Early,integrated palliative care for people with chronic respiratory disease: lessons learnt from lung cancer

Abstract

Lung cancer and chronic non-malignant respiratory disease cause pervasive, multifactorial suffering for patients and informal carers alike. Palliative care aims to reduce suffering and improve quality of life for patients and their families. An established evidence base exists that has demonstrated the essential role of specialist palliative care for people with lung cancer. Emerging evidence supports similar benefits among people with chronic respiratory disease. Many lessons can be learnt from lung cancer care, particularly as the model of care delivery has transformed over recent decades due to major advances in the diagnostic pathway and the development of new treatments. This narrative review aims to summarize the evidence for specialist palliative care in lung cancer and chronic respiratory disease, by highlighting seven key lessons from lung cancer care that can inform the development of proactive, integrated models of palliative care among those with chronic respiratory disease. These seven lessons emphasize (1) managing challenging symptoms; (2) the efficacy of specialist palliative care; (3) the importance of providing specialist palliative care integrated with disease-directed care according to patients’ needs not prognosis; (4) the need for new models of collaborative palliative care, (5) which are culturally appropriate and (6) able to evolve with changes in disease-directed care. Finally, we discuss (7) some of the critical research gaps that persist and reduce implementation in practice.

Keywords

chronic respiratory disease chronic obstructive pulmonary disease interstitial lung disease lung cancer (lung neoplasm)palliative care supportive care

Introduction

Lung cancer and non-malignant chronic respiratory disease (e.g. chronic obstructive pulmonary disease (COPD), interstitial lung disease (ILD), pulmonary hypertension and others) are both leading causes of death and disability globally.^1,2 Non-malignant respiratory diseases henceforth will be referred to collectively as chronic respiratory disease. Both lung cancer and chronic respiratory disease result in similarly high symptom burden.^3,4 Some of the most common and burdensome symptoms include breathlessness, cough and fatigue, as well as psychological distress, depression and anxiety.^3
–6 The symptom burden often persists for many years throughout the illness trajectory and is not isolated to the terminal phase;³ therefore, timely identification and management of patients’ needs is crucial to preserve quality of life (QOL).^7
–10 Informal carers (i.e. support persons and/or family members) for people with both lung cancer and chronic respiratory disease also suffer psychologically and emotionally.^11,12

In lung cancer, palliative care is a critical intervention, underpinned by robust evidence.^13
–17 Randomized controlled trials (RCTs) have demonstrated that early implementation of specialist palliative care, within 8 weeks of diagnosis of metastatic disease, improves QOL and mood,^15,16 and potentially even survival¹⁵. The evidence base in chronic respiratory disease continues to expand, with increasing evidence demonstrating the benefits of specialist palliative care and symptom-based interventions.^10,18
–20

Yet despite this growing evidence, implementation of specialist palliative care in both lung cancer and chronic respiratory disease is limited. Only 21% of people with cancer and 4% with non-malignant disease consult with a specialist palliative care physician in the year before death, and for most, this occurs in the last 2–3 weeks before death.^21,22 To overcome this implementation failure, new models of individualized palliative care and symptom management are needed, which are sustainable and culturally appropriate.

The initial RCTs investigating specialist palliative care for people with lung cancer began enrolment in the early 2000s;^15,16 however, the diagnostic and treatment landscape of lung cancer care has completely transformed over the last two decades, with the initiation of lung cancer screening, diagnostic advances and the discovery of immunotherapy and targeted treatments.^23
–28 People are being diagnosed earlier and living longer with complex symptom burden, often over longer periods of time.^26,29
–31 Therefore, supportive and palliative care is more important today than ever before.

