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Breathlessness in cancer and chronic obstructive pulmonary disease: Using a qualitative approach to describe the experience of patients and carers

Published online by Cambridge University Press:  01 December 2003

SARA BOOTH, ,
STELLA SILVESTER,  and
CHRISTOPHER TODD
SARA BOOTH,
Affiliation:
Oncology Centre, Addenbrooke's Hospital, Hills Road, Cambridge, UK
STELLA SILVESTER,
Affiliation:
Oncology Centre, Addenbrooke's Hospital, Hills Road, Cambridge, UK Present address: London School of Hygiene and Tropical Medicine, London, UK
CHRISTOPHER TODD
Affiliation:
Health Services Research, University of Cambridge, Cambridge, UK Present address: School of Nursing, Midwifery and Health Visiting and University of Manchester, Manchester, UK
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Abstract

Objective: To investigate and document the effects of breathlessness on the everyday lives of patients with cancer and COPD and their carers. This subject has been little researched, although dyspnoea is recognized as a disabling, distressing symptom. The number of breathless people is increasing as patients with all types of cardio-respiratory disease live longer.

Methods: Patients with severe COPD and cancer and their carers were interviewed at home using a semistructured format to record their perceptions of the impact of breathlessness, the help they had received from medical and caring services, and their ideas on how these could be improved.

Results: 10 patients with COPD (6 male) and 10 with cancer (6 male) and their spouses were interviewed. All patients found breathlessness frightening, disabling, and restricting. Patients developed a stoical, philosophical approach in order to live with dyspnoea and the difficulties it imposed: this was also an important way of reducing the emotional impact of breathlessness. Patients' spouses suffered significantly, experiencing severe anxiety and helplessness as they witnessed their partners' suffering and felt powerless to reduce it. The restrictions imposed by breathlessness affected their lives profoundly. Support of all kinds, practical, medical, and psychosocial was highly valued but was provided inconsistently and sporadically. Where help was given it came most frequently from general practitioners (GPs, family physicians) and specialist respiratory nurses.

Significance of results: This study is the first to document the psychosocial needs of carers, which are not adequately recognized or addressed at present. Patients and carers may feel most isolated and need support outside the working hours of most services and future provision needs to reflect this. Patients with cancer experience a more rapid onset of breathlessness. More clinicians need to be educated in the management of chronic breathlessness so known helpful strategies are more widely employed.

Keywords

BreathlessnessLung cancerCOPDCarers
Type
Research Article
Information
Palliative & Supportive Care , Volume 1 , Issue 4 , December 2003 , pp. 337 - 344
Copyright
© 2003 Cambridge University Press

INTRODUCTION

Breathlessness is the most common symptom of chronic obstructive pulmonary disease (COPD; Edmonds & Karlsen, 2001) and it is also very common in advanced cancer of all primary sites (Reuben & Mor, 1986; Dudgeon & Lertzman, 1998). Breathlessness occurs in over 90% of patients with lung cancer and 50–70% of all cancer patients: It increases in incidence during the last 6 weeks of life (Muers & Round, 1993; Mercadante et al., 2000). Around 70% of patients with chronic nonmalignant lung disease suffer from severe breathlessness in the last months of their lives (Edmonds & Karlsen, 2001).

