Chapter 7

Patient and carer experience of breathlessness

Ann Hutchinson

Hull York Medical School, University of Hull, Hull, UK.

Correspondence: Ann Hutchinson, Hull York Medical School, Hertford Building, University of Hull, Cottingham Road, Hull, HU6 7RX, UK. E-mail: hyah6@hyms.ac.uk

Chronic breathlessness is a common symptom of cardiorespiratory conditions and cancer (covered in another chapter of this issue of the Monograph [1]) and has wide-ranging effects on the lives of people who live with it and of those who care for them (also covered elsewhere in this Monograph [2]). The considerable qualitative literature of patient and carer experiences of breathlessness due to COPD and heart failure demonstrates that this symptom not only imposes considerable physical limitations but also results in psychological distress, changes to social relationships and existential concerns [3, 4]. There is a clear need to raise the profile of breathlessness as a therapeutic target in its own right to ensure that it is assessed and managed effectively, recognising the wide-reaching effects that breathlessness has. The experience of breathlessness described in this chapter is contextualised with reference to the model of quality of life (QoL) from RAPHAEL et al. [5] and the concept of “total dyspnoea” [6].

Disability, dependency, QoL and breathlessness

Breathlessness greatly affects the QoL of both patients and carers. QoL has been defined as “the degree to which a person enjoys the important possibilities of his or her life” [5]. One model of QoL encompasses the three domains of Being, Belonging and Becoming, each domain having physical, psychological, social and spiritual dimensions [5]. Thus, health is not merely the absence of illness but encompasses existential possibilities valued by people: being able to manage daily activities and cope mentally, belonging to family and community groups, and becoming what is important to them by being able to pursue their own goals. The model is derived from the work of philosophers in the phenomenological tradition such as HEIDEGGER [7] and MERLEAU-PONTY [8] who argue that, as our body is the basis of our interaction with the world, “being able to” carry out our activities and projects in the world is central to our view of ourselves, without which we can feel lost and useless. Thus, living with breathlessness can affect whether we see ourselves as “being able to” or “not being able to” and can affect the quality of our existence as a whole.

The QoL of both patients and their carer can be severely affected by breathlessness [9]. Disability caused by breathlessness and restriction of activities that make life meaningful can result in feelings of worthlessness and loss of self-respect:

“Well basically it’s all gone [referring to QoL] . . . I was a dancer, I can’t dance, I was a singer, I can’t sing and I used to play sport. In fact I can’t have a bath by myself now. The quality of life that you see is gone, so now I’m in my bed, I’ve got a laptop and things around the bed, but that’s it, just watching everything go.” [10]

This model of QoL is particularly applicable to the experience of chronic breathlessness, as its structure has much in common with the concept of “total dyspnoea”, both of which take into account physical, psychological, social and existential aspects and can be used to describe fully the experience of breathlessness.

Total dyspnoea

Chronic breathlessness not only affects people’s physical abilities but also can cause psychological and existential distress, and thereby dramatically alter the QoL of both patients and their carers. Rather than focusing on the physical signs of breathlessness, breathlessness can be better understood when considered as “total dyspnoea” [6]: a subjective experience with physical, psychological, social and existential dimensions. This approach to breathlessness is modelled on the concept of “total pain” pioneered by SAUNDERS [11], and is an example of the biopsychosocial approach pioneered by ENGEL [12]. The concept of “total dyspnoea” allows us to see the wide-ranging effects that breathlessness can have on a person and their family, from limitations in physical activity, disability and dependency to changes in their social relationships and the consequent psychological and existential distress caused by these losses and restrictions. This framework of “total dyspnoea” will be used to describe in detail the wide-ranging effects breathlessness has on the lives of patients and carers.

Physical effects of breathlessness

“The worst thing I think is the stairs, going up and down the stairs. Ordinary household chores I find difficult. Very restrictive, because of your breathing. And now of late . . . even simple things like having a shower and getting dressed.” [13]

Chronic breathlessness, irrespective of underlying cause, makes engagement in physical activities such as walking, lifting and climbing difficult. Physical activity is involved in many activities of daily living, such as walking to the shops, preparing meals, bathing, cleaning, gardening, working, performing hobbies and socialising. Therefore, a reduced ability to be physically active has major implications for the breathless patient and their carer.

Patients describe the increasing restriction of their daily activities as a result of breathlessness, becoming increasingly disabled and dependent on others for help and support. This curtailment of the ability to carry out activities of daily living results in dependency on others, which can be difficult to come to terms with.

An ethnographic study of Canadian COPD patients [14] found many examples of disability due to breathlessness. These included not being able to mow the lawn, carry heavy bags, do the shopping, vacuum the house or walk across a car park, all of which caused considerable limitations and reduced independent living.

Breathlessness imposes physical limitations on patients but also on their family or carer, to the extent that the carer’s health may also suffer as a result of taking on many of the patient’s former roles, but this is superseded by concern for the patient.

The effect of breathlessness on physical activity has been explored from a phenomenological perspective by CAREL [15]. She describes how breathlessness makes many things impossible and causes a shrinking “lifeworld”, and argues that the physical world becomes altered for breathless people, as the effort required to manage physical activities means that they are forced to attend to the environment around them in a different way from those who are not impeded by illness. As CAREL [15] describes: “The trail that seemed so inviting and beautiful is now harsh and endless.”

The physical limitations imposed by breathlessness have extensive effects on people’s daily lives. These, in turn, may have psychological, social and existential effects on both patients and those caring for them. It is important to note that these effects may be interrelated; for example, psychological impacts of breathlessness are likely to influence physical limitations (e.g. as a result of confidence), as well as vice versa.

The ups and downs of breathlessness

“In other words if it’s too hot or too cold, if it’s humid or it’s damp, you’re in trouble. . . . Then of course there’s windy weather, I just can’t make it in windy weather at all. I have great difficulty breathing if I happen to go against it. . . . Also, if there’s any kind of smoke, fumes or smog when you’re out, especially exhaust fumes from the cars and buses and what have you, then it’s murder to breathe.” [16]

Variability in breathlessness severity, even within the same day, is a major challenge. Unless very severe, most patients have stable, manageable or no breathlessness at rest but experience breathlessness induced by exertion and/or other triggers, such as emotion or a change in the environment. Breathlessness usually returns to baseline levels on rest or removal/cessation of the triggers. Consequently, a common coping strategy is to avoid exertion [17]. If the symptom intensity does not return to baseline levels or patients experience increased breathlessness of unknown cause that occurs “out of the blue”, they can find this very distressing.

A wide variety of environmental factors may trigger breathlessness, including physical exertion, anxiety, hot or cold air, weather, humidity, smoke, air pollution and time of day. Although many patients describe breathlessness triggered by one or another environmental trigger, there are also occasions when there is no obvious trigger, and patients report five different types of episodic breathlessness [18].

The variability of breathlessness leads to uncertainty for both the patient and their carer, leading to difficulties in planning, as the patient may not be well enough on the day to carry out the planned activity. As breathlessness can change even within a day, they become vigilant at monitoring their levels of breathlessness.

Alongside this variability in the daily experience of breathlessness, patients may have exacerbations of their underlying condition, often accompanied by worse breathlessness, which may then trigger an emergency presentation to their GP or the ED [19]. A meta-synthesis of the qualitative literature of the experience of exacerbations of COPD identified significant acute and long-term effects [20

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