, Julie Burkin1, Catherine Moffat1 and Anna Spathis1
(1)
Department of Palliative Care, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK
Abstract
The practical management of chronic intractable breathlessness requires a multifaceted approach i.e. a complex intervention encompassing pro-central non-pharmacological interventions, and palliative drug therapy where necessary. Treatment of the underlying disease should always be optimised and referral to other specialists may be necessary to achieve this: palliation cannot take place without a diagnosis of the cause of breathlessness. At assessment, the patient’s goals are at the centre of the care and the action plan and broader strategy are decided with them. The needs of the patient’s carer require individual attention, again built round that person’s goals. Non-pharmacological, pro-central interventions can be usefully considered by their main mode of action i.e. whether they primarily affect breathing, thinking or functioning, accepting there is a degree of overlap. As well as symptom control for breathlessness the patient needs to be assessed comprehensively as other symptoms frequently co-exist, for example fatigue, cough and pain. The latter is particularly common in those with advanced cancer. Approaches which aim to build the patient (and carer’s) wellbeing and mental resilience are also important, as living with a chronic illness is always demanding. If you are uncertain how to help an individual with difficult symptoms and need advice or a consultation contact your local palliative care service.
“I was thrilled to bits to be able to be getting some knowledge of what my complaint was all about…”
pt participating in Booth et al. (2003), p. 293
This chapter sets out an approach to helping the breathless patient (and their family) by synthesising the practices discussed in this book and integrating them with current best practice. Indicative work from laboratory studies and from those other specialities which care for patients with chronic disease.
It will already be clear that a system for giving the best care to a person suffering from the chronic, intractable breathlessness of advanced disease, cannot be contained within a set of algorithms to be delivered in a fixed order.
Individual assessment is essential followed by the instigation of a strategy, decided with the patient, using evidence-based practice, to help reduce the impact of breathlessness and the suffering it causes, and addressing the more general difficulties of living with any chronic condition.
Breathlessness is very complex, and this complexity increases with chronicity. If the patient cannot find a way to manage their breathlessness (and the other burdens of chronic illness) and receives no effective help, life can become desperate. The impact of chronic breathlessness infiltrates every aspect of a person’s existence and profoundly affects those closest to them. Rather than a simple uni-dimensional sensation which can be switched off by one intervention it is an experience of the mind and body. Cicely Saunders, founder of the modern specialty of palliative care, described ‘total pain’ which had spiritual, psychological, social as well as physical aspects and this concept can also be used for breathlessness.
The complexity of chronic breathlessness is one of the reasons that it is so difficult to treat and possibly explains why research in this area was overlooked for so long.
Using the Research Evidence
Evidence from outside breathlessness research can help clinicians to give patients the most effective management, particularly evidence from research on:
Chronicity, i.e. Living with a chronic illness or long-term condition; chronic illnesses are the most significant health problem of the twenty-first century and some themes are common to all long-term conditions. There is a significant literature available on service configuration and the psychological impact of living with a chronic condition.
Wellbeing: the psychology of resilience is important for those living with breathlessness: it is now clear that there are skills which all can learn to increase their ‘mental capital.’ Greater resilience can lead to more enjoyment of life, enhancing individuals’ ability to take decisions and actions for themselves, in the face of difficulties. This is an area of emerging knowledge and is discussed in a later section of this chapter.
Communication skills: breathlessness management often requires patients to change their lifestyle and learn new skills. People need to feel motivated to do this and helping them to achieve change will be more effective if the clinician has the right communication skills. Motivational interviewing techniques are particularly important.
Palliative care; this speciality has researched and practised ways of helping patients facing life threatening illness by investigating and treating all symptoms, not only breathlessness, reducing anxiety, supporting carers and, when needed, giving excellent end of life care. Palliative care overlaps with supportive care which is simply those treatments that are not primarily directed at the illness but help an individual have the best physical and mental health possible. Many people with chronic intractable breathlessness are not immediately facing death. They need their clinicians to have the skills and attributes necessary for helping them to face a frightening reality in addition to clinical knowledge. These attributes include a disposition to empathise, show understanding, act with kindness and a motivation to manage symptoms as actively as investigating and treating disease.
Rehabilitation: until the very end of life patients need to be treated as living sentient human beings capable of self efficacy, agency and the ability to change. Being able to look ahead with some sense of safety is important, even when very ill. This was demonstrated thoughout all the phases of evaluation of CBIS and is emerging from the evolving work on improving wellbeing.
“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 Ca, 53 year old.
For example, someone who is very ill but who can, even if temporarily, be helped to learn how to transfer from bed to chair unsupported, will have a greater chance of living at home until the end of their life.
Those with a longer prognosis have the opportunity to improve their health becoming fitter and more active if they are given the right sort of help.
