Provision of palliative care for people with chronic obstructive pulmonary disease: a narrative review

Introduction

Background

Chronic obstructive pulmonary disease (COPD) is an umbrella term that refers to a heterogeneous group of chronic lung conditions, including emphysema and chronic bronchitis, that are characterized by progressive and persistent airflow restriction (1). It is estimated that one in ten people worldwide are living with some form of COPD (2), and with over 3.23 million deaths in 2019 alone, it is the third leading cause of death and seventh leading cause of poor health globally (3).

COPD typically follows an illness trajectory of long-term functional decline, which is punctuated by periods of acute exacerbation (1). The symptom burden of COPD can be severe and debilitating for people living with COPD. Spanning over years of illness progression, symptoms include chronic respiratory symptoms, such as breathlessness (also called ‘dyspnea’), cough, and sputum production, as well as broader physical and psychosocial symptoms, including fatigue, depression, anxiety, social isolation, and overall reduced quality of life (1). During periods of exacerbation, which are often provoked by local or systemic inflammation following viral or bacterial infections, these symptoms are heightened and disease progression may be accelerated (4). The effects of this disease often extend beyond the person living with COPD, with profound impacts on the people who care for them (5).

Rationale and knowledge gap

Timely integration of palliative care is well recognized as a means to improving not only the quality of dying, but also the quality of living, for people with a life-limiting illness (6). The prolonged and fluctuating needs of people living with COPD, as well as the needs of their carers, are often challenging for traditional specialist palliative care models. Generalist or primary palliative care refers to palliative care models or principles delivered by non-specialist healthcare providers, including general practitioners, respiratory specialists, and other health providers in the context of COPD, and form an important component of palliative care provision for this group. The term ‘carer’ is frequently used to refer to family and/or friends of people living with COPD or other life-limiting illnesses who may provide varying levels of support with activities of daily living or symptom management which is often unpaid. The term ‘carer’ is used in this review for simplicity, though notably many people in this position do not always self-identify with that term.

Despite being disease-agnostic, many specialist palliative care services are best-equipped to deal with brief and intense input towards the very end of life, such as is generally required for people with advanced cancer (7,8). By contrast, people with COPD and other chronic illnesses often have fluctuating, long-term needs over years. This issue is often compounded by people with COPD having a very poor understanding of their illness and prognosis, combined with frequent misconceptions that specialist palliative care is focused on end-of-life care only, thus many people with COPD cannot see the relevance of palliative care to their own condition (9,10). These misconceptions are often shared by clinicians, who may be reluctant to initiate palliative care and other end-of-life discussions out of concern that doing so may upset patients or extinguish hope regarding ongoing disease-directed treatment options (11). As such, the palliative care needs of people living with COPD and their carers often go unmet.

Objective

This narrative review will examine the current state of specialist and generalist (primary) palliative care involvement in COPD management, explore the evidence regarding various palliative care-based models and interventions to improve health-related outcomes for people with COPD, and highlight known barriers and facilitators to utilising a palliative care approach in this context. Particular emphasis will be placed on the management of breathlessness, which is frequently cited as the most distressing symptom for people with severe COPD (12,13). We present this article in accordance with the Narrative Review reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-24-11/rc).

Methods

Whilst this narrative review did not utilise a formal search and screening approach, an overview of the relevant literature was sought by searching MEDLINE for original English-language research articles related to COPD and palliative care. Summary details of the search are provided in Table 1 and a full detailed search strategy is available Table S1. Reports of interest were included under the thematic headings in this review. Prior narrative and systematic reviews relating to the use of palliative care approaches in COPD were also considered for high-level summaries of the evidence.

Narrative review

Who needs palliative care: symptom burden in people with advanced COPD

When considering the appropriateness of the current state of specialist palliative care provision for people living with COPD, it is useful to consider how the illness trajectory and symptom burden of COPD compares to that of people living with advanced cancer, who are often reported as the most frequent recipients of specialist palliative care services (14,15). Although COPD is often a prolonged and fluctuating illness during which there is a role for palliative care, this section will focus on burden experienced in the final months of life as, correctly or incorrectly, this is when palliative care is most frequently needed and engaged.

Healthcare costs associated with severe COPD are high and projected to grow, reflecting the rapid functional decline experienced at the end of life and the increasing prevalence of the condition (16,17). In a US audit of decedents with primary diagnoses of COPD or lung cancer, healthcare utilisation was shown to vary considerably in the final 6 months of life (18). Decedents with COPD more frequently visited primary care clinicians compared to those with lung cancer, were more likely to be admitted to intensive care units and to remain there for more than two weeks, resulting in average healthcare costs for people with severe COPD being $USD4,000 greater than those for people with advanced lung cancer (18). The intensity of healthcare utilisation during the final 6 months of life has also been documented in Taiwanese (19) and Swedish cohorts (20), where this period has been shown to account for up to one in five COPD admissions and nearly a third of all COPD-related hospital days (20).

It should be noted that many people with COPD have a number of chronic disease comorbidities (21) which results in highly individualised illness trajectories (20). Indeed, a mapping of individual and average breathlessness trajectories, a major source of symptom burden for people with COPD, has demonstrated that relying on average experiences can have limited application (22,23). These findings emphasise the need for ongoing individualized and person-centred care for people living with COPD.

Who receives palliative care: underutilization of palliative care for people with COPD

Despite the severity and duration of symptom burden that is well documented in people with COPD, which is distinct but comparable to that of people with advanced cancer (24-26), there is a growing body of evidence indicating that specialist palliative care input is significantly lower amongst people with COPD. This comparison should be prefaced with the fact that even amongst people with advanced cancer, who are the most frequent recipients of palliative care, there is still a common consensus that specialist palliative care is underutilised (14).

Audits of decedents with COPD in Belgium (27), Canada (14), and the UK (28) all found that specialist palliative care referrals for people with COPD occurred in fewer than 20% of decedents, compared to more than 50% of decedents with advanced cancer. When specialist palliative care referrals were documented, it was often late in the illness trajectory, with median referral time occurring just 10 days prior to death (27). A retrospective audit of two Australian hospitals between 2004 and 2015 similarly found that only 18% of decedents with COPD had accessed specialist palliative care prior to their terminal admission, with an additional 29% being referred during the terminal admission at a median time of one day prior to death (29). Notably, in the Belgian study the median referral time for people with cancer was also very late, occurring just 20 days prior to death (27). These findings highlight that the shortcomings of specialist palliative care provision for people with COPD are not unique and are indicative of broader problems regarding access, lack of resourcing and/or lack of awareness. Indeed, an Australian retrospective study examining proportion of people who received palliative care from those who were deemed likely to benefit identified that under-servicing occurred across a range of primary diagnoses, however, COPD was the condition with the highest proportion of unmet needs at 31% (30).

In light of specialist palliative care resources often being severely limited (31), many clinicians who are not specialist palliative care clinicians will pragmatically adopt generalist (primary) palliative care approaches in their management of patients with advanced COPD (29). Although this approach reflects the favorable attitudes towards palliative care that have been reported by some non-palliative care clinicians (32-36), there is still disparity in end-of-life provisions across diagnoses. Retrospective cohort studies of end-of-life care provisions on a general respiratory ward in the UK between 2010 and 2011 indicated that despite people with COPD having more clinical indicators of end-of-life and a greater mean number of admissions in the previous 12 months than people with lung cancer, they were less likely to have had a documented prognosis discussion or to have had their end-of-life preferences recorded (37). This trend is also reflected in pharmacological symptom management. Despite being admitted to intensive care units more frequently and for longer stays, decedents with COPD received fewer pharmacological symptom interventions, including opioids and benzodiazepines prescriptions, than their counterparts with lung cancer (18). These trends highlight the importance of specialist palliative care resourcing and formalised referral pathways to minimize the risk that people with severe chronic disease ‘fall through the gaps’ when cared for by clinicians providing primary palliative care.

