O10. Palliative and supportive care

Palliative care – ideally from a multidisciplinary team which includes the primary care team – should be considered early, and should include symptom control and addressing psychosocial issues

Patients with COPD experience many distressing symptoms including breathlessness, fatigue, depression, anxiety, cough and insomnia (Miravitlles 2017). However, these symptoms are often poorly controlled and undertreated in advanced disease (Young 2012, Johnson 2012, Blinderman 2009, Ferrell 2018). Below are summarised the key management approaches for three key symptoms in COPD: breathlessness, fatigue, and cough, followed by principles of palliative care in COPD.

O10.1 Symptom management & supportive care

O10.1.1 Breathlessness

Breathlessness is almost universal amongst people with severe COPD; however, this symptom remains under-recognised and undertreated (Ahmadi 2016, Blinderman 2009, Gysels 2008).  Therefore it is important to specifically ask about breathlessness and consider using a simple scoring tool (such as the modified Medical Research Council Breathlessness scale – see Box 3 in C2.1 History above) to quantify breathlessness. Chronic breathlessness syndrome is defined as breathlessness that persists despite optimally treating all the underlying causes and which results in disability (Johnson 2017). Symptom-directed, non-pharmacological strategies are evidenced as the main approach for people with COPD and chronic breathlessness, as increasing evidence suggests that pharmacological treatments are not beneficial for symptoms.

O10.1.1.1 Non-pharmacological management of breathlessness

Evidence-based, safe and accessible, non-pharmacological strategies should be applied as the main approach to manage breathlessness in COPD. Key strategies include smoking cessation, the use of a handheld fan to move cool air on the face, breathing exercises, physical activity, pulmonary rehabilitation, and self-management education (Box 8) (Galbraith 2010, Johnson 2016, Marchetti 2015, Marciniuk 2011). Additionally, other management strategies such as chest wall vibration (Marciniuk 2011), neuromuscular electrical stimulation (Vieira 2014), activity pacing and energy conservation may be helpful. The multicomponent services described previously focus on non-pharmacological strategies to manage symptoms (Spathis 2024).

The use of increased airflow directed at the face or cheek (handheld motorised fans), as well as the use of breathing techniques (including pursed lip breathing, diaphragmatic breathing, and Yoga) have been recommended by the 2024 ERS clinical practice guideline to manage breathlessness in people with serious respiratory illness (Holland 2024) [level I evidence]. These suggestions are based on two separate meta-analyses of increased airflow (4 RCTs) and breathing techniques (73 RCTs, 5479 participants) (Burge 2024) [level I evidence].  Increased airflow is particularly useful in reduction and assistance in recovery time from exertional breathlessness, and no adverse effects were reported (Holland 2024). Breathing techniques consistently improved health-related quality of life in patients with breathlessness and also were associated with some improvements in breathlessness (specifically Yoga breathing techniques) (Burge 2024).

There is little evidence to support the use of oxygen therapy in patients with dyspnoea and mild hypoxaemia (Abernethy 2010) [evidence level II]. The prescription of oxygen in these clinical situations should be made on an individual basis. The 2024 ERS clinical practice guideline similarly concludes that, for people with advanced respiratory illness and mild to moderate hypoxaemia at rest or hypoxaemia only on exertion, there is insufficient evidence (low certainty) to support or refute use of supplemental oxygen; decisions should therefore be individualised  (Holland 2024).

As breathlessness management is complex, requiring multiple approaches, in addition to significant self-management education of patients and their carers, individualised written breathlessness management plans may be useful (Qian 2018).

Box 8: Breathlessness management strategies

O10.1.1.2 Pharmacological management of breathlessness

The 2024 ERS clinical practice guideline (Holland 2024) [level I evidence] makes a conditional recommendation against the use of orally-administered opioids for management of breathlessness experienced in daily life in people with advanced respiratory illness. This recommendation based on  a linked systematic review and meta-analysis (Smallwood 2024) of 10 studies (795 participants) comparing short-term (1-4 weeks) oral opioids with placebo or other non-opioid comparators. The review found no meaningful benefit of oral opioids on daily dyspnoea or on quality of life. Importantly, a higher-frequency of adverse effects including constipation, nausea, and drowsiness, were observed, as well as a high incidence of serious adverse events (up to 33% of participants receiving opioids (Ekstrom 2022) including hospitalisation and death in rare cases (Rice 1987, Abdallah 2017, Ekstrom 2022). Further data on long-term efficacy and safety of opioids for chronic breathlessness remains needed. F Evidence from a cohort study of 811 patients with COPD further supports caution, with opioids with or without benzodiazepines associated with higher all-cause mortality among patients over 60, whilst benzodiazepines alone was linked to increased all-cause mortality in those under 60 (Jiang 2024) [level III-2 evidence].

