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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

References

GBD 2013 Mortality and Causes of Death Collaborators. Global, regional, and national age-sex specific all-cause and cause-specific mortality for 240 causes of death, 1990-2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet 2015; 385: 117–171.

Global, regional, and national cancer incidence, mortality, years of life lost, years Lived with disability, and disability-adjusted life-years for 29 cancer groups, 1990 to 2017: a systematic analysis for the global burden of disease Study. JAMA Oncology 2019; 5: 1749–1768.

Kelley Amy

Morrison

. Palliative care for the seriously Ill. N Engl J Med 373: 747–755.

Wysham

Cox

Wolf

, 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: 1294–1301.

Barnes-Harris

Allingham

Morgan

, et al. Comparing functional decline and distress from symptoms in people with thoracic life-limiting illnesses: lung cancers and non-malignant end-stage respiratory diseases. Thorax 2021; 76: 989–995.

Ahmadi

Wysham

Lundström

, et al. End-of-life care in oxygen-dependent ILD compared with lung cancer: a national population-based study. Thorax 2016; 71: 510.

Sullivan

Iyer

Enguidanos

, 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–e69.

Blum

Schönfeld

The lung cancer patient, the pneumologist and palliative care: a developing alliance. Eur Respir J 2015; 45: 211–226.

Holland

Spathis

Marsaa

, et al. European Respiratory Society Clinical Practice Guideline on symptom management for adults with serious respiratory illness. Eur Respir J 2024; 63: 20240508.

10.

Janssen

DJA

Bajwah

Boon

, et al. European Respiratory Society Clinical Practice Guideline: palliative care for people with chronic obstructive pulmonary disease or interstitial lung disease. Eur Respir J 2023; 62: 2202014.

11.

Ryan

Howell

Jones

, et al. Lung cancer, caring for the caregivers. A qualitative study of providing pro-active social support targeted to the carers of patients with lung cancer. Palliat Med 2008; 22: 233–238.

12.

Hirdes

Freeman

Smith

, et al. Predictors of caregiver distress among palliative home care clients in Ontario: evidence based on the interRAI palliative care. Palliat Support Care 2012; 10: 155–163.

13.

Blum

Morgan

Durieux

, et al. European Respiratory Society guideline on various aspects of quality in lung cancer care. Eur Respir J 2023; 61: 2103201.

14.

Zimmermann

Swami

Krzyzanowska

, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet 2014; 383: 1721–1730.

15.

Temel

Greer

Muzikansky

, et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N EnglJ Med 2010; 363: 733–742.

16.

Bakitas

Lyons

Hegel

, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA 2009; 302: 741–749.

17.

Bakitas

Tosteson

, et al. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the ENABLE III randomized controlled trial. J Clin Oncol 2015; 33: 1438–1445.

18.

Higginson

Bausewein

Reilly

, 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: 979–987.

19.

Smallwood

Thompson

Warrender-Sparkes

, et al. Integrated respiratory and palliative care may improve outcomes in advanced lung disease. ERJ Open Res 2018; 4: 00102–02017.

20.

Bekelman

Feser

Morgan

, et al. Nurse and social worker palliative telecare team and quality of life in patients with COPD, heart failure, or interstitial lung disease: the ADAPT randomized clinical trial. JAMA 2024; 331: 212–223.

21.

Australian Institute of Health and Welfare. Palliative care and health service use for people with life-limiting conditions. Canberra: AIHW, 2024.

22.

Jordan

Allsop

ElMokhallalati

, et al. Duration of palliative care before death in international routine practice: a systematic review and meta-analysis. BMC Med 2020; 18: 368.

23.

de Koning

van der Aalst

de Jong

, et al. Reduced lung-cancer mortality with volume CT screening in a randomized trial. N Engl J Med 2020; 382: 503–513.

24.

Steinfort

Kothari

Wallace

, et al. Systematic endoscopic staging of mediastinum to guide radiotherapy planning in patients with locally advanced non-small-cell lung cancer (SEISMIC): an international, multicentre, single-arm, clinical trial. Lancet Respir Med 2024; 12(6): 467–475.

25.

Steinfort

Khor

Manser

, et al. Radial probe endobronchial ultrasound for the diagnosis of peripheral lung cancer: systematic review and meta-analysis. Eur Respir J 2011; 37: 902–910.

26.