How effective is palliative care: symptom control and end of life planning

One of the most common and distressing symptoms experienced by people living with COPD is chronic, refractory breathlessness that persists despite optimal treatment of the underlying conditions (12,13). Other important symptoms, including fatigue, cough, anxiety or depression, and pain are beyond the scope of this review but can be highly distressing to people with COPD and warrant ongoing discussion and management between clinicians and patients.

Non-pharmacological approaches to managing symptoms associated with advanced COPD are important components of holistic respiratory and palliative care services. These can include options such as hand-held electric fans to provide airflow to the face, breathing techniques, or postures to relieve breathlessness, however evidence of their effectiveness is also varied (38) and their usage overall remains low (39,40). Novel holistic interventions that move away from traditional medicalised models and emphasise community-based ongoing care for symptom management are increasingly being considered, including guided group singing (41-47). Initial trials across the UK, China, and New Zealand indicate mixed effectiveness of group singing, with some results showing increased exercise tolerance, improved health-related quality of life, reduced symptoms of anxiety and depression, and even improved lung function (41-47). Although these effects require larger scale trials to validate findings, they are reflective of the potential value of exploring alternative person-centred approaches.

The management of breathlessness and other symptoms associated with advanced COPD remain complex with no single solution that is appropriate and effective for all people. A trial of individualized breathlessness management interventions, which included breathlessness education and written ‘breathlessness plans’, developed by a multidisciplinary team of respiratory and specialist palliative care clinicians in partnership with people with severe COPD and their carers was shown to improve breathlessness and quality of life (48,49). Participants in the trial rated the breathlessness plans as highly acceptable and useful for managing not only daily breathlessness, but also heightened periods of episodic breathlessness (48,49). Shared decision making in collaboration between patients and clinicians to develop and refine a symptom management strategy remains the key takeaway; templates for individualized breathlessness plans (49) and other similar interventions may serve as useful resources for clinicians to support their recognition of breathlessness and direct usage of non-pharmacological management strategies.

Various forms of oxygen therapy, including ambulatory oxygen therapy (used on exertion only by people who desaturate with exercise) and palliative oxygen therapy (prescribed to normoxaemic people with severe breathlessness), have been recommended for management of chronic severe breathlessness (50). Oxygen therapy can be a double-edged sword that both increases the capacity of people living with COPD to maintain their mobility and independence, but is also stigmatized and restrictive to use (51,52). Palliative use of oxygen therapy has decreased in usage in recent years, with respiratory physicians not supporting the regular prescription of supplemental oxygen therapy to normoxaemic people with severe breathlessness. However, many specialist palliative care physicians still support and recommend its use (53). Recommendations from the British Thoracic Society broadly suggest consideration of oxygen therapy for people who are hypoxemic, with little evidence to support usage in people who are breathlessness without concomitant hypoxemia (50,54). This raises the question of treatment options for people who experience breathlessness despite maintaining normal oxygen saturation levels. The use of high-flow nasal therapy, which can deliver heated, humidified air at flow rates of up to 60 L/min with or without supplemental oxygen is increasingly reported as a potential intervention to relieve breathlessness in people who experience breathlessness due to a range of conditions. However, it remains unclear whether this will be an effective treatment for people with COPD but without hypoxemia (55,56).

The prescription of opioids is sometimes considered as a palliative approach to managing breathlessness and other symptoms of advanced COPD, but is an increasingly divisive topic, with many clinicians expressing reservations to prescribe opioids (12,57). These reservations persist despite some clinical guidelines historically recommending the use of opioids for this indication (58), but are perhaps well placed considering the uncertainty of effectiveness and mounting evidence of increased harms (59,60). Three recent adequately powered randomised controlled trials of opioids administered for one week or longer to people with COPD demonstrated no significant improvement in breathlessness (59,61,62). Of concern, 33% of participants receiving any dose of morphine in the BEAMS trial developed serious adverse events, including hospitalisation and death (59). It should be noted, however, that evidence regarding treatment benefits from opioids when prescribed to people with COPD at the very end of life remains scarce and as such, their utility in this circumstance should not be prematurely ruled out. Prior recommendations to prescribe opioids for the management of chronic breathlessness in people with severe COPD despite evidence of poor effectiveness highlight that there are limited effective treatment options available.

In addition to symptom management, end-of-life planning is a key function of palliative care with the aim of empowering people living with a terminal illness to have autonomy over their preferences regarding death and dying. As few as 14% of people with advanced COPD feel that their clinician adequately understands their end of life wishes (63,64) and in one multi-centre study exploring preferences of people with very severe COPD, half of the participants who died during the follow up period were in fact not treated in accordance with their wishes (65). Advance care planning (ACP) is a documented discussion of treatment and care preferences, and particularly end-of-life preferences, reflective of a persons’ values and wishes, which is legally binding in many jurisdictions. Although the optimal timing for ACP completion is unclear, they are likely to be more effective when initiated some years prior to death (66). Estimates of ACP completion for people living with COPD vary considerably from under 10% to over 40% (67), as compared to 80% of people with advanced cancer (37). When ACP discussions do occur, it is often late in the illness trajectory. In an Australian audit, only 5% of decedents with COPD had a documented ACP prior to their terminal admission (29). These figures suggest that even if ACP or other less formal end-of-life discussions are occurring, they may not be sufficiently detailed, documented or adhered to. Indeed, an international Delphi study found that education regarding legislation for ACP was rated as a high priority training gap for health professionals managing COPD (68). Integration of specialist palliative care services into respiratory care has been shown to markedly improve uptake of ACP; one integrated service in Australia reported 39% of patients with advanced respiratory disease had completed ACP documentation (69). Qualitative surveys with users of that service highlighted the importance of having these discussions with a known and trusted member of their usual care team, emphasising that despite being domain experts, standalone specialist palliative care clinicians may not always be best placed to initiate these conversations given their often late involvement in the illness trajectory (70).

Place of death is an outcome that can be indicative of congruence of end-of-life care with the stated preferences of people with a life-limiting illness. Most people with advanced COPD, when prompted, state a preference to die at home, as opposed to in a hospice or hospital setting (71). This preference is particularly prevalent amongst Indigenous peoples, who are over-represented in COPD prevalence and burden and for whom a connection to land and community is often culturally important (72,73), as well as in rural-dwelling people who are required to travel excessive distances to access services (74,75). Concerningly, these preferences, like ACP, are rarely documented amongst decedents with COPD, and consequently most will ultimately die away from home and potentially against their wishes (71,76). Retrospective audits of decedents with COPD in New York and Canada both reported that decedents who had received palliative care input were more likely to die at home (77), and that a longer duration of palliative care involvement prior to death increased the likelihood of dying at home despite having similar numbers of hospital admission days (78). Results from an integrated specialist palliative and respiratory care service in Australia similarly highlighted that only 25% of service patients ultimately died in hospital (69), as compared with historical Australian data where 72% of people with COPD died in hospital (71). It is clear that early and repeated specialist palliative care involvement and specifically, conversations regarding end-of-life preferences, are key in improving congruence of care with patients wishes.