A separate meta-analysis comparing oral opioids with placebo in the laboratory setting during exercise testing (5 studies, 70 participants) demonstrated only small benefits on exertional dyspnea  (3 studies administering up to 30mg oral morphine, 1 study administering 15mg hydrocodeine, 1 study administering 1mg/kg dihydrocodeine) (Smallwood 2024). Nebulised opioids were not included in the aforementioned systematic review, as there is little evidence to support nebulised opioids in the treatment of breathlessness (Barnes 2016).

There is no evidence to support a beneficial effect from benzodiazepines for the relief of breathlessness in patients with COPD, however, they may be considered as a second or third line treatment when non-pharmacological strategies and opioids have failed (Simon 2016). A randomised controlled trial of 15 or 45mg of mirtazapine daily for 56 days compared to placebo (225 participants with COPD or interstitial lung disease) also found no effectiveness at improving severe breathlessness, though notably this trial was considerably underpowered due to challenges recruiting participants during the pandemic (Higginson 2024).

O10.1.1.2.1 Opioid use at the very end of life

Though there is a robust evidence base showing lack of benefits from opioids on dyspnea experienced in daily life in people with COPD, there is a scarcity of evidence regarding people with COPD at the very end of life. Opioids may still play a role in alleviating dyspnea in this circumstance as part of an individualised and carefully monitored treatment plan. The opioid dose required for symptom control in this circumstance should be established by titration, starting at a low dose and increasing until efficacy is achieved. Laxatives should be prescribed to prevent constipation and patients should be warned of side effects. Please refer to PBS criteria for further detail: http://www.pbs.gov.au/medicine/item/11760Y-8349K.

In summary, opioids are not recommended for the routine management of breathlessness in daily life in COPD due to a lack of demonstrated benefit and a high risk of adverse effects. There is no evidence for or against using opioids for symptom management in people in the final days of life.

O10.1.2 Fatigue

Fatigue is experienced in up to 95% of people living with COPD (Ebadi 2021, Nese 2022, Wingardh 2020, Chegeni 2018, Clark 2023). It is a complex and persistent symptom characterised by an intense and persistent sense of physical and emotional exhaustion that does not improve with rest or sleep (Ebadi 2021).

The mechanisms underlying fatigue in COPD are multi-factorial, including deconditioning, systemic inflammation, comorbid anxiety and depression, nutritional deficits, sleep disturbance and sustained effort of breathlessness (Ebadi 2021, Gruet 2018). This complexity necessitates a comprehensive, tailored management strategy. Practical recommendations for managing patients with respiratory disease-related fatigue are summarised in Box 9 (Disler 2025). 

Physical reconditioning, particularly through Graded Exercise Therapy (e.g. within a pulmonary rehabilitation program), remains the cornerstone of management and targets improved endurance and strength to reduce fatigue (Burge 2024) [level I evidence]. A recent meta-analysis of eight RCTs (n = 375) confirmed aerobic, resistance, and combined training improved fatigue compared with usual care

Self-management education is central to fatigue management and should include activity pacing, planning and prioritisation strategies  (Bourne 2022). Pacing, alternating activity with rest and distributing energy expenditure across the day, helps prevent exhaustion and enables sustained participation in meaningful, as well as reconditioning, activities. Education on energy conservation, simplification of daily tasks, and environmental adaptations can support patients to maintain function while reducing symptom burden (Benzo 2022).

While fatigue was seldom a primary outcome in the 2017 Cochrane review of self-management interventions (Lenferink 2017; 27 RCTs, >6,000 participants), recent trials have directly evaluated fatigue. A 12-week remote patient-monitoring and health-coaching RCT (n = 375) showed statistically and clinically significant improvements in CRQ-Fatigue (and all CRQ domains) in  the intervention group, compared with usual care, with benefits sustained to 24 weeks (Benzo 2022). Similarly, a pragmatic primary-care evaluation of the SPACE for COPD (C) program demonstrated statistically and clinically significant improvements in CRQ-fatigue (alongside dyspnoea, emotion, and mastery), confirming the feasibility and impact of structured, group-based self-management education in real-world settings (Bourne 2022).