The numbers of people living with breathlessness associated with COPD and cancer is rising, reflecting increases in the survival rate in COPD, the age of the population, and the incidence of lung cancer. Both the prevalence and severity of breathlessness is underestimated—the SUPPORT study of general medical patients in tertiary referral centers in the United States (Desbiens et al., 1999) demonstrated that an equal number of patients reported pain and dyspnoea and that these two symptoms alone accounted for four-fifths of physical symptoms reported to be severe or moderately severe. There has been considerably more research and progress in the management of pain than dyspnoea (Banzett & Moosavi, 2001), and many patients with chronic breathlessness continue to have unrelieved symptoms (Higginson & McCarthy, 1989), even after referral to specialist palliative care services. There is evidence that the severity of breathlessness in cancer is overlooked, particularly where the lung is not the primary site: This may be because although pain is automatically associated with cancer, by clinicians and patients alike, it is not widely recognized that breathlessness has a comparable prevalence in people with malignant disease. In one recent study, 85% patients experienced pain and 78% breathlessness in the last year of life (Edmonds & Karlsen, 2001). Breathlessness is underreported by patients, who may tend to protect doctors, nurses, and other health care professionals from distress by selectively disclosing symptoms such as breathlessness that they sense will trouble the clinician (Robert et al., 1993; Heaven & Maguire, 1997).

Although a number of studies have examined patients' experience of breathlessness in COPD (Carrieri et al., 1984; Janson-Bjerklie et al., 1986; Williams, 1993; Leidy & Hasse, 1996), patients' experience of breathlessness in cancer has received limited attention. It is unclear how they compare. There is little research concerned with the effects of breathlessness on the next of kin or carers, although breathlessness is recognized as a disabling symptom and one that is frightening to witness. The present study was designed to investigate the experience of living with breathlessness in those suffering from advanced cancer or COPD and their carers, both to allow comparison of these potentially differing perspectives and to provide insights for future development of both clinical services and research.

The study was carried out in an area in which there were community palliative care teams (then accepting an increasing number of patients with nonmalignant disease) and respiratory teams. The latter are available to families in the community 24 h a day and 7 days a week for 2 weeks after discharge from an acute admission with COPD. Hospital support teams were beginning to be established at the time of the study.

METHODS

Patients with a coresidential carer were recruited from the oncology and respiratory medicine clinics of a university teaching hospital. Only those patients who were breathless at rest (3 or 4 on the modified MRC 4-point scale; Booth, 2001) were invited to take part. Ethical approval for the study was obtained from Cambridge Local Research Ethics Committee.

Thirty-eight patients were referred to the study between November 1999 and November 2000. Twenty-two patients had cancer and 16 COPD. In all cases the identified carers were spouses, except one, who was a friend.

Three cancer patients died soon after referral. Twelve patients were excluded for reasons such as reported reluctance or being too ill to participate, and one identified patient reported he/she did not feel sufficiently breathless to take part. One carer found the illness (COPD) too distressing to discuss. One cancer patient in the event did not have a coresidential carer and another was too breathless to be interviewed.

Interviews were conducted in the participants' homes by a social scientist (Stella Silvester, SS) to reduce any possible inhibition or bias associated with a hospital setting. Normally spouses and carers were interviewed separately. The exceptions were three couples where the patient had COPD. On two of these occasions joint interviews were necessary because accommodation was limited. One patient insisted on hearing her husband's interview.

The semistructured interviews focused on the experience of breathlessness and its effects on everyday life for patients and carers. We also asked patients and carers for their observations on and experience of treatment of their underlying illness and of interventions aimed at symptom management. All except one were audio taped and transcribed verbatim. This one interview with a cancer patient was only partially recorded because of equipment failure and was written up from notes made immediately after the interview.

Interviews started with an open question concerning the timing of the diagnosis and the events surrounding it; then a range of topics was discussed and pursued as they occurred in the interviewees' narrative. Our initial question framework was piloted with three patients (not included in the study) and the “prompt questions” reduced in number. We wanted to obtain accounts of the subject areas outlined above and anything else the participants wished to discuss in their own words.

ANALYSIS

Interviews were initially analyzed by SS using QSR NUDIST 4.0 software. A coding framework was constructed from categories suggested by the literature and from a theoretically based model of responses to illness proposed by Herzlich (1973). The interviews were analyzed and coded independently (Dr. Sara Booth, SB), and the coding framework extended to accommodate additional themes. Themes were then discussed and coded by exchange between all three authors (SS, SB, and Professor Chris Todd, CT). To test the validity of the data, initial findings were presented to patients attending a local meeting of the British Lung Foundation, whose comments were taken into account (QSR NUDIST, 1997). Patient quotations are drawn only from recorded fully transcribed data.