As the evidence base regarding palliative care continues to evolve for people with non-malignant respiratory disease, we can extrapolate and learn from the robust body of evidence in lung cancer for three main reasons. First, there is significant pathological crossover between COPD and lung cancer, with up to 60% of people in a lung cancer screening cohort having concurrent COPD.³² Second, there is significant overlap between the most prevalent and burdensome of symptoms between malignant and non-malignant advanced respiratory disease.^3
–6 Finally, the management approach for challenging symptoms, such as breathlessness, anxiety and fatigue, is transdiagnostic and thus similar regardless of the underlying disease aetiology.²⁰

This review summarizes the evidence underpinning the role of specialist palliative care for people with lung cancer and emphasizes seven fundamental principles that can be applied to the care of people with chronic respiratory diseases (Figure 1). In this review, we will first discuss the challenging symptoms affecting people with lung cancer and chronic respiratory disease. We will then review in detail the current evidence for palliative care interventions regarding their efficacy, timing, setting and integration with disease-directed treatments. Finally, we will discuss alternative models of palliative care, and examine some of the issues and knowledge gaps which need to be addressed to optimize the model of palliative care for people with lung cancer or chronic lung disease and their informal carers.

Figure 1.

Seven key lessons learnt from palliative care in lung cancer.

Palliative care

Palliative care is defined by the World Health Organization (WHO) as ‘an approach that improves the quality of life of patients and their families when facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment, and treatment of pain and other problems – physical, psychosocial and spiritual’.³³ The WHO recommends palliative care should be initiated shortly after diagnosis with an incurable disease, and not limited to the terminal phase.³⁴ Palliative care should thus be integrated together with disease directed therapy, and up-titrated and down-titrated, according to patient and informal carer needs over the disease trajectory, including continuing after death by supporting carers and family with bereavement (Figure 2).^3,7

Figure 2.

Timing of palliative care integration within serious respiratory disease trajectory.

Palliative care is traditionally delivered by specialist (or secondary) palliative care providers, who have undergone extra training and completed specialist qualifications in palliative care. However, many palliative care interventions can be provided by primary (or generalist) palliative care providers, who are trained in basic theories of palliative care but are not designated palliative care specialists. This includes healthcare providers such as general practitioners, respiratory physicians, pharmacists, nurses and allied health providers.⁷

Palliative care interventions are complex and multifaceted.³⁵ Eight key domains highlight the structural, physical, psychological, social, spiritual, cultural, end-of-life, ethical and legal aspects of care.³⁶ These domains provide a framework, although there is no standard model of care or approach, regarding how, what, where or when to offer and provide palliative care to people with chronic respiratory disease.

Palliative care can also be delivered in a variety of settings including inpatient palliative care units, inpatient consultative services, outpatient clinics, general practice or other community settings, at home or in standalone palliative care facilities (hospices). Thus, palliative care is not defined by the location of care delivery.

Lesson 1: Challenging unmet symptoms occur in people with lung cancer and chronic respiratory disease

There is considerable overlap in the symptoms of lung cancer and other chronic respiratory diseases, such as COPD and ILD^3
–6 (Figure 3). People with lung cancer experience a high symptom burden and significant suffering with both physical and psychosocial issues.^31,37
–39 A large population cohort study of almost 75,000 people with lung cancer found that 84% had severe symptoms (Edmonton Symptom Assessment Scale (ESAS) ⩾ 7), and those with lung cancer and concurrent COPD had a worse symptom burden than those with lung cancer alone.³⁸ In advanced lung cancer, people experience a median of nine symptoms,⁴⁰ with the most common and intense symptoms including breathlessness, cough, pain and fatigue.^4,41,42 Each of these symptoms when measured on the Lung Cancer Symptom Scale, a validated patient-reported outcome measure, is associated with reduced health-related QOL.⁴²

Figure 3.

Symptoms at time of referral to specialist palliative care in United States.

People with lung cancer have the highest prevalence of breathlessness, compared to any other cancer.⁴³ It is estimated that approximately 85% of people with lung cancer, across Stage I to IV, experience any breathlessness.^43,44 Episodic acute on chronic breathlessness results in significant symptom burden in lung cancer.⁴⁵ In lung cancer, breathlessness is frequently reported to be one of the most distressing symptoms^44,46 and is worse in those with anxiety, depression or co-existent COPD.^44,47