Kanabar

Tiwari

Soran

, et al. Impact of PD1 and PDL1 immunotherapy on non-small cell lung cancer outcomes: a systematic review. Thorax 2022; 77: 1163–1174.

27.

Solomon

Mok

Kim

, et al. First-line crizotinib versus chemotherapy in ALK-positive lung cancer. N Engl J Med 2014; 371: 2167–2177.

28.

Yang

Schuler

, et al. Afatinib versus cisplatin-based chemotherapy for EGFR mutation-positive lung adenocarcinoma (LUX-Lung 3 and LUX-Lung 6): analysis of overall survival data from two randomised, phase 3 trials. Lancet Oncol 2015; 16: 141–151.

29.

Cancer Control Continuum, https://ncci.canceraustralia.gov.au/diagnosis/cancer-incidence/cancer-incidence (2022, accessed 06 November 2022).

30.

Barta

Powell

Wisnivesky

JP.

Global epidemiology of lung cancer. Ann Glob Health 2019; 85 20190122.

31.

Lehto

RH.

Symptom burden in lung cancer: management updates. Lung Cancer Manag 2016; 5: 61–78.

32.

Ruparel

Quaife

Dickson

, et al. Prevalence, symptom burden, and underdiagnosis of chronic obstructive pulmonary disease in a lung cancer screening cohort. Ann Am Thorac Soc 2020; 17: 869–878.

33.

WHO. Palliative Care, https://www.who.int/publications/i/item/9241547345 (2007, accessed 8 December 2024).

34.

WHO. Integrating palliative care and symptom relief into primary health care: a WHO guide for planners, implementers and managers, https://www.who.int/publications/i/item/integrating-palliative-care-and-symptom-relief-into-primary-health-care (2018, accessed 8 December 2024).

35.

Skivington

Matthews

Sharon Anne

, et al. A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. BMJ 2021; 374: n2061.

36.

Ferrell

Twaddle

Melnick

, et al. National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines. 4th ed. J Palliat Med 2018; 21: 1684–1689.

37.

Cochrane

Woods

Dunne

, et al. Unmet supportive care needs associated with quality of life for people with lung cancer: a systematic review of the evidence 2007–2020. Eur J Cancer Care 2022; 31: e13525.

38.

Butler

Louie

Sutradhar

, et al. Palliative care among lung cancer patients with and without COPD: a population-based cohort study. J Pain Sympt Manage 2023; 66(6): 611–620.e4.

39.

Joshy

Thandrayen

Koczwara

, et al. Disability, psychological distress and quality of life in relation to cancer diagnosis and cancer type: population-based Australian study of 22,505 cancer survivors and 244,000 people without cancer. BMC Med 2020; 18: 372. 20201201.

40.

Krech

Davis

Walsh

, et al. Symptoms of lung cancer. Palliat Med 1992; 6: 309–315.

41.

Cooley

ME.

Symptoms in adults with lung cancer: a systematic research review. J Pain Sympt Manage 2000; 19: 137–153.

42.

Iyer

Taylor-Stokes

Roughley

Symptom burden and quality of life in advanced non-small cell lung cancer patients in France and Germany. Lung Cancer 2013; 81: 288–293.

43.

Dudgeon

Kristjanson

Sloan

, et al. Dyspnea in cancer patients: prevalence and associated factors. J Pain Symptom Manage 2001; 21: 95–102.

44.

Smith

Hann

Ahles

, et al. Dyspnea, anxiety, body consciousness, and quality of life in patients with lung cancer. J Pain Symptom Manage 2001; 21: 323–329.

45.

Julià-Torras

Cuervo-Pinna

Cabezón-Gutiérrez

, et al. Definition of episodic dyspnea in cancer patients: a Delphi-based consensus among Spanish experts: The INSPIRA Study. J Palliat Med 2019; 22: 413–419.

46.

Molassiotis

Lowe

Blackhall

, et al. A qualitative exploration of a respiratory distress symptom cluster in lung cancer: cough, breathlessness and fatigue. Lung Cancer 2011; 71: 94–102.

47.

Tan

J-Y

Yorke

Harle

, et al. Assessment of breathlessness in lung cancer: psychometric properties of the Dyspnea-12 Questionnaire. J Pain Sympt Manage 2017; 53: 208–215.

48.

Moens

Higginson

Harding

Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review. J Pain Symptom Manage 2014; 48: 660–677.

49.

