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Available online 16 February 2026

Consensus Document on the Multidisciplinary Management of Advanced-Stage Respiratory Diseases

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Javier de Miguel-Díeza, Manuel Castillo-Padrósb, Juan Marco Figueira-Gonçalvesc,
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juanmarcofigueira@gmail.com

Corresponding author.
, Rodrigo Torres-Castrod, Daniel Gainza-Mirandae, Rafael Golpef, Miguel Ángel Cuervo-Pinnag, Raquel Pérez-Rojoh, Jesús González-Barboteoi, Francisco Javier Callejas-Gonzálezj, Claudio Calvo-Espinósk, María Teresa Río-Ramírezl, Mª Ángeles Olalla-Gallom, Miren Begoñe Salinas-Lasan, Teresa Salcedo-Períso
a Servicio de Neumología, Hospital General Universitario Gregorio Marañón, Instituto de Investigación Sanitaria Gregorio Marañón (IiSGM), Facultad de Medicina, Universidad Complutense de Madrid, Madrid, Spain
b Unidad de Cuidados Paliativos, Complejo Hospitalario Universitario Nuestra Señora de Candelaria, Tenerife, Spain
c Servicio de Neumología, Complejo Hospitalario Universitario Nuestra Señora de Candelaria, Tenerife, Spain
d Departamento de Kinesiología, Facultad de Medicina, Universidad de Chile, Santiago, Chile
e Unidad de Cuidados Paliativos, Hospital Universitario Príncipe de Asturias, Madrid, Spain
f Servicio de Neumología, Hospital Universitario Lucus Augusti, Lugo, Spain
g Equipo de Cuidados Paliativos, Hospital Universitario de Badajoz, Badajoz, Spain
h Servicio de Neumología, Hospital Universitario 12 de Octubre, Madrid, Spain
i Servicio de Cuidados Paliativos, Grupo de Investigación y Conocimiento en Cuidados Paliativos (GRICOPAL), Instituto Catalán de Oncología-L’Hospitalet, Barcelona, Spain
j Servicio de Neumología, Complejo Hospitalario Universitario de Albacete, Albacete, Spain
k Unidad de Cuidados Paliativos, Fundación Rioja Salud, La Rioja, Spain
l Servicio de Neumología, Hospital Universitario de Getafe, Universidad Europea de Madrid, Madrid, Spain
m Equipo de Soporte de Atención Domiciliaria, Gerencia de Atención Primaria de Burgos, SACYL, Burgos, Spain
n Servicio de Neumología, Hospital Universitario Galdakao-Usansolo, Galdakao, Spain
o Unidad de Cuidados Paliativos, Hospital General Universitario Ciudad Real, Ciudad Real, Spain
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Abstract

Advanced respiratory diseases, particularly chronic obstructive pulmonary disease (COPD) and interstitial lung diseases (ILD), constitute an increasing challenge for healthcare systems due to their high prevalence, substantial symptom burden, and significant resource use. This consensus document, developed jointly by the Spanish Society of Pulmonology and Thoracic Surgery (SEPAR) and the Spanish Society of Palliative Care (SECPAL), provides recommendations for a multidisciplinary, integrated model of care.

Using the SIGN methodology and a systematic literature review, a multidisciplinary panel developed 70 evidence-based recommendations addressing key domains: identification of patients with palliative care needs; management of respiratory symptoms; strategies to improve quality of life; communication and shared decision-making; caregiver support; and coordination across care settings.

A needs-based approach, rather than reliance on prognosis alone, is recommended to facilitate earlier recognition of patients with advanced COPD and ILD and to enable the timely integration of palliative care alongside disease-directed therapies. Adoption of these recommendations is expected to improve quality of life, reduce symptom burden and suffering, and optimize care for patients with advanced respiratory diseases.