Psychology, psychiatry and neuroscience. People living with breathlessness, are helped by maintaining or improving their sense of self-efficacy to help overcome the accumulated assaults of illness. Depression, anxiety and other affective disorders are more common in those with chronic illness but can be treated, possibly prevented, greatly improving quality of life.
It’s getting your head into 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 Ca, aged 58 participating in Booth et al. (2003)
Carers; it is increasing recognised that the carers of those with chronic illness suffer increased ill-health, particularly ischaemic heart disease and depression. There is an increasing body of evidence on how to help carers. This is outlined in Chap. 9.
Evidence from all these areas forms the basis for specialist, multi-professional breathlessness services (often based in palliative care departments) for which there is increasing evidence. The breathlessness service approach will need to continue to evolve as new evidence emerges from all these areas, as it is a complex intervention. References for the evaluation of the Cambridge Breathlessness Intervention Service are given at the end of the chapter with review articles outlining the work of others.
To continue to give your patients the best help it is important to keep looking for relevant work in these areas of research and to ensure that your service model is flexible and can evolve to meet changing needs in your geographical area.
First Steps in Assessment – Taking a History of the Patient’s Breathlessness
This is discussed in detail in Chap. 2. It is very common to see guidance on how to take a detailed pain history, and a similar systematic approach to gathering information is just as important for effective breathlessness management. The history does not simply involve a litany of questions eliciting and encouraging one word answers, nor is it a rambling conversation (see Chap. 2). The structure of the interview comes from the patient; the clinician’s focus is to discover information that will guide them to help the patient.
The first step towards giving good care for the breathless patients is to listen to their experience of the impact of breathlessness, to find out how it has affected that individual and those closest to them.
Breathlessness is an experience influenced by the higher thinking and feeling areas of the brain and by those more ‘primitive’ areas that respond almost reflexively or instantly to threat.
Breathlessness is an intrinsically threatening experience. It seems that humans are ‘hard-wired’ to feel anxious when experiencing breathlessness. The severity of that anxiety will be influenced by the higher centres (for e.g. by that individual’s previous experience and/or interpretation of the symptom). A person can learn to reduce their feeling of breathlessness by using their minds (Table 12.1) (Gracely et al. 2007).
Table 12.1
Prompts for areas that need to be covered in assessment and reassessment of the breathless patient
History from the notes and other clinicians caring for that patient; obtain and read before any home visit or out-patients. Talk to other clinicians particularly GP or family physician or AHP or specialist nurses who know patients well. |
History of breathlessness: onset, history, pattern, rate of progression, precipitating and alleviating factors, drugs taken to relieve, outcome of other treatments e.g. pulmonary rehabilitation, patients understanding and explanation for breathlessness . Are there crises? I.e. episodes of overwhelming breathlessness seemingly ‘out of the blue’? Who does what at these times? |
Family and support available; where? who does what? Who helps? Who hinders? Financial concerns, other agencies, charities which are involved. |
Medical and clinical support; who does patient see as their regular clinician who is in overall charge? Who do they get on with best in this context? Do different clinicians give different types of support. |
Action plan: decided with patient and carer |
Advanced care planning? Now or later? (See Chap. 2) |
Prescription? Opioids or other drugs needed now? If the patient is dying are the right drugs in the house? |
Review? When and who? Where? |
Carer? Any action? |
Discharge back to? Who will carry on breathlessness interventions when you are no longer seeing? Do they have the right information from you to do this? Can patient be re-referred if necessary? |
Liaison: with patients’ clinical teams (they need to know what you have done and plan to do and how long you are seeing the patient) Record: the patient’s caring teams will need a record of what you are doing but so will the patient. Small cards with prompts on, notices on the wall, letters written specifically for the patient can all be helpful here. Did you write a ritual for crises? The patient and carer will need a copy more than anyone. |
Refer on: to pulmonary rehabilitation, to hospice services to another specialist. All this will need to be discussed with the patient and the patient’s primary care physicians. |
Information. Does the patient and carer have all the information they need, do they have information sheets, access to helpful website? Do the primary care team have the information they need to carry out supporting the patient’s breathlessness treatment plan? Are there support agencies the patient is not using e.g. disease specific groups or charities? |
Selecting an Intervention
Once you have a detailed history of the breathlessness and its impact you can begin to formulate, with the patient, a therapeutic plan to palliate the sensation and the difficulties it causes. The choice of the first intervention(s) to be selected for the individual will be governed by:
Priority for patient: if someone has a particular short or long-term goal in mind, this will help prioritise the early interventions used. For example, if a father describes severe anxiety and breathlessness when in a crowded place, and wants to attend a son’s school play, he may want to learn breathing retraining and anxiety reduction techniques first.
Medical assessment: for example, if you feel there may be complicating thrombo-embolic disease, you will want to investigate this quickly (the sorts of investigations used being appropriate for that individual). You may need to make a referral to another specialist to ensure that treatment of the underlying, or another complicating condition is optimised.