When to initiate palliative care: prognostic uncertainty and use of clinical indicators

There is ample evidence across many conditions that early involvement of specialist palliative care services is beneficial (79,80). Further, and contrary to many clinicians’ concerns, there is little evidence that direct and frank discussions of prognostic outcomes are unduly distressing to people with COPD or their carers (81,82). Instead, these discussions can prompt people with COPD to recognise and accept their prognosis earlier and can facilitate shared decision making and planning around end-of-life care. One of the most commonly cited barriers to referring people with advanced COPD to specialist palliative care services is the well described lack of prognostic certainty and associated fear of initiating end-of-life discussions prematurely to the detriment of patients’ wellbeing (32-34).

When people with COPD do receive specialist palliative care input, it is often late in the illness trajectory. Compared to people with lung cancer, those with COPD who were referred to palliative care tended to have lower functional capacity and were more likely to be hospitalized at the time of referral (83,84). When palliative care referrals are initiated late in the illness trajectory, the capacity for shared-decision making and optimized symptom management can be limited as the focus necessarily shifts to responding in real time to acute deterioration (33). In an attempt to overcome the frequently cited issue of prognostic uncertainty, efforts have been made to develop and validate clinician decision aids, mortality prognostic indicators, and needs assessment tools that can adequately and routinely detect patients who are either approaching the end of life (usually via predicted mortality within 12 months) or who have unmet needs suited to specialist palliative care input. Reviews of such tools frequently conflate prognostication tools, including mortality prediction, with actual needs assessments, reflecting the belief that traditional models of palliative care are best designed for intensive short-term input in the immediate end of life period (85,86). This is despite the fact that people with COPD are better served by referral tools that identify needs or illness milestones, such as frequency of exacerbations or requirement for assistance with self-care, separate to prognostication (87,88).

In practice, the usage of clinical prognostication tools as palliative care referral decision aids remains very low. Although 52% of 72 hospitals surveyed in the UK in 2019 reported routine usage of clinical prognostication tools, 93% relied on clinician judgement alone to determine need for specialist palliative care referral and as few as 1.4% of people admitted with acute exacerbations of COPD were formally assessed for palliative care referral (89). Whilst the low utilisation of standardized tools is unsurprising given their lack of robust validation in people with COPD, reliance on clinician judgement can also be flawed as need can be counterintuitive to disease severity. In a survey of German clinicians assessing palliative care needs of people hospitalized with exacerbations of COPD, only 9.1% were identified as having palliative care needs and 4% of those who were not classified as having palliative care needs were in fact in their terminal admission (90). Furthermore, the severity of spirometry confirmed airflow limitation, which is frequently cited as an important criterion when considering referral to a specialist palliative care service, has been shown to be a poor predictor of palliative care needs (91). These findings highlight the problem with relying on disease severity alone and emphasise the importance of taking clinical indicators into consideration as part of a comprehensive assessment to determine unmet needs.

How to deliver palliative care for COPD: models of care

Once the need for specialist palliative care has been recognized, the question of how best to deliver palliative care in a model that is cost-effective, accessible, and acceptable for people with COPD, their carers’ and clinicians is key. Many clinicians and health service managers’ report a lack of defined triggers for palliative care referral or clear referral pathways (75); this is particularly the case in regional and rural areas, where service delivery can be scarce and fragmented (74).

Many health services exist in silos with poor communication and connectivity across services, which can result in many people with COPD and their carers struggling to navigate the healthcare system. This can result in excess emergency presentations when their condition has deteriorated to a crisis point after being unable to access timely and appropriate care, which can be burdensome to both the individual and the broader healthcare system (92). Integration of specialist palliative care into existing respiratory medicine services is a model that aims to increase the reach and accessibility of specialist palliative care, whilst also increasing acceptability by normalizing palliative care interventions as a part of ‘usual care’ rather than a distinct phase associated with death and dying (93,94). Such models are recommended in recent palliative care guidelines from both the American Thoracic Society (95) and the European Respiratory Society (80). Examples of integrated specialist palliative care services with specialist respiratory care have been described in the UK (96,97), The Netherlands (98,99), and Australia (69), with trials showing that integrated delivery was feasible and in some cases improved health outcomes including symptom control (96) and healthcare utilisation (69).

One trial of specialist palliative care for people with COPD indicated that participants had poor recollection of palliative care interventions, which the authors attributed in part to participants having high levels of anxiety, low health literacy, and being inundated with overwhelming amounts of information (100). Difficulty retaining information on care choices is particularly notable when preferences are discussed only when the person has reached an advanced disease state (65). Repeated inputs over prolonged periods as part of ‘usual care’ may help overcome these barriers and aid people with COPD to derive full benefit and to meaningfully have a voice in their healthcare decisions. In addition to integration of specialist palliative services within specialist respiratory care models, it has been argued that primary care and other community-based healthcare providers are well place to recognize and manage unmet needs (primary palliative care) throughout the illness trajectory (95,101). Upskilling these providers is an important component of upscaling service availability in light of the scarcity of specialist palliative care clinicians in many countries.

Delivery of palliative care within the community is a common approach that increases accessibility for patients and carers. A retrospective audit of a community-based specialist palliative care service in the Australian state of Western Australia from 2009 to 2010 found that this model reduced overall hospital costs associated with advanced COPD, with these cost reductions occurring primarily within the final two months of life (102). Increasing the capacity of such models by upskilling other healthcare providers should also be considered. Trials of community-based primary palliative care services, where clinicians who are not specialist palliative care clinicians provide palliative care interventions for people with COPD, often with oversight or support from specialist palliative care clinicians, have shown positive outcomes. An evaluation of 130 pharmacist-led palliative care consultations over a 10-month period in the UK in 1997 by a multidisciplinary team, including palliative care consultants and nurses, found that 81% of consultations were likely to be beneficial and that the program was suitable and effective (103). It should be noted that 23% of these consultations were deemed to contain insufficient information and a further 3% were potentially detrimental to patients, highlighting that any such program must be underpinned by a solid foundation of professional development and ongoing support for non-palliative care specialists (103).

Extending community-based specialist and generalist (primary) palliative care services using home-based delivery can help overcome barriers to attending outpatient appointments for people with reduced mobility and builds upon the notion that palliative care is an ongoing part of usual care. An audit of home-based specialist palliative care in Belgium, where people with COPD received at least one in-home visit from a member of a multidisciplinary palliative care team, was shown to reduce the odds of hospitalization, intensive care admission, invasive ventilation, medical imaging, sedative usage, and dying in hospital, with these effects most pronounced when home-based palliative care was received between one and three months prior to death (104). A similar nurse-led, home-based, specialist palliative care intervention in Arizona, USA found that recipients of home-based palliative care reported improved symptom control and self-rated health, greater awareness of resources related to their illness, and had more adequate legal preparations for end of life (105). Although seemingly effective and acceptable to people with COPD, implementing home-based palliative care can be resource intensive for health services. Increased familiarity with digital health services in the aftermath of the COVID-19 pandemic has created opportunities to expand the reach of specialist palliative care services using telehealth models. Telehealth delivery has been trialed and found to be both feasible and acceptable, however, many people with life-limiting illnesses as well as healthcare providers express preferences for blended models that combine face-to-face visits with telehealth support or follow up (106,107).

Perspectives and preferences of people living with COPD and their carers

A recurrent theme in qualitative studies regarding care preferences for people with advanced COPD is an apparent disconnect between the severity of their condition and their perceived need for palliative care (108,109). It is not uncommon for people with COPD to attribute their limitations to something other than COPD such as aging (100), and whilst it is true that many people with COPD experience a high number of comorbidities, it is likely that this reflects, at least in part, a lack of direct and frank prognostic communication from their care team (110,111). It is often the case that people living with COPD have either a poor understanding or poor acceptance of their prognosis (112), with many describing their general condition as ‘a vague feeling of being unwell’ and often only recognizing the severity of their condition during an acute exacerbation (109).