Keywords:
COPD
Interstitial lung diseases
Palliative care
Terminal care
Symptom management
Breathlessness
Dyspnoea
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Epidemiology, patient identification, and methodology: SEPAR–SECPAL collaborationEpidemiology and disease burden

Advanced respiratory diseases, particularly chronic obstructive pulmonary disease (COPD) and diffuse interstitial lung diseases (ILDs), represent a growing challenge for contemporary healthcare systems. Over recent decades, their prevalence has increased steadily, driven by population ageing and the persistence of harmful environmental exposures. In Spain, the prevalence of COPD in adults aged over 40 years reaches 11.8%, a figure comparable to that reported in other European countries [1,2]. In the case of ILDs, although recent data remain limited, a recent review showed that the global incidence of idiopathic pulmonary fibrosis (IPF) is 5.8 per 100,000 persons (95% CI: 4.8–6.8), with relevant regional variations: 4.4 in Asia, 5.1 in Europe, and 9.0 in North America. Similarly, the estimated global prevalence was 17.7 per 100,000 population (95% CI: 14.0–21.5), being 14.8 in Asia, 14.6 in Europe, and 27.2 in North America [3].

The clinical management of these diseases entails a substantial healthcare and economic burden, owing to recurrent hospitalizations, frequent emergency department visits, and the intensive use of diagnostic and therapeutic resources. In this context, integrated care models have been shown to reduce healthcare costs by improving coordination across levels of care and decreasing readmission rates in this particularly vulnerable population [4]. Likewise, the implementation of structured follow-up strategies and timely referral protocols promotes more efficient and sustainable care.

The hallmark symptoms of advanced respiratory diseases—primarily dyspnoea, fatigue, and pain—have a significant impact on quality of life, limiting patients’ functional capacity, autonomy, and emotional well-being. Effective management requires the combination of pharmacological and non-pharmacological interventions within a model of continuous, patient-centred clinical communication that facilitates dynamic adaptation of treatment to patients’ changing needs [5,6].

The impact of these conditions also extends to informal caregivers, who frequently experience high levels of physical, emotional, and economic burden. Available evidence supports the need to incorporate formal support strategies, including health education, psychological interventions, and social assistance, aimed at enhancing caregiver resilience and fostering a safe and sustainable caregiving environment [7,8].

Moreover, the increasing use of complex technologies such as non-invasive mechanical ventilation (NIMV), high-flow nasal cannula (HFNC) therapy, or lung transplantation raises questions regarding their impact on prognosis and quality of life. Despite their potential benefits, it is essential to integrate these interventions with strategies focused on symptom relief and psychosocial support. Recent literature highlights that a holistic, individualized, and patient-centred approach improves clinical outcomes, reduces suffering, and preserves dignity in advanced stages of disease [9,10].

Taken together, these elements underscore the need for care strategies that combine interventions aimed at prolonging survival with those focused on improving comfort, quality of life, and overall patient well-being, including early assessment by specialized palliative care teams [11].

Patient identification

With regard to COPD, the definition of advanced disease has historically been heterogeneous. Philip et al. [12] proposed criteria based on a forced expiratory volume in one second (FEV1)<30%, severe dyspnoea, impaired quality of life (CAT), or frequent use of healthcare resources; however, their isolated application may lead to misclassification, as symptoms such as dyspnoea, functional limitation, or hospital admissions may be influenced by comorbidities or other factors not directly attributable to COPD. Other proposals have incorporated severe functional limitation, advanced age, multimorbidity, and systemic complications as key elements in identifying the terminal phase [13,14].

A recent national consensus [15] has established more operational criteria. In that document, advanced COPD was defined as the presence of at least severe chronic airflow obstruction (FEV1<50%) together with two or more of the following elements: (1) chronic respiratory failure; (2) dyspnoea assessed by an mMRC grade of 3–4; and (3) significant limitation in basic activities of daily living. Exacerbations and comorbidities were not included due to their variability and the complexity of attribution, nor were tests such as the 6-minute walk test (6MWT) or diffusing capacity of the lung for carbon monoxide (DLCO), for reasons of clinical applicability. These criteria allow a practical and consistent characterization across levels of care and enable identification of a group of patients with reduced short- to medium-term survival [16].

On this basis, two transitions towards palliative care (PC) can be distinguished. The first occurs when advanced disease is present with unmet needs despite optimized treatment [17]. The second corresponds to a situation of terminal illness, when disease progression is irreversible and the focus of care should be directed primarily towards symptom control, emotional support, and preservation of patient dignity (Table 1).

