Access to Services for Patients with Chronic Obstructive Pulmonary Disease: The Invisibility of Breathlessness

Article Outline

• Abstract
• Introduction
• Methods
• Results
  • The Nature of Breathlessness
  • Stigma
  • The Response from Services
  • Negative Cases
• Discussion
  • Limitations of This Study
  • Practice Recommendations
• Conclusions
• Acknowledgments
• References
• Copyright

Abstract 

The aim of this study was to explore the experience of breathlessness in patients with chronic obstructive pulmonary disease (COPD) through patients' accounts of their interactions with services. The study has a qualitative design based on Grounded Theory. Data were collected through semistructured, in-depth interviews over the period of July 2005 to March 2006. This was complemented by participant observation during outpatient consultations. NVivo software was used to manage and analyze the data. The study is part of a wider program, “Improving Breathlessness.” Data were collected in a large inner city teaching hospital and the community in London. A purposive sample of 18 COPD patients was selected. Fourteen patients were recruited from outpatient clinics in the hospital, four patients via a family doctor's surgery. Patients with moderate or severe COPD, who were experiencing problems with breathlessness, were included. The results showed that the low access to services by COPD patients is due to the nature of breathlessness itself, with its slow and surreptitious onset; patient interactions with the social environment assigning stigma to breathlessness; and the way the symptom is addressed by institutions, such as health care services, which discredit the patient's experience. The concept that best captures the experience of breathlessness is “invisibility.” Problems with access to care are an additional dimension of suffering added to the illness experience. A palliative care approach is promoted and essential priorities identified to reduce barriers to access.

Key Words: Breathlessness, chronic obstructive pulmonary disease, access to services, palliative care, invisibility

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Introduction 

Chronic obstructive pulmonary disease (COPD) is a progressive illness for which there is no cure. This condition is a leading cause of morbidity and mortality worldwide, and age adjusted mortality continues to rise while it is decreasing for other leading causes of death.¹, ² Patients with COPD suffer a gradual decline in health over the years, with a considerable symptom burden and slowly deteriorating lung function. The most prominent symptom in COPD is breathlessness, which has been defined as “a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity.”³ Breathlessness is experienced by patients and carers as a very distressing and frightening symptom.⁴, ⁵, ⁶ It is a very difficult symptom to manage.⁷

Studies of COPD patients' experience of care have documented poor service delivery.⁸, ⁹ A retrospective study of COPD patients' unmet needs showed that people in the advanced stages of the disease and experiencing severe morbidity only had limited contact with services in their last year of life, and lacked surveillance.¹⁰ Patients in the advanced stages of their illness who had become housebound, with high levels of morbidity, required community health services. However, respiratory nurse specialists were rarely involved in patients’ care. This study showed that systematic review of these patients or structured care was uncommon. This confirmed the findings of an earlier study that existing service provision was geared toward the management of acute exacerbations, rather than regular follow up from palliative and supportive care.¹¹ A study comparing patients with severe COPD and lung cancer provided evidence of their equivalent needs; COPD patients were not aware of the specialist palliative care services that were available to lung cancer patients, nor were these offered to them.¹² These studies suggested that COPD patients had palliative care needs that remained unaddressed, as these were not directed to patients with this condition. They had information needs about social benefits and illness management, symptoms that went unrecognized, and they required more holistic and patient-centered care, which was not available to them. The SUPPORT study found that COPD patients were more likely to die with aggressive medical intervention directed toward survival and less likely to receive palliative services than patients with lung cancer.¹³ These studies showed that patients with COPD had high needs but that their use of services was very low.

The purpose of this study was to explore the reasons for the disparity between the high needs and the low service use typically reported for breathless patients with COPD and their carers. The research question addressed what the dynamics are between patients and services that are responsible for the barriers experienced in accessing services.

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Methods 

Data were collected in the context of a qualitative study exploring the experiences of breathlessness among patients with advanced 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, in London, between July 2005 and March 2006. Ethics approval was granted by the King's College Hospital Local Research Ethics Committee and by representative bodies (the hospital and community research and development committees) in the boroughs in which the study was carried out. The data were anonymized.

Patients with a diagnosis of COPD who were experiencing daily problems of breathlessness were included. 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 pulmonary disease (GOLD) guidelines.¹⁴

The sample was selected purposively, which is case oriented in qualitative research as opposed to variable oriented in quantitative research. We asked patients to participate who were able and willing to communicate their experiences in a lengthy interview, to maximize understanding of how they experience breathlessness and care toward this symptom. This sampling strategy allows balancing of the richness of the data with the relative representativeness of the sample.