Although most people living with COPD readily identify their symptom burden as high and state their desire for greater symptom-directed care, particularly in regards to chronic breathlessness, few express existential concerns or a desire for specific end-of-life care (113). Concerningly, only 63% of people surveyed who were house-bound with severe COPD knew that they might die from their condition (114) and many will go as far as to disavow their need for supportive or palliative care (9,10). This is despite goals of palliative care being well aligned with the stated needs of people with COPD, including maintaining independence and stable health, and adapting to living with functional constraints (115). Improving community understanding of what palliative care entails is critical in order to increase acceptability to, and uptake by, people with COPD and their carers. Towards this, many health services have adopted the alternative name of ’supportive care’ to refer to traditional specialist and generalist (primary) palliative care services, which not only reflects the role and utility of palliative care beyond the immediate end-of-life period but is also viewed more favorably by clinicians and patients alike (116,117).

One of the most effective means of changing misperceptions is through engagement with specialist palliative care services. One study of people with COPD receiving specialist palliative care support reported a change in perception to view it as a facilitator of improved symptom control and enhanced social inclusion (118). Though this is of course not a solution to overcoming reluctance of people with COPD to engage with specialist palliative care services amongst other barriers that exist, it is a good indication that benefit can be derived even when recognition of need is poor, and should empower clinicians to initiate palliative care discussions earlier.

In addition to supporting the needs of people living with COPD, specialist palliative care teams can play a role in supporting the needs of the people who care for them. People who provide care for a person living with COPD report challenges recognising and adapting to the changes that have happened as their loved ones’ condition deteriorates, whilst also juggling the need to continue providing care, which may include adopting new equipment and navigating complex health systems (119,120). Carer burden is sometimes, but not always, considered in assessment of palliative care needs for people with a life-limiting illness, though there is evidence that many validated tools can in fact under-estimate the severity of carer burden and may overlook entire domains of unmet need (121,122). This is reflected in studies of current and bereaved carers who often report a lack of services and support (123,124). Not all trials of palliative care interventions for people with COPD have measured carer burden and those that do have not always detected a change as a result of palliative care (125). This may reflect a lack of consideration of carers in the design and delivery of palliative care interventions and research in general, often born from a desire to not overburden this group with research (126). Palliative care programs that have been specifically designed and targeted at reducing carer burden have shown effectiveness in increasing carer preparedness and perceived competence, while improving overall wellbeing and reducing unmet needs (127).

Professional consensus: perspectives of generalist and respiratory specialist healthcare providers

Access to palliative care in many healthcare systems requires a referral from an existing member of the care team. In COPD this is often a primary care provider or a respiratory specialist. When surveyed on their beliefs regarding who is responsible for initiating and following up discussions around palliative and end of life care, many clinicians cite a lack of role clarity or believe it is not their place (32,36,128-131). A survey of Australian junior doctors found that half believed it was the role of primary care (36), yet a separate survey of Australian primary care doctors found that only 55% were comfortable providing generalist palliative care to people with COPD and even fewer (45%) had referred onwards to specialist palliative care (132). Similarly, many respiratory specialists state that their priority is managing physical symptoms (133), and that they do not have adequate training, time, resources, or referral pathways for other forms of supportive care including psychosocial support (134). This problem is exacerbated by clinicians relying on patients to request or initiate palliative care discussions, out of fear that initiating the conversation prematurely may upset or frighten patients and their carers (11). As highlighted earlier, many people with COPD report fear or stigma surrounding palliative care (135) and will avoid raising their concerns regarding death and dying, and particularly the manner in which they may die, with their health care professionals (136). These examples are indicative of the problem where responsibility is deferred and ultimately people with COPD miss out (137). Combating this requires education and training of generalist and respiratory specialist healthcare providers that can harness their existing skills in symptom recognition and increase their confidence to initiate end-of-life discussions and recognize when, and importantly how, to refer onwards to specialist palliative care as needs increase (128,132,138).

Strengths and limitations

Although this narrative review implemented a broad search of the literature, the search and screening did not utilize a systematic review methodology and for this reason, it is possible that some relevant publications have not been included. An emphasis has instead been placed on presenting an overview of the key topics that appear frequently in the literature regarding palliative care for people living with COPD and providing a high-level summary of the qualitative and quantitative evidence that is currently available. Targeted systematic reviews and meta-analyses may provide greater insight into overall effectiveness of different palliative care-based interventions in people with COPD, though that is beyond the scope of the current work.

Conclusions

Despite significant physical and psychosocial symptom burden experienced over prolonged periods of time by people living with COPD and their carers, palliative care needs are often under recognised and service provision remain under resourced and poorly connected. Reliance on people with COPD to initiate conversations regarding palliative care can often result in missed opportunities for early intervention, as many have poor understanding of their condition and will disavow their needs. Holistic service models that integrate palliative care into routine respiratory services or community-based care represent feasible and effective means to increase the overall availability and acceptability of specialist palliative care earlier in the illness trajectory. Education and upskilling of existing generalist and respiratory specialist healthcare workforces, along with increased ease and visibility of referral pathways for people with non-malignant disease, are essential components to help ensure more people living with COPD access timely and appropriate palliative care and end-of-life planning.

Acknowledgments

Funding: None.

Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-24-11/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-11/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-11/coif). A.P. reports the grants or contracts from Lung Foundation Australia. C.B. reports grants from the Lung Foundation Australia and PACT as well as travel support from TSANZ, ERS, Fisher and Paykel, and St George Institute of Health. The author serves as a volunteer on TSANZ and ASA boards. The author has received equipment support from Fisher and Paykel. N.S. reports grants from NHMRC, MRFF, Cancer Council Australia, Fisher & Paykel Healthcare (FPH), Windermere Foundation, Lung Foundation Australia, Lord Mayor’s Foundation Melbourne, Bethlehem Griffiths Foundation, consulting fees from the Limbic, Orchard Consulting, Payment or honoraria for lectures from Glaxo Smith Kline, Boehringer Ingelheim, Astra Zeneca, FPH, Health Ed, as well as travel support from Chiesi and Boehringer Ingelheim. The author serves as a volunteer on TSANZ, ERS, and Victorian Doctors program boards. The author has received equipment support from Fisher and Paykel. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

