Palliative care for Non-Malignant Respiratory Disease

It’s week 4 of our #ebnjc December blog series and this week we celebrate the importance of research & scholarship in nursing with guest blogs from Clare McVeigh, Professor Roger Watson, Professor Jan Dewing & Professor Elizabeth Robb.

In our #ebnjc blog series we have already celebrated children’s nursing; with blogs from Jayne Pentin, Kirsten Huby & Marcus Wootton, learning disability nursing; with blogs from Professor Ruth Northway, Jonathan Beebee & Amy Wixey and midwifery; with blogs from Louise Silverton CBE , Gina Novick & Lynsey Wilgaus.

Today we are delighted to kick off this week’s blog series with Clare McVeigh, a lecturer in palliative care for Northern Ireland Hospice, on the background to her award-winning research on palliative care in non-malignant respiratory disease.


Challenges in palliative care for non-malignant respiratory disease

Non-malignant respiratory disease (NMRD) is an umbrella term that includes Interstitial Lung Disease (ILD), Bronchiectasis and Chronic Obstructive Pulmonary Disease (COPD) (National End of Life Care Intelligence Network 2011). Two hundred and ten million people worldwide have a diagnosis of COPD and although the exact figure is not known, it is estimated that more than millions have other forms of chronic respiratory disease (World Health Organisation (WHO) (2008). Interstitial lung disease is a diverse group of pulmonary disorders that are grouped together as they have similar radiographic, clinical, physiologic or pathologic manifestations and are classified as restrictive lung disorders (Schwarz and King 2009).  The cause of ILD is typically not known but the two most common forms are sarcoidosis and idiopathic pulmonary fibrosis (IPF).  Bronchiectasis is the name given to a dilation of the bronchial tree that cannot be reversed (Lange and Walsh 2007). It can be caused by an infection, mucociliary clearance defects, immune defects, allergic bronchopulmonary aspergillosis, localized bronchial obstruction or gastric aspiration (Pryor and Prasad 2008). Although Bronchiectasis is classified as an obstructive lung disorder, and may at first appear to be COPD, the evaluation and management of the disease differs to the way COPD is assessed and treated (American Thoracic Society 2012). COPD is a progressive disease that results in lung parenchyma being damaged and the airflow in the lungs being obstructed (Currie 2011). COPD is a chronic life limiting illness and patients are normally diagnosed as being in the terminal phase of their illness when acute or chronic respiratory failure is present (Carlucci et al. 2012).

Patients with NMRD and their carers have a range of biopsychosocial-spiritual needs that healthcare professionals need to recognise and manage effectively. Several factors can create barriers in relation to the effective delivery of palliative care to patients with NMRD and healthcare professionals play a key role in recognising these barriers and facilitating the palliative care provided to this group of patients (Mc Veigh 2015). Due to the uncertain disease trajectory, healthcare professionals can find it difficult to assess disease progression in most patients with a diagnosis of NMRD. This can also create a barrier for healthcare professionals trying to make decisions regarding the need for specialist palliative care input for patients with NMRD (O’Connor et al. 2011). There has also been some evidence in the UK to suggest that patients with advanced NMRD have less access to specialist palliative care services than those with a malignant lung disease (Partridge et al. 2009). Often this may be related to the misconception that palliative care is only appropriate in cancer, and some patients with NMRD can also hold this view (Hayle et al. 2013). This highlights that the appropriateness of palliative care for patients with NMRD is still not adequately recognised.

The integration of palliative care should happen early in NMRD and the management of the illness should involve collaboration between the patient’s primary physician and a palliative care physician to allow the patient to have a smooth transition from active treatment to palliative care (Choudhuri 2012). Patients with NMRD should receive palliative care even if they are still actively receiving treatment to slow or stabilize their illness (Duck 2008). Although NMRD is on the increase internationally and nationally, evidence suggests some patients with NMRD and their caregivers do not receive the same standards of palliative care as patients with malignant respiratory disease (Davidson et al. 2003, Goodridge et al. 2008, Partridge et al. 2009). It is important that practitioners are aware of the palliative care required by these patients, their families and their informal caregivers in order to enable them to tailor their responses to the particular needs of this client group (Mc Veigh et al. 2014).



American Thoracic Society (2012) What Is Chronic Obstructive Pulmonary Disease (COPD)? (Last Accessed: 22/07/2012).

Carlucci A, Guerrieri A, Nava S (2012) Palliative care in COPD patients: is it only an end-of-life issue? European Respiratory Review. 21, 126, 347-354.

Choudhuri A H (2012) Palliative care for patients with chronic obstructive pulmonary disease: Current perspectives. Indian Journal of Palliative Care. 18, 6-11.

Currie G P (2011) ABC of COPD. 2nd Edn. John Wiley and Sons, West Sussex.

Davidson P, Introna K, Daly J, Paull G, Jarvis R, Angus J, Wilds T, Cockburn J, Dunford M, Dracup K (2003) Cardiorespiratory Nurses’ Perceptions of Palliative Care in Non-malignant Disease: Data for the development of Clinical Practice. American Journal of Critical Care. 12, 47- 53.

Duck A (2008) Nursing Patients with Interstitial Lung Disease. Nursing Times. 104, 9, p.p. 46- 49.

Goodridge D, Lawson J, Duggleby W, Marciniuk D, Rennie D, Stang M (2008) Health care utilization of patients with chronic obstructive pulmonary disease and lung cancer in the last 12 months of life. Respiratory Medicine. 102, 6, 885- 891.

Hayle C, Coventry P A, Gomm S, Caress A L (2013) Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: A qualitative study. Palliative medicine. 0269216313486719.

Lange S, Walsh, G (2007) Radiology of Chest Diseases. 3rd Edn. Thieme, New York.

Mc Veigh, C. (2015) ‘Palliative Care for patients with non-malignant respiratory disease.’ Nursing Standard. 29 (36), p.p. 44-51.

Mc Veigh C., Reid J., Hudson P., Larkin P., Porter S. & Marley A.M. (2014) ‘The experiences of palliative care health service provision for people with non-malignant respiratory disease and their caregivers: an all-Ireland study.’ Journal of Advanced Nursing, 70 (3), pp. 687-697.

National End of Life Care Intelligence Network (2011) Deaths from Respiratory Diseases: Implications for End of Life Care in England. National End of Life Care Intelligence Network, Bristol.

O’Connor M, Harris R, Lee S (2011) Non-malignant disease: a pathway for quality care at the end of life. British Journal of Neuroscience Nursing. 7, 2, 470-474.

Partridge M R, Khatri A, Sutton L, Welham S, Afmedzai S H (2009) Palliative care services for those with chronic lung disease. Chronic Respiratory Disease. 6, 13- 17.

Schwarz M I, King T E (2009) Interstitial Lung Disease. Peoples Medical Publishing House: USA.

World Health Organisation (WHO) (2008) Global Alliance against Chronic Respiratory Disease Action Plan 2008–2013. WHO, Italy.


EBN Research Simple Series:

Research Made Simple: Reviewing the literature
Research Made Simple: Bias in research

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