Weingaertner

Scheve

Gerdes

, 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: 569–581.e561.

50.

Dunger

Higginson

Gysels

, et al. Breathlessness and crises in the context of advanced illness: a comparison between COPD and lung cancer patients. Palliat Support Care 2015; 13: 229–237.

51.

Currow

Chang

Ekström

, et al. Health service utilisation associated with chronic breathlessness: random population sample. ERJ Open Res 2021; 7: 00415–02021.

52.

Spathis

Booth

Moffat

, et al. The Breathing, Thinking, Functioning clinical model: a proposal to facilitate evidence-based breathlessness management in chronic respiratory disease. NPJ Prim Care Respirat Med 2017; 27: 27.

53.

Chamberlain

Garrod

Douiri

, et al. The impact of chronic cough: a cross-sectional European survey. Lung 2015; 193: 401–408.

54.

Khor

Johannson

Marcoux

, et al. Epidemiology and prognostic significance of cough in fibrotic interstitial lung disease. Am J Respir Crit Care Med 2024; 210(8): 1035–1044.

55.

Chambers

Dunn

Occhipinti

, et al. A systematic review of the impact of stigma and nihilism on lung cancer outcomes. BMC Cancer 2012; 12: 184.

56.

Chapple

Ziebland

McPherson

Stigma, shame, and blame experienced by patients with lung cancer: qualitative study. Bmj 2004; 328: 1470. 20040611.

57.

Earnest

MA.

Explaining adherence to supplemental oxygen therapy: the patient’s perspective. J Gen Intern Med 2002; 17: 749–755.

58.

Johnson

Campbell

Bowers

, et al. Understanding the social consequences of chronic obstructive pulmonary disease: the effects of stigma and gender. Proc Am Thorac Soc 2007; 4: 680–682.

59.

Haun

Sklenarova

Villalobos

, et al. Depression, anxiety and disease-related distress in couples affected by advanced lung cancer. Lung Cancer 2014; 86: 274–280.

60.

Sullivan

Forsberg

Ganzini

, et al. Longitudinal changes in depression symptoms and survival among patients with lung cancer: a national cohort assessment. J Clin Oncol 2016; 34: 3984–3991. .

61.

Linden

Vodermaier

Mackenzie

, et al. Anxiety and depression after cancer diagnosis: prevalence rates by cancer type, gender, and age. J Affect Disord 2012; 141: 343-351.

62.

Zabora

BrintzenhofeSzoc

Curbow

, et al. The prevalence of psychological distress by cancer site. Psychooncology 2001; 10: 19–28.

63.

Sullivan

Forsberg

Ganzini

, et al. Depression symptom trends and health domains among lung cancer patients in the CanCORS study. Lung Cancer 2016; 100: 102–109.

64.

Eisner

Blanc

Yelin

, et al. Influence of anxiety on health outcomes in COPD. Thorax 2010; 65: 229–234.

65.

Kunik

Roundy

Veazey

, et al. Surprisingly high prevalence of anxiety and depression in chronic breathing disorders. Chest 2005; 127: 1205–1211.

66.

Hanania

Müllerova

Locantore

, et al. Determinants of depression in the ECLIPSE chronic obstructive pulmonary disease cohort. Am J Respir Crit Care Med 2011; 183: 604–611.

67.

Disler

Green

Luckett

, et al. Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research. J Pain Symptom Manage 2014; 48: 1182–1199.

68.

Ryerson

Berkeley

Carrieri-Kohlman

, et al. Depression and functional status are strongly associated with dyspnea in interstitial lung disease. Chest 2011; 139: 609–616.

69.

Borges

Franceschini

Costa

, et al. Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life. J Bras Pneumol 2017; 43: 18–23.

70.

Kedia

Collins

Dillon

, et al. Psychosocial interventions for informal caregivers of lung cancer patients: a systematic review. Psychooncology 2020; 29: 251–262. 20191124. DOI: 10.1002/pon.5271.

71.

Kavalieratos

Corbelli

Zhang

, et al. Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA 2016; 316: 2104–2114.

72.

Cella

Eton

Fairclough

, et al. What is a clinically meaningful change on the Functional Assessment of Cancer Therapy-Lung (FACT-L) Questionnaire? Results from Eastern Cooperative Oncology Group (ECOG) Study 5592. J Clin Epidemiol 2002; 55: 285–295.

73.