References

1. Agustí A, Celli BR, Criner GJ, et al. Global Initiative for Chronic Obstructive Lung Disease 2023 Report: GOLD Executive Summary. Eur Respir J 2023;61:2300239. [Crossref] [PubMed]
2. Adeloye D, Song P, Zhu Y, et al. Global, regional, and national prevalence of, and risk factors for, chronic obstructive pulmonary disease (COPD) in 2019: a systematic review and modelling analysis. Lancet Respir Med 2022;10:447-58. [Crossref] [PubMed]
3. World Health Organization. Chronic obstructive pulmonary disease (COPD). 2023. Available online: https://www.who.int/news-room/fact-sheets/detail/chronic-obstructive-pulmonary-disease-(copd)
4. Wedzicha JA, Seemungal TA. COPD exacerbations: defining their cause and prevention. Lancet 2007;370:786-96. [Crossref] [PubMed]
5. Fusi-Schmidhauser T, Froggatt K, Preston N. Living with Advanced Chronic Obstructive Pulmonary Disease: A Qualitative Interview Study with Patients and Informal Carers. COPD 2020;17:410-8. [Crossref] [PubMed]
6. Ferrell BR, Twaddle ML, Melnick A, et al. National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition. J Palliat Med 2018;21:1684-9.
7. Kingston AEH, Kirkland J, Hadjimichalis A. Palliative care in non-malignant disease. Medicine 2020;48:37-42. [Crossref]
8. Jang H, Lee K, Kim S, et al. Unmet needs in palliative care for patients with common non-cancer diseases: a cross-sectional study. BMC Palliat Care 2022;21:151. [Crossref] [PubMed]
9. Habraken JM, Pols J, Bindels PJ, et al. The silence of patients with end-stage COPD: a qualitative study. Br J Gen Pract 2008;58:844-9. [Crossref] [PubMed]
10. Gardener AC, Moore C, Farquhar M, et al. 'I'm fine!': Assertions of lack of support need among patients with chronic obstructive pulmonary disease: A mixed-methods study. Chronic Illn 2022;18:574-88. [Crossref] [PubMed]
11. Tavares N, Jarrett N, Wilkinson T, et al. Clinician Perspectives on How to Hold Earlier Discussions About Palliative and End-of-Life Care With Chronic Obstructive Pulmonary Disease Patients: A Qualitative Study. J Hosp Palliat Nurs 2022;24:E101-7. [Crossref] [PubMed]
12. Young J, Donahue M, Farquhar M, et al. Using opioids to treat dyspnea in advanced COPD: attitudes and experiences of family physicians and respiratory therapists. Can Fam Physician 2012;58:e401-7. [PubMed]
13. Blinderman CD, Homel P, Billings JA, et al. Symptom distress and quality of life in patients with advanced chronic obstructive pulmonary disease. J Pain Symptom Manage 2009;38:115-23. [Crossref] [PubMed]
14. Kendzerska T, Nickerson JW, Hsu AT, et al. End-of-life care in individuals with respiratory diseases: a population study comparing the dying experience between those with chronic obstructive pulmonary disease and lung cancer. Int J Chron Obstruct Pulmon Dis 2019;14:1691-701. [Crossref] [PubMed]
15. Tanuseputro P, Budhwani S, Bai YQ, et al. Palliative care delivery across health sectors: A population-level observational study. Palliat Med 2017;31:247-57. [Crossref] [PubMed]
16. Chen S, Kuhn M, Prettner K, et al. The global economic burden of chronic obstructive pulmonary disease for 204 countries and territories in 2020-50: a health-augmented macroeconomic modelling study. Lancet Glob Health 2023;11:e1183-93. [Crossref] [PubMed]
17. Iyer AS, Goodrich CA, Dransfield MT, et al. End-of-Life Spending and Healthcare Utilization Among Older Adults with Chronic Obstructive Pulmonary Disease. Am J Med 2020;133:817-824.e1. [Crossref] [PubMed]
18. Au DH, Udris EM, Fihn SD, et al. Differences in health care utilization at the end of life among patients with chronic obstructive pulmonary disease and patients with lung cancer. Arch Intern Med 2006;166:326-31. [Crossref] [PubMed]
19. Kuo LC, Chen JH, Lee CH, et al. End-of-Life Health Care Utilization Between Chronic Obstructive Pulmonary Disease and Lung Cancer Patients. J Pain Symptom Manage 2019;57:933-43. [Crossref] [PubMed]
20. Andersson FL, Svensson K, Gerhardsson de Verdier M. Hospital use for COPD patients during the last few years of their life. Respir Med 2006;100:1436-41. [Crossref] [PubMed]
21. Cavaillès A, Brinchault-Rabin G, Dixmier A, et al. Comorbidities of COPD. Eur Respir Rev 2013;22:454-75. [Crossref] [PubMed]
22. Bausewein C, Booth S, Gysels M, et al. Individual breathlessness trajectories do not match summary trajectories in advanced cancer and chronic obstructive pulmonary disease: results from a longitudinal study. Palliat Med 2010;24:777-86. [Crossref] [PubMed]
23. Beernaert K, Deliens L, De Vleminck A, et al. Is There a Need for Early Palliative Care in Patients With Life-Limiting Illnesses? Interview Study With Patients About Experienced Care Needs From Diagnosis Onward. Am J Hosp Palliat Care 2016;33:489-97. [Crossref] [PubMed]
24. Bausewein C, Booth S, Gysels M, et al. Understanding breathlessness: cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. J Palliat Med 2010;13:1109-18. [Crossref] [PubMed]
25. Weingaertner V, Scheve C, Gerdes V, et al. Breathlessness, functional status, distress, and palliative care needs over time in patients with advanced chronic obstructive pulmonary disease or lung cancer: a cohort study. J Pain Symptom Manage 2014;48:569-81.e1. [Crossref] [PubMed]
26. Vestergaard AHS, Christiansen CF, Neergaard MA, et al. Healthcare utilisation trajectories in patients dying from chronic obstructive pulmonary disease, heart failure or cancer: a nationwide register-based cohort study. BMJ Open 2021;11:e049661. [Crossref] [PubMed]
27. Beernaert K, Cohen J, Deliens L, et al. Referral to palliative care in COPD and other chronic diseases: a population-based study. Respir Med 2013;107:1731-9. [Crossref] [PubMed]
28. Bloom CI, Slaich B, Morales DR, et al. Low uptake of palliative care for COPD patients within primary care in the UK. Eur Respir J 2018;51:1701879. [Crossref] [PubMed]
29. Smallwood N, Ross L, Taverner J, et al. A Palliative Approach is Adopted for Many Patients Dying in Hospital with Chronic Obstructive Pulmonary Disease. COPD 2018;15:503-11. [Crossref] [PubMed]
30. Westley-Wise V, Moules S, Masso M, et al. Who needs, receives and misses out on palliative and end-of-life care? A population-based study to identify needs and gaps in a regional health service. Aust Health Rev 2022;46:91-9. [Crossref] [PubMed]
31. Axelsson B. The Challenge: Equal Availability to Palliative Care According to Individual Need Regardless of Age, Diagnosis, Geographical Location, and Care Level. Int J Environ Res Public Health 2022;19:4229. [Crossref] [PubMed]
32. Disler R, Henwood B, Luckett T, et al. Knowledge and Attitudes of Allied Health Professionals Towards End-Of-Life and Advance Care Planning Discussions With People With COPD: A Cross-Sectional Survey Study. Am J Hosp Palliat Care 2023;40:856-71. [Crossref] [PubMed]
33. Disler R, Pascoe A, Luckett T, et al. Barriers to Palliative Care Referral and Advance Care Planning (ACP) for Patients With COPD: A Cross-Sectional Survey of Palliative Care Nurses. Am J Hosp Palliat Care 2022;39:169-77. [Crossref] [PubMed]