Table 1.

Summary of recommendations.

Recommendation  Level of consensus 
Management of respiratory symptoms in advanced chronic respiratory diseases
1. In patients with advanced COPD or ILD, optimization of control of the respiratory disease and systematic treatment of comorbidities that amplify dyspnoea is recommended as a first step. Level of evidence 4; strength of recommendation D.  Strong consensus (100%). 
2. In patients with advanced COPD, continued use of long-acting bronchodilators is recommended, and in cases of severe dyspnoea, LABA+LAMA combination therapy, with periodic review of inhaler technique. Level of evidence 1+; strength of recommendation A.  Strong consensus (100%). 
3. Routine use of bronchodilators in ILD is not recommended, except when an obstructive component or documented bronchospasm is present. Level of evidence 4; strength of recommendation D.  Strong consensus (100%). 
4. Systemic corticosteroids are not recommended for the chronic treatment of dyspnoea in patients with non-exacerbated COPD or ILD, except in highly selected cases and under close monitoring. Level of evidence 3; strength of recommendation C.  Strong consensus (95%). 
5. In patients with advanced COPD or ILD and refractory dyspnoea despite optimal disease-directed treatment and non-pharmacological interventions, the use of oral or parenteral opioids may be considered for dyspnoea control, following an informed discussion with the patient about benefits and uncertainties. Level of evidence 1+; strength of recommendation B.  Strong consensus (95%) 
6. In opioid-naïve patients, initiation with low doses of morphine is recommended (e.g., 5–10mg/12h sustained-release morphine [SRM] or 5mg/4h immediate-release morphine [IRM] orally, or 10mg/day parenterally), with gradual dose increases of 30–50% according to response and tolerance. Level of evidence 3; strength of recommendation C.  Strong consensus (95%). 
7. In patients already receiving opioids for other indications, a 20–50% increase in the daily dose is recommended, assessing clinical response. In COPD, an indicative threshold of 30mg/day of oral morphine or equivalent is considered reasonable, beyond which, in the absence of improvement, the patient may be considered a non-responder. Level of evidence 3; strength of recommendation C.  Strong consensus (90%). 
8. Rapid-onset fentanyl (oral transmucosal, intranasal, or sublingual) may be considered for episodic or exertional dyspnoea in selected patients, particularly when morphine titration is not feasible or ineffective. Level of evidence 2+; strength of recommendation C.  Consensus (86%). 
9. Routine use of benzodiazepines as first-line treatment for dyspnoea is not recommended; their use should be reserved for patients with associated moderate to severe anxiety or respiratory panic attacks, and always in combination with other measures. Level of evidence 1−; strength of recommendation C.  Strong consensus (100%). 
10. In patients with incomplete response to opioids, the addition of short-acting benzodiazepines (e.g., lorazepam or midazolam) or antipsychotics such as chlorpromazine or levomepromazine may be considered, depending on the clinical profile and treatment goals. Level of evidence 3; strength of recommendation D.  Consensus (86%). 
11. Systematic incorporation of non-pharmacological interventions based on the BTF model is recommended for the management of dyspnoea in advanced COPD and ILD, including education, breathing techniques, cognitive–behavioural approaches, and pulmonary rehabilitation when feasible. Level of evidence 2+; strength of recommendation C.  Strong consensus (100%). 
12. Oxygen therapy should be reserved primarily for patients with severe hypoxaemia, titrating flow to maintain saturations above 90%; in normoxaemic patients, it should only be continued if a short therapeutic trial demonstrates clear symptomatic improvement. Level of evidence 1+; strength of recommendation A.  Strong consensus (90%). 
13. HFNC oxygen therapy may be considered as a therapeutic option in hospital-based palliative care for patients with respiratory failure and severe dyspnoea without indication for intubation, always taking into account patient goals and preferences. Level of evidence 2+; strength of recommendation C.  Strong consensus (90%). 
14. NIV may be used palliatively in patients with advanced chronic respiratory disease if it provides significant relief of dyspnoea and improvement in quality of life, following a clear discussion of goals, treatment limits, and the possibility of failure. Level of evidence 2+; strength of recommendation C.  Strong consensus (100%) 
15. Respiratory rehabilitation should be part of palliative care programmes whenever the patient has sufficient physical capacity to participate, with intensity adapted to the individual clinical situation. Level of evidence 2+; strength of recommendation B.  Strong consensus (95%) 
16. In patients who are unable to participate in formal exercise programmes, neuromuscular electrical stimulation may be considered, as well as simple interventions such as the use of a handheld fan or folding fan and pursed-lip breathing techniques to relieve dyspnoea. Level of evidence 3; strength of recommendation D.  Majority agreement (71%). 
17. A systematic evaluation of potentially reversible causes of cough should always be performed, and its impact should be documented using validated tools such as the Leicester Cough Questionnaire. Level of evidence 3; strength of recommendation D.  Consensus (76%). 
