The Experience of Breathlessness: The Social Course of Chronic Obstructive Pulmonary Disease

Article Outline

• Abstract
• Introduction
• Methods
• Results
  • The Onset of Breathlessness
  • First Contact with Health Providers
  • Back Home and Breathless
  • The Quest for Medical Help: Contact with Healthcare Professionals
  • Past and Present, But No Future
• Discussion
  • Limitations of the Study
  • Practice Recommendations
• Conclusions
• Acknowledgments
• Appendix. Evidence Quotations from the Interviews with COPD Patients and Caregivers
• References
• Copyright

Abstract 

Context

There is a trend toward extending palliative care to nonmalignant diseases. There is no evidence that chronic obstructive pulmonary disease (COPD) requires its own model.

Objectives

The aim of this study was to investigate how the experience of breathlessness in COPD influences patients' attitudes toward the end of life and their quality of life.

Methods

Eighteen patients were purposively sampled. Data were collected through in-depth interviews and participant observation during outpatient consultations. Narrative methods were used to analyze the data.

Results

Treatment-seeking in COPD deviated from prototypical trajectories. Contact with health care was postponed to crisis point. Treatment did not follow diagnosis because of how the diagnosis was given. Help was sought when the symptom had acquired meaning in a person's life. The future did not feature in the interviews.

Conclusion

Good communication practices are fundamental in the care for COPD patients. Particularly, diagnosis and prognosis need to be rethought in a model to suit the condition of COPD.

Key Words: Breathlessness, chronic obstructive pulmonary disease, COPD, health seeking, palliative care, communication, diagnosis, prognosis

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Introduction 

The most prominent symptom in chronic obstructive pulmonary disease (COPD) is breathlessness, which has been defined as “a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity.”¹ Breathlessness is experienced by patients and caregivers as a very distressing and frightening symptom. It is a very difficult symptom to manage.²

Despite the many needs of this patient group, several studies have documented poor service delivery currently available to COPD patients.³, ⁴, ⁵ In these studies, palliative care has been recommended as an alternative for the care that is currently being provided if this care does not meet the needs of this patient group.⁶, ⁷ This runs parallel with a development toward the promotion of palliative care for nonmalignant diseases.⁸ However, this has not been adopted by the main documents providing guidance on the assessment, treatment, and management of COPD. Recommendations on end-of-life (EOL) care are absent from The Global Initiative on Chronic Obstructive Pulmonary Disease guidelines, produced by the National Heart, Lung and Blood Institute and the World Health Organization.⁹ In the guidance for COPD developed by the National Institute for Health and Clinical Excellence (NICE), palliative care is a minor point.¹⁰

Palliative care has traditionally developed around the needs specific to cancer.¹¹ Perhaps the main principles also count for the management of COPD, but we should consider if we need to develop a model that is more attuned to COPD. One U.S. study examined the perspectives of patients with different conditions regarding important aspects of physician skill in providing EOL care.¹² The authors concluded that for each disease group, a unique theme was important in EOL care. Patient education was a theme that was particularly important for COPD patients. A later study using a questionnaire identified areas of communication that physicians do not address and areas that patients rate poorly. These included prognosis, dying, and spirituality.¹³ These studies did not aim to understand why patients found these areas important, when in the illness trajectory these needed addressing, and what the consequences were of not communicating about these issues. In this study, we used a qualitative research design to address these questions, as they need in-depth inquiry with attention to the context in which they are found important and in which circumstances they have an effect. These issues are of particular relevance to inform the care COPD patients need at the EOL.

This study aimed to investigate how the experience of breathlessness in COPD influences patients' attitudes toward the EOL and how it affects their quality of life. Questions that the study addressed were as follows: when do patients seek assistance from services, what do they receive, how is this interpreted, and what are the consequences of these contacts? Does this have an impact on how patients cope with the disease and what effect does this have on their outlook to the future?

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Methods 

The data were collected in the context of a qualitative study exploring the experiences of breathlessness among patients with advanced disease with different conditions (lung cancer, COPD, cardiac failure, and motor neuron disease) at different stages of their illness and in different care settings. The study took place in a large teaching hospital and in the community between July 2005 and March 2006.

