Cancer-related pain experienced in daily life is difficult to communicate and to manage – for patients and for professionals

1 Introduction

Cancer-related pain (CP), defined as pain caused by the cancer or the cancer treatment [1], may cause both physical and emotional disabling and lead to interference with daily activities, suffering, and reduced quality of life [2]. Pain often coexists with other problems, which may act synergistically on perceived health [3,4] and make the patient vulnerable [1,5–8].

Despite advances in treatment modalities [1] and recommendations to relieve CP [9–12], pain continues to be prevalent among people living with or after cancer. During cancer treatment, after curative treatment, and for patients with incurable cancer, the pain prevalence is 50, 36, and 55%, respectively [9,13], and in survivors of solid cancer, the prevalence is 47% [14]. Therefore, more efforts are needed to find explanations for and take action against insufficient treatment of CP. Healthcare professionals (HCPs), patients, caregivers, and the public have been shown to share similar attitudinal barriers to the effective management of CP with opioids [15]. Other barriers to sufficient pain management were reported in two other reviews. One review demonstrated inadequate knowledge and poor attitudes among HCPs regarding CP [16]. Both the severity of the patients’ pain and their need for analgesia were questioned by HCPs, and consequently, the patients were left in pain [16]. The other review demonstrated poor knowledge of CP management among nurses [17], strengthening the importance of clinical recommendations and education [17]. Quantitative studies are supported by qualitative studies, which have demonstrated unsupportive healthcare systems, poor communication between patients and HCPs, and a lack of pain assessment by HCPs, leading to insufficient pain management [18,19].

Another angle to the high prevalence of insufficient CP management is the patients’ perspectives on their pain conditions, pain treatment, and capabilities to communicate their pain problems. We hypothesize this angle to be equally important in the search for explanations for insufficient pain management. Patients’ perspectives and difficulties with expressing their pain problems must not be overlooked or disregarded. Qualitative research on patients’ perspectives and beliefs in relation to CP and pain management is sparse. As nicely expressed in a paper on chronic non-cancer pain (CNCP) [20], “Despite the increasing number of qualitative studies on pain, the lived experience of pain remains a blind spot in the field.” Pain was reported as one of the nine main categories of problems cancer patients deal with [4]. The paper indicated a need for improved communication between patients and HCPs and help to the patients to deal with their symptoms [4]. A review on cancer survivors’ experience with persistent pain [21] only identified four studies, all dealing with breast cancer survivors. They reported that their pain problems were unexpected, and they did not feel supported [21]. In a study on patients with advanced cancer and their caregivers [22], the main drivers of help-seeking and action by patients to manage their pain were the sensory experience of pain and the meaning attached to it, not beliefs about analgesia. In contrast, a study from the USA on cancer survivors’ perspectives on their use of opioids to manage CP [23] showed that opioids were regarded as illicit drugs, and opioid use was perceived as negative based on the media narrative of the opioid epidemic, the surroundings’ perceptions of opioids, and fear of opioid addiction. These perspectives resulted in unrelieved cancer pain and poor quality of life [23]. In a recent study on cancer survivors’ experience with the management of chronic pain after curative-intent treatment [24], the patients described that their pain often went unrecognized by their providers, they experienced limitations in pain assessment and a tendency to minimize or invalidate their pain experience [24].

The present evidence calls for more research into patients’ perspectives and capabilities to communicate their CP problems. Another incentive for us to perform a qualitative study on CP has been our clinical experience with patients participating in our rehabilitation courses in REHPA, Knowledge Center for Rehabilitation and Palliative Care. Among 800 participants in our courses during 2018–2020, 62% reported living with moderate to severe pain in their daily lives (unpublished data).

This study aims to gain qualitative insight from patients living with CP. How patients experience and explain their CP and its’ management, and their expectations of the healthcare system.

