Annals of Oncology Advance Access published online on December 10, 2007
Annals of Oncology, doi:10.1093/annonc/mdm462
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Opioid analgesics for cancer pain: symptom control for the living or comfort for the dying? A qualitative study to investigate the factors influencing the decision to accept morphine for pain caused by cancer
1 Gloucestershire Hospitals National Health Service Foundation Trust, Gloucester Royal Hospital, Gloucester
2 MRC Health Services Research Collaboration, Department of Social Medicine, University of Bristol, Canyng e Hall, Bristol
3 Department of Palliative Medicine, University of Bristol, Level C, Bristol Haematology and Oncology Centre, Bristol, UK
* Correspondence to: Dr C. M. Reid, Gloucestershire Hospitals National Health Service Foundation Trust, Gloucester Royal Hospital, Great Western Road, Gloucester GL1 3NN, UK. Tel: +44-8454-225-179; Fax: +44-8454-225-639; E-mail: colette.reid{at}bristol.ac.uk
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Abstract |
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 Top Abstract introductionpatients and methodsresults: general findingsdiscussionfundingAcknowledgementsReferences |
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Background: Morphine and other opioids are the mainstay of cancer pain management, yet considerable fears surrounding them present barriers to pain control. Research in groups already using opioids has examined their concerns, but there is little evidence about how patients react when first offered opioids. We explored the factors influencing the decision to accept or reject morphine when first offered to patients with cancer.
Patients and methods: A qualitative in-depth interview study nested within a cancer pain management trial. Interviews were conducted with 18 patients (nine females), aged 42–88 years.
Results: The categories that surrounded decisions about commencement of opioids were: anticipation of death; morphine as a last resort; the role of the professional; and ‘no choice’ but to commence. Participants rejected morphine as a medical intervention to control pain and promote quality of life because they saw it only as a comfort measure for the dying. However, opioids were more acceptable if health care providers had confidence in opioids and side-effects were well managed.
Conclusion: Among cancer patients the idea that opioids represent a comfort measure for the dying and not legitimate analgesics may represent a greater barrier to their uptake than concerns about tolerance or addiction.
cancer, morphine, pain
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introduction |
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TopAbstractintroductionpatients and methodsresults: general findingsdiscussionfundingAcknowledgementsReferences |
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A clinical review article published in 2005 highlighting the role of morphine and other opioids in the treatment of cancer pain, cautioned that "morphine has long been feared by the general public and the medical profession ... " (p. 827) [1]. These fears of opioids have been explored with patients by quantitative methods, using tools such as the Barriers Questionnaire II (BQ II) [2]. The BQ II quantifies concerns such as fear of tolerance and addiction to opioids, but also scores other obstacles to cancer pain management including belief in the inevitability of cancer pain and fear of distracting the health professional from treating the cancer. Patients with high barrier scores have higher pain scores and reduced adherence to their analgesics [2–4]. Qualitative studies have confirmed that patients with cancer taking opioid analgesics have concerns about tolerance, addiction and side-effects. Furthermore, patients' interpretations of pain, other symptoms and medication side-effects may complicate the assessment of attitudes to opioids [5]. Although highlighting the complexity of opioid acceptability, studies to date have largely focused on patients who are already using opioids for moderate to severe pain. It is unlikely that such studies are able to capture the views and concerns of patients being offered an opioid for the first time. These attitudes are integral to decisions to commence opioid medications and therefore to the daily practice of clinicians involved in cancer care. To examine patients' views about commencing opioids, we nested a qualitative in-depth interview study within a cancer pain management trial.
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patients and methods |
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TopAbstractintroductionpatients and methodsresults: general findingsdiscussionfundingAcknowledgementsReferences |
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Participants were recruited from a pain management trial that took place in a UK oncology center. By nesting the qualitative study within the trial, we aimed to interview a group of patients similar to those seen in routine practice. Patients who had uncontrolled pain caused by cancer and were only taking paracetamol or a nonsteroidal anti-inflammatory drug for pain were eligible for the trial. On entering, they were randomized to either the traditional World Health Organization three-step analgesic ladder and prescribed a step II analgesic (cocodamol) or to an experimental two-step approach and prescribed a step III opioid (oxycodone). Participants were informed that if they agreed to take part, they had a 50/50 chance of being allocated to oxycodone, which was described in the patient information sheet as being similar to ‘morphine’. We approached all patients who both entered and declined participation in the trial, to request an interview. This enabled inclusion of the views of those unwilling to accept randomization to a step III opioid.