Temel

Greer

Admane

, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non–small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol 2011; 29: 2319–2326.

74.

Greer

Pirl

Jackson

, et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol 2012; 30: 394–400.

75.

Greer

Tramontano

McMahon

, et al. Cost analysis of a randomized trial of early palliative care in patients with metastatic nonsmall-cell lung cancer. J Palliat Med 2016; 19: 842–848.

76.

Temel

Greer

El-Jawahri

, et al. Effects of early integrated palliative care in patients with lung and gi cancer: a randomized clinical trial. J Clin Oncol 2017; 35: 834–841.

77.

Vanbutsele

Pardon

Van Belle

, et al. Effect of early and systematic integration of palliative care in patients with advanced cancer: a randomised controlled trial. Lancet Oncol 2018; 19: 394–404.

78.

Chen

Yang

, et al. Early palliative care in patients with non-small-cell lung cancer: a randomized controlled trial in Southwest China. Am J Hosp Palliat Care 2022; 39: 1304–1311.

79.

Franciosi

Maglietta

Degli Esposti

, et al. Early palliative care and quality of life of advanced cancer patients-a multicenter randomized clinical trial. Ann Palliat Med 2019; 8: 381–389.

80.

Tattersall

Early Contact with palliative care services: a randomized trial in patients with newly detected incurable metastatic cancer. J Palliat Care Med 2014; 4: 1–6.

81.

Temel

Sloan

Zemla

, et al. Multisite, randomized trial of early integrated palliative and oncology care in patients with advanced lung and gastrointestinal cancer: alliance A221303. J Palliat Med 2020; 23: 922–929.

82.

Sullivan

Chan

Lapidus

, et al. Association of early palliative care use with survival and place of death among patients with advanced lung cancer receiving care in the veterans health administration. JAMA Oncology 2019; 5: 1702–1709.

83.

Vranas

Lapidus

Ganzini

, et al. Association of palliative care use and setting with health-care utilization and quality of care at the end of life among patients with advanced lung cancer. Chest 2020; 158: 2667–2674.

84.

Lammers

Slatore

Fromme

, et al. Association of early palliative care with chemotherapy intensity in patients with advanced stage lung cancer: a national cohort study. J Thorac Oncol 2019; 14: 176–183.

85.

Obermeyer

Makar

Abujaber

, et al. Association between the Medicare hospice benefit and health care utilization and costs for patients with poor-prognosis cancer. JAMA 2014; 312: 1888–1896.

86.

Seow

Barbera

McGrail

, et al. Effect of early palliative care on end-of-life health care costs: a population-based, propensity score-matched cohort study. JCO Oncol Pract 2022; 18: e183–e192.

87.

Evans

Mackinnon

Pereira

, et al. Integrating early palliative care into routine practice for patients with cancer: a mixed methods evaluation of the INTEGRATE Project. Psychooncology 2019; 28: 1261–1268.

88.

Krug

Bossert

Stooß

, et al. Consideration of sense of coherence in a structured communication approach with stage IV lung cancer patients and their informal caregivers: a qualitative interview study. Support Care Cancer 2021; 29: 2153–2159.

89.

McDonald

Swami

Hannon

, et al. Impact of early palliative care on caregivers of patients with advanced cancer: cluster randomised trial. Ann Oncol 2017; 28: 163–168.

90.

Farquhar

Prevost

McCrone

, 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.

91.

Rocker

Cook

‘INSPIRED’ approaches to better care for patients with advanced COPD. Clin Invest Med 2013; 36: E114–E120.

92.

Maclagan

Liu

, 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.

93.

Scheerens

Faes

Pype

, 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: 20200521.

94.

Broese

de Heij

Janssen

, et al. Effectiveness and implementation of palliative care interventions for patients with chronic obstructive pulmonary disease: a systematic review. Palliat Med 2021; 35: 486–502.

95.

Gore

Brophy

Greenstone

MA.

How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax 2000; 55: 1000–1006.

96.

Philip

Collins

Smallwood

, et al. Referral criteria to palliative care for patients with respiratory disease: a systematic review. Eur Respir J 2021; 58: 2004307.

97.

Meyer

Kiekens

Selb

, et al. Toward a new definition of rehabilitation for research purposes: a comparative analysis of current definitions. Eur J Phys Rehabil Med 2020; 56: 672–681.

98.