Similarly, people with chronic respiratory disease universally experience chronic breathlessness.⁴⁸ Indeed breathlessness in people with chronic respiratory disease is more prevalent,⁴⁸ severe⁴⁹ and persistent,⁴⁹ compared to those with cancer, and similarly compounded by episodic, acute on chronic breathlessness crises.⁵⁰ Breathlessness is pervasive throughout all aspects of daily life and results in suffering and increased healthcare burden.^51,52

Among people with lung cancer chronic cough is disabling, resulting in physical, psychological and social distress and impaired health-related QOL.⁵³ A longitudinal qualitative study of patient symptom experience found that chronic cough was synergistic with the experience of breathlessness and fatigue in people with lung cancer.⁴⁶ Similarly, chronic cough is also prevalent among people with chronic respiratory disease.^4,54 A 2024 prospective observational study of 3886 people with fibrotic ILD in Canada found that cough continued to worsen despite the use of antifibrotic treatment and was associated with worsening QOL, disease progression and survival.⁵⁴

The stigma associated with lung cancer and COPD is reported by both patients and clinicans,⁵⁵ and experienced equally in smokers and non-smokers alike.⁵⁶ Stigma is associated with reduced QOL⁵⁵ and increased distress⁵⁵ among people with lung cancer. In COPD, stigma has been associated with supplemental oxygen use,⁵⁷ and the perceived ‘self-inflicted’ causality due to the association with smoking.⁵⁸

Lung cancer also results in immense psychological burden, with high rates of depression,^59
–61 anxiety^59,61 and distress.^39,62 People with lung cancer experience more psychological distress than any cancer subtype.^39,62 Depression has been associated with mortality across lung cancer disease stages.⁶³ Similarly, anxiety,^64,65 depression^65,66 and social isolation⁶⁷ are common in people with COPD and ILD and are associated with worse health outcomes.^64,68

Importantly, symptom burden extends beyond the person with lung cancer or chronic respiratory disease, with their informal carers also experiencing significant distress.^11,12 Carers can suffer emotionally, psychosocially and financially, with reduced QOL, sleeplessness, fatigue and loneliness.^11,12,69,70

Key learning: With such a high burden of symptoms affecting both people with lung cancer and those with chronic respiratory disease, there is a need for holistic symptom management and palliative care throughout the disease trajectory.

Lesson 2: Specialist palliative care is effective for people with lung cancer and chronic respiratory diseases

There is robust evidence supporting specialist palliative care integrated together with usual disease directed care for people with lung cancer.^13,71 The seminal RCT that compared specialist palliative care to standard oncological care alone, within 8 weeks of diagnosis of metastatic non-small cell lung cancer (NSCLC), was published in 2010 by Temel et al.¹⁵ The intervention group first met with a specialist palliative clinician (average consultation length: 55 min), then 6 weekly thereafter with a member from the palliative multi-disciplinary team, receiving an average of four clinical encounters. This trial demonstrated a statistically and clinically significant⁷² improvement in QOL (p = 0.03), and a reduced proportion of patients with significant depressive symptoms (16% vs 38% p = 0.01) at 12 weeks in those receiving the intervention compared to standard care only.¹⁵ It also showed improved survival, reduced hospitalizations, emergency visits and total healthcare costs, as well as reduced chemotherapy in the 60 days prior to death, improved illness understanding and documentation of resuscitation preferences.^15,73
–75 This trial demonstrated the significant benefits of early palliative care in advanced-stage NSCLC with improved overall survival.

Several other large RCTs comparing specialist palliative care to usual care for people with cancer have followed from Canada, USA, China and Europe demonstrating the benefits of early specialist palliative care.^14,76
–78 Although, variability exists in the speciality palliative care interventions delivered, with some not demonstrating statistically significant benefit.^79
–81 Importantly, no studies of specialist palliative care for people with lung cancer have shown any harm.¹³ Additionally, several large high-quality population-based observational studies of people with lung cancer have supported these RCT findings, showing specialist palliative care improves survival, reduces healthcare utilization and costs, as well as reduces aggressive futile care toward the end of life.^82
–86 Multiple qualitative studies have also shown the high value people with lung cancer place on specialist palliative care interventions.^87,88

