Anne Marie Marley 
There are over 30,000 deaths from chronic obstructive pulmonary disease (COPD) in the UK each year,[1] yet the palliative care needs of people with end-stage COPD often go unrecognised, despite their multiple interactions with healthcare professionals in various settings.[2]
It is also acknowledged that patients experience a heavy burden of physical symptoms, profound psychological distress, and significant spiritual, social, and practical needs – all of which must be identified if we are to adequately support them and their carers as their condition declines.[3],[4]
This article will discuss:
- How to identify COPD patients with supportive and palliative care needs using the Gold Standards Framework prognostic indicators[5]
- The process a respiratory multidisciplinary team (MDT) uses to assess palliative care needs and deliver holistic supportive care planning to optimise quality of life
Recognising the palliative stage in COPD
Both the National Institute for Health and Care Excellence (NICE) COPD Guideline (2022)[6] and the Global Initiative for Chronic Obstructive Lung Disease (2026)[7] briefly mention palliative and end of life care. However, neither give any detail on identification or prognosis, instead directing readers to general palliative care guidance.
People with COPD often have other multi-morbidities making it challenging to identify when their chronic lung disease is contributing to increasing symptoms and a decline in daily function.[8]
Many patients have serious COPD exacerbations, for which non-invasive ventilation may be initiated early to manage respiratory failure.[9] Despite this, their deterioration is not recognised as having entered a palliative phase of the disease, even if their resuscitation status has been discussed.[10]
Healthcare professionals may be uncertain about patients’ actual wishes if they haven’t been discussed and they may be reluctant to start such conversations when the prognosis is uncertain. Patients and their informal care givers are also often unaware.[11]
Prognosis-driven palliative care in COPD
In 2023, an European Respiratory Society (ERS) Taskforce published recommendations for initiating and integrating palliative care into routine respiratory care for adults with COPD and ILD.[12] It defined palliative care as a holistic and multidisciplinary person-centred approach aimed at controlling symptoms, improving quality of life for people experiencing serious health-related suffering from their lung disease, and providing support for their informal caregivers.
The European Guideline recognises that active disease management and palliative care are complementary. It highlights that starting Advanced Care Planning discussions can be challenging, may require training, and sometimes needs input from specialist palliative care services.
If two or more of the GSF Prognostic Indicators are present in a patient with COPD it could suggest the patient may be entering the last year of life:[13]
- Disease assessed as severe-FEV1 <30%
- Recurrent hospital admissions (at least 3 in last 12 months due to COPD)
- Long term oxygen therapy
- MRC grade 4/5 – shortness of breath after 100 metres on the level of confined to house
- Signs and symptoms of right heart failure
- Combination of other factors i.e. anorexia, previous ITU/NIV, resistant organisms
- More than 6 weeks of systemic steroids for COPD in preceding 6 months
The integrated MDT approach
Within our Integrated Respiratory MDT at Belfast Health and Social Care Trust, we can identify patients who are admitted to hospital or experiencing repeated exacerbations at home. By managing their long-term oxygen therapy and home ventilation, we can monitor changes and track any deterioration in their condition. It is also routine practice to assess the psychological wellbeing of the person for signs of anxiety and depression.
Being able to carry out home visits helps highlight any increasing functional needs, as well as whether the person is becoming more dependent or housebound.
The Surprise Question[14] can prompt discussion of the patient at an MDT meeting and allow for the earlier initiation of supportive and palliative care planning. This may include symptom management, referrals within the team to occupational therapy, social support, or our clinical psychologist if needed, with guidance available from specialist palliative care colleagues.
The team has completed communication skills training and can initiate more detailed Advanced Care Planning and include the persons preferred place of care. This process also involves the Primary Care and District Nursing teams.[15]
Conclusion
It is important to have an agreed process for identifying the palliative care needs of patients with end-stage lung disease, and collaboration with the entire MDT is essential. The person and their caregivers must remain central to the process and the focus must remain on what matters most to them. As Dame Cicely Saunders said, “we will do all we can not only to help you die peacefully, but also to help you live as well as possible until you die.”[16]
Any advice given and opinions expressed in this article are those of the author and do not reflect the view of Chiesi Limited (Chiesi). All content in this article is for informational and educational purposes only. Although Chiesi strives to always provide accurate information, it is not responsible for and does not verify for accuracy any of the information contained within.
[1] Asthma + Lung UK. COPD in the UK. Delayed Diagnosis and Unequal Care. 2022. Available at: https://www.asthmaandlung.org.uk/sites/default/files/2023-03/delayed-diagnosis-unequal-care.pdf
[2] Bloom CI, Slaich B, Morales DR, Smeeth L, Stone P, Quint JK. Low uptake of palliative care for COPD patients within primary care in the UK. Eur Respir J. 2018 Feb 14;51(2):1701879
[3] Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax. 2000;55:1000-1006
[4] Jabbarian LJ, Zwakman M, van der Heide A et al. Advance care planning for patients with chronic respiratory diseases:a systematic review of preferences and practices. Thorax. 2018;73(3):222-30
[5] Smith LE, Moore E, Ali I, et al. Prognostic variables and scores identifying the end of life in COPD: a systematic review. Int J Chron Obstruct Pulmon Dis. 2017;12:2239-2256
[6] NICE. Chronic Obstructive Pulmonary Disease in over 16s:diagnosis and management (2022). Available at: www.nice.org.uk/guidance/ng115
[7] Global Initiative for Chronic Obstructive Lung Disease (2026). Available at: https://goldcopd.org/wp-content/uploads/2025/12/GOLD-REPORT-2026-v1.3-8Dec2025_WMV.pdf
[8] Santos NCD, Miravitlles M, Camelier AA, et al. Prevalence and Impact of Comorbidities in Individuals with Chronic Obstructive Pulmonary Disease: A Systematic Review. Tuberc Respir Dis (Seoul). 2022;85(3):205-220
[9] Hill NS. Noninvasive positive pressure ventilation for respiratory failure caused by exacerbations of chronic obstructive pulmonary disease: a standard of care?. Crit Care. 2003;7(6):400-401
[10] Almagro P, Ponce A, Komal S, et al. Multimorbidity gender patterns in hospitalized elderly patients. PLoS One. 2020;15(1):e0227252
[11] Ngwenya N, Crang C, Farquhar M, et al. Communicating uncertainty: contrasting the communication experiences of patients with advanced COPD and incurable lung cancer. Fam Pract. 2021;38(5):637-643
[12] Janssen DJA, Bajwah S, Boon MH, et al. European Respiratory Society clinical practice guideline: palliative care for people with COPD or interstitial lung disease. Eur Respir J. 2023;62(2):2202014
[13] The GSF Prognostic Indicator Guidance. Available at: https://www.futureplanning.org.uk/uploads/8/0/4/0/80407130/__gsf_prognostic_indicator_guidance.pdf
[14] Downar J, Goldman R, Pinto R, et al. The “surprise question” for predicting death in seriously ill patients: a systematic review and meta-analysis. CMAJ. 2017;189(13):E484-E493
[15] Veigh CM, Reid J, Larkin P, et al. The provision of generalist and specialist palliative care for patients with non-malignant respiratory disease in the North and Republic of Ireland: a qualitative study. BMC Palliat Care. 2017;17(1):6
[16] Cicely Saunders International. An action plan for better palliative care. Available at: https://csiweb.pos-pal.co.uk/csi-content/uploads/2021/01/Cicely-Saunders-Manifesto-A4-multipage_Jan2021-2.pdf
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