18. Non-pharmacological interventions such as adequate hydration, respiratory physiotherapy, and avoidance of irritants should be used in all patients with cough associated with advanced COPD or ILD. Level of evidence 3; strength of recommendation D.  Consensus (86%). 
19. In refractory cough, speech and language therapy may be considered, with the caveat that the available evidence is limited. Level of evidence 3; strength of recommendation D.  Majority agreement (67%). 
20. Mucolytics (N-acetylcysteine, carbocisteine) should be considered in patients with chronic productive cough associated with COPD or non-obstructive chronic bronchitis. Level of evidence 2−; strength of recommendation C.  Consensus (71%). 
21. Guaifenesin may be considered as a therapeutic trial in persistent productive cough, with an explanation of its limited evidence base. Level of evidence 3; strength of recommendation D.  No consensus (48%). 
22. In chronic cough refractory to conventional treatment, low-dose SRMS (5–15mg every 12 hours) is recommended, with gradual titration and close monitoring for adverse effects. Level of evidence 1+; strength of recommendation A.  Consensus (86%). 
23. Codeine may be used as an alternative; however, patients should be informed about its limited efficacy and variability in response. Level of evidence 2+; strength of recommendation C.  Strong consensus (90%). 
24. Dextromethorphan may be considered for non-productive cough, with the warning that the evidence demonstrates only modest benefits. Level of evidence 2−; strength of recommendation D.  Consensus (76%). 
25. A therapeutic trial of benzonatate (100–200mg every 8 hours) may be considered in moderate chronic cough unresponsive to other therapies. Level of evidence 3; strength of recommendation D.  No consensus (43%). 
26. Levodropropizine is a reasonable option for chronic non-productive cough, given its efficacy and tolerability. Level of evidence 2−; strength of recommendation C.  Majority agreement (52%). 
27. Gefapixant may be considered only in patients with refractory chronic cough after careful assessment of the risk–benefit balance, and its routine use in palliative care should be avoided due to insufficient evidence. Level of evidence 2+; strength of recommendation C.  Consensus (81%). 
28. Gabapentin should be used in refractory chronic cough when other treatments have failed, starting at low doses and titrating according to response. Level of evidence 1+; strength of recommendation A.  Strong consensus (90%). 
29. Pregabalin is a reasonable alternative with demonstrated efficacy and may be used with progressive titration. Level of evidence 2+; strength of recommendation B.  Majority agreement (62%). 
30. Corticosteroids (inhaled or systemic) should not be used for the purpose of relieving cough in patients with COPD or ILD, except in the presence of asthma or eosinophilic bronchitis. Level of evidence 3; strength of recommendation C.  Consensus (86%). 
31. Ipratropium may be considered in persistent irritative cough. Level of evidence 2−; strength of recommendation C.  Consensus (71%). 
32. Nebulized lidocaine is a last-resort option for refractory cough, with explicit explanation of the risks of aspiration and adverse effects. Level of evidence 3; strength of recommendation D.  Majority agreement (62%). 
Improving quality of life and supportive care
33. Structured psychosocial programmes should be promoted, particularly those integrating education, emotional support, and advance care planning. Level of evidence 2+; strength of recommendation B.  Strong consensus (100%). 
34. Digital self-management platforms should be used as an adjunct in patients with advanced COPD. Level of evidence 2−; strength of recommendation C.  Strong consensus (90%). 
35. Telemonitoring should be applied selectively, given its variable benefits. Level of evidence 2−; strength of recommendation C.  Consensus (86%). 
36. Weekly pulmonary rehabilitation, delivered either in person or via telehealth, should be offered whenever tolerated by the patient. Level of evidence 1+; strength of recommendation A.  Strong consensus (90%). 
37. Cognitive-behavioural techniques should be integrated into pulmonary rehabilitation programmes. Level of evidence 2+; strength of recommendation B.  Strong consensus (100%). 
38. NIMV should be considered as supportive therapy during exercise in patients with very advanced dyspnoea. Level of evidence 2−; strength of recommendation C.  Strong consensus (90%). 
39. Tele-rehabilitation should be considered as an alternative when access to in-person programmes is limited. Level of evidence 2−; strength of recommendation C.  Consensus (86%). 
40. Regular nutritional screening should be performed, with early intervention in cases of muscle mass loss. Level of evidence 2+; strength of recommendation B.  Strong consensus (95%). 
41. Specific supplements (vitamin D, omega-3 fatty acids, antioxidants, and high-quality proteins) should be offered in COPD-associated cachexia. Level of evidence 2+; strength of recommendation B.  Consensus (86%). 
42. Fatigue should be systematically assessed using validated instruments. Level of evidence 3; strength of recommendation D.  Strong consensus (90%). 