This study was based on a purposive sample of 18 COPD patients selected according to the following inclusion criteria: breathlessness as a problematic symptom as part of the condition of COPD, and able and willing to communicate their experiences in an in-depth interview. The patients in this group were expected to provide a broad enough scope to explore the effect of breathlessness on patients' attitudes toward the EOL and their quality of life.

Patients were recruited from respiratory clinics at the hospital, specialist respiratory nurses' ward rounds and consultations, “Breathe Easy” service users meetings, and the disease registers of the primary care team in a family doctor's surgery. The severity of patients’ disease was specified according to the Global Initiative for Chronic Obstructive Lung Disease guidelines (http://www.goldcopd.com/).

Demographic data and clinical information about patients were retrieved from patients' records or specialist databases. Patients' letters also were used for this purpose (Table 1).

Table 1. Patient Demographics

We used semistructured, in-depth interviews. They were exploratory in the sense that they allowed respondents to touch on any topic relevant to them, but a topic guide was used to ensure that all the necessary topics were covered. The interviews were all conducted in the patients' homes, except for two interviews with patients from the community who preferred to have them in the researcher's office. They lasted between 40 and 150minutes. They all were tape recorded and transcribed verbatim, except for two where the recorder broke down, but these were reconstructed immediately after the interview. Participant observation was used at outpatient consultations. A notebook was kept to record field notes during the interviews or when events happened that were inappropriate to tape record.

Transcripts were checked for accuracy against recording. Narrative methods were used to analyze the interview material.¹⁴ The interviews consist of narratives recounted and ordered by the interviewee. The interviewer took on the role of the active listener and mainly followed the plot and interfered only where points needed to be clarified. Patients order their experience of illness as personal narratives, which give coherence to the distinctive events and long-term course of suffering. These stories reveal how patients interpret events or activities that punctuate their life. Here, we paid special attention to the structure of the narratives. We examined beginnings and endings, the sequencing of events, how coherence was achieved, where gaps occurred, and what it uncovered about patients' views on their illness and interactions with health care. NVivo software was used to manage the analysis of the data.

The study obtained ethics approval by the Local Research Ethics Committee and the relevant research and development committees of the hospital where the study took place and the community of Lambeth and Southwark. A patient and caregiver coding system ensured confidentiality throughout the study.

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Results 

In the patients' narratives, we could discern five phases in the illness trajectory and experience of breathlessness. These were the onset of breathlessness, the patients' subsequent consultation with a healthcare provider, the period of experiencing the disabling effects of breathlessness, a phase where medical help is sought, and a phase where patients retrospectively evaluated what they had gone through since the first symptoms of breathlessness. These phases emerged from both the content and the structure of the patients' narratives. Descriptive quotes may be found in the Appendix.

The Onset of Breathlessness 

When following patients' narratives of their experience of breathlessness in the context of the disease characteristics of COPD and of the care they received or sought, we could discern a phase in which they found out that there was something wrong with their health. This shows the nature of breathlessness at the onset of the illness as present but covert, insidious (see Quote 1).

This phase with the onset of breathlessness was followed in most cases by an abrupt deterioration of their condition. This was an alarming experience, which led most of them to seek medical advice (see Quote 2).

First Contact with Health Providers 

When patients consulted a healthcare professional about the incident, tests followed and a diagnosis was given. The impression this left with the patients was one of little significance. Their condition was labeled as emphysema as well as COPD (see Quotes 3 and 4).

In some cases, COPD derived its meaning from the association with other possible diagnoses. When cancer was excluded, all worries about the future or fear of death fell away (see Quote 5). In Quote 6, Mr. M looks back on this moment he received the diagnosis and evaluates it with the knowledge he acquired later on in the illness trajectory. He obtained more information about his condition not through communication with healthcare professionals but because he looked up the information himself in the literature (see Quote 7).

Back Home and Breathless 

Patients described daily life in terms of the symptoms and the ongoing physical decline that COPD brought them. This is how they gradually filled in the initial empty label that they had been given by their doctor. In Quote 8, Mrs. W described what it feels like to be breathless.

She explained the effort that goes into daily activities that are routine and go unquestioned by other people. In Quotes 9 and 10, Mrs. W and Mr. M describe quite similar efforts that go into routine activities.