A systematic review conducted as part of the 2023 European Respiratory Society (ERS) guideline on various aspects of quality in lung cancer care identified 30 studies, which examined the evidence for early palliative care.¹³ The authors demonstrated an overall survival benefit from receiving early specialist care compared with no specialist palliative care (2 RCTs, 642 patients: HR 0.72, 98% CI 0.55–0.96), albeit the evidence was of very low quality and heterogeneity in QOL measures impeded meta-analyses.¹³

Specialist palliative care also benefits the carers of people with lung cancer, although the evidence is less robust than for patients.^70,76,89 A 2019 systematic review of carer-based psychosocial interventions in lung cancer found multi-component and communication-based interventions, more than singular focused interventions (e.g. stress reduction or coping-skills alone), improved carer burden, distress, mood, QOL and coping ability, although not always reaching statistical significance.⁷⁰ Qualitative interviews similarly shows that carer support programs can address informational, practical and financial needs and provide emotional support, including through bereavement.¹¹

The evidence for specialist palliative care in other chronic respiratory disease is less established than in lung cancer. A 2014 RCT in chronic respiratory disease, randomized 105 people with refractory breathlessness to a short-term breathlessness support service in London, involving specialist palliative care, respiratory, physiotherapy and occupational therapy.¹⁸ This trial found improved mastery of breathlessness at 6 weeks, and improved survival at 6 months for people with COPD or ILD.¹⁸ Other RCT⁹⁰ and non-RCT studies^19,91
–93 from United Kingdom, Canada and Australia have shown benefits from early integrated specialist palliative care services when combined into existing services, including increased active management of breathlessness, advance care planning, reduced emergency presentations and reduced in-hospital deaths.

However, these results have not been consistently replicated, with a 2021 systematic review of palliative care interventions in COPD, finding that the overall evidence of effectiveness is mixed and inconclusive. This is likely because to date, only five specialist palliative care interventions in chronic respiratory disease have been studied in adequately powered, controlled trials, with the majority being before-and-after studies or pilot trials.^9,94 However, all studies reported that the palliative care interventions were highly valued by people with COPD, their carers and clinicians, with high acceptability.⁹⁴

A systematic review performed as part of the 2024 ERS Clinical Practice Guideline on symptom management for adults with non-malignant serious respiratory illness⁹ found that multi-component service interventions embedded in palliative care or respiratory services improved breathlessness mastery and average intensity, QOL and survival compared to usual care, with minimal cost and adverse events. Although the overall certainty of evidence was very low.

Regarding carer-related outcomes in chronic respiratory diseases, a 2023 systematic review found that no primary RCT data have measured carer-related outcomes; however, qualitative and observational studies suggest that palliative care is highly valued by informal carers.¹⁰ In ILD, there is limited RCT evidence showing palliative care interventions improve QOL, burden and mood for carers.¹⁰

Key learning: Specialist palliative care has proven benefits for the person, their carer and the healthcare system in both lung cancer and other chronic respiratory diseases.

Lesson 3: Palliative care should be offered early together with disease-directed care, according to needs not prognosis or disease status

To date, there has been no robust evidence linking timing of specialist palliative care initiation to healthcare outcomes in chronic respiratory disease. Given the high needs and difficult prognostication in this group, defined referral criteria to specialist palliative care are needed.⁹⁵ A 2021 systematic review highlighted that key referral criteria include chronic breathlessness, psychological distress, existential distress, increasing care dependency, two or more hospitalizations, or need for advanced respiratory therapies (e.g. non-invasive ventilation, home oxygen therapy).⁹⁶ Other secondary prognostic markers such as forced expiratory volume in the first second (FEV1 < 30%), multimorbidity, low albumin and holistic symptoms needs have also been suggested as referral criteria.^96,97 Current evidence from mixed-disease populations suggests that a minimum of 3–4 months of specialist palliative care is required to receive maximum benefit;^21,22,93,98 therefore, identifying people with chronic respiratory disease who need palliative care before the terminal phase is vital.