34. Sørensen AR, Marsaa K, Prior TS, et al. Attitude and Barriers in Palliative Care and Advance Care Planning in Nonmalignant Chronic Lung Disease: Results From a Danish National Survey. J Palliat Care 2020;35:232-5. [Crossref] [PubMed]
35. Politis J, Eastman P, Le B, et al. General practitioners’ beliefs and experiences when caring for patients with severe chronic obstructive pulmonary disease and refractory breathlessness. Eur Respir J 2017;50:PA1612.
36. Smallwood N, Gaffney N, Gorelik A, et al. Doctors' Attitudes to Palliation and Palliative Care in Patients With Advanced Chronic Obstructive Pulmonary Disease. J Pain Symptom Manage 2018;55:e9-e11. [Crossref] [PubMed]
37. Tsim S, Davidson S. End-of-life care in a general respiratory ward in the United Kingdom. Am J Hosp Palliat Care 2014;31:172-4. [Crossref] [PubMed]
38. Pyszora A, Lewko A. Non-pharmacological Management in Palliative Care for Patients With Advanced COPD. Front Cardiovasc Med 2022;9:907664. [Crossref] [PubMed]
39. Luckett T, Roberts M, Smith T, et al. Implementing the battery-operated hand-held fan as an evidence-based, non-pharmacological intervention for chronic breathlessness in patients with chronic obstructive pulmonary disease (COPD): a qualitative study of the views of specialist respiratory clinicians. BMC Pulm Med 2022;22:129. [Crossref] [PubMed]
40. Smallwood N, Currow D, Booth S, et al. Differing Approaches to Managing the Chronic Breathlessness Syndrome in Advanced COPD: A Multi-National Survey of Specialists. COPD 2018;15:294-302. [Crossref] [PubMed]
41. McNaughton A, Weatherall M, Williams M, et al. Sing Your Lungs Out-a community singing group for chronic obstructive pulmonary disease: a 1-year pilot study. BMJ Open 2017;7:e014151. [Crossref] [PubMed]
42. Lord VM, Cave P, Hume VJ, et al. Singing teaching as a therapy for chronic respiratory disease--a randomised controlled trial and qualitative evaluation. BMC Pulm Med 2010;10:41. [Crossref] [PubMed]
43. Philip KE, Lewis A, Jeffery E, et al. Moving singing for lung health online in response to COVID-19: experience from a randomised controlled trial. BMJ Open Respir Res 2020;7:e000737. [Crossref] [PubMed]
44. Bonilha AG, Onofre F, Vieira ML, et al. Effects of singing classes on pulmonary function and quality of life of COPD patients. Int J Chron Obstruct Pulmon Dis 2009;4:1-8. [PubMed]
45. Liu H, Song M, Zhai ZH, et al. Group singing improves depression and life quality in patients with stable COPD: a randomized community-based trial in China. Qual Life Res 2019;28:725-35. [Crossref] [PubMed]
46. Morrison I, Clift SM. A UK feasibility study on the value of singing for people with Chronic Obstructive Pulmonary Disease (COPD) September 2011 to June 2012: Ian Morrison. European Journal of Public Health 2013;23:ckt123.059.
47. Smallwood N, Pascoe A, Vogrin S, et al. SINFONIA study protocol: a phase II/III randomised controlled trial examining benefits of guided online group singing in people with chronic obstructive pulmonary disease and interstitial lung disease and their carers. Respir Res 2022;23:208. [Crossref] [PubMed]
48. Qian M, Thompson M, Le B, et al. A pilot study to assess the efficacy of breathlessness plans for patients with chronic obstructive pulmonary disease (COPD). Eur Respir J 2016;48:PA3678.
49. Qian MYY, Politis J, Thompson M, et al. Individualized breathlessness interventions may improve outcomes in patients with advanced COPD. Respirology 2018;23:1146-51. [Crossref] [PubMed]
50. Hardinge M, Annandale J, Bourne S, et al. British Thoracic Society guidelines for home oxygen use in adults. Thorax 2015;70:i1-43. [Crossref] [PubMed]
51. Ek K, Sahlberg-Blom E, Andershed B, et al. Struggling to retain living space: patients' stories about living with advanced chronic obstructive pulmonary disease. J Adv Nurs 2011;67:1480-90. [Crossref] [PubMed]
52. Robinson T. Living with severe hypoxic COPD: the patients' experience. Nurs Times 2005;101:38-42. [PubMed]
53. Smallwood N, Currow D, Booth S, et al. Approaches to palliative oxygen therapy in chronic obstructive pulmonary disease: a multi-national survey of specialists. Intern Med J 2019;49:252-6. [Crossref] [PubMed]
54. Suntharalingam J, Hippolyte S, Knowles V, et al. When should I be considering home oxygen for my patients? NPJ Prim Care Respir Med 2016;26:15074. [Crossref] [PubMed]
55. Huang JY, Steele P, Dabscheck E, et al. Nasal High Flow Therapy For Symptom Management in People Receiving Palliative Care. J Pain Symptom Manage 2022;63:e237-45. [Crossref] [PubMed]
56. Cortegiani A, Crimi C, Noto A, et al. Effect of high-flow nasal therapy on dyspnea, comfort, and respiratory rate. Crit Care 2019;23:201. [Crossref] [PubMed]
57. Janssen DJ, de Hosson SM. Attitudes toward opioids for refractory dyspnea in COPD among Dutch chest physicians. Chron Respir Dis 2015;12:85-92. [Crossref] [PubMed]
58. Smallwood N, Le B, Currow D, et al. Management of refractory breathlessness with morphine in patients with chronic obstructive pulmonary disease. Intern Med J 2015;45:898-904. [Crossref] [PubMed]
59. Ekström M, Ferreira D, Chang S, et al. Effect of Regular, Low-Dose, Extended-release Morphine on Chronic Breathlessness in Chronic Obstructive Pulmonary Disease: The BEAMS Randomized Clinical Trial. JAMA 2022;328:2022-32. [Crossref] [PubMed]
60. Liu M, Xiao W, Du L, et al. Effectiveness and safety of opioids on breathlessness and exercise endurance in patients with chronic obstructive pulmonary disease: A systematic review and meta-analysis of randomised controlled trials. Palliat Med 2023;37:1365-78. [Crossref] [PubMed]
61. Verberkt CA, van den Beuken-van Everdingen MHJ, Schols JMGA, et al. Effect of Sustained-Release Morphine for Refractory Breathlessness in Chronic Obstructive Pulmonary Disease on Health Status: A Randomized Clinical Trial. JAMA Intern Med 2020;180:1306-14. [Crossref] [PubMed]
62. Currow D, Louw S, McCloud P, et al. Regular, sustained-release morphine for chronic breathlessness: a multicentre, double-blind, randomised, placebo-controlled trial. Thorax 2020;75:50-6. [Crossref] [PubMed]
63. Heffner JE, Fahy B, Hilling L, et al. Attitudes regarding advance directives among patients in pulmonary rehabilitation. Am J Respir Crit Care Med 1996;154:1735-40. [Crossref] [PubMed]
64. Patel K, Janssen DJ, Curtis JR. Advance care planning in COPD. Respirology 2012;17:72-8. [Crossref] [PubMed]
65. Carlucci A, Vitacca M, Malovini A, et al. End-of-Life Discussion, Patient Understanding and Determinants of Preferences in Very Severe COPD Patients: A Multicentric Study. COPD 2016;13:632-8. [Crossref] [PubMed]
66. Rose EK, O'Connor J. Addressing Advance Care Planning in Patients With COPD. Chest 2022;161:676-83. [Crossref] [PubMed]
67. Stephens AR, Wiener RS, Ieong MH. Comparison of Methods To Identify Advance Care Planning in Patients with Severe Chronic Obstructive Pulmonary Disease Exacerbation. J Palliat Med 2018;21:284-9. [Crossref] [PubMed]
68. Burgess Kelleher A, Sweeney C, Foley T, et al. An e-Delphi Study to Identify Priority Areas for Education on Advance Care Planning in COPD Management. Respir Care 2020;65:347-54. [Crossref] [PubMed]