43. Pulmonary rehabilitation and progressive exercise should be prescribed as first-line interventions in patients with fatigue. Level of evidence 1+; strength of recommendation A.  Strong consensus (95%). 
44. As part of fatigue management, comorbidities should be treated and pharmacological therapy optimized. Level of evidence 3; strength of recommendation D.  Strong consensus (100%). 
45. Perform structured assessment of anxiety and fear of dyspnoea at each follow-up visit. Evidence 2−; Recommendation C.  Strong consensus (100%). 
46. Offer cognitive-behavioural therapy (CBT) and breathing techniques as first-line non-pharmacological therapies when anxiety or fear of dyspnoea is identified. Evidence 2+; Recommendation B.  Consensus (81%). 
47. When anxiety or fear of dyspnoea is identified, use SSRIs as first-line pharmacological treatment and benzodiazepines only temporarily. Evidence 2+; Recommendation B.  Consensus (67%). 
48. Systematically explore information needs, fears, and expectations of patients and families, including prognosis and exacerbation management. Evidence 2+; Recommendation B.  Strong consensus (100%). 
49. Implement education and self-management programmes focused on exacerbations, warning signs, and available resources. Evidence 2+; Recommendation B.  Strong consensus (100%). 
50. Promote close coordination between primary care, hospital care, and palliative care teams to improve accessibility and continuity. Evidence 3; Recommendation D.  Strong consensus (100%). 
51. Use structured communication strategies (e.g., adapted SPIKES, STOP–ASK–VALIDATE–INFORM–AGREE model) during trigger moments. Evidence 3; Recommendation D.  Strong consensus (95%). 
52. Explicitly provide space for emotional expression, with systematic validation of patient emotions and experiences. Evidence 3; Recommendation D.  Strong consensus (90%). 
53. Offer SCP to patients with advanced COPD and ILD during periods of clinical stability, using trigger moments as opportunities. Evidence 2−; Recommendation C.  Consensus (86%). 
54. Explicitly explore values, fears, preferences regarding place of care, and treatment limits, documenting decisions. Evidence 3; Recommendation D.  Strong consensus (95%). 
55. In ILD, particularly following a diagnosis of IPF, consider early initiation of SCP from early stages or even at diagnosis. Evidence 2−; Recommendation C.  Consensus (86%). 
56. Systematically assess caregiver emotional burden and needs using validated instruments (Zarit, SF-36, CD-RISC, BAI/BDI). Evidence 2+; Recommendation B.  Strong consensus (95%). 
57. Include caregivers in education about the disease, exacerbations, and self-care, both in clinical visits and rehabilitation programmes. Evidence 2+; Recommendation B.  Strong consensus (95%). 
58. Facilitate access to psychological support resources, caregiver groups, and self-care strategies, promoting respite opportunities. Evidence 3; Recommendation D.  Strong consensus (95%). 
Multidisciplinary coordination and integrated care
59. Integrate palliative care early and in parallel with disease-specific treatment in patients with advanced respiratory disease. Evidence 2+; Recommendation B.  Strong consensus (100%). 
60. Ensure an interdisciplinary approach addressing physical, emotional, social, and spiritual dimensions of the patient and caregiving environment. Evidence 3; Recommendation D.  Strong consensus (100%). 
61. Implement shared electronic health records and structured communication channels (regular meetings, teleconsultation) between PC, Pulmonology, and Palliative Care. Evidence 3; Recommendation D.  Strong consensus (100%). 
62. Establish case coordinators (advanced practice nurses or liaison roles) to ensure continuity and coherence of care plans. Evidence 3; Recommendation C.  Strong consensus (100%). 
63. Develop agreed clinical pathways and protocols defining referral criteria, responsibilities, and care flows across settings. Evidence 3; Recommendation D.  Strong consensus (100%). 
64. Develop joint Pulmonology–Palliative Care clinics, preferably involving Primary Care and other professionals, for patients with advanced respiratory disease. Evidence 2−; Recommendation C.  Strong consensus (100%). 
65. Promote home-based palliative care programmes coordinated with Primary Care for patients with advanced COPD who present high frailty or mobility limitations. Evidence 2−; Recommendation C.  Strong consensus (100%). 
66. Integrate palliative care content into respiratory rehabilitation programmes to improve knowledge, acceptance, and early referral to palliative care. Evidence 1−; Recommendation B.  Strong consensus (95%). 
67. Apply screening tools (such as NECPAL) for early identification of patients with palliative care needs in advanced respiratory disease. Evidence 2−; Recommendation C.  Strong consensus (100%). 
68. Implement integrated care pathways with clear referral criteria, multidimensional assessment, and coordinated follow-up across Primary Care, hospital, and Palliative Care. Evidence 3; Recommendation D.  Strong consensus (100%). 
69. Incorporate telemedicine, hospital-at-home services, Pal 24, or INNOPAL-type projects to improve continuity, reduce emergency visits, and prevent avoidable admissions. Evidence 2−; Recommendation C.  Strong consensus (95%). 
70. Use shared minimum clinical data sets to ensure consistency in decision-making across care levels. Evidence 3; Recommendation D.  Strong consensus (95%). 

