental health problems. Although they recognised the dangers of continuing or escalating opioid prescribing in such circumstances, GPs said that prescribing represented a means to establish trust so that non-pharmacological approaches could be considered then or at a later point.
‘And then once you’ve got to that point and they’re still struggling with pain it’s almost having that conversation where you can then start to say, well maybe it’s not completely physical…’ [GP, male, Leeds; 343]
Some recognised this as a sub-optimal strategy as biopsychosocial approaches should ideally have been addressed at an earlier stage.