Figures
- Figure 1
Schematic diagram to outline the genesis of breathlessness. Reproduced and modified from [27] with permission.
- Figure 2
Schematic of the Bayesian brain hypothesis. Both prior expectations and incoming sensory information contribute to the resulting perception, where each is a distribution of possible values. Reproduced from [29] with permission.
- Figure 3
The spiral of disability.
- Figure 4
The BTF model of breathlessness used by the Cambridge Breathlessness Intervention Service (CBIS). ©2017 CBIS. Reproduced with permission from the CBIS and Cambridge University Hospitals NHS Foundation Trust. Modified from [37].
- Figure 5
First-step algorithm for a busy general respiratory clinic without specialist breathlessness/supportive care service. SOB: shortness of breath; D12: Dyspnoea-12; OT: occupational therapist; BLF: British Lung Foundation; BTS: British Thoracic Society.
- Figure 6
The breathlessness ladder. Comprehensive approach to the management of dyspnoea in patients with advanced COPD. NMES: neuromuscular electrical stimulation; SABD: short-acting bronchodilators; LAAC: long-acting anticholinergics; ICS: inhaled corticosteroids; LABA: long-acting β2-agonists; PDE4: phosphodiesterase-4. Reproduced and modified from [61] with permission.
Tables
- Table 1
Terminology related to person-centred care
Term Definition Comment Person-centred care [13] Person-centred care is a way of thinking and doing things that sees the people using health and social services as equal partners in planning, developing and monitoring care to make sure it meets their needs. Least ambiguous term, unrelated to prognosis.
Most important in chronic conditions where there is no disease-altering therapy and patient engagement in self-management is essential for best clinical outcomes.Supportive care [14] An approach “to prevent or treat as early as possible the symptoms of a disease, side-effects caused by treatment of a disease, and psychological, social and spiritual problems related to a disease or its treatment”. Has become central to cancer medicine (and an expectation), where supportive services are advanced, although symptom burden in a number of cancers may be much less and disease may be completely curable.
Accepted that “lifestyle” interventions will lead to greater long-term health.
Many people with cancer live with “treatable but not curable” disease, like those with advanced respiratory disease, and the same problems are being recognised.Palliative care [15] Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Will enhance quality of life and may also positively influence the course of illness. Favoured by the European Respiratory Society for people with advanced disease and where death would not be unexpected.
The World Health Organization also states: “Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, […] and includes those investigations needed to better understand and manage distressing clinical complications”. - Table 2
Social factors that negatively affect quality of life in patients with advanced respiratory disease, with possible solutions
Contributory factor Relevance in advanced respiratory disease Possible alleviating factors Sources of help that clinicians can recommend Role of clinician Poverty: anxiety about money, loss of accommodation, lack of food, difficulty in getting welfare/benefits, particularly if invisible. Concern regarding continuing benefit receipt may deter from health-promoting activities such as exercise, for fear of being reported as fraudulent. Early loss of work, possibly low-skilled with lack of savings.
Partner prevented from work by caring duties or morbidity of own.
Increased costs (e.g. heating, transport) and decreased income.
In some countries, medical costs are high.Benefits/welfare support, although complex bureaucratic system in most jurisdictions plus some rare illnesses unfamiliar to benefits system and common ones (e.g. COPD) may not be seen as serious. Social workers where available.
Citizens advice bureau (or equivalent charity) giving voluntary help.
Charities such as Breathe Easy offer information from within network.
Foodbanks: clinicians in UK can refer to foodbanks.
If hospice/palliative care service involved, they may be able to support social referrals.Recommending to patient/carer or referral if within clinical services.
Being aware of importance of poverty in reducing health outcomes.
Endorsing need for health reasons for patient to use all support available.Isolation: longstanding disabling illness, absence from work, high care needs and low income lead to isolation from social networks. Very important in young people, who find it more difficult to associate with people of similar age. Isolation associated with poorer health outcomes in every illness as well as in normal health [23], through higher incidence of depression, lack of self-care, loss of social confidence, lack of mental/physical activity. Company/friendship/support where costs can be helped where necessary and which have beneficial impact on health. Pulmonary rehabilitation and other group activities.
If palliative care involved, hospice day centre or breathlessness programme/voluntary sitters (also relieves carers).
Singing for breathing, or other activities.
Other clubs and societies/professional groups that may support, e.g. AGE UK, British Legion (for ex-service people).
Other charities, e.g. Men in Sheds.Endorsing health benefit of activity to help symptoms and improve health, promoting access to information through the clinical services, e.g. at front desk. Carer exhaustion and breakdown in family relationships. Carers usually similar age to patient, often smokers, may have morbidity of own.
