Chapter 2

The patient’s voice

Mandy Nielsen

CHAPTER CONTENTS

Overview

The experience of living with chronic pain

The search for restoration

Loss

Stigma

The value of the patient’s voice

Shared voices: the value of consumer groups

Conclusion

OVERVIEW

This chapter is concerned with the importance and value of listening to the patient’s voice in our practice with people in pain. Living with pain involves so much more than managing the pain sensation. Pain has the potential to affect every domain of an individual’s life, as well as that of their family and others close to them. Listening and responding to a patient’s story can be more than a sympathetic gesture. It can have direct consequences for the relevance and quality of health research and health delivery, and may influence post-consultation outcomes. In this chapter we will explore the experience of living with chronic pain to establish why listening to the patient’s voice is important. To facilitate this we will be hearing from four patients with different pain conditions throughout the chapter: Ron, Catherine, Beth and Mat.

THE EXPERIENCE OF LIVING WITH CHRONIC PAIN

Understanding illness begins with an understanding of illness as it is lived (Johansson et al 1999, p. 1800).

The excerpt from the interview with Ron (Box 2.1) clearly demonstrates that living with pain involves much more than managing the sensation of pain. In this short passage we can see that the experience of persistent pain has had a significant impact on a number of aspects of Ron’s life, including his sense of self, career, family relationships, and social and recreational activities. Honkasalo aptly described chronic pain as ‘an intruder or thief that takes away the most precious things in life. Pain discontinues stories, interrupts life projects, it messes up life plans’ (Honkasalo 2001).

Box 2.1 One patient’s voice: Ron

‘I still continue with regular bouts of chronic fatigue and very, very defined muscle, joint and, I would say, bone pain. My career has ground to a halt, I’ve been to lots of specialists, and now I reside at home. I’m pretty stuffed I suppose, stuffed in many ways. The consequences of it are, I’ve lost my career, I’m a lousy father in the sense of my ability to handle the kids for more than an hour at a time, there’s no football, running on beaches, the ability to socialise, all those sorts of things I can’t do because movement aggravates pain, any movement aggravates muscle and joint pain. The fatigue denies me any ability to keep my brain alive, so going out to dinner and talking to someone is generally just not on. By about three in the afternoon I start winding down, by five I’m pretty uncomfortable, by seven I’m asleep on the sofa or very quiet watching TV somewhere. Life has ground to a halt. So my circumstances are aggravated beyond my physical symptoms to now include emotional and psychological ones, because my relationship with life in the context of a family and career is distorted from I suppose expectations, or what you try to achieve or what you dream for. So now I’m an invalid, I don’t leave the house much, I drive the kids to school occasionally, go to the shops and get some milk and bread and those sorts of things, go to doctors, but I’ve become socially isolated, and it’s difficult. I’m in my 40s, but it’s like I’m living a life in my 80s, and my mind and emotions aren’t prepared for it or still comfortable with it, so a natural depression comes out of that, a difficulty relating to life, trying to find your place in it. My mindset has always been, be useful, or in other words, don’t be a nuisance in life, so relying on a partner to do a lot of the domestic work, and not being able to step forward and take an equal, or even a lead role is very difficult. The kids are, as kids are, very accommodating. It’s great that Dad gets up, helps them with a bit of breakfast and goes back to bed. Dad doesn’t join them at the beach or on social occasions, and they seem to adjust. But from my point of view, there’s a disconnection and missing out, and I suppose a degree of deficiency as a parent. I’ve been a hard worker for the last 25 odd years, and so not working is…I was built for working, I spent 25 years training and skilling myself up, and so what do you do with your mind? Life becomes very internalised and contemplative. It is very difficult, and you become disconnected from a degree of reality…you’re socially removed. I do try to socially join in, but I find that I’m brain dead or very uncomfortable in my body pain wise or fatigue wise, that I’m not a very good conversationalist. So that sort of gives a viewpoint of where I am.’

(Excerpt from narrative interview with Ron, 3 years after the onset of a chronic condition diagnosed as chronic fatigue syndrome and/or fibromyalgia.)

One of the difficulties associated with pain, however, is that each individual’s experience is unique. Ron’s experience of living with fibromyalgia will not mirror the experience of someone else. It is important therefore to acknowledge the heterogeneity of people living with pain, recognizing that it is not possible to apply a ‘one size fits all’ treatment or management framework, however desirable this may be. The full impact that living with pain has on a person’s life can only begin to be understood by talking with them about what they are experiencing, and what pain means to them. As practitioners, we need to give patients the time and the permission to ‘tell their story’ (Neilsen et al 2009).

