, Julie Burkin1, Catherine Moffat1 and Anna Spathis1
(1)
Department of Palliative Care, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK
Abstract
There are few research studies to demonstrate the benefits of energy conservation specifically as a standalone intervention. It is often defined and researched as part of a multidimensional intervention programme, such as pulmonary rehabilitation, for which there is a large body of evidence to support effectiveness. Cognitive Behavioural Therapy also has some evidence to support its effectiveness in the management of breathlessness and reduction in emergency re-admissions for breathlessness patients. Much of the research refers to energy conservation or activity pacing within the context of Chronic Fatigue Syndrome or pain management, but this can be equally applied to the breathless patient, regardless of the cause. Booth et al. acknowledged that whilst energy conservation is frequently used in the management of breathlessness, definition and further research is required. However, energy conservation is an established component of most self-management programmes for breathlessness within the context of long term disease and evidence suggests that such programmes improve confidence to manage breathlessness and reduce hospital admissions.
Evidence
There are few research studies to demonstrate the benefits of energy conservation specifically as a standalone intervention (Payne et al. 2012). It is often defined and researched as part of a multidimensional intervention programme, such as pulmonary rehabilitation, for which there is a large body of evidence to support effectiveness (Paz-Diaz et al. 2007). Cognitive Behavioural Therapy also has some evidence to support its effectiveness in the management of breathlessness and reduction in emergency re-admissions for breathlessness patients (Howard et al. 2010). Much of the research refers to energy conservation or activity pacing within the context of Chronic Fatigue Syndrome or pain management (McCracken and Samuel 2007) but this can be equally applied to the breathless patient, regardless of the cause. Booth et al. (2011) acknowledged that whilst energy conservation is frequently used in the management of breathlessness, definition and further research is required. However, energy conservation is an established component of most self-management programmes for breathlessness within the context of long term disease and evidence suggests that such programmes improve confidence to manage breathlessness and reduce hospital admissions (Effing et al. 2009)
Introduction
Energy conservation and activity pacing are terms that are frequently used interchangeably. How often have we advised a patient to “pace” themselves? Indeed, in the fast pace of life many healthy individuals in the population may have actually received these words of advice. But what does it actually mean to pace one’s activities? Energy conservation and activity pacing are complex processes of behaviour modification and advising people to do as such, requires changing well established habits and routines; an adjustment which can be difficult and frustrating to achieve. There may also be reluctance in patients and carers to change behaviour if this is interpreted as somehow conceding to the disease process of their long term condition or acknowledgement of the inevitable deterioration.
Breathless patients living with chronic disease often experience fatigue or reduced energy levels which can occur as a consequence of a number of factors. An increase in the severity of pulmonary impairment can lead to a reduction in exercise tolerance, in turn leading to reduced engagement in activities and exercise. This ultimately results in the patient becoming deconditioned to such an extent that activities require more effort and energy to initiate, thus having a major impact on energy levels. In this state, the body is functioning quite inefficiently as the amount of energy expended to carry out day to day tasks is far beyond that used in usual circumstances. Other factors which can come into play are poor appetite (with less “fuel” in the body there is a reduction in energy) and a perceived decline in quality of life which may have a negative influence on mood and, therefore, motivation.
There is often a perceived discourse between energy conservation and exercise, with patients often asking “on the one hand they are telling me to exercise but on the other I am being told to rest, which is right?” Understandably, this can cause confusion and healthcare professionals need to be confident and assured in what the benefits of energy conservation are in order to convincingly advise patients to do it. Energy conservation aims to encourage the most efficient use of energy, which is also one aim of engaging in exercise, therefore the two go hand in hand in managing breathlessness effectively. Whether energy conservation is best achieved by activity pacing, trying to engage more in activity or exercise, adapting activities or a combination of all of these, depends on the lifestyle of the patient.
Facilitating meaningful and useful discussions about energy conservation and encouraging the benefits of such an approach requires an understanding and appreciation of how the person has previously managed their lifestyle and how they are adapting to the change, as well as knowledge of energy conservation techniques.
Case Study
Mr Blue is a 59 year old man with Chronic Obstructive Pulmonary Disease (COPD) He is married and has two adult children who live nearby and visit often. Mr Blue has always worked full-time in a local supermarket and has also led a very active life, cycling to work every day and playing football with his children and grandchildren. He has been on sick leave for the past 6 months due to recurrent exacerbations and increasing breathlessness and is currently consulting with his occupational health department regarding a return to work. Mr Blue wants to return full-time working but his wife feels he should give up work as it is “too much” for him. Mr Blue is expressing frustration at his increasing breathlessness and the limitations it is placing upon his daily activities. He describes himself as a “doer” and has always “been on the go”. He is finding it immensely difficult to manage his breathlessness. Yesterday, Mr Blue cleaned all the windows of the house, inside and out, as this is a task that he usually carries out. Today he is exhausted, frustrated and feeling low. Mr and Mrs Blue are finding it increasingly difficult to agree on the way forward, with Mrs Blue thinking that he should rest and “put his feet up” and Mr Blue trying desperately not to “give in to the breathlessness”.
All or Nothing
One central principle to encourage is obtaining balance between activity and rest. Identifying where a patient is on this continuum is helpful. A clinical observation of some patients is that they often fall into a pattern of excessive activity when they have a good day, only to have this followed by a few days of feeling exhausted and not being able to do anything. It is natural to want to make the most of feeling well and often patients are at their most resourceful on these days. However, their immediate gratification of having pushed themselves to the limit can be followed by subsequent days of feeling frustrated and low at having no energy. This pattern of behaviour can be described as the “all or nothing” or “boom or bust” approach and patients or carers will often immediately relate to this when it is highlighted.
Whilst, on occasion, this is difficult to avoid, for example if there is a family event such as a wedding or if the patient has several unavoidable appointments all in one go, it is a pattern that is helpful to discourage. Using energy in this way can be very inefficient. If patients push themselves to the limit, they are running the risk of becoming run down and possibly picking up infections which, in the case of COPD, can be very detrimental. It can often take longer to recover from these periods of over exertion which can result in an accumulative reduction in activity participation over time due to the time required to recover.
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