Consenting patients were interviewed at home, except for two patients, who preferred to be interviewed in the researcher's office. We conducted a total of 18 interviews with patients, of which four were conducted together with their carers. We included them in the interview when both patient and carer wanted this. We considered them as carers when they were introduced as such or were referred to as carers. Interviews lasted between 40 and 150minutes, with a mean of 65minutes. They were in-depth and semistructured; a topic guide was used as an aide-memoir, following a number of broad themes, ensuring that all the relevant topics were covered (Table 1).

Table 1. Topic Guide

All were tape-recorded and transcribed verbatim, except two, which could not be recorded for technical reasons. During these, detailed notes were taken and written up immediately after the interview. Discussions with participants that were not recorded, for example, what they told the researcher after the interview, when the tape recorder had already been switched off and the participant took up one of the topics again from the interview, were also written down afterward.

In this study, participant observation was used. This means that the researcher is present at the main activities of the group she studies; she observes and enquires about issues that she wants to understand. The researcher was a participant observer in 15 consultations with health professionals that the patients visited and in the Breathe Easy meetings she attended, where she recruited some of her patients. Field notes were kept of nonverbal aspects (e.g., body language or tone of voice) and in situations in which it was inappropriate to tape record, which provided additional data to the more theoretical insights being generated. Data were collected until a point of saturation was reached, that is, when no more new information emerged from the data, and no additional insights were generated.

Interpretation of the results was made from a Grounded Theory perspective,¹⁵ which aims to discover hypotheses about a phenomenon by grounding them in data, especially in practical interactions and social process. This analytic framework was chosen as it concerned a little investigated area that needed to be explored. It also offered systematic procedures of data gathering and analysis, built on procedures of increasingly more detailed coding and linking of data. The texts of transcribed interviews and discussions were read and coded in several stages. Sections of texts relating to particular topics or themes were labeled and related to each other and to the observational data, giving rise to more abstract generalizations. This process of constantly integrating categories and their properties, or constant comparison, made it possible to go beyond common sense reporting of respondents' categories and allowed the findings to become relevant at a more theoretical level. This was facilitated by use of the NVivo software program. During the analysis, the interviewer (MG) scrutinized the texts for implicit meanings expressed in subtle turns of phrase or choice of words. Although this has the disadvantage that these interpretations were colored by the subjective view of only one individual, she was in the best position to do this as she had been present during the interviews and had made notes of facial expressions, body language, etc., that accompanied the verbal expressions that were recorded and transcribed.

Accuracy of the data was verified in various ways. First, the data from the interviews were triangulated with data from participant observation in consultations between health professionals and patients. We identified outlier cases that deviated from the common picture of care that the other COPD patients described (see Results). We included these cases in this analysis as they provided additional evidence for the perceptions of, and responses toward, breathlessness, and the barriers to care they experienced. When submitted to additional coding, the reasons for their outlier status became clear. This is reported in a separate paper. We also present direct illustrative quotations from the data.

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Results 

The sample consisted of 18 COPD patients; of the 16 patients recruited from the hospital, 14 agreed to take part. Thirty-six invitation letters had been sent to patients in the community to which eight responded. We only interviewed four of the responders, as the ethics committee requirements specified we could not contact the people we had invited if they had not responded. The other four who were not interviewed responded a lot later, and for logistical reasons, they were not interviewed. Demographic data and clinical information was retrieved from patients' records, or specialist databases (Table 2).

Table 2. Demographic Details of Patients

CNS=Clinical Nurse Specialist.

Patients' accounts of their experiences of breathlessness referred to three domains: the nature of breathlessness, their social interactions, and the response from health services. The nature of breathlessness refers to how the symptom presents itself to patients, its physical manifestations, and how it shapes the patient's experience of it. We looked at the particular times patients became aware of their breathlessness, the times it appeared and disappeared, and how that influenced patients' perceptions of it. We found that that had an impact on their ideas about its cause and severity. Social relations determined how patients experienced their breathlessness. They learned that suffering from breathlessness often evoked negative reactions, such as disapproval, that it was stigmatized. Their attitude toward the cause of their suffering, their actions toward the symptom's appearance in the presence of others and its consequences were identified. The theme of the response from health services covers the problems that patients experience when seeking help for their breathlessness. We looked at service providers' knowledge of the condition and its symptoms, their advice, and interactions with patients. We also focused on the care systems in place to respond to COPD, and when and how these addressed the problems caused by breathlessness.

