Chronic obstructive pulmonary disease (COPD) is a progressive lung condition which ranks as the third leading cause of death worldwide (Celli et al. Reference Celli, Fabbri and Criner2022; World Health Organization 2023). Advanced stages of COPD are associated with substantial symptom burden and reduced quality of life (QOL) (Melhem et al. Reference Melhem, Savage and Lehane2021). Contact with health services for people with COPD usually consists of visits by a primary care team, including general practitioners and nurses, as well as emergency hospital admissions that are prompted by disease exacerbations (Elkington et al. Reference Elkington, White and Addington-Hall2005). However, access to other specialist forms of support, such as palliative care, is often inaccessible for individuals with COPD (Beernaert et al. Reference Beernaert, Cohen and Deliens2013; Goodridge et al. Reference Goodridge, Lawson and Duggleby2008; Rosenwax et al. Reference Rosenwax, Spilsbury and McNamara2016; Rush et al. Reference Rush, Hertz and Bond2017).
Palliative care should be available for patients with COPD to focus on managing their condition in holistic ways which can lead to an improvement in QOL with effective communication and psychosocial support for carers and patients. It is essential to focus on symptom-related treatment, given the high prevalence of physical symptoms and distress connected to COPD, with palliative care interventions having promise of substantial benefits (Blinderman et al. Reference Blinderman, Homel and Billings2009).
Indeed, the impact of palliative care interventions on patients’ sense of mastery, especially in alleviating breathlessness, highlights the importance of a holistic approach to symptom management and the provision of psychosocial support (Higginson et al. Reference Higginson, Bausewein and Reilly2014). Early integration of palliative care, with its person- and team-centered approach, may prove valuable for patients with COPD, thus enhancing their understanding and acceptance of the condition, whilst living according to their physical capabilities with improved psychosocial support (Marx et al. Reference Marx, Nasse and Stanze2016).
While palliative care services are available for people with COPD, research suggests that they are not effectively utilized by individuals with COPD (Halpin Reference Halpin2018; Inbadas et al. Reference Inbadas, Carrasco and Gillies2018). The concern surrounding insufficient palliative care for people with COPD was initially reported in a study with COPD patients with lung cancer (Gore et al. Reference Gore, Brophy and Greenstone2000). Since then, literature has consistently emphasized the low accessibility of palliative care services and the unmet needs of patients in end-of-life care (Halpin Reference Halpin2018; Schroedl et al. Reference Schroedl, Yount and Szmuilowicz2014; Vermylen et al. Reference Vermylen, Szmuilowicz and Kalhan2015). For example, Bloom et al. (Reference Bloom, Slaich and Morales2018) analyzed records from 2004–2015 of deceased individuals and found that only 21.4% of them received palliative care, with less than half receiving any within the last 6 months of their lives and a third in the last month before death. The study also shed light on a significant pattern that emerged of patients diagnosed with both COPD and lung cancer were 40% more likely to receive palliative care than those with COPD alone.
Previously, it was implied that patients with COPD were referred more commonly to palliative care due to an underlying cancer diagnosis, not COPD (Meffert et al. Reference Meffert, Hatami and Xander2015). In any case, there has been progressive use of palliative care over recent year which highlights a need to improve all aspects of palliative care services (Bloom et al. Reference Bloom, Slaich and Morales2018). Regardless of the considerable burden of COPD, the absence of formal guidelines for palliative care implementation remains evident (Halpin Reference Halpin2018). Moreover, despite the growing need for palliative care, national health policies do not explicitly prioritize palliative and end-of-life care (Sleeman et al. Reference Sleeman, de Brito and Etkind2019, Reference Sleeman, Timms and Gillam2021). Nevertheless, it is recommended that all clinicians overseeing patients with COPD should be well-versed in the adequacy of palliative care for symptom management and should integrate palliative care into their practice (Vogelmeier et al. Reference Vogelmeier, Criner and Martinez2017). Consequently, there is a critical need for guidance that promotes early palliative care, ensuring that individuals with end-stage COPD and their caregivers have access to the full range of services offered by multidisciplinary palliative care teams (Strutt Reference Strutt2020).
Research has identified that early use of palliative care is recommended alongside disease-oriented care to avoid prognosis paralysis (Epiphaniou et al. Reference Epiphaniou, Shipman and Harding2014). However, identifying the most suitable timing for transition to palliative care can be somewhat challenging and unclearly defined (Murray et al. Reference Murray, Boyd and Sheikh2005). The conventional model of care for patients with advanced diseases, like COPD, is established on a foundation that involves an abrupt shift from life-sustaining care to palliative care, but this may not be suitable for patients with COPD (Spathis and Booth Reference Spathis and Booth2008). One reason for this is that COPD has no apparent onset, the timing of death is unpredictable, and it is challenging to decide on the time for the transition (Casanova et al. Reference Casanova, de Torres and Aguirre-Jaíme2011; Giacomini et al. Reference Giacomini, DeJean and Simeonov2012; Pinnock et al. Reference Pinnock, Kendall and Murray2011). Indeed, palliative care implementation should be started on the presence of refractory symptoms, patients expressing specific preferences, and those who have unmet needs (Rajnoveanu et al. Reference Rajnoveanu, Rajnoveanu and Fildan2020). Furthermore, planning decisions regarding a patient’s end-of-life care is recommended when indicators permit the identification of an estimated survival of less than 6 to 12 months (Braço Forte and Sousa Reference Braço Forte and Sousa2017).
Palliative care, often mistaken as exclusively end-of-life care by patients, caregivers, and healthcare professionals, contributes significantly to the underutilization of these services for COPD patients (Smallwood et al. Reference Smallwood, Currow and Booth2018). A lack of awareness among physicians about the palliative care aspects for patients with COPD stands as a prevalent factor contributing to the unmet needs of this population (Meffert et al. Reference Meffert, Hatami and Xander2015). Another potential reason for delayed transition to palliative care is that health and social services flounder to recognize the problem of breathlessness to address it appropriately (Gysels and Higginson Reference Gysels and Higginson2008; Hasson et al. Reference Hasson, Spence and Waldron2008). There remains a lack of expertise in managing this symptom by health and social care workers, which, in turn, discourages patients from sharing complaints as they often feel ignored (Gysels and Higginson Reference Gysels and Higginson2008). This is further exacerbated by the premise that healthcare professionals have insufficient information or training about this (Nurmatov et al. Reference Nurmatov, Buckingham and Kendall2012).
This editorial exposes that despite the potential benefits of palliative care, its application in COPD remains inadequately addressed. Individuals with advanced COPD experience comparatively low access to palliative care services. Studies reveal a growing awareness of the importance of palliative care, emphasizing the need for improved services beyond end-of-life treatment. Recognizing the suitable timing for palliative care transition is challenging due to the unpredictable progression of COPD. Furthermore, the underrecognition of palliative care requirements is specific to COPD and insufficient expertise in managing symptoms, especially breathlessness, further hinder access to appropriate care. To address these challenges, we advocate for a shift in approach and practice that is underpinned by education and training and tailored directly to the individual needs of patients and their families. Finally, this emphasizes that broader policies for symptom management and referral are essential to ensure timely and comprehensive palliative care provision for patients with COPD.
Competing interests
The authors declare no potential conflict of interest.