RESULTS

The recruitment of cancer patients was much slower than COPD patients. We found that the breathlessness experienced by cancer patients was not captured by the MRC scale and changed our approach and recruited any patients with cancer who described breathlessness as a problem for them.

Six of the 10 COPD patients and 6 of the 10 cancer patients interviewed were male. COPD patients were aged between 51 and 80 years (mean = 70 years). Cancer patients were aged between 51 and 77 years (mean = 63.5 years). Patients with a variety of tumors were included. Six had cancers affecting their respiratory system (primary and secondary). One patient had breast cancer, two non-Hodgkin's lymphoma, and one renal cell carcinoma. All the participants were Caucasian. On the whole, the longest interviews were with cancer patients (in minutes; cancer patients mean = 70, 95% CIs 59.7–79.7; COPD patients mean = 55, 95% CIs 45.9–64.9; cancer carers mean = 42, 95% CIs 32.1–51.5; COPD carers mean = 39, 95% CIs 31.8–46.8). The carer groups were not different from each other in interview length but were significantly shorter in length than those of the patients (one-way ANOVA F = 11.83, p < 0.0001).

The Experience of Breathlessness and the Fears Associated with It

Although no clear differences were discernible in the ways patients described the physical sensations of breathlessness, differences were apparent in the patterns of breathlessness experienced. Participants with cancer particularly mentioned the rapid onset both of individual episodes and of the descent into breathlessness:

I'd do 15 or 18 miles a day (walking) … strong, my breathing was good … it's an awful shock … suddenly you haven't got any breath … you just don't know where your next breath is coming from. It is weird, absolutely weird. (Female lung cancer patient aged 53, Interview 11)

Cancer patients also felt undermined by the lack of warning signs and the inexplicable quality of breathlessness. Such themes were not apparent in interviews with COPD patients.

It's weird … I can go for a walk … several hundred yards … breathless up to a point and yet … I like bend … and then I start the breathlessness. It's very unpleasant … suffocation. (Male lung cancer patient aged 59, Interview 18)

Both COPD and cancer patients described being overwhelmed by fear, sometimes “terror” during breathless episodes.

You don't think it's going to improve … the worst time … it woke me. And it was terrifying. (Male lung cancer patient aged 59, Interview 18)

Patients in both groups described breathlessness as having more far-reaching implications than their other symptoms. Cancer patients found breathlessness brought more uncertainty than pain and expressed anxiety about their ability to deal with breathlessness and what it signified.

As one woman said:

Will it get worse? … Will I get much shorter of breath? Can I manage it? Is something terrible going to happen? (Female patient with Non-Hodgkin's Lymphoma aged 68, Interview 13)

These fears, many said, made breathlessness more difficult to tolerate than pain.

At night, if the wrong things have popped into my head … worried … how long are you going to live …then you get breathless. (Female lung cancer patient aged 53, Interview 11)

Disability and Dependence

Both groups of patients reported they were very disabled and becoming increasingly dependent because of breathlessness. They described being limited in their ability to move around their home, to be self-caring, to maintain a social life, and to carry out normal household duties:

He's taking it all away from me … it's his kitchen … and I think your kitchen? But then it isn't my kitchen, he's doing all the cooking…. (Female lung cancer patient aged 72, Interview 12)

It's the silly things … not being able to carry the shopping … I was brought up in the Victorian school … the man always carries the bags…. (Male patient with Non-Hodgkin's Lymphoma aged 61, Interview 17)

One female patient named this as “role reversal” that was hard to accept:

I try not to let it be seen … it's this role reversal which I find very hard … once a Mother Hen always a Mother Hen. Do you ever see the chicks look after the hen? No, you don't. And I haven't been able to do it. (Female patient with Non-Hodgkin's Lymphoma aged 68, Interview 13)

In both groups increasing physical dependency brought about marked losses for patients in their family and social relationships, loses which they resented.