The Nature of Breathlessness 

The symptoms of COPD did not immediately manifest themselves in their full seriousness. A cough or mild breathlessness could be attributed to smoking and was not seen as signaling a more serious condition. People were not aware about the condition COPD, and that it could be caused by smoking.

Breathlessness, especially in the early stages, is a symptom that was felt by the sufferer alone; it was not observable by others. The onset of COPD is a slow process.

Mr. D: Well it affected me but I didn't realize, I just didn't put it down to anything in particular. It's just a natural progression, each day was the same as the day before; I mean unless you ran up a hill or ran for a bus, I think psychologically I stopped doing that.

Breathlessness was present, but covert, insidious. People easily adapted to its restrictions as these were silently accepted in everyday routines and conveniently explained away when required. The unwelcome thought of bad health could be put aside by denying its warnings.

Because breathlessness did not manifest itself as a category that is usually presented to the doctor, patients did not mention it when they eventually went for professional advice. Patients present their symptoms according to what they think is going to make sense to medical professionals. As the patient below described, he was never prepared to relate his breathlessness to dancing and speculate about how this already not so serious activity seemed to mysteriously trigger his breathlessness. This illustrates how patients could perceive of their problems as not legitimate.

Mr. D: If I went to a party people would say: “Oh come on, let's dance, its New Year's Eve,” and I'd say, “No I don't want to dance,” they'd say, “Oh come on, don't be so boring,” coz I used to love dancing. I said: “No it's not worth that, we'll dance for five minutes and I'll be sitting down for the next hour, so I'd rather just sit down and watch you dancing.” So it's gradually, little things were in my head but not enough to go to the doctor. You can't go to the doctor and say “I can't dance.” It's a strange thing to say to the doctor.

Even when patients had developed severe COPD and had become very disabled, breathlessness was hardly detectable when they were at rest. A carer told about the treacherousness of the condition. She described how her husband appeared to be all right when at rest. An outsider would not suspect how disabled he was, not even capable of getting up to go to the bathroom without his oxygen and nebulizer, she concluded “His appearance belies his condition.”

Breathlessness is elusive due to its subjective nature. It is influenced by a range of other symptoms and emotions. This makes it into an inexplicable experience. Patients spoke about how breathlessness could suddenly come up and then again disappear, for which they could not find a reasonable explanation. Its presence was often not related to exertion and it could coincide with events that were rationally not possible. Patients spoke about its mysteriousness, how it was uncontrollable sometimes, but did not show itself under particular circumstances. One lady told how puzzled she was as to how she could become breathless at any unexpected time, except for when she was driving. Another person was free from breathlessness when dancing, however, almost not capable of doing her errands in the supermarket around the corner; she needed to hold on to the trolley and often had to walk home with it as support.

Stigma 

Breathlessness was experienced as shameful, both in terms of its effects and because it could be perceived as self-inflicted, and patients feared the reactions from their social environment.

The patients' accounts showed that the signs of the condition were socially unacceptable. They described their embarrassment when becoming breathless in the company of friends, which made them retreat to a place where they could be alone. They felt uneasy showing how dependent they were on the devices that helped them breathe. They also mentioned the coughing and the phlegm they needed to bring up as part of controlling their breathing, which was experienced as anxiety producing. This could lead to avoiding contact with the outside world:

Mr. D: …but sometimes I think well, why do you want to sit down on walls every five minutes, breathing in and out. People come and say: “Are you alright dear, can I help you?,” I say: “No I'm fine thanks,” “Are you sure?,” [I] say: “Yeah.” So I think well, just get a taxi and it'll drop you outside the house, no people coming out of houses, nobody asking questions and no feeling exhausted when you get in.

This may leave patients feeling responsible for one's own ill health, which can have serious consequences. In the case of Mr. and Mrs. F, even financial help is seen as improper, as stigmatized compensation:

Mrs. F: …attendance allowance [compensation for informal carers], that is another benefit that we could claim but we wouldn't. He doesn't think that anybody should be paid to look after…

Mr. F: You don't claim for someone who's not coming here, do you?

Mrs. F: No, a carer be it husband, wife, brother, sister they can claim attendance allowance for a person who requires attention day or night. But no, he refuses to claim any benefits at all.

Mr. F: There's far too many scroungers, that's why the health service's in such a state.

Mrs. F: We got the form, I filled it all in and…he wouldn't sign it and that's his prerogative. He's very old fashioned in thinking that you should earn your crust, if you're able bodied you should go and work, if you don't need any help then you don't need it.

