Improving the quality of life of people with advanced respiratory disease and severe breathlessness

Abstract

Advanced respiratory disease imposes a greater symptom burden than many cancers but not does have comparable recognition of the need for supportive and palliative care or the infrastructure for its systematic delivery. Consequently, many people with advanced respiratory disease (and those closest to them) have a poor quality of life, disabled by chronic breathlessness, fatigue and other symptoms. They are socially isolated by the consequences of long-term illness and are often financially impoverished. The past decade has seen an increasing realisation that care for this group must improve and that symptom management must be prioritised. Clinical guidelines recommend person-centred care, including access to supportive and palliative care as needed, as part of standard medical practice. Advanced lung disease clinics and specialist breathlessness services (pioneered within palliative care) are developing within respiratory medicine services but are provided inconsistently. This review covers the comprehensive assessment of the patient with advanced respiratory disease, the importance of supporting carers and the current best practice in the management of breathlessness, fatigue and cough. It also suggests ways to incorporate person-centred care into the general respiratory clinic, assisted by better liaison with specialist palliative and primary care. Emerging evidence shows that excellent symptom management leads to better clinical outcomes and reduces inappropriate use of emergency medical services.

Key points: People living with advanced respiratory disease and severe chronic breathlessness (and those closest to them) have a poor quality of life.Chronic breathlessness is a disabling symptom, and acute-on-chronic/episodic breathlessness is frightening to experience and observe.Chronic breathlessness imposes profound physical limitations and psychosocial burdens on those suffering from it or living with someone experiencing it.Fatigue and cough are two other cardinal symptoms of advanced respiratory disease, with very detrimental effects on quality of life.The impact of all these symptoms can be alleviated to a variable extent by a predominantly non-drug complex intervention.Many of the interventions are delivered primarily by allied health or nursing professionals.Doctors, nurses and other health professionals also need to play an active part in promoting quality of life as part of excellent medical care.A person-centred, psychologically informed approach is needed by all clinicians treating patients with advanced respiratory disease.

Educational aims: To give specialist respiratory clinicians practical clinical tools to help improve the quality of life of their patients with advanced respiratory disease and chronic breathlessness.To outline the evidence base for these interventions with reference to definitive sources.To highlight the importance of person-centred care in people with respiratory disease at all stages of illness.

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.