69. Smallwood N, Thompson M, Warrender-Sparkes M, et al. Integrated respiratory and palliative care may improve outcomes in advanced lung disease. ERJ Open Res 2018;4:00102-2017. [Crossref] [PubMed]
70. Smallwood N, Moran T, Thompson M, et al. Integrated respiratory and palliative care leads to high levels of satisfaction: a survey of patients and carers. BMC Palliat Care 2019;18:7. [Crossref] [PubMed]
71. Philip J, Lowe A, Gold M, et al. Palliative care for patients with chronic obstructive pulmonary disease: exploring the landscape. Intern Med J 2012;42:1053-7. [Crossref] [PubMed]
72. Ospina MB, Voaklander D, Senthilselvan A, et al. Incidence and prevalence of chronic obstructive pulmonary disease among aboriginal peoples in Alberta, Canada. PLoS One 2015;10:e0123204. [Crossref] [PubMed]
73. Young N, Chen W, Wong D, et al. Increased cough, mucus and wheeze characterise COPD and Asthma in Australian Aboriginal adults. Eur Respir J 2021;58:PA680.
74. Disler R, Pascoe A, Hickson H, et al. Service Level Characteristics of Rural Palliative Care for People with Chronic Disease. J Pain Symptom Manage 2023;66:301-9. [Crossref] [PubMed]
75. Philip J, Wiseman R, Eastman P, et al. Mapping non-malignant respiratory palliative care services in Australia and New Zealand. Aust Health Rev 2020;44:778-81. [Crossref] [PubMed]
76. Disler R, Pascoe A, Chen XE, et al. Palliative Approach Remains Lacking in Terminal Hospital Admissions for Chronic Disease Across Rural Settings: Multisite Retrospective Medical Record Audit. J Pain Symptom Manage 2024;67:453-62. [Crossref] [PubMed]
77. Maclagan LC, Wu F, Liu N, et al. Association of Palliative Care with Days at Home and Healthcare Use in Patients with Advanced Chronic Obstructive Pulmonary Disease: A Cohort Study. Ann Am Thorac Soc 2022;19:48-57. [Crossref] [PubMed]
78. Kraskovsky V, Schneider J, Mador MJ, et al. Longer Duration of Palliative Care in Patients With COPD Is Associated With Death Outside the Hospital. J Palliat Care 2022;37:125-33. [Crossref] [PubMed]
79. Haun MW, Estel S, Rücker G, et al. Early palliative care for adults with advanced cancer. Cochrane Database Syst Rev 2017;6:CD011129. [Crossref] [PubMed]
80. 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;62:2202014. [Crossref] [PubMed]
81. Pino M, Parry R. How and when do patients request life-expectancy estimates? Evidence from hospice medical consultations and insights for practice. Patient Educ Couns 2019;102:223-37. [Crossref] [PubMed]
82. Pino M, Parry R, Land V, et al. Engaging Terminally Ill Patients in End of Life Talk: How Experienced Palliative Medicine Doctors Navigate the Dilemma of Promoting Discussions about Dying. PLoS One 2016;11:e0156174. [Crossref] [PubMed]
83. Bostwick D, Wolf S, Samsa G, et al. Comparing the Palliative Care Needs of Those With Cancer to Those With Common Non-Cancer Serious Illness. J Pain Symptom Manage 2017;53:1079-1084.e1. [Crossref] [PubMed]
84. Wysham NG, Cox CE, Wolf SP, et al. Symptom Burden of Chronic Lung Disease Compared with Lung Cancer at Time of Referral for Palliative Care Consultation. Ann Am Thorac Soc 2015;12:1294-301. [Crossref] [PubMed]
85. Waller A, Hobden B, Fakes K, et al. A Systematic Review of the Development and Implementation of Needs-Based Palliative Care Tools in Heart Failure and Chronic Respiratory Disease. Front Cardiovasc Med 2022;9:878428. [Crossref] [PubMed]
86. ElMokhallalati Y, Bradley SH, Chapman E, et al. Identification of patients with potential palliative care needs: A systematic review of screening tools in primary care. Palliat Med 2020;34:989-1005. [Crossref] [PubMed]
87. Rajnoveanu RM, Rajnoveanu AG, Fildan AP, et al. Palliative Care Initiation in Chronic Obstructive Pulmonary Disease: Prognosis-Based, Symptoms-Based or Needs-Based? Int J Chron Obstruct Pulmon Dis 2020;15:1591-600. [Crossref] [PubMed]
88. Landers A, Wiseman R, Pitama S, et al. Patient perceptions of severe COPD and transitions towards death: a qualitative study identifying milestones and developing key opportunities. NPJ Prim Care Respir Med 2015;25:15043. [Crossref] [PubMed]
89. Lane ND, Gillespie SM, Steer J, et al. Uptake of Clinical Prognostic Tools in COPD Exacerbations Requiring Hospitalisation. COPD 2021;18:406-10. [Crossref] [PubMed]
90. Meffert C, Hatami I, Xander C, et al. Palliative care needs in COPD patients with or without cancer: an epidemiological study. Eur Respir J 2015;46:663-70. [Crossref] [PubMed]
91. Lange AV, Mehta AB, Bekelman DB. How Important is Spirometry for Identifying Patients with COPD Appropriate for Palliative Care? J Pain Symptom Manage 2023;65:e181-7. [Crossref] [PubMed]
92. Green E, Shaw SE, Harris T. 'They shouldn't be coming to the ED, should they?' A qualitative study of why patients with palliative care needs present to the emergency department. BMJ Support Palliat Care 2019;9:e29. [Crossref] [PubMed]
93. Philip J, Crawford G, Brand C, et al. A conceptual model: Redesigning how we provide palliative care for patients with chronic obstructive pulmonary disease. Palliat Support Care 2018;16:452-60. [Crossref] [PubMed]
94. Fu Y, Mason A, Boland AC, et al. Palliative Care Needs and Integration of Palliative Care Support in COPD: A Qualitative Study. Chest 2021;159:2222-32. [Crossref] [PubMed]
95. Sullivan DR, Iyer AS, Enguidanos S, et al. Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement. Am J Respir Crit Care Med 2022;206:e44-69. [Crossref] [PubMed]
96. Higginson IJ, Bausewein C, Reilly CC, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med 2014;2:979-87. [Crossref] [PubMed]
97. Farquhar MC, Prevost AT, McCrone P, et al. The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised controlled trial. Trials 2016;17:185. [Crossref] [PubMed]
98. Janssen DJ, Spruit MA, Alsemgeest TP, et al. A patient-centred interdisciplinary palliative care programme for end-stage chronic respiratory diseases. Int J Palliat Nurs 2010;16:189-94. [Crossref] [PubMed]
99. Koolen EH, van der Wees PJ, Westert GP, et al. The COPDnet integrated care model. Int J Chron Obstruct Pulmon Dis 2018;13:2225-35. [Crossref] [PubMed]
100. Véron C, Pautex S, Weber C, et al. Recollection of participating in a trial: A qualitative study of patients with severe and very severe chronic obstructive pulmonary disease. PLoS One 2018;13:e0204701. [Crossref] [PubMed]
101. Ansari AA, Pomerantz DH, Jayes RL, et al. Promoting Primary Palliative Care in Severe Chronic Obstructive Pulmonary Disease: Symptom Management and Preparedness Planning. J Palliat Care 2019;34:85-91. [Crossref] [PubMed]
102. Spilsbury K, Rosenwax L. Community-based specialist palliative care is associated with reduced hospital costs for people with non-cancer conditions during the last year of life. BMC Palliat Care 2017;16:68. [Crossref] [PubMed]
103. Needham DS, Wong IC, Campion PD, et al. Evaluation of the effectiveness of UK community pharmacists' interventions in community palliative care. Palliat Med 2002;16:219-25. [Crossref] [PubMed]