I can't go out and kick a ball with my grandson. (Male emphysema patient aged 77, Interview 1)

Cancer patients were particularly aware of “being a burden” possibly because disability had progressed rapidly. According to their reports, these limitations caused overwhelming frustration and sometimes led to depression. In some cases patients responded by hiding the extent of their breathlessness. Two patients with cancer felt that increased breathlessness might be a reason to give up.

I don't really want to continue the rest of my life if the breathlessness is going to get worse.… (Male patient with Non-Hodgkin's Lymphoma aged 61, Interview 17)

Responses to Breathlessness

Patients in both groups described how important it was to “fight” against their illness, to not “give in” or be “defeated.” One aspect of the resistance described was the development of a philosophical acceptance of symptoms—“Just be philosophical about it, it's the only way. After a very active life it is frustrating….” (Female emphysema patient aged 73, Interview 10)—in order to control them and contain the illness—“you don't accept it (breathlessness) but you live with it … learn to accept it.” (Male lung cancer patient aged 59, Interview 18). The ability to maintain a state of “calm” was cited as an essential skill in learning to live with breathlessness:

If you panic you make it worse…. (Female emphysema patient aged 51, Interview 5)

The only thing I do … I just try and be calm … I have to accept what's happened to me and what is happening to me. If I accept that I assume … I just try and keep it under some sort of control. (Female lung cancer patient aged 53, Interview 11)

It's getting your head in to gear first … stop and think … relax and breathe … It's not your last breath, it's not. If you just get your head into gear and just think, that's what they taught me anyway. It does work. (Male lung cancer patient aged 58, Interview 20)

The Limitations of Current Treatments for Controlling Symptoms

Patients reported that they felt that clinicians had very little understanding of what it is like to live with breathlessness. Patients indicated that clinicians' ability to manage the symptom varied between specialities and how effectively the patients was able to draw attention to their breathlessness. As two patients said:

[I] wanted people to take notice … I used to offer this information … I'm really quite breathless … they were probably more interested in the pain…. (Female patient with Non-Hodgkin's Lymphoma aged 68, Interview 13)

Maybe I expected someone to take more notice of this. (Female lung cancer patient aged 72, Interview 12)

Those with COPD who had had long-standing contact with the health care system attributed the failure of treatment to doctors' uncertainty, patient' own feelings of self-blame, and the ageism inherent in “the system”:

He'd [GP] probably think, oh well, she's getting old, she's got emphysema, ain't a lot I can do for her … when you get old they don't seem to want to spend too much time with you. (Female emphysema patient aged 71, Interview 3)

I suppose they think well, there's not a lot really that you can do about it. They can't cure. (Male COPD patient aged 79, Interview 7)

The clear link between COPD and smoking led some patients to report feeling undeserving of help. For patients with cancer it was more their feeling that breathlessness was ignored or considered secondary to other symptoms that reportedly concerned them.

Those patients who felt well supported were receiving help mainly from specialist respiratory nurses and family physicians. COPD patients valued an efficient system for repeat prescribing of their regular medications and easy access to a GP who could respond promptly to calls for assistance at home. Patients and carers valued the support given by specialist respiratory nurses, highlighting particularly the availability of nurses at home and over weekends and their ability to listen and provide detailed information about the nature of the illness, breathing techniques, and the effective use of medication.

Just to know there's somebody out there cares about you, what happens to you … he [GP] talks to me and calms me down … said he's only a phone call away, he's always willing to come out. (Female emphysema patient aged 62, Interview 2)

They were great … they sat and listened … and explained … tried to get to the bottom of things … tended to know more than just an ordinary nurse. (husband of emphysema patient aged 51, Interview 5)

Nothing's too much for them … they'll do or ask you no end of things you never thought of … and make them more comfortable. Before I came in to contact with those nurses I really didn't know what to do. (Male emphysema patient aged 77, Interview 1)

Carers' Concerns

Caring for a breathless person was, for many, preoccupying, restricting, and a major cause of anxiety (n = 15).

