, Julie Burkin1, Catherine Moffat1 and Anna Spathis1
(1)
Department of Palliative Care, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK
Abstract
Regular exercise and activity has been proven to improve breathlessness however breathless patients often avoid exercise and activity due to the misguided fear that breathlessness is harmful. Some patients may avoid exertion simply just to avoid this unpleasant symptom. Carers may also re-enforce negative beliefs regarding exercise, therefore promoting a sedentary life style. Inactivity may cause the breathless patient to become deconditioned and their breathlessness may worsen as a result. The clinician’s role is to address barriers to exercise and promote regular, appropriate exercise and activity. This chapter will introduce and explore a stepwise process to exercise and activity promotion to help guide the clinician to empower the breathless patient to engage in lifelong exercise and activity.
“When I found out I’d got cancer, you think ‘I’m ill’, whereas she made me see that you can still do exercise, all the exercises that you can do and when she left I felt much more confident actually, I did definitely”
–A patient with lung cancer
Introduction
Regular exercise and activity has been proven to improve breathlessness however breathless patients often avoid exercise and activity due to the misguided fear that breathlessness is harmful. Some patients may avoid exertion simply just to avoid this unpleasant symptom. Carers may also re-enforce negative beliefs regarding exercise, therefore promoting a sedentary life style. Inactivity may cause the breathless patient to become deconditioned and their breathlessness may worsen as a result. The clinician’s role is to address barriers to exercise and promote regular, appropriate exercise and activity. This chapter will introduce and explore a stepwise process to exercise and activity promotion to help guide the clinician to empower the breathless patient to engage in lifelong exercise and activity.
Evidence and Guidelines Regarding Exercise in Breathlessness Management
Pulmonary rehabilitation has been proven to reduce breathlessness (National Clinical Guideline Centre 2010). Exercise may reduce breathlessness by improving cardiopulmonary efficiency. Exercise, during a pulmonary rehabilitation programme, may also ‘desensitise’ the flight-fight response of primitive brain centres to the sensation of breathlessness, through the combination of repeated, self-induced exertional breathlessness in a safe environment, alongside breathlessness management education, enabling the patient to effectively self manage this normally distressing symptom. In over-weight patients exercise, alongside dietary advice, may also help to improve breathlessness by reducing excess weight and therefore reduce the physical demands on the cardiovascular system.
Exercise is widely promoted in national guidelines for a variety of long-term conditions in which breathlessness is a symptom, based on the strength of evidence supporting its use. Disease specific group-based exercise rehabilitation programmes have been recommended in the guidelines for chronic obstructive pulmonary disease (COPD) (National Clinical Guideline Centre 2010), idiopathic pulmonary fibrosis (National Institute for Health and Clinical Excellence (NICE) 2013) and chronic heart failure (NICE 2010).
Cardiac rehabilitation is often more intense than pulmonary rehabilitation, therefore pulmonary rehabilitation may be more suitable for patients with chronic heart failure. Evans et al. (2007) demonstrated that it is feasible for patients with chronic heart failure to attend pulmonary rehabilitation alongside COPD patients and to make comparable improvements to the patients with COPD. Physical training, to improve cardiopulmonary efficiency, is also promoted in the management of asthma (British Thoracic Society /Scottish Intercollegiate Guidelines Network (BTS/SIGN) 2012).
Exercise training for patients post cancer treatment provides both physiological and psychological beneficial effect (Spence et al. 2010; Speck et al. 2010). Pulmonary rehabilitation has been shown to improve exercise tolerance and functional status in oncology patients with pulmonary symptoms (Morris et al. 2009). Exercise training is considered to be safe during and after cancer treatment and results in improvements in quality of life, physical functioning and cancer related fatigue and inactivity should be avoided even in those with current disease or undergoing difficult treatment (American College of Sports Medicine (ACSM) 2010).
The Clinician’s Role in Exercise and Activity Promotion
Guidelines generally advocate exercise alongside education in a group setting, in preference to individual home exercise programmes. Group work provides peer support which may improve motivation, as well as providing the opportunity for regular supervised exercise in a safe and supportive environment. Puente-Maestu et al. (2000) showed that a supervised exercise training programme produce significantly greater physiological improvements in exercise tolerance than a self motivated programme for patients with COPD.
Proven Benefits of Pulmonary Rehabilitation Programmes for COPD
Improved exercise tolerance
Reduced breathlessness
Improved quality of life
Improvements in healthcare utilisation
Improvements in psychological outcomes
BTS/ACPRC (2009)
Ultimately the clinician should strive to engage the breathless patient in an exercise-based rehabilitation programme specific to their condition. However not all patients feel ready to attend a group programme due to lack of confidence, severely reduced exercise tolerance or fear of uncontrolled breathlessness. The clinician’s role may therefore be to assist the patient to make the transition to an appropriate group exercise programme.