In the lung cancer literature, the optimal time to initiate specialist palliative care has been debated over the last two decades. International lung cancer guidelines unanimously recommend the integration of palliative care into routine lung cancer care, although the exact recommended timing of initiation varies across guidelines.^13,99
–105

There is significant variability in the definition of ‘early’ in studies examining palliative care in people with lung cancer (Figure 4). In analysing the 30 studies included in the ‘early’ palliative care systematic review as part of the 2023 ERS Guideline on various aspects of quality in lung cancer care,¹³ 43% (13/30) followed the Temel approach,¹⁵ classifying ‘early’ palliative care as within 8 weeks of diagnosis of advanced or metastatic disease,^{15
–17,74,76,79,81,106,107} or a slight variation on this.^{77,84,108,109} The remaining (17/30) studies used a combination of other measures to define ‘early’, including prognostic or functional measures,^{16,17,110,111} timing around initiation of treatment,¹⁰⁸ enrolment into a clinical trial,¹¹² or a QOL score indicating patient needs.¹¹³ Some studies arguably were not providing ‘early’ palliative care, as recruitment occurred during or after an inpatient admission.^110,114,115 Similarly, there is variability in the inclusion criteria of RCTs of palliative care in COPD.¹¹⁶ A 2024 systematic review identifies that hospitalization for acute exacerbation (8/15, 57%), initiation of home oxygen therapy (8/15, 57%) and spirometric criteria (6/15, 43%) are the most commonly used eligibility criteria for palliative care RCTs in people with COPD.¹¹⁶

Figure 4.

Defining the optimal timing of palliative care in lung cancer.

To date, two studies have directly compared early specialist palliative care with late referral in people lung cancer based on either disease stage¹¹⁷ or time since diagnosis.¹⁷ Both studies showed more pronounced improvements in those assigned to the early palliative care group, defined as Stage I-IIIB,¹¹⁶ or 4–8 weeks post diagnosis,¹⁷ respectively. To our knowledge, no head-to-head RCTs exist comparing early versus late palliative care in people with chronic respiratory disease. However, a large 2020 population-based observational study of people with COPD in Belgium showed that the greatest benefit occurred when home-based palliative care was delivered 1–3 months prior to death.⁹³

To successfully integrate palliative care together with disease-directed care, a multidisciplinary outpatient or community model is theoretically ideal. This allows for earlier initiation in the disease trajectory, rather than waiting for an inpatient admission. This was evaluated by a 2020 retrospective cohort study of over 23,000 people with advanced lung cancer in the USA, which found that those whose initial encounter with a specialist palliative care team was as an outpatient had a reduced risk of hospitalization and ICU admission compared with those whose initial encounter occurred as an inpatient (Figure 5).⁸³ The integration of palliative care within usual disease-directed care and with other treating clinicians, including primary care, is also ideal.^3,118,119

Figure 5.

Risk of healthcare utilization associated with specialist palliative care setting (outpatient or inpatient) in people with advanced lung cancer.

Needs-based initiation of palliative care

Referring all people with a life-limiting disease early in their illness trajectory, although ideal, is resource intensive.¹²⁰ A more pragmatic approach is to refer people with significant palliative care needs, irrespective of their disease status or estimated prognosis. Recent ERS and ATS Clinical Practice Guidelines have recommended, regular and comprehensive assessment and management of palliative care needs, with routine holistic clinical assessment.^7,9,10

However, a needs-based individualized approach is somewhat labour intensive requiring the healthcare provider to be acutely aware of the patient and carer needs, thus having the time and knowledge to regularly screen for needs at each encounter, and then actively referring the person to specialist palliative care (assuming these resources exist).¹²¹ It carries the risk that the people who may benefit, might be missed, or referred too late in the disease trajectory to provide meaningful benefit. It has been shown that people rarely freely volunteer, or downplay symptoms,¹²² and without the routine use of patient-reported outcome measures symptoms are missed 50% of the time.¹²³