It's terrible to see it … and you feel so helpless, so useless, so useless, I don't know how you can help really. (wife of patient with mesothelioma aged 66, Interview 14)

Anxiety was reportedly particularly intense at night and linked to feelings of helplessness when spouses became acutely short of breath.

I thought he'd gone … it was terrifying really, it really is … you just don't know what to do, you can't do anything any way … you're just helpless aren't you…. (wife of emphysema patient aged 77, Interview 1)

Some carers described time spent simply listening to their spouse breathing.

I usually sleep with half an ear open … I put my life on hold … can't talk about free time…. (husband of patient with lung cancer aged 72, Interview 12)

There are times when I lay awake and just watch her breathe … I can do that for an hour … I'm frightened that I am going to lose her. (husband of emphysema patient aged 51, Interview 5)

DISCUSSION

The most significant new finding in this study is the severity of the difficulties experienced by the partners and carers of breathless patients. There is some literature on the effects of breathlessness on the lives of patients with COPD, most notably Williams' (1993) book, from which some of our areas for exploration at interview were taken. There is no work, of which we are aware, about carers for these two groups of patients. Since this study was conceived and interviews conducted Rogers et al. (2000) have published on the lives of those with advanced heart failure and the accounts of the relatives match the work here in many respects. What is clear is that, to date, relatives of patients experiencing breathlessness have been the invisible victims, listening, watching, waiting, and feeling powerless, helpless, and anxious. Although the experience of gasping for breath is undoubtedly dreadful, the experience of seeing your spouse doing so or anticipating them doing so is also awful.

Services at the moment are framed around the medical needs of patients—the delivery of acute care and medical treatment of symptoms. These are not always adequate to meet the needs of every person. It is, of course, essential to improve medical care, but this study reiterates that there is another dimension to care, the psychosocial, which has a major impact on the sense of well-being that patients and their families experience when living with a potentially devastating symptom.

Patients and their families learn that they must develop coping strategies and take what care they can obtain. Robert's group (Robert et al., 1993) showed that patients can discern, from the behavior of the clinicians who look after them, that nurses and doctors often feel ill equipped to help patients with breathlessness and so unconsciously discourage disclosure. In fact, although the medical management of breathlessness is imperfect and nowhere near as effective as the management of pain, there are strategies that have been shown to help the breathlessness associated both with cancer and COPD (Bredin et al., 1999; Lacasse et al., 2003).

The accounts of patients and their relatives here once again remind clinicians that the experience associated with advanced illness is mulitfactorial and can probably be helped most by a multidisciplinary approach—optimum medical treatment allied to excellent psychosocial care. The most recent research on the central imaging of breathlessness, reviewed by Banzett and Moosavi (2001), supports the idea that the “central processing” of breathlessness by higher centers (including those associated with thinking and feeling) are critical to modulating the severity of breathlessness. The perception of breathlessness also seems to be closely allied to the perception of pain (and other difficult symptoms) and the palliative care models of “total pain” derived from Saunders (1967) will work for breathlessness too. Using this model, the psychological and social aspects of symptom control are as important as excellent medical care.

In this work there was little difference apparent in the words used to describe the sensations of pain (in contradistinction to work by Wilcock et al., 2002), but the patterns of breathlessness described in the two conditions were very different.

The onset of breathlessness in cancer patients is much more rapid than in COPD and this leads to the experience being different, but equally distressing, for patients and families.