Davis

Temel

Balboni

, et al. A review of the trials which examine early integration of outpatient and home palliative care for patients with serious illnesses. Ann Palliat Med 2015; 4: 99–121.

99.

Clinical practice guidelines for the treatment of lung cancer, https://wiki.cancer.org.au/australiawiki/index.php?oldid=214303 (accessed 13 August 2023).

100.

Cancer Council Victoria and Department of Health Victoria. Optimal care pathway for people with lung cancer. 2nd ed, https://www.cancer.org.au/assets/pdf/lung-cancer-2nd-edition (2021, accessed 8 December 2024).

101.

Blum

Rich

Baldwin

, et al. The European initiative for quality management in lung cancer care. Eur Respir J 2014; 43: 1254–1277.

102.

Hendriks

Kerr

Menis

, et al. Non-oncogene-addicted metastatic non-small-cell lung cancer: ESMO Clinical Practice Guideline for diagnosis, treatment and follow-up. Ann Oncol 2023; 34: 358–376.

103.

Network NCC. Non-Small Cell Lung Cancer Version 2.2023, https://www.nccn.org/professionals/physician_gls/pdf/nscl.pdf (2023, accessed 8 December 2024).

104.

Postmus

Kerr

Oudkerk

, et al. Early and locally advanced non-small-cell lung cancer (NSCLC): ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol 2017; 28: iv1–iv21.

105.

German Guideline Programme in Oncology (German Cancer Society, German Cancer Aid, AWMF). Evidence-based guideline: palliative care for patients with incurable cancer version 1.1, http://leitlinienprogrammonkologie.de/Leitlinien.7.0.html (2015).

106.

Nipp

Temel

Fuh

, et al. Pilot randomized trial of a transdisciplinary geriatric and palliative care intervention for older adults with cancer. J Natl Compr Canc Netw 2020; 18: 591–598.

107.

Zhuang

Wang

, et al. Effect of early palliative care on quality of life in patients with non-small-cell lung cancer. Curr Oncol 2018; 25: e54–e58.

108.

Badr

Smith

Goldstein

, et al. Dyadic psychosocial intervention for advanced lung cancer patients and their family caregivers: results of a randomized pilot trial. Cancer 2015; 121: 150–158.

109.

McCorkle

Jeon

Ercolano

, et al. An advanced practice nurse coordinated multidisciplinary intervention for patients with late-stage cancer: a cluster randomized trial. J Palliat Med 2015; 18: 962–969.

110.

Gade

Venohr

Conner

, et al. Impact of an inpatient palliative care team: a randomized control trial. J Palliat Med 2008; 11: 180-190.

111.

Wagner

Ludman

Aiello Bowles

, et al. Nurse navigators in early cancer care: a randomized, controlled trial. J Clin Oncol 2014; 32: 12–18.

112.

Meyers

Carducci

Loscalzo

, et al. Effects of a problem-solving intervention (COPE) on quality of life for patients with advanced cancer on clinical trials and their caregivers: simultaneous care educational intervention (SCEI): linking palliation and clinical trials. J Palliat Med 2011; 14: 465–473.

113.

Groenvold

Petersen

Damkier

, et al. Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care trial. Palliat Med 2017; 31: 814–824.

114.

Pantilat

O'Riordan

Dibble

, et al. Hospital-based palliative medicine consultation: a randomized controlled trial. Arch Intern Med 2010; 170: 2038–2040.

115.

Steinhauser

Alexander

Byock

, et al. Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial. J Palliat Med 2008; 11: 1234–1240.

116.

Smirnova

Lange

Glickman

, et al. Criteria for enrollment of patients with COPD in palliative care trials: a systematic review. J Pain Symptom Manage 2024; 67: e891–e905. 20240126.

117.

Ferrell

Sun

Hurria

, et al. Interdisciplinary palliative care for patients with lung cancer. J Pain Symptom Manage 2015; 50: 758–767.

118.

Philip

Crawford

Brand

, et al. A conceptual model: redesigning how we provide palliative care for patients with chronic obstructive pulmonary disease. Palliat Support Care 2018; 16: 452–460.

119.

Sullivan

Iyer

Reinke

LF.

Collaborative primary palliative care in serious illness: a pragmatic path forward. Ann Am Thorac Soc 2022; 20: 358–360.

120.

Kamal

Wolf

Troy

, et al. Policy changes key to promoting sustainability and growth of the specialty palliative care workforce. Health Aff (Millwood) 2019; 38: 910–918.