The role of specific screening tools for symptoms and palliative care needs in people with lung cancer and other chronic respiratory diseases, is an area of emerging evidence. These tools include symptom scores (e.g. Edmonton Symptom Assessment Scale (ESAS)), QOL scores, or specific palliative care needs assessment tools^124
–126 (e.g. Needs Assessment Tool Patients & Families (NAT-P&F) and NAT-Progressive Disease in ILD). Secondary analyses from a large cluster-RCT examining the role of palliative care in people with malignancy demonstrated improved outcomes (QOL, patient satisfaction, information/communication needs) in those with high baseline symptom burden (ESAS > 23), but no significant differences in those with low baseline symptoms (ESAS < 23).¹²⁷ Similarly, a recent RCT examining specialist palliative care in people with lung cancer demonstrated non-inferiority of a stepped intervention, where frequency of follow-up palliative care encounters was based on regular (6 weekly) QOL assessment or change in cancer trajectory (e.g. progression, treatment toxicity, discontinuation therapy, hospitalization) versus routine four weekly follow-up encounters.¹²⁸ This was a multi-site study across the United States, enrolling 507 people with incurable lung cancers. Importantly, in both arms, the initial encounter with the specialist palliative care team was within 12 weeks of receiving a diagnosis of incurable lung cancer.¹²⁸

Stepped palliative care interventions are currently underway in chronic respiratory disease.¹²⁹ However, to date, there have been no robust prospective studies linking initiation of palliative care based on screening of needs to improved health-related outcomes in chronic respiratory disease. More research is needed in this space.

Key learning: Addressing palliative care needs earlier, together with disease-directed care, is vital for people with lung cancer and chronic respiratory disease. Initiation of palliative care should be based on the individual needs of patients and their carers, rather than based on disease- or prognosis- based timing criteria alone.

Lesson 4: New models of palliative care are urgently required in lung cancer and chronic respiratory disease

Despite the known benefits and unanimous recommendation in international guidelines, the majority of people with lung cancer and chronic respiratory disease do not access palliative care and those that do usually do not access specialist palliative care until the very end-of-life.^3,7,8 Rates of access to specialist palliative care vary across the published literature between respiratory conditions and geographical location (estimates ranging 4%–40%).^{92,130
–135} But it has been consistently shown that people with chronic respiratory disease are even less likely to receive specialist palliative care,^21,136 and it is more often only in the last few days of life.^21,137 This signifies a profound failure of implementation.

Barriers to palliative care implementation in lung cancer and chronic respiratory disease are multifactorial, including difficulty in prognostication, lack of recognition of holistic needs, as well as perceived or actual reluctance of patients and families to engage with palliative care interventions or teams.^138
–140 Despite increasing numbers of specialist palliative care services, very few offer outpatient clinics, with approximately 80% of specialist palliative care provided to inpatients.¹⁴¹ Furthermore, a significant specialist palliative care workforce shortage exists,^142,143 with this shortage predicted to persist for over the next two decades or more.¹⁴²

To meet the demand for specialist palliative care, the model of delivery needs to change. One way to address this issue is to move away from focusing on specialist palliative care providers, and instead build on our existing health workforce to develop a primary palliative care model for people with respiratory disease.¹¹⁹ Within this model, healthcare providers who are not specialist palliative care providers (e.g. general practitioners, respiratory physicians and others) can identify, assess and manage basic palliative care needs (Figure 6).⁷ It acknowledges that the increasing demand for palliative care cannot solely be met by specialist palliative care providers.¹⁴⁴

Figure 6.

Types of palliative care with examples of skill sets and responsibilities.

Benefits of primary palliative care include greater continuity of care, reduced sense of abandonment for patients and their carers, potential for earlier integration with disease-directed care, and comorbidity management compared to specialist palliative care. Additionally, this model may reduce healthcare costs and complexity for seriously ill people.^7,144 While there is less robust evidence for primary palliative care compared to specialist palliative care,¹⁴⁵ the evidence base is evolving.^145,146

Key Learning: Innovative models of care are needed to overcome the failure of implementation of palliative care in lung cancer and chronic respiratory diseases, with collaboration required between primary and specialist palliative care clinicians.