Co-existing depression and anxiety, with breathlessness, should be identified and managed, as these worsen functional limitation and symptom distress and reduce engagement in exercise and self-management (Maddocks 2017). Optimising sleep hygiene, nutrition and management of comorbidities should also form part of holistic management strategy.

Pulmonary rehabilitation programs that integrate physical conditioning with structured education  are often under-utilised, however remote delivery programs have been shown to be equivalent to centre-based programs and may enhance access for some patients (Cox 2025).

Permission granted by Medicine Today for use in the COPD-X Plan Guidelines. © Medicine Today 2025. https://medicinetoday.com.au/mt/2025/march/supplements/topics-copd-collection (Disler 2025)

O10.1.3 Cough

Chronic cough can be highly disruptive and distressing for people with COPD. Interventions demonstrating effectiveness for cough in people with COPD are broadly lacking (Holland 2024). Opioids have not been demonstrated to be effective at reducing cough in people with COPD (Verberkt 2020). A 2020 clinical practice guideline from the ERS provides general guidance for management of cough, however this is not specific to COPD (Morice 2020).

The mechanisms which underpin chronic cough in COPD may differ from those seen in chronic refractory cough. Patients with COPD and coexisting chronic cough demonstrate heightened cough reflex sensitivity, yet retain an ability to voluntarily suppress cough when compared to those with chronic refractory cough, who are unable to do so (Cho 2021). This suggests that while cough in COPD shares some features with chronic refractory cough, the underlying pathways are not identical and may warrant disease-specific approaches to management.

O10.2 Palliative care

Palliative care aims to improve the quality of life of patients and their families when facing life-threatening illness, through the prevention and relief of suffering by controlling symptoms and addressing physical, psychosocial and spiritual issues (World Health Organization (WHO) 2020). Patients with COPD experience many distressing symptoms including breathlessness, fatigue, depression, anxiety and insomnia (Miravitlles 2017). However, these symptoms are often poorly controlled and undertreated in advanced disease (Young 2012, Johnson 2012, Blinderman 2009, Ferrell 2018).

In Australia only 17.5% of COPD patients access any palliative care prior to a terminal admission (Smallwood 2018) and only 2.6% of palliative care admissions are for COPD (Rosenwax 2016).  Utilisation of palliative care amongst people with COPD is similarly low in Belgium (Beernaert 2013), Canada (Kendzerska 2019), the United States (Suen 2024) and UK Bloom 2018). When specialist palliative care is utilised, it often initiated very late in the disease trajectory, with 29% of Australian decedents with COPD accessing care only during a terminal admission (Smallwood 2018).

General palliative care practices, such as proactive symptom management and alignment of treatment with patients’ goals, should form part of routine care practices, delivered by primary and respiratory specialist physicians, nurses and allied health professionals (Holland 2024). For patients with complex symptoms and management needs, referral to specialist palliative care may be required (See 4 below) (Halpin 2018). Specialist palliative care services often work as interdisciplinary teams and may include a wide range of health professionals offering support in hospitals, community or hospices.

There is a need to improve patient and carer access to palliative care approaches. A retrospective cohort study of people with COPD from Belgium demonstrated that receiving one or more specialist palliative care home visits more than 30 days before death was associated with increased appropriate patient-centered medical resource use and lower inpatient and total costs in the last 30 days before death (Scheerens 2019). For people with COPD well-described barriers to accessing palliative care include:

• Difficulty prognosticating
• Patients’ fears of abandonment by their usual physician (
• Perceptions that palliative care is only for end-of-life care or people with cancer
• Clinicians’ lacking time to discuss palliative care, being reluctant to take away hope, and having insufficient knowledge (Hardin 2008, Knauft 2005)
• Current palliative care services are already over-stretched (Quill 2013).

Given the difficulty in determining prognosis for an individual with COPD, including palliative care principles and practices into COPD management should not be dependent on prognosis, but offered according to the needs of the individual or their carer. Thus symptom palliation and palliative care approaches should be considered earlier as patients become more symptomatic, occurring concurrently with active, disease-directed treatment.