Conversely some patients may not wish to attend a group out of personal choice or there may not be a suitable and accessible programme available to the patient, the patient may be ‘too fit’ or not ‘fit enough’. Other patients may have attended a group programme but have not continued an exercise regime, in such cases patients may be able to repeat the programme if local commissioning allows and the patient wishes. In cases where a rehabilitation programme is not suitable, available or is declined alternative exercise strategies need to be explored and put in place.
A Stepwise Approach to Exercise and Activity Promotion
It can be difficult to know where to begin with the daunting task of exercise and activity promotion in the breathless patient. A stepwise process is therefore suggested to help guide the clinician (Fig. 8.1).
Figure 8.1
Steps to exercise and activity promotion
Step 1: Deconditioning Cycle
Patients who are breathless due to pathology may fear that breathlessness is harmful and therefore avoid becoming breathless. This leads to inactivity and the downward spiral of deconditioning (Celli 2009).
Patients and their carers need to be reassured that breathlessness in itself is not harmful. Indeed, making themselves moderately breathless with activity is actually improving their cardiovascular health.
Patients need to understand that the more ‘unfit’ they are the more breathless they will feel on activity.
Before embarking on exercise and activity promotion it is important to ensure the patient understands this deconditioning cycle (Fig. 8.2). It is also important to help patients and carers recognise the effect of specific periods of reduced activity, which may be related to being unwell with an exacerbation, hospital admission or the winter months when they may be less active outside and how breathlessness may be noticeably worse following such periods due to reduced cardiopulmonary fitness and general loss of strength.
Figure 8.2
Deconditioning cycle
Chronic conditions cannot be reversed or cured, however cardiopulmonary endurance, general strength and flexibility are all things that patients can have a positive influence upon.
It can be very empowering for patients to realise that improving fitness is one of the things they can influence to make a positive difference to their lives, at a time when they may feel at the mercy of their condition.
Exercise and activity promotion is a vital part of breathlessness self management. By reversing the ‘deconditioning cycle’ through improving cardiovascular endurance, muscle strength and endurance and general flexibility patients may find they may become less breathless on exertion and recover quicker. Regular exercise may also improve mood though release of endorphins.
Exercise causing ‘deliberate’ breathlessness can provide an opportunity for patients to practice their breathlessness management techniques in a safe support environment where they feel in control. Regular exercise where breathlessness is self induced but the patient feels in control and not anxious may help to ‘desensitise’ the fight-flight response of the primitive brain centres to the perception of breathlessness.
Step 2: Overcoming Common Barriers to Exercise
Often the biggest barrier to exercise is motivation, confidence and self-belief in the ability to carry out regular, meaningful exercise that will have a positive influence to symptoms and daily life. Patients may also have specific barriers to exercise, which they may discuss openly or disguise behind vague excuses. It is important to discover the real reasons for exercise avoidance so that these barriers can be explored and addressed (see Table 8.1).
Table 8.1
Common barriers to exercise
Barrier | Possible solutions |
|---|---|
Fear that breathlessness or exercise is harmful. | Explain the deconditioning cycle, that breathlessness is not harmful and it is normal to become breathless when exercising. In fact it is important to become breathless with exercise to improve fitness. Demonstrate oxygen levels stay within normal range or recover within acceptable time (with oxygen if prescribed long term or ambulatory), therefore it is the effort of breathing, not low oxygen that causes breathlessness. |
Motivation, especially in the context of frequent exacerbations. | Explain to the patient that research shows that even if pulmonary rehabilitation is interrupted by an exacerbation of COPD they can still achieved similar outcomes to those who completed the course without interruption (Steel et al. 2010). Explain deconditioning cycle and the fact it can be reversed through exercise. Use goal setting, starting with simple, achievable goals. |
Lack of confidence to exercise. | Discuss specific cause of reduced confidence. What do they fear will happen? Start with small achievable goals using exercise patient feels most confident with. Exercise with a friend. Attend supervised exercise group specific to their condition or a seated exercise group. May wish just to observe group first. |
Fear of infection, often related to group work, gym or swimming pool. | Exercise outdoors or at home with own equipment. Take disinfection wipes and clean equipment before use. Some patients may feel more comfortable in a small, private swimming pool i.e. at health club or hotel. |
Fear of not being able to keep up with rest of class. | Observe class before attending. One to one assessment with instructor prior to course so can try out exercise circuit. Build up exercise tolerance prior to starting class with home exercise or walking programme. Attend basic seated exercise class first and build up from there. |
Fear breathlessness will become uncontrolled during exercise. | Gain confidence in breathlessness self management strategies, such as breathing techniques, with low intensity exercise at first and build up gradually as confidence improves. Ensure the patient understands breathlessness will recover with rest. Discuss previous situations where patient felt breathlessness was uncontrolled. What would they do differently next time? |