121.

Hui

Bruera

Models of palliative care delivery for patients with cancer. J Clin Oncol 2020; 38: 852–865.

122.

Levy

Scherer

Zikmund-Fisher

, et al. Prevalence of and factors associated with patient nondisclosure of medically relevant information to clinicians. JAMA Network Open 2018; 1: e185293–e185293.

123.

Pakhomov

Jacobsen

Chute

, et al. Agreement between patient-reported symptoms and their documentation in the medical record. Am J Manag Care 2008; 14: 530–539.

124.

Wen

Gustafson

DH.

Needs assessment for cancer patients and their families. Health Qual Life Outcomes 2004; 2: 11. 20040226.

125.

Gardener

Ewing

Deaton

, et al. Understanding how the support needs approach for patients (SNAP) enables identification, expression and discussion of patient support needs: a qualitative study. Chronic Illn 2022; 18: 911–926.

126.

Johnson

Jamali

Ross

, et al. Psychometric validation of the needs assessment tool: progressive disease in interstitial lung disease. Thorax 2018; 73: 880.

127.

Rodin

Swami

Pope

, et al. Impact of early palliative care according to baseline symptom severity: secondary analysis of a cluster-randomized controlled trial in patients with advanced cancer. Cancer Med 2022; 11: 1869–1878.

128.

Temel

Jackson

El-Jawahri

, et al. Stepped palliative care for patients with advanced lung cancer: a randomized clinical trial. JAMA 2024.

129.

EU PAL-COPD, https://eupal-copd.eu/ (2024, accessed 21 June 2024).

130.

Stirling

Smith

Martin

, et al. Victorian Lung Cancer Registry Annual Report. Monash University, Department of Epidemiology and Preventative Medicine 2020; Report No 6, 2020, p. 54.

131.

Feld

Singhi

Phillips

, et al. Palliative care referrals for advanced non-small-cell lung cancer (NSCLC): patient and provider attitudes and practices. Clin Lung Cancer 2019; 20: e291–e298.

132.

Bydder

Nowak

Marion

, et al. The impact of case discussion at a multidisciplinary team meeting on the treatment and survival of patients with inoperable non-small cell lung cancer. Intern Med J 2009; 39: 838–841.

133.

Rosenwax

Spilsbury

McNamara

, et al. A retrospective population based cohort study of access to specialist palliative care in the last year of life: who is still missing out a decade on? BMC Palliative Care 2016; 15: 46.

134.

Smallwood

Ross

Taverner

, et al. A Palliative approach is adopted for many patients dying in hospital with chronic obstructive pulmonary disease. Copd 2018; 15: 503–511. .

135.

Lindell

Liang

Hoffman

, et al. Palliative care and location of death in decedents with idiopathic pulmonary fibrosis. Chest 2015; 147: 423–429.

136.

Bloom

Slaich

Morales

, et al. Low uptake of palliative care for COPD patients within primary care in the UK. Eur Respir J 2018; 51: 20180214.

137.

Smallwood

Mann

Guo

, et al. Patients with fibrotic interstitial lung disease receive supportive and palliative care just prior to death. Am J Hosp Palliat Med 2020; 38: 154–160.

138.

Sullivan

Vranas

Delorit

, et al. Relationships among clinicians are crucial to successful palliative care integration: a qualitative study in lung cancer. Future Oncol 2023; 19: 245–257.

139.

Kim

Atkins

Wilson

AM.

Barriers to specialist palliative care in interstitial lung disease: a systematic review. BMJ Support Palliat Care 2019; 9: 130.

140.

Halpin

DMG

. Palliative care for people with COPD: effective but underused. Eur Respir J 2018; 51: 1702645.

141.

Hui

Elsayem

De La Cruz

, et al. Availability and integration of palliative care at US Cancer centers. JAMA 2010; 303: 1054–1061.

142.

Kamal

Bull

Swetz

, et al. Future of the palliative care workforce: preview to an impending crisis. Am J Med 2017; 130: 113–114.

143.

Lupu

Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage 2010; 40: 899–911.

144.

Quill

Abernethy

AP.

Generalist plus Specialist Palliative Care – Creating a More Sustainable Model. N Engl J Med 2013; 368: 1173–1175.

145.