Twenty-nine patients were approached about the interview study and 18 took part. Of these 18, 12 had also agreed to participate in the two-step trial. Five patients who entered the two-step trial did not participate because they died soon after study entry. Six other patients were approached about the interviews but did not take part; two died very quickly and four did not want to take part (Figure 1). Interview participants provided written informed consent to take part. The majority of the participants were interviewed in their own homes by one of the authors (CMR), and most took place within 2 weeks of their trial recruitment interview. The interviews were conducted with the aid of a topic guide and participants were asked to describe their pain and its impact upon their lives, their recollections of the consultation when the trial was discussed, their associations with morphine, the flexibility of their decision to commence or delay opioids and the influence of others upon that decision. Interviews were audio-recorded, transcribed verbatim and anonymized. All names used here are pseudonyms.
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Data were analyzed using constant comparison methods [6]. Two researchers (CMR and RGH) read the transcripts independently and assigned codes to sections of text, which were then grouped into categories. The researchers met at key intervals to compare and refine codes, comparing those derived from new interviews with codes obtained previously. Material was grouped into four key categories, which were further validated after analysis of the transcripts of negative cases. After the first nine interviews, no new themes emerged from the data (data saturation), but a further nine were conducted in order to confirm that saturation had occurred.
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results: general findings |
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TopAbstractintroductionpatients and methodsresults: general findingsdiscussionfundingAcknowledgementsReferences |
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The 18 participants ranged in age from 55 to 82 years, all were white and half were women (Table 1). All participants described how pain had a significant impact on their lives, often resulting in loss of mobility, function or role. Ten participants had recently had news of disease spread.
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Participants described in detail the views and experiences that formed the basis of their decisions about the commencement (or noncommencement) of opioid analgesics. These are contained within four distinct but interrelated categories: anticipation of death, morphine as a last resort, the role of the professional, no choice but to commence. The categories are discussed in turn.
anticipation of death
For most participants, the presence of uncontrolled pain served as a constant reminder of their cancer and caused them to reflect on their anticipated death:
The pain is niggling, and then it keeps reminding me, "You've got cancer, you're going to die." Susan
For some, the need to take ‘painkillers’ also made them anxious that death would be hastened:
I'd had a hard job to accept I'm going to die ... It's not easy for me ... because I still— I feel that there is something somewhere, you know, people do beat it, and I feel I can. But the more the painkillers have to be increased, the kind of more it drags you down a bit, and you can see that the future is going to be harder, and you have to fight that much more. Tom
morphine as a last resort
Participants viewed morphine and other step III opioids as the last resort. This association had led some of them to become frightened when morphine had been discussed in the context of the clinical trial. The word used most frequently to describe this association was ‘last’; ‘last resort’, ‘last step’, ‘last stage’, ‘last ditch’ or ‘last minute’:
I, rightly or wrongly, always associate morphine with the sort of top end of the scale of intervention, meaning the sort of the last resort almost. Margaret
The participants explained why they saw morphine as a last resort. They anticipated increases in dose, not because of lack of effect but more as an inevitable consequence of commencing morphine. These dose increments would lead to sedation and then cause death. Thus, pain relief was traded-off against further loss of function and hastened death, and this trade-off was only acceptable when death was imminent:
My association is that you're getting near the end when you're on morphine, and therefore you want a painkiller which is going to knock out the pain, you're not really bothered about anything else, you just want to actually get rid of the pain. And if they go a bit gaga well what can you expect, it's either-or. Either-or, you know, you're either not bad enough or you are bad enough, if you see what I mean. Philip
Some participants described how they would not use morphine because of this:
I think it's more to do with the fact that if I take quite a lot of this morphine then I—it just means I'm getting worse. And I don't want to get worse. Ruth
Only one participant mentioned tolerance. This was because he had read the drug information sheet that was inside the box containing his normal-release morphine liquid. Seven mentioned addiction, but most of these seven found it difficult to explain what being addicted might mean for them:
Well there's sort of no getting out, once you've started on morphine and become addicted to it, it would be a hell of a job to get out of trouble and stop taking it—if that makes sense to you. AndyI thought perhaps I'd be more and more ... and just make myself sort of weaker and weaker ... that I'd want to, yeah, just carry on er (laughs) to the end I suppose, isn't it? Betty
When asked about the sources of their views, participants described witnessing the experiences of dying relatives or friends, or recalled stories they had heard from others. They perceived that the slowing of function or deterioration they witnessed, particularly any decline in cognitive function, was caused by the opioid, rather than the result of the underlying condition necessitating the use of the opioid (usually cancer). One participant remembered how doctors had informed her that increasing the dose of her father's morphine would shorten his life:
In fact when my father was dying we were asked if they could increase the dose although it probably would kill him. And we said yes. I mean we didn't want to put him through ... he was dying, and so we said yes, and of course they did. Ruth
the role of the professional
The professional was mentioned often during the interviews. Participants described the way in which professionals had communicated about pain, how opioids were offered (in particular whether or not they were offered as choice), and discussed trust in their professional.