Difficult to express resentment/ambiguity at caring role and carers' health needs often unsupported.
Although may have feelings of “growth”, many sacrifices in caring role and patient partner may take out anger/frustration on carer.
Where carers are parents of young adults, there are many complex feelings.Improvement in health/social connectedness of patient.
Improved support for carer.Increased psychosocial support for carer, e.g. from member of clinical team (see text).
Respite for carer, e.g. volunteer sitters.
With young person, specialist family support.
Hospice team may provide support for both patient and carer.
Charities such as Breathe Easy may help.
Citizens advice bureau for carer benefits.Getting permission to contact carers' GP/primary healthcare team to highlight difficulties for carer and refer to other agencies where possible.
Impressing on carer the need to take care of own health. Be active Go for a walk or run. Step outside. Cycle. Play a game. Garden. Dance. Exercising makes you feel good. Most importantly, discover a physical activity you enjoy and that suits your level of mobility and fitness.
Exercise is good for health, both physical and psychological.
Exercise (weight-bearing) gives some protection from osteopenia/osteoporosis (e.g. common with long-term steroids or inactivity).
Exercise protects against heart disease.
Exercise reduces the chance of cancer and/or recurrence of cancer.
Allied health professionals/nurses can expertly help people find exercise suitable for their health status.
Exercise is good for reducing sensation of breathlessness.
Connect
Connect with the people around you. With family, friends, colleagues and neighbours. At home, work, school or in your local community. Think of these as the cornerstones of your life and invest time in developing them. Building these connections will support and enrich you every day.
Social isolation is bad for health.
Encourage patients to strengthen their social network, particularly if they use oxygen or feel stigmatised for any reason.
Informed social networks (e.g. Breathe Easy, Men in Sheds) can offer support when other networks (e.g. some friends) disappoint.
“Connect” is often associated with “Be active” and “Keep learning”.
Take notice
Be curious. Catch sight of the beautiful. Remark on the unusual. Notice the changing seasons. Savour the moment, whether you are walking to work, eating lunch or talking to friends. Be aware of the world around you and what you are feeling. Reflecting on your experiences will help you appreciate what matters to you.
Rumination predisposes to depression, which is associated with worse health outcomes (and linked to social isolation).
Mindfulness training (mindfulness-based stress reduction) is an evidence-based way to encourage living in the present and reducing rumination.
Other models of building psychological health include health coaching and “buddying systems”
Give
Do something nice for a friend or a stranger. Thank someone. Smile. Volunteer your time. Join a community group. Look out, as well as in. Seeing yourself, and your happiness, linked to the wider community, can be incredibly rewarding and creates connections with the people around you.
Altruism is good for health and for building personal resilience, although excess can be harmful.
Allied health professionals/nurses can help individuals participate in health-building altruistic activities and, where necessary, help people give themselves permission to not be altruistic.
Keep learning
Try something new. Rediscover an old interest. Sign up for that course. Take on a different responsibility at work. Fix a bike. Learn to play an instrument or how to cook your favourite food. Set a challenge you will enjoy achieving. Learning new things will make you more confident as well as being fun.
People with chronic illness experience many social losses; learning new skills may be a necessity for employment, for helping social confidence and morale.
It can be a way of managing stress, anxiety and any symptoms.
Compiled by the New Economics Foundation, within the UK Government’s Foresight project. Reproduced and modified from [24] with permission.