The Response from Services 

When patients sought help for their worsening symptoms, they experienced great difficulties with access to health care services. Mr. S described an occasion where his family doctor visited him at home. When she noticed he was a smoker, she lost all interest. Recounting another bad episode illustrated both the helplessness from the family doctor in the face of this symptom, as well as the impossibility of accessing care. This showed the lack of knowledge for the relief of breathlessness and the inadequacy of referral when this happened.

I felt so bad, couldn't breathe, had to sit down, couldn't walk from here to the door. I went to the doctor [but] she didn't know what to do with me, so she said “OK, get yourself into casualty, you have to go to hospital and casualty is the only way to get into the hospital.” So all right, in casualty. There, they look at me, [they ask] “What are you doing here?” [They] don't want to admit me. [When] I'm back here, with a prescription for antibiotics, she comes in [and asks] “Why are you not in hospital?” [I answer] “Well tell ME!”

When patients eventually saw a doctor, the interaction did not bring the support that they had hoped it would bring. 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 helpful information, and acknowledgement of problems. They talked about consultations as missed opportunities, which we observed, is due to the nature of the consultation, which is brief and after all a social encounter. Patients are easily distracted from what they have come for when meeting the doctor; their priority is to keep the consultation an appropriate interaction.

…I got a car to the doctor's and walked in, it was a sunny day and I just felt very depressed. […] I felt sad but he said “But you're here in very good form.” I said “Yes, thank you very much, bye doctor” and all smiles, what a nice man. And [I] left to walk to the bus stop and by that time, I was out of breath and exhausted. And I thought “Ah, I remember why I was depressed, getting out of the car to the doctor's was quite easy, but then after the surgery, real life kicked in…”

This same person was surprised by the lack of understanding from his family doctor about the disability that COPD can cause:

…and he said to me: “Where do you work?” I said “Work…?” He said: “What do you do for a job?” I said: “Well, nothing doctor.” He said: “What do you do for a living?” I said: “Nothing.” And then I left. I thought what a silly question to ask me, “What do you do for a living?” And he said: “Why do you live downstairs?” and I said because it saves going upstairs. And then afterwards I thought, […], he's seen emphysema on the screen [of his computer] but didn't realize the full extent of it. I mean, there's no way I could get a job or could go to work.

At the point that disability was such that adaptations were needed to allow carers to manage the care of the patient at home, families discovered that help from social services was not to be taken for granted. There were many stories about the problems they went through to obtain support or appliances. They described the procedures as difficult and time consuming because of the bureaucracy they had to go through. Only those who were persistent or who were assisted by someone who acted on their behalf were successful.

The following quote characterizes the care provided to COPD patients as a participant explained the reason for a visit from community services:

Mr. M: We had the district nurse come down… Over a period of three years, I've seen her four times. And the last time we saw her, was when the chap next door had cancer, and she was coming in more or less every day to him. When he passed away and she wasn't needed, she said: “Oh, while I was passing, I thought I'd pop in and see how you are.” But that was all. In other words, you don't get a lot of help: [they look at you and conclude] “OK, you look alright,” that's it.

Negative Cases 

We identified five cases that partially challenge the accounts of the people on which we have based our analysis, as they reported an acceptable level of well-being in their lives. However, on closer inspection, they support our key conclusions by confirming that they, too, were familiar with the problems due to invisibility around COPD and breathlessness, and by showing how they had managed to transcend the obstacles that the patients in this study struggled with. This group of “copers” is the subject of a separate paper.

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Discussion 

The metaphor that captures the experience of breathlessness in COPD patients is invisibility. Breathlessness is invisible in these data in three different ways. First, it is invisible by its very nature throughout the illness trajectory. At the onset of illness, it is hardly noticeable and it develops gradually so that people easily adapt to its restrictions. Even in the advanced stages of illness, when people have become severely disabled, breathlessness can remain disguised when the patient is at rest, but it manifests itself at the slightest exertion. Second, breathlessness is invisible in the sense that patients try to keep it hidden from others. It is evidence of a past of heavy smoking. Gasping for air, irresistible episodes of coughing, which may be accompanied by bringing up phlegm, are experienced as socially unacceptable, and sufferers prefer to stay inside rather than attract attention in public. Third, breathlessness is invisible because of the nonresponse from services. The interviews attest to difficulties with access to medical assistance, lack of advice on the symptoms' management, and a limited offer of effective treatment.

A combination of these three kinds of invisibility shapes the experience of breathlessness in COPD, establishing a pattern of lack of support for patients and families.

A needs assessment for COPD already described patients as “invisible” until they had an acute exacerbation.¹¹ However, invisibility has never been analyzed to uncover the range of conditions and consequences that relate to the concept.