Participants preferred unhurried consultations in which pain was seen as important. Some did not expect their pain to be addressed during oncology clinics because they perceived the staff to already have high workloads. Of importance to many participants was the need for their pain to be believed:
Because they [the oncology team] are just mystified. They don't know what I'm saying, they don't understand my pain at all. And therefore it's made me feel that I'm not—that I'm lying ... that makes me feel that I have been making a fuss about nothing. And I haven't made a fuss about nothing, I'm not like that. Patricia
The manner in which the professionals communicated about opioids was important. Participants felt more able to accept inclusion in the pain management trial when they were told that opioids were being commenced at a ‘low dose’ and opioids could be discontinued if side-effects developed. Participants appreciated professionals who spoke about opioids with knowledge and confidence but were sometimes suspicious about the idea of ‘choice’:
They actually don't say, "Mr Smith, would you like to take the morphine?" They always say, "It's your choice.".... If it is my choice, what are they not telling me? Harvey
Half of the participants mentioned trust in the professional as an important factor in their decision to take opioids. For some, trusting the professional allowed them to make their own decision to commence, whereas for others, trust meant that they could allow that the professional to make the decision on their behalf:
No, no I'd think to myself, "Well they're putting me onto something else which is a stronger drug to help me.".... And I just accepted that. I mean when I go to any doctor—well most doctors anyway—.... I always go in there with the idea that they know what they're doing. Jim
no choice but to commence
Eight of the participants had commenced a step III opioid by the time of the interview, allowing us to explore factors that influenced their acceptance of opioids. The two important factors were concern for others and the severity of pain.
The participants spoke of the effect that their uncontrolled pain had on others, usually a spouse but also extended family. They realised that family members were anxious when witnessing their pain. One participant considered that his wife was ‘suffering’ also. This concern often meant that they would take ‘as required’ doses of opioids for breakthrough pain, even though they were trying to avoid more opioids:
I had to do something, although everything in me was saying, "No, no, no".... But I realised I had to do it. I'm a father, I'm a granddad, I had to do something. Tom
Twelve participants described how the severity of the pain was crucial to their decision to commence opioids. They resisted until the pain was so severe they had no choice. One woman described how the fracture of her femoral metastasis led to desperation and her use of morphine:
I think at that stage I was so desperate with the pain I would have done anything. Vanessa
relationship between the themes
‘Morphine as a last resort’ is the central theme emerging from the data. Participants' feelings about death, the role of the professional and the point at which they had no choice but to commence hinged on the idea that morphine was a last resort. When morphine was offered as an option, participants' anticipation of dying was heightened, which frightened them. Prior experience with health professionals had reinforced the idea that morphine was a last resort. This meant that opioids would only be accepted from trusted professionals. However, the most important relationship, with implications for clinical practice, was between the idea of morphine as a last resort and participants' arrival at the point where they had ‘no choice but to commence’. Here, seeing morphine as a last resort meant that patients started opioids either when the pain was so severe they had no alternative, or out of concern for others. Once opioids were commenced, the clinical outcome either strengthened the view of morphine as a last resort, or helped to dispel it. If the opioid caused side-effects, particularly neuro-toxic effects such as sedation and hallucinations, then the opioid was rejected and pain was not controlled. If, however, the opioid relieved pain and did not cause side-effects, then it was seen as a treatment that allowed confidence in the future:
I don't feel it's the last step .... With the [opioid] .... I think this could take me through all that I have to pass through into the future. Tom
negative cases
Only four of the eighteen participants did not talk about morphine being linked to death and dying. However, these ‘negative cases’ did not reflect the absence of the association, instead they indicated some participants' unwillingness to discuss the possibility of their own death. For instance, after his interview had concluded, one man listened to his wife describe how their pharmacist had asked, "is he worse then?" when she had collected his first prescription for morphine. He then began to talk about how frightening it was to be offered morphine because everyone saw it as a death sentence. The negative cases indicated that the idea of ‘morphine as a last resort’ was so strongly held that some participants found it hard to discuss.