Adopting the practice of listening to patients as the departure point for our work with people in pain may, however, create a sense of uncertainty. Is this a completely unmapped journey we are embarking on, or are there some signposts to provide a bit more direction for improved practice with this patient group? Fortunately, by considering the phenomenological research in this area it is possible to identify some similarities of experience, knowledge of which will help us when listening to patients’ stories. Three key themes within this literature relevant to our discussion are the search for restoration, loss and stigma.

THE SEARCH FOR RESTORATION

‘I said is it in my head or is there something wrong? Because it doesn’t show anything on the CAT scan. And he said, ‘Well it’s definitely not in your head.’ But nobody can tell me what it is!’

Mat

Not surprisingly, when people first experience pain they try to relieve or stop it. For most of us, there is an expectation of what Hilbert (1984) described as ‘normal’ pain, reflecting the sociocultural expectation that, with the exception of particular identifiable conditions, pain is temporary and treatable, and ‘normal’ life will soon be restored. This expectation is continually reinforced through, for example, the advertising of medications and other products purported to quickly eliminate pain.

If pain does not resolve as expected, most people will embark on an often long and convoluted search for a diagnosis and cure for their pain. In contemporary industrialized societies this search typically focuses on resources within the biomedical healthcare system, involving consultations often with multiple medical practitioners and allied health professionals. The search can sometimes stretch over a number of years, and it is not uncommon for people to list 10 or more health professionals they have consulted in the quest to eradicate pain from their lives. This journey can be not only time-consuming and expensive, but the process of retelling their story multiple times may be overwhelming and demoralizing, particularly when it does not result in a ‘cure’ for the pain. In addition, patients may receive as many different diagnoses as consultations they have attended. As one research participant said, ‘It takes a lot to have to keep repeating your story over and over again…all these medical people come from their own little sides of the fence and put their take on things. And they still don’t really even get the whole picture of what’s going on’. It is important to acknowledge to patients, therefore, that you are aware that they may have been on a frustrating journey searching for pain relief. While it may not be possible to avoid a retelling of the story, demonstrating an awareness of the journey they have been on is an important part of developing a therapeutic relationship with the patient.

It is not uncommon for people who have consulted numerous healthcare professionals to become frustrated and angry when this process does not result in a diagnosis or effective treatment for their pain. As healthcare professionals we may experience what on the surface appears to be undeserved anger being directed at us. Often much of a patient’s anger is the emotional consequence of previous treatment experiences, experiences related to legal or compensation processes associated with the injury or accident which precipitated the pain, or the impact that their pain is having on their family and social relationships. It is important to allow patients to talk about these experiences and the emotions associated with them. Avoid ‘individualizing’ the anger and attributing it to particular individual characteristics. By listening to the patient’s story and considering the individual within their social context, we can avoid ‘blaming the victim’ and develop a more constructive relationship with the patient.

While one factor contributing to patients’ frustration and anger may be the failure of healthcare professionals to eliminate their pain, research suggests that an additional trigger can be the way people are dealt with during the healthcare encounter (Holloway et al 2000; McGowan et al 2007; Nielsen 2009; Warwick et al 2004). This can be particularly so in cases where an identifiable cause of ongoing pain cannot be found, as the reality of the pain may be implicitly or explicitly questioned, resulting in feelings of delegitimation. The term ‘delegitimation’ describes the experience when an individual’s perceptions and knowledge of their pain are ‘systematically disconfirmed or discounted’ (Garro 1994, p. 788). Delegitimation is a recurring theme in phenomenological research with chronic pain sufferers, and can have wide-ranging effects. These include people becoming reluctant to disclose their chronic pain condition due to concern that others will not understand and will label them as ‘malingerers’, or the possibility that this could have a negative impact on a work situation, or the perception that stigmatization that has affected their access to, or the quality of, medical treatment. People may disengage from a healthcare system that they feel is not only unable to ameliorate their pain, but is also doubting the reality of their pain at all.

An important starting point in practice with chronic pain patients is to confirm the legitimacy of their pain and to normalize their experiences. Therapists should clearly state their belief in the reality of the pain that patients are experiencing. It is also important to let people know that they are not alone in this experience – what they are feeling and thinking is commonly reported by other people with chronic pain conditions.

LOSS

‘…there are all sorts of big deal things that I feel like I’ve lost, that while they’re not exactly about my pain, they’re all sort of linked…There’s so many things to grieve about.’

Catherine

Chronic pain, particularly when combined with impairment, often results in a series of losses across numerous life domains, including employment and income, family and social relationships, lifestyle and interests, social status, and plans for the future (Large et al 2002, p. 431). In their research with people with chronic back pain, Walker and colleagues identified ‘a catalogue of socioeconomic and other material and psychological losses’ (Walker et al 2006, p. 204), including loss of abilities and roles, employment-related losses, financial losses, relationship losses, and loss of identity and hope.