The breathlessness associated with cancer is often much more episodic. It is unpredictable and feels inexplicable and it seems that anxiety is a frequent trigger for attacks of breathlessness. Cancer patients seem to experience more anxiety, even panic, and this may be because increasing breathlessness is a portent that the illness is coming back (O'Driscoll et al., 1999), causing fear as it is reminds people that their life is shortened and that death may be near (Bailey, 1996).

Patients in both groups described enormous losses in their working and personal lives precipitated by the restrictions and limitations of severe breathlessness. In turn, these led to great feelings of frustration, tension, and anxiety that in themselves could trigger episodes of breathlessness (Bredin et al., 1999). People with cancer often have less time to adapt to breathlessness, as it develops more quickly and is accompanied by an immediately life-threatening illness. This may explain their high level of anxiety. Patients with COPD become breathless over a longer period of time and have frequent and extended contact with doctors and other clinicians. They have more time to adapt to their symptoms. With the gradual realization that their illness is a chronic one and that there is no medical therapy to reverse breathlessness, they develop their own ways to contain and manage symptoms. A stoical response that contains anxiety and controls breathing patterns is frequently used. These are similar to the approaches adopted in the management of lung cancer by nurses and physiotherapists that use breathing retraining and relaxation (Birks, 1997; Hately et al., 2003).

Specialist palliative care is not provided extensively for either of these groups of patients (O'Driscoll et al., 1999; Edmonds & Karlsen, 2001). Few cancer patients receive either medical or nursing assistance with their breathing (Robert et al., 1993) and there is evidence that clinicians, including those in palliative care, underestimate and so undertreat breathlessness (Nekolaichuk et al., 1999). Other research suggests that clinicians' discomfort with death and dying can affect the care received by patients with these symptoms (Steinhauser et al., 2000) and that symptoms that are difficult to treat are elicited only in a limited way. This will affect the quality of care that patients receive as the treatment instituted depends on the severity of the patients' complaints (Rogers & Todd, 2002).

If patients perceive that their symptoms may be discounted or relegated to second place after others such as pain, they will be less willing to bring them to the attention of doctors, nurses, and others caring for them. In addition if breathlessness is felt to herald death, these feelings of uncertainty and isolation may increase yet further.

Where psychological, medical, and nursing support is provided for patients with breathlessness, allowing them to discuss difficult feelings and concerns, there is evidence that depression and anxiety are reduced (Bredin et al., 1999). The accounts of patients interviewed in this study suggest that by providing prompt medical attention (day and night, every day of the week) and practical and emotional support for patients and families, general practitioners and, to some extent, specialist respiratory nurses are able to provide effective palliative care for breathlessness.

At present most GP practices and specialist nurses (in either respiratory medicine or palliative care) cannot, as individuals, provide the support in the long term that is needed 24 h a day, 7 days a week. Patients in this study frequently relied on one GP who knew them well. Such individualized care cannot be sustained for the large, and rising, number of patients with breathlessness in the population as a whole. In the area around the study hospital the specialist respiratory team offers a “supported discharge service” of care for up to 2 weeks only to its most severely affected patients after an exacerbation. Providing the required level of support in future will need increased resources and reorganization of present services, perhaps with greater cross-cover between respiratory, cardiac, and palliative care community and hospital teams liaising with GPs and district nurses, especially in remote or small communities where a specialist nurse for each disease group cannot be provided. A wider range of professionals (e.g., physiotherapists) could be involved in providing specialist support more widely in the community for patients with breathlessness. It is first necessary to listen to the concerns of these patients and their carers to identify what they and their families most urgently require (Rogers & Todd, 2002). Since this work was completed a project has been started “to model,” pilot, and evaluate the services that patients, carers, and the hospital and community clinicians want provided.

ACKNOWLEDGMENTS

We thank all of the patients and their spouses who gave up time to be interviewed for this study. Our thanks are due also to the staff from the departments of oncology and respiratory medicine, who facilitated their participation, and Mrs. Jacquie Adie, who prepared the manuscript. This study was funded by the NHS Executive Eastern Region.

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