The Quest for Medical Help: Contact with Healthcare Professionals 

The lonely experience at home with breathing problems started off a period of looking for treatment advice about the management of daily breathlessness, which would bring recovery. When the time of a consultation had arrived, the interaction with a healthcare professional did not bring the support that was expected. Time constraints to consultations and a lack of attention to the sort of problems COPD can impose on patients were barriers to the provision of information and acknowledgement of problems. Mr. and Mrs. S told a story of the building up of expectation before meeting the doctor; this could mean the end of a very difficult period. When the consultation arrived, they were left with unanswered questions, and disappointment followed when realizing that there were no new solutions for their daily struggles (see Quote 11).

Throughout their search for advice, the patients experienced problems accessing different types of services. Mr. M, who is active as a user representative on many committees and who had gone through all these phases of care-seeking, as he was in the advanced stages of COPD, had developed a critical view on services for COPD patients (see Quote 12).

Past and Present, But No Future 

It was only in retrospect, when the illness reached the advanced stages, that patients and caregivers realized what had been left out at diagnosis and that they could evaluate what was essential for them to know so that they could have made decisions that would have changed their life course (see Quotes 13 and 14).

Prognosis, if at all provided, had been limited to the mere mentioning that the disease was life limiting. When patients had developed severe COPD, prognosis was a recurrent concern for them and they increasingly confronted health professionals with requests for precise information (see Quote 15). Silence about the course of the disease led unnecessarily to feelings of neglect and disengagement from the side of services (see Quote 16).

At the same time, this led to the lack of the future in patients' narratives. When the interviewer probed how patients saw their future, she received an almost standard response. Patients did not think of the future further than the next day. They perceived the future as uncertain, and they did not prepare for what was to come (see Quote 17). One patient summarized what living with breathlessness meant to her: “Life just stops.”

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Discussion 

COPD patients' narratives of their experience of breathlessness take us back to the first signs of COPD, through the slow onset and worsening of their condition, to the stage where they endure more advanced problems. We found a recognizable pattern in the narratives in terms of content and in the structure of the stories. The structure of the narratives reflects a deviation from the expected health-seeking actions that are typical in the trajectory of chronic disease from onset through disruption and diagnosis to treatment-seeking. The structure that characterizes the narratives of COPD patients represents a social course of the illness experience, which is different from the natural course of the disease process itself,¹⁵ and this is influenced by the approaches that exist toward the condition in the social environment and medical institutions.¹⁶ We found this pattern in all 18 cases, and in spite of intensive analysis, no new themes were identified. In this sense, saturation was achieved, because at the end of the analysis, no new additional themes could be identified. As a result, although this was not a truly representative sample, the fact that these themes occurred across all cases suggests that they may be important across a wider group of patients with COPD. More research on the course of COPD would shed more light on this.

First, the stories attested to delayed help-seeking because of the nature of breathlessness in COPD and its marginality in the care system. People with a smoking history who had developed breathing problems associated deterioration of their health with cancer and not with COPD. It was only when a person was confronted with a crisis that denial was no longer possible and that one was forced to seek medical help. Tests were carried out to find an explanation for their discomfort. People returned home with a label referring to a collective basket of diseases or with alternative terms such as emphysema. The first word patients hear, such when receiving the label COPD is “chronic,” which implies a long-term and relatively manageable condition. Sometimes patients recall that they were informed of the life-limiting nature of COPD, but little significance was dedicated to this message in combination with the long-term impression of a chronic illness. They received an inhaler and were advised to stop smoking, which was expected from doctors and was, therefore, a meaningless message for many.

Once back home with the relief of not having cancer, life was resumed as usual. In the meantime, symptoms worsened and patients found out that inhalers are not effective for everyone. It was then that sufferers found out for themselves what breathlessness means: the daily troubles with breathing, impaired mobility, anxiety restricting them to home, and growing dependence with personal and household tasks. Patients started a quest for effective treatment once they realized the full extent of the symptoms and the deterioration of their breathing and functional ability. This proved to deliver little in terms of relief for their symptoms, disability, and distress. Toward the end of the disease trajectory, questions regarding prognosis became more pertinent. An uncertain prospect was presented to a caregiver by the specialist on a patient's last admission for an acute exacerbation: “There is nothing more we can do for him.”