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discussion |
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TopAbstractintroductionpatients and methodsresults: general findingsdiscussionfundingAcknowledgementsReferences |
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We found that patients with cancer who were offered morphine for pain relief interpreted this as a signal that their health professional thought they were dying, because opioids were interventions used only as a ‘last resort’. Because participants themselves were not ready to die, they rejected morphine and other opioids as analgesics despite the pain experienced as a consequence. Participants' descriptions of the role of professionals indicated that patients value professionals' confidence in opioids. Some patients may therefore become more frightened when offered a choice, since this indicates a lack of confidence in the opioid as an analgesic.
In contrast to previous studies, the participants in these interviews were not unduly concerned with tolerance or addiction. This difference may be explained by our use of qualitative methods. In the in-depth interviews, participants were encouraged to voice all of their views without being constrained by predefined items or categories. Furthermore, incorporating direct questions about fear of death into a questionnaire may be viewed by researchers and gatekeepers as difficult and ethically sensitive, despite people's willingness to participate in research addressing end of life issues [7]. This may mean that the concerns about opioids that are easier to elicit or measure have been overrepresented within the medical literature, and views about death and dying may have been relatively excluded.
Although the sample size for his study was small, data saturation was achieved and the consistency of the participants' views indicates that the findings should resonate with other cancer care and pain management contexts. The interviewer was a palliative care physician with an interest in understanding her patient's motivations for refusing opioids. Participants were aware of the interviewer's clinical role at the oncology center where they were being treated. Analysis of the transcripts by the second author not only improved reliability in the analysis [8], but also helped to detect and rectify any interviewer bias [9]. We were satisfied that the interviews appeared to be frank accounts of the participants' experiences, including criticism of health professionals.
The perception held by patients that opioids are sedating and have the potential to hasten death [10] also dominates the medical literature [11–13]. Many authors have written about the use of morphine at the end of life as an example of the utility of the doctrine of double effect [14–16]. In fact, whilst respiratory depression is undoubtedly a side-effect of opioids[17] the use of the doctrine of double effect to justify commencing or increasing opioids to manage pain at the end of life has been challenged [18]. For instance, respiratory depression is not often a clinical consideration in chronic pain settings, because of the tolerance that develops to the respiratory depressant effects of opioids [19] and the respiratory stimulation that occurs when pain is present [20]. In a retrospective study of consecutive admissions to a hospice, it was found that pain relief with opioids was not associated with shortening of life [21]. Despite this evidence, the belief that opioids hasten death is widely held. Our study showed that the association has a significant impact on pain management, as patients felt that an offer of opioids signified imminent death. The study's findings have many implications for professionals managing cancer pain and professionals managing patients dying from any cause. They highlight the importance of the professional in cancer pain management, but also how beliefs about opioids that are communicated to relatives of the dying may have implications for the pain relief of others in the future. The findings also demonstrate the importance of managing opioid-related side-effects, so that the initial experience is positive and provides confidence for the future. Since the role of the professional is crucial, further studies with professionals are required to investigate their attitudes to morphine.
If we are to employ the range of available opioids in order to successfully manage pain caused by cancer, we must ensure that morphine does not remain inextricably linked with death. If this connection stays in place then morphine will continue to be viewed as a comfort measure for the dying rather than a means of pain control for the living.
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funding |
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TopAbstractintroductionpatients and methodsresults: general findingsdiscussionfundingAcknowledgementsReferences |
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Macmillan Hambro Fellowship to G.W.H. 2005.
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Acknowledgements |
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TopAbstractintroductionpatients and methodsresults: general findingsdiscussionfundingAcknowledgementsReferences |
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The authors are most grateful to the 18 participants, many of whom have since died, for their participation in the interviews. Both CMR and RGH participated in the design, conduct and analysis of this study and preparation of this manuscript. GWH participated in the design of this study and preparation of the manuscript. All authors have seen and approved the final version. The South West MREC gave approval for this study. (MREC/03/6/26).
Received for publication July 20, 2007. Accepted for publication August 23, 2007.
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