Ernecoff

Check

Bannon

, et al. Comparing specialty and primary palliative care interventions: analysis of a systematic review. J Palliat Med 2020; 23: 389–396.

146.

Reinke

Tartaglione

Ruedebusch

, et al. Nurse-led, telephone-based primary palliative care intervention for patients with lung cancer: domains of quality care. J Hospice Palliat Nurs 2024; 26: E91.

147.

Alberg

Samet

JM.

Epidemiology of lung cancer. Chest 2003; 123: 21S–49S.

148.

Meera

Manali

IP.

The evolving landscape of sex-based differences in lung cancer: a distinct disease in women. Eur Respir Rev 2022; 31: 210100.

149.

Moore

Antoni

Colquhoun

, et al. Cancer incidence in indigenous people in Australia, New Zealand, Canada, and the USA: a comparative population-based study. Lancet Oncol 2015; 16: 1483–1492.

150.

Levinsen

AKG

Kjaer

Thygesen

, et al. Social inequality in cancer survivorship: educational differences in health-related quality of life among 27,857 cancer survivors in Denmark. Cancer Med 2023; 12: 20150–20162.

151.

Abbas

Madison Hyer

Pawlik

TM.

Race/Ethnicity and county-level social vulnerability impact hospice utilization among patients undergoing cancer surgery. Ann Surg Oncol 2021; 28: 1918–1926.

152.

Qureshi

Boily

Boulanger

, et al. Inequalities in survival and care across social determinants of health in a cohort of advanced lung cancer patients in Quebec (Canada): a high-resolution population-level analysis. Cancer Med 2023; 12: 12683–12704.

153.

Chen

Breithaupt

Muhajarine

Occurrence of chronic obstructive pulmonary disease among Canadians and sex-related risk factors. J Clin Epidemiol 2000; 53: 755–761.

154.

Montnémery

Bengtsson

Elliot

, et al. Prevalence of obstructive lung diseases and respiratory symptoms in relation to living environment and socio-economic group. Respir Med 2001; 95: 744–752.

155.

Reilly

Duan

, et al. Risk factors for chronic obstructive pulmonary disease mortality in Chinese adults. Am J Epidemiol 2008; 167: 998–1004.

156.

Burney

Jithoo

Kato

, et al. Chronic obstructive pulmonary disease mortality and prevalence: the associations with smoking and poverty – a BOLD analysis. Thorax 2014; 69: 465–473.

157.

Pleasants

Riley

Mannino

DM.

Defining and targeting health disparities in chronic obstructive pulmonary disease. Int J Chron Obstruct Pulmon Dis 2016; 11: 2475–2496.

158.

Pascoe

Philip

, et al. Social determinants of advanced chronic respiratory interventions: a scoping review. Eur Respir Rev 2023; 32: 230068.

159.

Gardner

Doherty

Bates

, et al. Racial and ethnic disparities in palliative care: a systematic scoping review. Fam Soc 2018; 99: 301–316.

160.

Allende

Turcott

Verástegui

, et al. Early Incorporation to palliative care (EPC) in patients with advanced non-small cell lung cancer: the PACO randomized clinical trial. Oncologist 2024; 29(10): e1373–e1385. .

161.

Deodhar

Noronha

Muckaden

, et al. A study to assess the feasibility of introducing early palliative care in ambulatory patients with advanced lung cancer. Ind J Palliat Care 2017; 23: 261–67.

162.

Wang

Zhang

Huang

, et al. Palliative care for cancer patients in asia: challenges and countermeasures. Oncol Rev 2023; 17: 11866.

163.

Feng

Barriers in palliative care in China. Lancet 2016; 387: 1272.

164.

Sung

Patel

Djalalov

, et al. Evolution of symptom burden of advanced lung cancer over a decade. Clin Lung Cancer 2017; 18: 274–280.e276.

165.

Rajapakse

An update on survivorship issues in lung cancer patients. World J Oncol 2021; 12: 45–49.

166.

Sarna

Padilla

Holmes

, et al. Quality of life of long-term survivors of non-small-cell lung cancer. J Clin Oncol 2002; 20: 2920–2929.

167.

Laidsaar-Powell

Butow

Brown

, et al. Application of a revised model for coping with advanced cancer to qualitatively explore lung cancer survivors’ experiences of ongoing physical effects, novel treatments, uncertainty, and coping. J Cancer Surv 2024; 18(6): 1754–1770.

168.