Loss of employment

Loss of employment is frequently identified as a consequence of chronic pain (Access Economics 2007; Crooks 2007; Howden et al 2003; Patel et al 2007; Raak & Wabren 2006). People will often describe a long process of trying to return successfully to work after an accident or illness. Mat, for example, was seriously injured in a car accident in 1991. After 9 months of rehabilitation he returned to his job driving a sugar cane harvester:

‘It was hard. Like I used to ache and I couldn’t jump up and down off the machines anymore. Eventually it got that way I couldn’t drive a harvester or bin out anymore, it was too rough, just the shakin’…’

When he could no longer deal with the physical demands of cane harvesting, Mat started driving taxis for a living. He described this as ‘…alright for a couple of years, but you work such long hours. And from the constant driving I got to the point I was up at the doctor’s more times than I was actually working’, and again he gave up the job due to his pain. Despite this, Mat managed to earn a living for a further 10 years, until he reached a point when he finally had to admit he could no longer work and applied for ‘the thing’, as he called the government disability pension. Mat was so ashamed at having to do this that he had difficulty saying what ‘the thing’ was, let alone discussing it further.

Catherine, a healthcare professional, was told she could not come back to work until she was ‘100% fit’. Although she tried to return to work on two occasions, she said lack of support and understanding by supervising staff and consequent legal proceedings led her to eventually resign.

These examples point to the enabling or constraining potential of the workplace to affect the lives of people with chronic pain. Research has highlighted a number of social environmental factors that can contribute to loss of employment, including attitudes of employers and lack of flexibility in employment arrangements (Nielsen 2009). The fluctuating levels of pain and incapacity that are often a feature of chronic pain can make work capacity difficult to predict and manage (Patel et al 2007). Ideally, therefore, employment policies and programmes should enable people with chronic pain to negotiate employment arrangements in ways that meet their changing needs and abilities (Crooks 2007). Initiatives such as increased flexibility and support within the workplace could perhaps transform this situation and contribute to a reduction in the social suffering experienced by people with chronic pain. This contention is supported by recent Australian research, which suggested that support such as job flexibility could significantly reduce lost productivity costs due to chronic pain (Access Economics 2007, p. 25).

The broader individual and social outcomes resulting from loss of employment are evident when the associated loss of income is considered. The financial impact of unemployment is frequently articulated by people with chronic pain (Nielsen 2009). The ongoing financial cost of having chronic pain, in terms of visits to health practitioners and accessing services or equipment which provides relief and aids functioning, can be an additional financial burden. For some people, loss of income due to unemployment means they cannot afford treatment or therapies which alleviate their pain. Catherine, for example, felt she was in a Catch-22 situation in that she was being advised by her GP and physiotherapist to stop working, but she needed an income to continue to afford services such as physiotherapy, which she believed decreased her pain and increased her functional capacity.

Research indicates that having a disability increases the risk of poverty and hardship (Saunders 2006), and identifies a link between chronic pain and lower socioeconomic status (Access Economics 2007). While loss of employment due to chronic pain may be seen as an individual crisis, lack of flexibility in employment arrangements and inadequate financial support for those receiving a government pension demonstrates the broader social aspect of the suffering that job loss can engender.

Loss of social and family roles

Living with chronic pain can also limit social activities, with a subsequent loss of valued roles in this domain. On one level, people with chronic pain may not feel physically able or comfortable to participate in social activities due to factors such as difficulty walking or sitting for any length of time, associated fatigue and medication side effects, or the all-consuming effort of managing their pain. This was illustrated in the earlier excerpt from the interview with Ron, when he described himself as ‘brain dead’ and ‘not a very good conversationalist’. Similarly, Beth described life in general as becoming ‘sort of non-existent’ after the onset of her pain:

‘For the last almost two years it’s just been working full time and managing my pain, seeing medical people. So I haven’t had a lot of social life. And even, like with the pain, it’s hard to drive sometimes. And because of my back I haven’t been able to go to the movies until recently because I haven’t been able to sit for two hours. So the pleasurable things in life sort of became non-pleasurable because of the pain that was involved.’

Lack of involvement in social activities can contribute to people becoming socially isolated. While in part this can be due to the mechanics of being in pain, it can also be related to what Hilbert (1984) has described as the ‘acultural’ aspect of chronic pain. When the search for restoration does not result in a cure for their pain, people find themselves experiencing pain they cannot understand, and which others in society do not understand or talk about. Chronic pain is not a problem that can be put aside to be dealt with later; it is, as Hilbert described it, an ongoing, ever present somatic reminder that ‘things are not as they should be:

‘At home, at work, and in their social life generally, sufferers are saddled with an insoluble dilemma, of paramount concern to them, in the presence of others for whom no such priority exists. This preoccupation further documents in sufferers’ minds their isolation and estrangement from the society around them.’

Only gold members can continue reading. Log In or Register to continue