Introduction Read the notes and greet the patient/family by name. It is very distressing for patients if the clinician appears to have no knowledge of the patient or even makes basic mistakes, e.g. in diagnosis. This does not preclude you from making your own assessment of key issues. Questions to establish history of breathlessness Are you troubled by breathlessness? What makes you breathless? What helps your breathlessness? What have you stopped/reduced doing to prevent you getting breathless? Are you breathless when you are sitting completely still? What happens when you feel breathless? (e.g. How does it come on? How do you try to improve it? How long before you feel better? What makes it better/worse? Are you taking any medications to help it?) (Ask carer) What do you notice when patient X becomes breathless? How do you feel when you become breathless? Some people say being breathless makes them feel very anxious, some people even use the word panicky. Does that sound familiar? Have you always been troubled by anxiety? What do you think is causing your breathlessness? (Ask the carer the same question) Do you have times when a worsening of breathlessness does not settle as usual, or when it seems to come out of the blue/from nowhere? (Start asking about feelings/emotions/thoughts about breathlessness, which may be triggering breathlessness without the patient being aware of what is preceding it) [40] Was there a particular episode after which your breathlessness seemed to get much worse? (It is not uncommon for there to be an episode of breathlessness that is particularly frightening or associated with panic, after which breathlessness seems to get much worse generally, i.e. a “trigger” episode. Unpicking this, e.g. with the BTF model, may help bring about improvement.) What do you when this kind of crisis happens? And your wife/husband/carer/partner or other carer? (Gives a basis for education and “ritual for crises”) [18, 41] Have you attended pulmonary rehabilitation? If yes: how you did/felt about it/changes made afterwards. If not: why was this? e.g. lack of confidence, not referred, not available, etc. and rectify or consider specialist palliative care, advanced lung clinic, etc. What is the worst thing for you at the moment? (Ask carer too. Note: this may not be breathlessness, may be cough, fatigue or other concern. Ask about cough and fatigue using similar questions. See text and other boxes.) Summarise and plan Summarise what you have learned, for the patient to check. Lead onto management plans, for example: This is a very difficult symptom and sounds as if it is making life very hard for you. There has been a lot of research in this area in recent years and now we do have ways we can help. It does take a bit of time and work and different skills from different members of the team working together. I would like you to meet… - Table 3
Key non-pharmacological interventions used in managing breathlessness, with selected references
Intervention Predominant cycle of the BTF model Evidence strength Evidence origin Practical comment Pulmonary rehabilitation Functioning ++++ Cochrane [47] Patient may lack confidence and need one-to-one support or breathlessness service first. Hand-held fan Breathing +++ [48, 49] Evidence suggests this reduces breathlessness recovery time, supports exercise, increases self-efficacy. No important adverse effects, use in all patients, giving advice on how/why used. Cognitive behavioural therapy Thinking ++ [9, 50] May require specialist psychological support. Breathing techniques Breathing ++ [9] Need to be personalised, specialist respiratory physiotherapy advice required. Inspiratory muscle training Breathing ++ [9] Needs to be personalised, specialist respiratory physiotherapy advice required. Pedometer Functioning ++ [9] Pedometer training, e.g. as used by CBIS, increasing activity by 5% weekly from baseline. Mindfulness-based stress reduction Thinking ++ [9] Requires 8-week course in standard evaluated form. Needs formal teaching even in abbreviated form. Relaxation Breathing ++ [9] Various techniques, needs to be personalised. Walking aids Functioning ++ [51] Should be standard assessment for every breathless individual, also possibly affects thinking via confidence. Positioning Breathing + [9] Best position for individual may not fit standard ideas. Acupuncture Breathing? + [9] Needs specialist training. Principal alkaloid in opium, although most morphine is now synthetic (therefore opioid, not opiate).
Powerful mu agonist, with effects on areas rich in mu receptors: brain stem, posterior amygdala, hypothalamus, thalamus, nucleus caudatus, putamen, certain cortical areas, and the lungs.
Mu receptors also common in spinal cord/gastrointestinal tract.
Some analgesic activity from metabolites of morphine (M3G, M6G).
Adverse effects mediated through other receptors, e.g. kappa and delta.
Strong analgesic: not recommended for long-term use in non-malignant pain after recent misuse and high levels of opioid addiction primarily related to oxycodone (see box 7).
Available in immediate-release and modified-release forms.
Undergoes significant first-pass metabolism, hence variation in level after same dose in different people.
Most common adverse effects need active management (e.g. treatment of nausea and vomiting or constipation) or reduction in dose and then slow titration upwards again (e.g. sedation) [62–64].
Adverse effects of opioids may be limiting factor in patients accepting treatment, hence initiate low dose and increase slowly (wait at least 7 days before dose titration).
Modified-release form should not be used in those with significant renal/hepatic impairment (e.g. estimated glomerular filtration rate <25 mL·min−1) due to accumulation risk from active metabolites; care should also be taken in elderly/frail/cachectic patients for the same reason.
The principle (as in other prescribing) is to use minimum effective dose for shortest time.
Licensed preparation (Therapeutic Goods Administration, Australia) Sustained-release morphine (10 mg/24 h; 20 mg/24 h capsules) as Kapanol# now has an extension to its licensed indication to include chronic breathlessness.
Should only be used in the palliative care of patients with “distressing breathlessness due to severe COPD, cardiac failure, malignancy or other cause, after treatments for the underlying cause(s) of the breathlessness have been optimised and non-pharmacological treatments are not effective”.
Dose: start at 10 mg·day−1, and limit to maximum of 30 mg·day−1.
Must be initiated by a specialist knowledgeable in its use.
#: although many countries do not have access to Kapanol, most have access to modified/sustained-release preparations that allow similar steady-state blood levels; total initial daily starting dose can be 10 mg in 24 h on Kapanol.