2 Methods

3 Results

The interviews were carried out between April 2022 and December 2022 by the third author (CV) and fourth author (CVP). Interviews lasted from 40 to 90 min. Nine patients were interviewed face-to-face in their own homes and two online, and six were interviewed at REHPA locations.

The following three themes were identified:

Theme 1: Explaining CP.

Theme 2: Strategies and barriers to the management of CP.

Theme 3: Responsibility for managing CP.

4 Discussion and conclusion

This study adds to the sparse, qualitative knowledge of cancer patients’ lived experience with pain. How they understand, experience, and explain CP and its management. Communication between patients and their surroundings regarding their pain is of fundamental importance for relevant treatment. Capability to express pain problems for oneself, to the surroundings, families, friends, and colleagues, and HCP is one of three important premises for providing appropriate treatment strategies to relieve patients’ pain. The second premise is the recipients’ abilities to respond properly to this communication, and the third premise is the healthcare systems’ capability to build a structure, which can respond to the patients’ needs.

In the first theme in this study, the patients described a lack of words and knowledge when they should describe their CP. Patients’ lack of words has previously been recognized by HCP, who reported that patients replied: “What do you mean by describing the pain, it’s just there” when they were asked to describe their CP [29]. When explaining their CP experiences, the patients in our study used metaphors, and they adapted their pain descriptions according to the recipient. Metaphors are often used to describe pain. In a qualitative study on how language was used to describe pain experienced by patients with CNCP, the patients consistently used metaphors across different themes as part of their desire to communicate to others and make the invisible pain visible [30]. An interview study of older adults with CNCP gave insight in the way pain was described by the patients to inform HCPs’ approaches to assess the pain. The patients tended to personalize the meaning of pain using stories, similes, and metaphors, and they contextualized pain in relation to its impact on everyday activities [31]. Metaphors shape us and help us to tell our stories, and they can either open up or close opportunities in our lives [32,33]. The use of negative and invasive metaphors to describe pain can hinder CP management [33]. If HCPs can help patients to transform or reframe negative metaphors into more positive ones, this has been suggested to have a significant impact on how patients manage CP [33]. Other research groups have supported the view that awareness among HCPs to use metaphors can lead to communication that is more effective and with great therapeutic effects for patients [34,35]. Interestingly, all patients in our study who faced challenges in explaining their pain used invasive metaphors to describe their pain. The variation and unpredictability of pain frequently made it hard and sometimes meaningless for the patients to rate their pain numerically [31]. A similar finding was reported in a study intended to develop a patient self-management resource to support care for CP and to overcome barriers at the levels of the patient, provider, and health system [36]. In that study, several patients struggled with using numerical rating scales for pain severity, and they preferred goal-setting tools for informing anticipatory analgesia [36]. To improve communication about pain, it may be helpful to have less focus on NRS and increased willingness among HCPs to listen to the patients’ ways to measure their pain in relation to their activities of importance. We found that patients lacked knowledge regarding CP, but we also found that the patients felt the HCPs lacked knowledge of CP. The patients experienced this as a further barrier to CP management. Inadequate knowledge among HCPs has been reported as a barrier to sufficient CP management in other studies [16,37,38]

In the second theme, on strategies and barriers to pain management, some patients reported barriers in their use of pharmacological pain management, because of side effects and the medicine affecting their quality of life, and medicine being seen as bad or unnatural for the body. This perception of medicine is also reported in previous studies [39,40], where patients with cancer expressed concerns about using the medication, such as fear of unmanageable side effects, fear of harming the immune system, and fear of potential changes in the body [39,40]. The same concerns were found in an integrative review of barriers and facilitators for self-management among patients with CP. Concerns which hindered effective pain treatment [41]. Several of the patients in our study used non-pharmacological strategies to manage their pain. The patients missed guidance in both pharmacological and non-pharmacological approaches to pain management. This lack of guidance was experienced as a major barrier to achieving sufficient CP management. In line with our results, the need for more guidance from HCPs in non-pharmacological pain management strategies has been described among patients with advanced gastrointestinal cancer [42]. An integrative review has found that patients did not receive enough information from HCPs about CP and CP management, and they had to find all the information by themselves [39]. A survey on the nurses’ knowledge of pain management showed that 76% of the nurses thought that the best way to relieve a patient’s pain was using medicine [43], and the nurses missed formal training in pain management [43]. As more non-pharmacological treatments, such as physical activity [44,45], mindful-based cognitive therapy, acceptance and commitment therapy, and music therapy [11], have shown effects in the management of CP, it may be beneficial to include non-pharmacological treatment strategies alone or in combination with pharmacological treatments as standard.