The sequence of events determined by the course of patients' experience of breathlessness and their search for health care deviated in various respects from more prototypical health-seeking trajectories. Contact with health care was not established at the first signs of illness but postponed to crisis point. Then, because of the inadequacy of the diagnosis, treatment was not a logical consequence of this stage. Diagnosis, as it is currently provided, is meaningless to patients; they are given the composite label of COPD, among other alternatives, without associated knowledge of time line, consequences, or management. Neither was the terminality of the condition recognized. Only when the symptom had acquired meaning in a person's life was help for treatment and relief sought. The knowledge built up over time, through personal experience and without much expert advice, led patients to revise the past: they reevaluated the moment of diagnosis and identified issues that had been left unaddressed at that time. They found full disclosure of the nature and course of illness crucial in the management of breathlessness. In this advanced stage, questions concerning prognosis became pertinent to patients and they recognized this as a necessary part of diagnosis.

COPD remains at the fringes of public awareness throughout the disease trajectory. This leaves patients, even in the final stages of their illness, ill-prepared for what is to come. They hardly, contemplate the future, and it is limited to questions about the length of time that is left to them. Patients state that they only live today and they have not made any plans for future care.

Limitations of the Study 

The interviews expressed patients' memories of what had been offered in terms of health care. Apart from the participant observation, which gave a feel for the way outpatient consultations work, we cannot verify whether patients were not provided with more information than what they claim to have received. Maybe patients did not take the information in at the time the doctor communicated the prognosis. This needs further research with methods specifically designed to investigate doctor-patient interactions. However, the finding that physicians do not communicate effectively about prognosis with COPD patients is confirmed by other studies that show that general practitioners in the United Kingdom do not routinely discuss prognosis with COPD patients.¹⁷

Practice Recommendations 

This study highlighted the lack of communication about fundamental issues of the disease. More specifically, it showed the importance of an adequate diagnosis and prognosis on the way patients cope with the illness and their quality of life. Palliative care that has been developed in cancer provides the basic principles for care in other diseases that do not have a cure.¹¹ The expertise developed in the communication of bad news ¹⁸, ¹⁹ could be adapted to the specific issues COPD patients have to cope with.

The narratives suggested four important issues in improving communication in prognosis. First, patients indicated that prognosis needed to be given much earlier in the illness, as part of diagnosis. Depending on what the patient was prepared to discuss, these could be integrated and help the patient and caregiver to manage symptoms and make active decisions regarding treatment and future care. Second, this makes the doubt about the right moment to consider the future less problematic, and a step-wise approach within a care model designed for regular surveillance could be developed. Third, the focus on the length of survival should be reconsidered. This concern may have developed from the way prognosis is approached in cancer care, where illness progression is more predictable. Prognosis may need a different orientation given the uncertainty of the time of death. The amount of time a patient will live is only one part of prognosis, and discussion about the nature of the condition and its main symptom, breathlessness, as well as the opportunities for adequate care, is equally important. Fourth, uncertainty does not necessarily need to be an obstacle in discussing prognosis but can be used strategically to enhance understanding of the disease and the aim and benefits of palliative care, as well as to facilitate patient involvement. Uncertainty with respect to length of time could be an opportunity to change the perspective away from quantity toward the quality of life, which is more consistent with the palliative care approach and concurs with the view some of the patients expressed in this study.

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Conclusions 

The general lack of knowledge about a condition such as COPD and its main symptom of breathlessness disturbed the expected order of actions to realize effective treatment-seeking and coming to terms with physical symptoms, psychological symptoms, and social problems. This added to the daily suffering of patients with COPD and those who care for them and led to the silence around patients' futures in the interviews.

Good communication practices were identified as fundamental in the care of COPD patients. Particularly, the areas of diagnosis and prognosis need to be rethought in a model to suit the condition of COPD. Specific elements in the communication of prognosis are highlighted from the evidence: 1) integration of diagnosis with prognosis as early as possible; 2) a step-wise approach throughout the illness trajectory within a frame directed to surveillance; 3) a holistic and patient-centered approach to prognosis, with survival not necessarily as priority; and 4) recognition of uncertainty with a focus on quality of life.

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Acknowledgments 

The authors thank Cicely Saunders International for funding this research and also thank Emma Camplejohn for her administrative support throughout the study.

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Appendix. Evidence Quotations from the Interviews with COPD Patients and Caregivers 

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