, Julie Burkin1, Catherine Moffat1 and Anna Spathis1
(1)
Department of Palliative Care, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK
Abstract
Intractable breathlessness is the most common devastating symptom of advanced cardio-respiratory disease, both malignant and non-malignant in nature. It is a global problem affecting millions of people worldwide as the incidence or COPD, lung cancer and heart failure continue to grow. Intractable breathlessness occurs when the uncomfortable sensation of the need to breathe persists even when the underlying medical condition and any other known aetiological factors have been maximally treated. In the most severe form it can be present at rest or on the most minimal exertion such as talking or washing. The fear and physical limitations the symptom imposes affects those closest to the patient as well, and over a period of years social isolation and depression are common both in the sufferer and the carers. There has been significant progress in recent years in understanding both the pathophysiology of breathlessness and ways it might be helped. This chapter sets out to outline both the experience of intractable breathlessness for patients and families and current best practice in managing the symptom.
It has helped her, which is the important thing … My wife’s been, not necessarily sorted, but understanding what she can and can’t do better … it takes a lot of stress and worry away from us.
Mrs Brown is now 70 years old. In some ways she feels relieved to have reached this age, she feels so ill during her chest infections that set off an ‘exacerbation’ of her COPD that she has expected to die several times in the last 10 years. Last winter was particularly bad; she was in hospital six times between October and March, and had to have IV antibiotics and be on non-invasive ventilation (NIV) continuously for 4–5 days, on two occasions. Mrs Brown is sure she is definitely not as active as when that last winter started, she knows she has lost ground physically and now she has to use nocturnal NIV ventilation every night. Mr Brown has started to sleep in the spare room as the machine is so noisy; she has a bell by the bed in case she needs help to get up to go to the lavatory or if she gets frightened. Mind you, if she gets frightened, he does too, and they both feel panicky and usually have a row, which makes them both feel bad.
At least it is May now and she can look forward to better times for a few months, even letting the idea of next winter come into her mind makes her feel apprehensive and it is months away. Trying to stop people visiting if they have a cold, avoiding the surgery, sitting away from people at out-patients who are blowing their noses, wiping down metal door handles at the hospital, feeling worried when items about ’flu appear on the news. The next chest infection could surely kill her. Mrs Brown is determined to enjoy the spring, she will go out when her daughter, Sheila comes over on a Sunday. Sheila’s able to help her get into the car, and Mr Brown cannot manage all the oxygen equipment any longer. He gets frightened when she has a breathlessness attack and they come on now with the slightest exertion, even getting out of the car and walking into the pub has to be done in at least three stages and takes 15 min. She hates using the nasal specs in public and being pushed about in a wheelchair but at least it all helps her to get out of the house. It’s better to see the grandchildren away from home, where they can run around and make a noise, they tire her out altogether now but she feels so low if she is not up to seeing them. The oldest one has started smoking, she has tried to warn her, ‘Look what it’s done to me, I know you feel all right now, but it comes on slowly and by the time you’re breathless it’s too late.’ She remembers not believing that smoking could hurt her, but they didn’t have as much information then. How she regrets it now.
This week will be a bad week as she has to go up for a hospital appointment and she always feels exhausted for 3 days afterwards, but it is good to see Dr Patel; she feels reassured that he is checking her over and making sure she has the right medication. If only it wasn’t so tiring waiting for the ambulance to arrive to take her to hospital and then again in the evening waiting for it to bring her home. She can do so little for herself now, it makes her feel helpless and so vulnerable.
If only there was something she could do to help her breathlessness.
Features of Chronic Breathlessness
Chronic intractable breathlessness is a frightening, disabling symptom affecting every facet of a person’s life and of those closest to them. Mrs Brown’s story is a typical one and clinicians who care for patients contending with the chronic breathlessness of advanced disease need to be prepared to think about its wide-ranging impact if they are to give patients the most effective treatments. Often the underlying illness will have been maximally treated and yet the breathlessness will persist.
There is more and more evidence confirming that:
1.
Breathlessness is a very common symptom for people living with advanced disease of any sort; not only serious cardio-respiratory disease, both malignant and non-malignant in nature, but also, for example, renal and neurological illnesses.
2.
Breathlessness is a terrifying symptom to live with, severely limiting the physical capacity of the sufferer. People with chronic breathlessness often experience depression and chronic anxiety.
3.
Breathlessness has profound psychosocial effects on the patient and their carer leading to social isolation, loss of employment, huge physical burdens on the spouse or other carer, who has to take over all the ‘activities of daily living’ that the sufferer can no longer accomplish. Often the carer is elderly and may have an illness themselves.
4.
Breathlessness is still easily overlooked in many clinics and specialties, where the primary focus is on disease management, and symptoms are not actively elicited. Many doctors nurses and other clinicians do not ask patients about how breathless they are, because although they are very confident about managing acute breathlessness they are not at all sure how to help someone with chronic breathlessness.
5.
As patients become more and more ill, they often become lost to any system of follow-up including primary care, as they become housebound and their carer finds it difficult to help them leave the house. Therefore patients do not benefit from any changes or improvements in medical treatment for their underlying illness, or see those who could give specialist interventions for symptomatic relief of their breathlessness.
Understanding Chronic Intractable Breathlessness
Breathlessness is a complex experience of the mind and the body, rather than a unidimensional event. It has depth in the moment in which it is actually experienced, affected by whatever else is going on for that patient at that instant; and chronicity, accompanying a person through all the events of their life, worsening as their disease increases in severity and improving if the illness can be treated.
The most widely cited definition of breathlessness is that composed by a working party of the American Thoracic Society in 1999, reviewed and not changed, in 2012, where it is defined as,
… a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that varies in intensity. The experience derives from interaction among multiple physiologic, psychological, social, and environmental factors and may induce secondary physiological and behavioural responses (ATS, 2012).
This comprehensive description encapsulates all the complexity of breathlessness, perhaps the essence of the symptom is best summed up in the phrase ‘the uncomfortable awareness of the need to breathe’.
Breathlessness may be a symptom that develops rapidly; this is characteristic of:
Primary malignancy; sometimes the breathlessness that occurs with newly-diagnosed cancer may be completely reversible with systemic anti-cancer treatment. For example a pleural or pericardial effusion may disappear with chemotherapy. If the disease is cured, the breathlessness does not return. Primary lung cancer is rarely cured.
Secondary malignancy; patients may have a period of feeling well when incurable cancer is in remission, this can last months or even years. When the cancer recurs it can progress rapidly and the onset of breathlessness can match this.
Some non–malignant lung diseases such as Interstitial Lung disease (ILD, IPF, fibrosing alveolitis or its variants). The deterioration in the breathlessness can be frightening because it is so fast and because nothing seems to help.
Rapid progression of breathlessness has the following characteristics:
the patient goes from being a fit, or relatively fit person who can look after themselves, to someone who is unable to walk a few yards, or complete the normal activities of daily living such as talking, washing or dressing themselves without the onset of severe breathlessness.
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