Petrillo

Traeger

Sommer

, et al. Experience and supportive care needs of metastatic lung cancer survivors living with uncertainty: a brief qualitative report. J Cancer Surviv 2021; 15: 386–391.

169.

Keshava

Tan

Dycoco

, et al. Long-term assessment of efficacy with a novel Thoracic Survivorship Program for patients with lung cancer. J Thorac Cardiovasc Surg 2022; 163: 1645-1653.e1644.

170.

Graeber

Mall

MA.

The future of cystic fibrosis treatment: from disease mechanisms to novel therapeutic approaches. Lancet 2023; 402: 1185–1198.

171.

Ortega

Liu

Pavord

, et al. Mepolizumab treatment in patients with severe eosinophilic asthma. N Engl J Med 2014; 371: 1198–1207.

172.

King

Jr. Bradford

Castro-Bernardini

, et al. A phase 3 trial of pirfenidone in patients with idiopathic pulmonary fibrosis. N Engl J Med 2014; 370: 2083–2092.

173.

Jacques

Anthony

Lise

, et al. Pulmonary complications of immune checkpoint inhibitors in patients with nonsmall cell lung cancer. Eur Respir Rev 2019; 28: 190058.

174.

Hsu

Murray

Psoter

, et al. Clinical features, survival, and burden of toxicities in survivors more than one year after lung cancer immunotherapy. Oncologist 2022; 27: 971–981.

175.

Bauman

Piotrowska

Muzikansky

, et al. End-of-life care in patients with metastatic lung cancer harboring epidermal growth factor receptor mutations. J Palliat Med 2016; 19: 1316–1319.

176.

Petrillo

El-Jawahri

Nipp

, et al. Performance status and end-of-life care among adults with non-small cell lung cancer receiving immune checkpoint inhibitors. Cancer 2020; 126: 2288–2295.

177.

Petrillo

El-Jawahri

Gallagher

, et al. Patient-reported and end-of-life outcomes among adults with lung cancer receiving targeted therapy in a clinical trial of early integrated palliative care: a secondary analysis. J Pain Sympt Managem 2021; 62: e65–e74. .

178.

Greer

Trotter

Jackson

, et al. Comparative effectiveness trial of early palliative care delivered via telehealth versus in person among patients with advanced lung cancer. J Clin Oncol 2024; 42: LBA3–LBA3.

179.

Schuler

King

Matsveru

, et al. Wearable-triggered ecological momentary assessments are feasible in people with advanced cancer and their family caregivers: feasibility study from an outpatient palliative care clinic at a cancer center. J Palliat Med 2023; 26: 980–985.

180.

Benze

Nauck

Alt-Epping

, et al. PROutine: a feasibility study assessing surveillance of electronic patient reported outcomes and adherence via smartphone app in advanced cancer. Ann Palliat Med 2019; 8: 104–111.

181.

Saeidzadeh

Kamalumpundi

Chi

, et al. Web and mobile-based symptom management interventions for physical symptoms of people with advanced cancer: a systematic review and meta-analysis. Palliat Med 2021; 35: 1020–1038.

182.

Chua

Zachariah

Dale

, et al. Early integrated telehealth versus in-person palliative care for patients with advanced lung cancer: a study protocol. J Palliat Med 2019; 22: 7–19.

183.

Waldman

Centracchio

Jacobs

, et al. Study protocol for a randomized trial of a supportive care mobile application to improve symptoms, coping, and quality of life in patients with advanced non-small cell lung cancer. Front Psychol 2023; 14: 1184482. 20230622.

184.

Golden

Disher

Dieckmann

, et al. Show me the roads and give me a road map: development of a patient conversation tool to improve lung cancer treatment decision-making. PEC Innov 2022; 1: 100094.

185.

Post

Heuer

Kamal

, et al. Study protocol for a randomised trial evaluating the non-inferiority of stepped palliative care versus early integrated palliative care for patients with advanced lung cancer. BMJ Open 2022; 12: e057591.

186.

Smallwood

Pascoe

Vogrin

, 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.

187.

Smallwood

Primary Breathe Australia, https://www.primarybreathe.com.au/ (2024, accessed 21 June 2024).

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

Abstract

Keywords

Introduction

Palliative care

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

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

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

Needs-based initiation of palliative care

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

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

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

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

Conclusion

Footnotes

Acknowledgements

Declarations

ORCID iD

References