Lesson 5: Palliative care must be culturally sensitive and acceptable for each person

There are significant geographical, socio-economic, ethnic and sex-based factors that drive the epidemiology of lung cancer,^147,148 yet very few culturally diverse models of palliative care have been studied. The entire evidence base of specialist palliative care for people with lung cancer to date has been derived from high-income Western countries, with the majority from USA (22/30, 73%).¹³ Globally, indigenous people have a higher incidence of lung cancer,¹⁴⁹ and lung cancer outcomes continue to be dramatically worse in remote and indigenous populations, as well as socially, economically and educationally disadvantaged populations.^150
–152 The generalizability of the effect of specialist palliative care interventions for people with lung cancer, across broader social determinants of health, is unknown.

Social determinants of health also play a key role in the epidemiology of chronic respiratory disease and access to healthcare, with COPD being associated with low socioeconomic status, sex, education, occupation, rurality and ethnicity.^153
–157 Similarly, a recent scoping review identified that all the studies to date that have examined multi-component palliative care interventions in chronic respiratory disease have been conducted in high-income countries,¹⁵⁸ and reporting of social determinants such as ethnicity, income, occupation and education in those studies is scarce.¹⁵⁸

Access to specialist palliative care is not equitable,¹⁵⁹ with significant international variability,⁸ whereas access and the comprehensiveness of primary palliative care are unknown and notoriously difficult to quantify. Variations between healthcare systems, policies, funding models and cultures make a single best model of care unlikely. Ideally, each model of care should be tailored to the priorities, strengths and resources of each healthcare system. In resource limited settings, this is even more pertinent, with significant policy, funding and educational support required. Minimal research to date has been undertaken in resource limited settings.^160,161 More research into adaptation of culturally specific models of palliative care is required.

Finally, patient and carer acceptance of palliative care varies significantly across countries, cultures and religions.¹⁶² For example, in traditional Chinese culture, death is seen as ‘unlucky’, and carers feel a strong cultural respect and duty of care toward elders, which may contribute to reluctance to accept help with end-of-life care.¹⁶² This is compounded by palliative care generally not being funded through the national health insurance programme in China.¹⁶³

Key Learning: Current models of palliative care may not be representative of cultural sensitives and acceptability across different cultural and socioeconomic groups. More research is required in this space.

Lesson 6: Treatment advances can change disease processes, so the model of palliative care must also adapt to the evolving needs of patients and carers in lung cancer and chronic respiratory disease

As the evidence for palliative care in lung cancer has grown over the last two decades, simultaneously the diagnostic and treatment landscape in lung cancer has transformed.^13,71 With these advances, more people are living longer with lung cancer, but burdened with the poorest QOL and highest psychological distress compared to other cancer types.³⁹ The needs of patients and their carers both living with and dying from lung cancer have changed.^37,164 Their complex symptom burden is now extended over longer periods of time, similar to people with chronic respiratory disease.^26,29,30 Lung cancer survivors face complex issues including long-term physical symptoms, psychosocial, financial and existential needs compounded by surveillance for lung cancer recurrence, as well as management of multi-morbidity and high carer needs.^{39,165
–168} In lung cancer, we are starting to recognize the parallels and similarities of survivorship care with palliative care,¹⁶⁹ with both requiring holistic symptom management and a patient-centred approach. This game-changing paradigm shift brings into question the current model of palliative care for people lung cancer, particularly regarding when, how and to whom palliative care should be offered.

As the evidence base supporting the role of palliative care for people with chronic respiratory disease grows, it is vital that we heed this change in lung cancer care. The models of care currently being studied for people with COPD or ILD could quickly become obsolete if new therapy was discovered that was able to reverse fibrosis or emphysema. We have already seen a similar transformation in cystic fibrosis (CF) care with CF transmembrane conductance regulator therapy,¹⁷⁰ which has completely changed the disease trajectory, prognosis, symptoms and needs of many people with CF.