Interestingly, some of the patients related the use of medicine to express how they understood the meaning of their pain. “The pain is there for a reason” as one of the patients said, and some stated that medical pain relief hindered them from following the progress of the pain. The meaning of pain was discussed in a longitudinal qualitative study, where pain was embodied with uncertainty and conflicting emotions. Particularly, the fear that pain represented disease progression could delay patients’ communication with HCPs and hinder effective relief [22].

Finally, theme 2 revealed that economy was a barrier for accessing non-pharmacological treatments. Economy was described as a top-ranked barrier in a qualitative study investigating barriers to non-pharmacological treatments in chronic pain [46].

Theme 3 is related to the responsibility for managing CP. In our study, several of the patients felt let down by the HCPs, from whom they experienced a lack of responsiveness in taking on this responsibility. The patients expressed uncertainty about whom to contact for help with the management of their CP. Most of the patients mentioned a range of HCPs, whom they saw as responsible for taking care of and guiding them in the management of their pain. This is supported by an interview study of cancer survivors [24], where the patients in general did not identify one or more providers as their primary pain provider. This lack of clarity regarding who is responsible for the patient’s pain treatment is in opposition to the recommendations from both the World Health Organization and the Danish Board of Health. These recommendations state that patients should have a designated healthcare person responsible for their pain treatment [47]. Other studies regarding this uncertainty support the patients’ experiences in our study. A study has shown that oncologist did not see their role as a key person in managing CP. They explained that they had fewer interactions with the patients compared to other healthcare providers, which limited their involvement in managing patients’ CP [29]. Nurses did not see themselves as an independent caregiver of CP, and they pointed to the physicians as responsible for the management of CP [38]. However, this is opposed by another study, which found that nurses played an important and active role in CP management in assessing and specifying the cause of pain, planning treatment, and evaluating outcomes [48]. These differing views on responsibility highlight the importance of clarifying the roles and responsibilities of CP management among healthcare providers in order to accommodate the recommendations from the health authorities for the benefit of the patients.

This study has several limitations. Patients were only recruited from one setting, which may have skewed the results and missed out on other nuances to the findings. Women treated for breast cancer were overrepresented, which seems to be a general experience in the sparse qualitative studies in CP. This may have influenced some of the perspectives. Regarding strengths, the first author presented the results to HCPs at the research clinic of REHPA and to REHPA’s user panel, which validated the findings. The user panel consists of both patients and relatives. The user panel expressed a strong connection to the findings and eagerly discussed their own experiences related to the results. The findings were discussed with the co-authors, who conducted the interviews. They confirmed that the resulting themes captured what they experienced during the interviews.

In conclusion, this study has demonstrated patients’ difficulties in explaining, understanding, and communicating their pain. It has revealed an unawareness of who is responsible for the patients’ pain treatment, and where they can get guidance in both pharmacological and non-pharmacological treatment opportunities. These factors contribute to the understanding of why many cancer patients still experience insufficient pain management. Although no direct comparison was made, patients’ experiences in this study do not seem to deviate much from the qualitative evidence of CNCP patients’ experiences. The study highlights the need to focus more on a common language and a shared understanding of CP and its management between patients and HCPs. Finally, it points to HCPs’ roles and their obligations to assume the responsibility to help patients manage their CP.