Patient’s disposition and choices: some individuals will prefer a drug to manage anxiety rather than learning an anxiety reduction, strategy or vice versa. Whilst there are few drugs suitable for long-term use in anxiety, you might choose to use one initially to get improvement and build trust.
Always institute an intervention on the day that you first assess someone. There are a number of ‘do no harm, likely to do good’ pro-central, non-pharmacological interventions which increase self-efficacy and which be used in any one with breathlessness at any stage of the illness (see Box 12.1).
To institute all of these however, in detail, on the first occasion that you meet a breathless person would be too tiring and time-consuming for the patient. As you describe the rationale for a complex intervention, using a variety of approaches for managing breathlessness, you will touch on many, perhaps all of them, during discussion. You can use written information or the web to provide more ideas for the patient to consider in their own time, concentrating on the first visit on the intervention you think will have the biggest impact, most quickly.
It is important for the patient to start using one useful intervention that gives them back a measure of control from as early as possible, preferably at the first meeting.
Box 12.1: ‘Some examples of ‘Do no harm, likely to do good’ interventions’
The hand-held fan, with education on how to use it
Developing a ‘ritual for crises’ plan
Breathing retraining
Energy conservation and pacing
Encouraging mental and physical activity and/or exercise
Learning an anxiety reduction or relaxation technique
Learning about wellbeing interventions
Education on breathlessness
Carer support and interventions
Pro-central, Non-pharmacological Interventions
What are called, non-pharmacological interventions are the mainstay of the evidence-based, effective CBIS intervention. The word non-pharmacological is unsatisfactory as it does not convey either the type of intervention used, (and this term encompasses a multiplicity of treatments) nor the effectiveness of this group of treatments. Booth et al. (in preparation) and (Spathis et al. 2011) have proposed:
(i)
a new term to replace the term ‘non-pharmacological’
(ii)
a classification of such interventions, at least until better ones can be found.
Pro-central is again a general term but it is a positive designation of these treatment strategies and postulates the way in which they modulate breathlessness. It has been proposed, with others, as a term to replace non-pharmacological and is not in general use.
Pro-central, non-pharmacological interventions can then be classified by the way they reduce the sensation of breathlessness (see Chaps. 1 and 2) by a primary effect on either:
Thinking: for example, cognitive behavioural therapy (CBT), education, wellbeing interventions, rituals for crises, carer support.
Breathing: for example, morphine and other opioids, the hand-held fan and other oro-nasal cooling methods, breathing retraining, draining pleural effusions.
Functioning; for example, exercise, pacing and energy conservation techniques, physical and metal activity.
It is clear that most pro-central, non-pharmacological interventions will affect more than one of these areas, but have their greatest impact in one. The terms are used also help clinicians understand a possible explanation for the effectiveness of the intervention they are using. This also helps the clinician teach these interventions to patients (and colleagues) in an informed way.
Active informed listening by a clinicians interested in breathlessness is a pro-central intervention in itself; this was clearly demonstrated in the data from the CBIS evaluation over ten years.
Summary of ‘the Complex Intervention, Breathlessness Service’ Approach
The majority of patients that many breathlessness services see have advanced COPD but an increasing proportion are reaching out to see those with lung cancer, interstitial lung disease (ILD) or heart failure, which all have a much shorter prognosis. The treatment strategy for what can be called chronic breathlessness (lasting many months or years) and for rapidly-progressive breathlessness (weeks to months) are similar but have a different emphasis. The principles are outlined in Table 12.2. End of life care is different, and has been discussed in Chap. 11.
Table 12.2
Some key differences in the approaches to managing chronic and rapidly progressive breathlessness
Chronic breathlessness lasting years | Rapidly progressive or severe breathlessness with a prognosis of weeks to months |
|---|---|
Drug therapy less favoured for palliation dyspnoea | More emphasis on drug therapy for palliation of dyspnoea |
Benzodiazepines rarely used (risk of dependency/difficulty withdrawing) | Benzodiazepines used as necessary to help anxiety |
Emphasis on engaging patients with life outside medical sphere (e.g. sports or activities to be continued in longer term to promote exercise and mental and physical fitness) as well as appropriate services supporting treatment of breathlessness e.g. pulmonary rehabilitation | Emphasis on engaging patients with other services that help end of life care and offer extra support to carers e.g. community nurse, hospice services. |
Emphasis on increasing physical activity continuously. Support of current, & development of new, social relationships | Emphasis on activity both physical and mental that fits with patient’s physical condition at that moment |
Emphasis on prevention of longer term morbidity e.g. from corticosteroids, from smoking, from inactivity, from cardiac complications of COPD, from poor nutrition, from systemic inflammation | Emphasis on minimising drug burden reducing need to change ‘habits of lifetime.’ Review particularly those drugs which are aimed at prevention of longer morbidity and have uncertain role for that individual in last days, weeks or months of life. |
Emphasis on helping carers get support outside medical systems and to look after their own health
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