Importantly, new treatments bring new challenging side effects, changing the physical, psychological and informational needs of patients and their carers. In chronic respiratory disease, the repercussions of new biologic therapy¹⁷¹ and antifibrotic therapy for ILD¹⁷² are starting to emerge. Potentially life-prolonging advanced respiratory supports, such as nasal high-flow therapy and extracorporeal membrane oxygenation, highlight the complexities yet criticality of shared decision-making and end-of-life planning in advanced respiratory disease. In lung cancer, the discovery of immunotherapy and targeted treatments has revolutionized outcomes; however, these therapies often result in difficult to manage side effects, which often persist even after cessation of therapy.^{167,168,173,174} Several large qualitative studies have highlighted the burden of chronic treatment-related toxicity, as well as significant psychological uncertainty with high information needs in the context of limited long-term survival data.^167,168 There is emerging evidence that people with lung cancer on targeted therapy have high rates of anticancer therapy close to death, more in-hospital death compared to home or hospice death,^175,176 and are less likely to discuss prognosis compared to those without targetable mutations.¹⁷⁷ This situation may reflect poorly timed palliative care initiation in this group, in the setting of difficult prognostication and expectations of these innovative therapies.

Key learning: Needs and prognosis can rapidly change, so the model of palliative care must also be agile and able to adapt.

Lesson 7: Many questions remain, so more research is urgently needed

The relative paucity of evidence for palliative care for people with chronic respiratory disease and the transformation in lung cancer care means that urgent work is needed to assess the optimal model of palliative care in both malignant and non-malignant advanced respiratory disease. As the evidence base continues to develop in non-malignant chronic respiratory disease, we can learn many lessons from the evidence and experience in lung cancer.

There is emerging evidence regarding remote telehealth palliative interventions,¹⁷⁸ wearable technology and remote monitoring generally in palliative care,¹⁷⁹ with very little specific to lung cancer¹⁷⁸ or chronic respiratory disease. The efficacy of embedded patient-reported outcomes in the electronic-medical record and utilization of machine-learning- and mobile-based applications to flag people who may benefit from palliative care is an area of growing interest,^180,181 yet to be fully evaluated.

RCTs of telehealth,¹⁸² supportive care mobile applications,¹⁸³ shared decision-making¹⁸⁴ and stepped palliative care interventions¹⁸⁵ in lung cancer are currently underway. Similarly, in chronic respiratory disease, stepped wedged palliative care interventions,¹²⁹ new breathlessness therapies¹⁸⁶ and innovative models of breathlessness management in primary care¹⁸⁷ are currently underway in chronic respiratory disease.

Several unanswered questions remain surrounding palliative care for both lung cancer and chronic respiratory disease, including:

Which referral criteria should be used to identify when to refer people for specialist palliative care?

Can we predict which patients will have the greatest health outcome gains from receiving specialist palliative care?

What is the optimal needs assessment tool to identify those who may benefit from palliative care, and how often to screen?

How should we best collaborate and engage with primary care teams when providing palliative care to people with chronic respiratory disease or lung cancer?

How do we effectively utilize primary and secondary palliative care resources, skills and knowledge to most efficiently and effectively address patient and carer needs?

Who is best placed to manage refractory symptom clusters?

Can we develop better and more specific new treatments for burdensome symptoms such as cough, fatigue and breathlessness?

Key learning: More research is urgently needed into palliative care in advanced respiratory disease. As the body of evidence grows, we need to look beyond disease silos to learn from the strengths and lessons from other diseases.

Conclusion

There is robust evidence supporting early integration of specialist palliative care as part of comprehensive lung cancer care. People with lung cancer and their carers experience pervasive and burdensome symptoms, which are also highly prevalent and severe among patients with other chronic respiratory diseases. In both malignant and non-malignant respiratory disease, palliative care has been shown to benefit the person, their carer and the healthcare system, with reduced cost and non-beneficial resource utilization. Palliative care should ideally be initiated early in the outpatient setting and integrated with disease-directed care, whilst being tailored to the individual patient and their carer. More research into innovative models of patient-centred sustainable palliative care which is culturally appropriate is urgently required to relieve the significant suffering experienced by people with chronic respiratory diseases.

Footnotes

Acknowledgements

None.

Declarations

ORCID iD

Anne M. Walker

Donald R. Sullivan

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