Weather; too cold, hot, windy etc. | On such days exercise indoors i.e. home exercise programme, interactive games console, DVD, exercise class at a sports centre, swimming, gym, walking around shopping centres or supermarkets. |
Logistics of getting to venue. | Go with a friend or relative. Access volunteer driver scheme. Reduced price taxis for those with disabilities/ chronic conditions. NHS transport. Ask organiser if there is anyone who lives near them who could car share or what transport arrangements are available. Home exercise, interactive games console, DVD, walking programme. |
Pain, fatigue, weakness. | Pain should be addressed. Joint pain and stiffness from arthritis may be helped by appropriate exercise. Fatigue and weakness should also improve with exercise. Although patients may initially feel more fatigued when starting exercise until their fitness improves. |
Unsure what exercise to do, especially if very low exercise tolerance. | Simple bed, chair or standing exercise at home. Build up exercise in 10 min sessions. Getting up and walking the length of the room or corridor every 1–2 h, maybe combined with a pedometer. Seated exercise class. Bowls or other low level sport. Interval training (exercise interspersed with short periods of rest or lower intensity exercise). Neuromuscular electrical stimulation. Inspiratory muscle training. |
Cost of exercise instruction or equipment. | Subsidised schemes such as GP gym exercise referral, personal health coach or exercise for over 50 years old or those with chronic conditions. Walking programme with or without low cost pedometer. Home exercise programme with or without DVD. Exercise programmes run by charities or the National Health Service. |
Previous bad experience when exercising or blames exercise for deterioration in their condition. | Discuss and rationalise what happened and why. Discuss how such a situation could be managed in the future. Try a different sort of exercise or activity unrelated to past event. Cognitive behavioural therapy. |
Barriers Created by Carers
Some barriers maybe created or re-enforced by the patient’s carer therefore discussion regarding exercise should include the patient’s carer.
Well meaning carers may find it distressing to see their loved one ‘fighting for breath’ and may encourage the patient to rest and thereby re-enforcing the sedentary life-style.
If possible the carer should observe the patient exercising and recovering their breathing after exercising to help reduce the carer’s fear and anxiety related to their loved one exercising. In appropriate cases both carer and patient attending an exercise class or exercising together (i.e. taking regular walks) may aid motivation and the patient’s confidence to exercise as well as benefiting the carer themselves.
Step 3: Goal Setting
Goals aid motivation by giving a sense of purpose and the ‘feel good’ factor of achievement. Goals must be set based on the patient’s motivation, not what the clinician or carer thinks is best for the patient. Set just one or two goals at a time to aid focus. Goals must be SMART: Specific, Measurable, Achievable, Realistic and Timed. For example “To become fitter” is not a SMART goal. Sort terms goals may lead to an overall long term goal.
Long Term Goal
To be able to walk to the corner shop (50 m away) three times a week by 1 month time.
Short Term Goals
Week 1: To walk three times a week 20 m (to the lamp post) and back.
Week 2: To walk three times a week 30 m (to the bin) and back.
Week 3: To walk three times a week 40 m (to the park gate) and back.
Goals should be written in a positive manner. For example “I will iron for 10 min each day” not “I will not fall behind with the ironing”. To help goals to be realistic ask patients to rate how confident they feel, out of ten, that they will achieve the goal. If their confidence level is less than seven then the patient should re-think the goal. It can help to monitor progress in a diary so patients can see that they are making progress towards their goal. Patients should reward themselves for achieving their goal. This does not have to be a grand or expensive celebration. Going out for lunch with their partner or coffee with a friend, going to the cinema or theatre, buying a new item of clothing or treating themselves to a massage, new book or DVD. The patient then needs to set their next goal.
Explaining how exercise can help a patient achieve their goals and enable them to see the relevance of exercise in their life aids motivation. Exercise diaries and goal setting sheets are produced by charities such as Macmillan Cancer Support, the British Lung Foundation and the British Heart Foundation.
Step 4: Managing Breathlessness on Exertion
A common fear of both patient and carer is that breathlessness may become uncontrolled during exercise and that this may lead the patient to become ‘stranded’ if on a walk, embarrassed if in an exercise class or in a public place or they may fear breathlessness will cause them harm. Prior to commencing on a programme of exercise it is important that patients are confident in using breathlessness self management techniques to manage exertional breathlessness and that their carer can observe that such techniques are successful.
Managing Exertional Breathlessness
Education: Understand breathlessness is not harmful. In fact becoming moderately breathless during exercise will help improve cardiopulmonary fitness. Breathlessness will recover with rest.
Cool draught of air: Fan to the face, cool mist spray or flannel to wet face during and post exercise.
Breathing techniques: Paced breathing in time with steps or movement, breathe out on effort, Breathing Control, Recovery Breathing, pursed-lips breathing. Practice techniques at rest initially to become familiar and competent, then use during activity to manage breathlessness. Gradually increase intensity of breathlessness as confidence in technique improves.
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