A period of surreptitious onset of breathlessness in COPD can lead to delayed help seeking, which is due to the general unawareness¹⁶ about the disease and its main symptom. Breathlessness has always remained at the margins of medical attention as research is complicated by its subjective elements, which resist measurement. Patients are discouraged from seeking help, as their complaints do not fit easily into traditional medical categories. They do not present their daily problems to doctors, who tend to focus on objective somatic processes. For patients, breathlessness can be experienced in unexplainable ways that they are reluctant to share with health professionals as these can be perceived as futile, contradictory, improbable, and as not real, and, therefore, not legitimate. The elusiveness of breathlessness to clinical assessment¹⁷, ¹⁸ plays a role in the discrediting of patients' experiences.

Moreover, patients feel they are held responsible for their suffering when they are confronted with the disapproval of practitioners when they continue smoking.⁹ But this is not limited to medical settings. In much of social life, they are faced with similar judgments. One person had already interiorized the stigma attached to the condition and prevented even his partner from applying for a carer allowance.

COPD patients learn that access to services cannot be taken for granted. Patients discover that they are not the only ones who do not know how to manage breathlessness.¹⁹ In consultations, practitioners ask patients to try out new inhalers, and provide leaflets for stop smoking clinics. They do not see the depression behind the patient. The patient is distracted from his problems for a moment as part of his participation in a social encounter, or skips some of his questions to keep within the time limits of the consultation. Then he leaves the surgery and realizes he missed another opportunity to access care. Once again, patients are confronted with unawareness of the complexity of breathlessness, the disability it can cause and the deceptiveness of their appearance when applying for support from social services. The endless waiting for appliances, being turned down by bureaucracy, proves to be another disaffirming experience.

Despite the high needs of COPD patients suffering from breathlessness, their attempts to obtain help from services are often unsuccessful. The barriers they face are due to the way in which the symptom manifests itself, slowly affecting patients through the years in ways that do not initially warrant consulting a doctor. Denial is possible due to the general unawareness of the condition. Stigma around breathlessness acts as an additional barrier to help seeking. Responses from health and social services disaffirm patients’ experiences of breathlessness, which discourages them from presenting their problems. The low level of expertise regarding this complex symptom can lead to failure to assess or recognize it. But even if it is recognized, there is little knowledge of how to provide effective relief.

Limitations of This Study 

Given the small sample size and the exploratory focus, it is not possible to generalize the results of this study. The selection process may be biased; some patients may have been invisible even to our study. However, the insights into the interactions between patients and services point to important aspects of care provision to COPD patients in other settings.

Practice Recommendations 

A palliative care approach is now gradually being promoted to encompass nonmalignant conditions such as COPD.⁸, ¹², ²⁰, ²¹ This study provides additional evidence to adopt this as an alternative to the care that is currently available for this patient group. This approach contains several principles, which could prove effective in dissolving the barriers to accessing services for COPD patients with breathlessness.

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Conclusions 

This study identified some of the reasons for the low access to services by COPD patients. The way in which breathlessness manifests itself, the manner in which it is addressed by health services, and the nature of interactions with the patient's social environment, all contribute to turning breathlessness into an invisible symptom. This influences patients' experiences and treatment seeking and determines patients' outcomes.

The surreptitious onset of breathlessness in COPD can lead to denial and this, in turn, leads to delayed help seeking. This is due to the general unawareness about the disease and its main symptom. Patients blame themselves for their breathing difficulties, and they receive disapproval for smoking from society and medical professionals. This is one of the contributing reasons for the preference to keep their problems to themselves. Health and social care services do not address breathlessness adequately, failing to recognize it as a serious problem that deserves help, which discourages patients to impart their complaints as they experience them. Services lack the expertise of how to provide care for this complex symptom and, therefore, it is often left untreated. These problems with access to care constitute an additional dimension of suffering added to the illness experience.

The incorporation of the experience of breathlessness in COPD in a palliative care approach would contribute to solving the main problems by (1) conducting research into effective management of breathlessness, (2) recognizing the validity of patients' lived reality in a holistic framework, (3) enhancing public and professional training and awareness to challenge ideas about responsibility and health and, 4) facilitating patient participation through education.

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Acknowledgments 

The authors thank Emma Camplejohn for her administrative support throughout the study. The first author had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. MG conceived the study. IJH contributed substantially to the design of the study and to all the procedures of gaining ethics permission. MG drafted the manuscript. IJH revised it critically for important intellectual content. IJH read and approved the final manuscript.

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