O10.2.1 Benefit of early introduction of a palliative approach

Palliative care encompasses early supportive care, in addition to traditional models of high-quality, care for patients close to death. Early introduction of palliative and supportive care principles is recommended for patients with COPD and persisting symptoms (Global Initiative for Chronic Obstructive Lung Disease (GOLD) 2024, Holland 2024, Janssen 2023, Sullivan 2022, Yang 2023), and is known to improve survival and symptom control, and to reduce distress experienced by patients and families in the final stages of life (Higginson 2014) .

Late involvement of palliative care conversely deprives people with COPD of opportunities to discuss and document their wishes for care and end of life care preferences. In Australia, Ross et al reported that investigation burden was still significant at end of life for patients dying in hospital with COPD, with many patients still undergoing diagnostic investigation even in the last 2 days of life (Ross 2021) [evidence level III-3]. Similarly, another Australian retrospective medical record audit reported that documentation of preferred place of death and multidisciplinary team planning were sparse among patients who had died in hospital from COPD, despite clear indicators of decline, including a median 3 hospital admissions within the last 12 months of life (Disler 2024).

New models of well organised, integrated respiratory and palliative care may overcome these barriers (Smallwood 2019, Higginson 2014, Farquhar 2016, Janssen 2010, Koolen 2018). The 2024 European Respiratory Society clinical practice guideline provides the most current and comprehensive overview of the evidence regarding symptom management in people with COPD and other advanced respiratory illness (Holland 2024) [level I evidence]. The guideline  recommends using multicomponent services (defined as holistic, multidisciplinary, symptom-directed services that provide a complex intervention involving mostly non-pharmacological support e.g., breathing techniques) to manage symptoms in people with serious respiratory illness. This recommendation is based on a meta-analysis of five randomised controlled trials (439 participants) investigating multicomponent interventions involving a multidisciplinary team, which illustrated a clinically and statistically significant improvement in health related quality of life, if not breathlessness specifically (Spathis 2024) [level I evidence].

O10.3 Goals of care and Advance care plans

These conversations should occur as several discussions over multiple visits. This has the advantage of gently adding each new topic gradually, thereby reducing the chance of causing distress.

Topics to consider:

• Patients’ and carers’ values and beliefs
• Disease severity, symptoms, quality of life and possible prognosis
• What death might be like
• End-of-life care wishes, including place of death preferences
• Treatment options including non-invasive ventilation, admission to an intensive care unit, intubation for mechanical ventilation and resuscitation preferences (specialist input may be required)

All patients should routinely and regularly be asked if they wish to discuss or update their goals of care. More than a third of patients with severe medical problems were observed to change their preferences regarding life supporting measures at least once over a period of twelve months (Janssen 2012).

While the focus of conversations should be on the patient’s wishes and values for care, through discussing goals of care may raise the topic of medical power of attorney. Some patients may raise that they would like to write an advance treatment directive, which must also be signed by a medical practitioner. It is vital that other health professionals involved in the patient’s care and family members or carers are fully aware of the person’s future care wishes, and of the existence of any advance treatment directive.

Consideration should be given to appointing an Enduring Power of Attorney (EPOA) for financial matters, as well as an EPOA for medical management. There are multiple online resources, e.g. from the Office of the Public Advocate in Victoria: http://www.publicadvocate.vic.gov.au/,  but these are also available through any solicitor or legal service and may vary between States and Territories of Australia.

O10.4 Referral to specialist palliative care

Patients with distressing symptoms or other challenging situations may benefit from referral to a specialist palliative care team to assist the team of primary treating clinicians. Reasons for referral may include:

• Management of persisting refractory symptoms
• Psychosocial, spiritual or existential care
• Co-ordination of care
• Active management of the terminal phase (at home or in a hospice)
• Emotional care and bereavement support of relatives and carers

Key points

1. The introduction of palliative and supportive care principles and discussion of goals of care should be routine in patients with persisting symptoms despite optimal disease-directed treatment
2. These approaches should be considered early and should include symptom control and addressing psychosocial and spiritual issues
3. Active treatment of persisting symptoms or challenging issues may require a multidisciplinary team (which includes primary care, respiratory medicine, and specialist palliative care). Integrated respiratory and palliative care services can support access to multi-disciplinary care.

Evidence-based, safe and accessible, non-pharmacological strategies should be applied as the main approach to manage breathlessness and fatigue in COPD.