104. Scheerens C, Faes K, Pype P, et al. Earlier palliative home care is associated with patient-centred medical resource utilisation and lower costs in the last 30 days before death in COPD: a population-level decedent cohort study. Eur Respir J 2020;55:1901139. [Crossref] [PubMed]
105. Aiken LS, Butner J, Lockhart CA, et al. Outcome evaluation of a randomized trial of the PhoenixCare intervention: program of case management and coordinated care for the seriously chronically ill. J Palliat Med 2006;9:111-26. [Crossref] [PubMed]
106. Pasanen L, Le Gautier R, Wong A, et al. Telehealth in outpatient delivery of palliative care: A qualitative study of patient and physician views. Palliat Support Care 2022; Epub ahead of print. [Crossref] [PubMed]
107. Vitacca M, Comini L, Tabaglio E, et al. Tele-Assisted Palliative Homecare for Advanced Chronic Obstructive Pulmonary Disease: A Feasibility Study. J Palliat Med 2019;22:173-8. [Crossref] [PubMed]
108. Moran T, Zentner D, Wong J, et al. Chronic breathlessness in advanced cardiorespiratory disease: patient perceptions of opioid use. BMJ Support Palliat Care 2023;13:e334-43. [Crossref] [PubMed]
109. Marx G, Nasse M, Stanze H, et al. Meaning of living with severe chronic obstructive lung disease: a qualitative study. BMJ Open 2016;6:e011555. [Crossref] [PubMed]
110. 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;38:637-43. [Crossref] [PubMed]
111. Edmonds P, Karlsen S, Khan S, et al. A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliat Med 2001;15:287-95. [Crossref] [PubMed]
112. Gysels M, Higginson IJ. The experience of breathlessness: the social course of chronic obstructive pulmonary disease. J Pain Symptom Manage 2010;39:555-63. [Crossref] [PubMed]
113. White P, White S, Edmonds P, et al. Palliative care or end-of-life care in advanced chronic obstructive pulmonary disease: a prospective community survey. Br J Gen Pract 2011;61:e362-70. [Crossref] [PubMed]
114. Elkington H, White P, Addington-Hall J, et al. The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life. Palliat Med 2005;19:485-91. [Crossref] [PubMed]
115. Wilson DM, Ross C, Goodridge D, et al. The care needs of community-dwelling seniors suffering from advanced chronic obstructive pulmonary disease. Can J Aging 2008;27:347-57. [Crossref] [PubMed]
116. Caprio AJ. Palliative care: renaming as supportive care and integration into comprehensive cancer care. CMAJ 2016;188:711-2. [Crossref] [PubMed]
117. Fadul N, Elsayem A, Palmer JL, et al. Supportive versus palliative care: what's in a name?: a survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer 2009;115:2013-21. [Crossref] [PubMed]
118. Hayle C, Coventry PA, Gomm S, et al. Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: a qualitative study. Palliat Med 2013;27:861-8. [Crossref] [PubMed]
119. Philip J, Gold M, Brand C, et al. Facilitating change and adaptation: the experiences of current and bereaved carers of patients with severe chronic obstructive pulmonary disease. J Palliat Med 2014;17:421-7. [Crossref] [PubMed]
120. Seamark DA, Blake SD, Seamark CJ, et al. Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers. An interpretative phenomenological analysis. Palliat Med 2004;18:619-25. [Crossref] [PubMed]
121. Ateş G, Ebenau AF, Busa C, et al. "Never at ease" - family carers within integrated palliative care: a multinational, mixed method study. BMC Palliat Care 2018;17:39. [Crossref] [PubMed]
122. Micklewright K, Farquhar M. Face and content validity of the Carer Support Needs Assessment Tool (CSNAT), and feasibility of the CSNAT intervention, for carers of patients with chronic obstructive pulmonary disease. Chronic Illn 2022;18:532-48. [Crossref] [PubMed]
123. Hasson F, Spence A, Waldron M, et al. Experiences and needs of bereaved carers during palliative and end-of-life care for people with chronic obstructive pulmonary disease. J Palliat Care 2009;25:157-63. [Crossref] [PubMed]
124. Spence A, Hasson F, Waldron M, et al. Active carers: living with chronic obstructive pulmonary disease. Int J Palliat Nurs 2008;14:368-72. [Crossref] [PubMed]
125. Horton R, Rocker G, Dale A, et al. Implementing a palliative care trial in advanced COPD: a feasibility assessment (the COPD IMPACT study). J Palliat Med 2013;16:67-73. [Crossref] [PubMed]
126. Aoun S, Slatyer S, Deas K, et al. Family Caregiver Participation in Palliative Care Research: Challenging the Myth. J Pain Symptom Manage 2017;53:851-61. [Crossref] [PubMed]
127. Hudson P, Aranda S. The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients. BMJ Support Palliat Care 2014;4:231-7. [Crossref] [PubMed]
128. Spence A, Hasson F, Waldron M, et al. Professionals delivering palliative care to people with COPD: qualitative study. Palliat Med 2009;23:126-31. [Crossref] [PubMed]
129. Mousing CA, Timm H, Lomborg K, et al. Barriers to palliative care in people with chronic obstructive pulmonary disease in home care: A qualitative study of the perspective of professional caregivers. J Clin Nurs 2018;27:650-60. [Crossref] [PubMed]
130. Disler R, Cui Y, Luckett T, et al. Respiratory Nurses Have Positive Attitudes But Lack Confidence in Advance Care Planning for Chronic Obstructive Pulmonary Disease: Online Survey. J Hosp Palliat Nurs 2021;23:442-54. [Crossref] [PubMed]
131. Smallwood N, Currow D, Booth S, et al. Attitudes to specialist palliative care and advance care planning in people with COPD: a multi-national survey of palliative and respiratory medicine specialists. BMC Palliat Care 2018;17:115. [Crossref] [PubMed]
132. Politis J, Eastman P, Le B, et al. Managing Severe Chronic Breathlessness in Chronic Obstructive Pulmonary Disease Is Challenging for General Practitioners. Am J Hosp Palliat Care 2021;38:472-9. [Crossref] [PubMed]
133. Strang S, Ekberg-Jansson A, Strang P, et al. Palliative care in COPD--web survey in Sweden highlights the current situation for a vulnerable group of patients. Ups J Med Sci 2013;118:181-6. [Crossref] [PubMed]
134. Wang J, Willis K, Barson E, et al. The complexity of mental health care for people with COPD: a qualitative study of clinicians' perspectives. NPJ Prim Care Respir Med 2021;31:40. [Crossref] [PubMed]
135. Hasson F, Spence A, Waldron M, et al. I can not get a breath: experiences of living with advanced chronic obstructive pulmonary disease. Int J Palliat Nurs 2008;14:526-31. [Crossref] [PubMed]
136. Gardiner C, Gott M, Small N, et al. Living with advanced chronic obstructive pulmonary disease: patients concerns regarding death and dying. Palliat Med 2009;23:691-7. [Crossref] [PubMed]
137. Tavares N, Jarrett N, Wilkinson TMA, et al. Patient-Centered Discussions About Disease Progression, Symptom, and Treatment Burden in Chronic Obstructive Pulmonary Disease Could Facilitate the Integration of End-of-Life Discussions in the Disease Trajectory: Patient, Clinician, and Literature Perspectives: A Multimethod Approach. J Palliat Med 2023;26:353-9. [Crossref] [PubMed]
138. Matsui M. Nurses' symptom management and views on death and caring for heart failure and chronic obstructive pulmonary disease. Int J Palliat Nurs 2022;28:214-21. [Crossref] [PubMed]