To facilitate early identification of these patients, multiple prognostic variables have been evaluated, including FEV1<30%, reduced physical activity, walking limitation, severe dyspnoea, low body mass index, or high healthcare utilization, as well as several multidimensional indices such as BODE, BODEx, CODEX, and HADO [15]. However, their ability to predict individual short- and medium-term survival is limited [18]. Consequently, specific tools have been developed, notably the NHPCO criteria [19] and the NECPAL CCOMS-ICO© method [20], which incorporates the “surprise question” (“Would you be surprised if this patient died in the next 12 months?”) together with clinical, functional, and symptom-burden criteria to more reliably identify patients at the end of life or with complex palliative needs.

In light of the variability and complexity of the COPD disease trajectory, an earlier approach focused on symptom burden, functional decline, and quality of life, rather than prognosis alone, is recommended. Referral should be based on specific needs, overcoming the so-called “prognostic paralysis” that hinders timely access to PC [21,22]. Both the American Thoracic Society [10] and the European Respiratory Society [23] emphasize that this approach improves patient-centred care. A Delphi document identified the lack of consensual criteria as the main barrier to referral to PC [24].

Taking the above into account, referral to PC should be considered in patients who meet criteria for advanced COPD. In addition, the presence of other concurrent factors that may reflect unmet needs should be assessed, such as persistent refractory symptoms (dyspnoea, anxiety, pain) despite optimized treatment, frequent emergency department visits without a clear trigger, marked and progressive functional decline, caregiver burden, or a positive “surprise question.” The presence of these factors adds severity to the advanced disease state and supports early referral to PC for symptom management, psychosocial support, and care planning, even when prognosis is not clearly defined.

In the case of ILDs, the absence of formal consensus has led to proposed definitions based on disease progression [25]: (1) worsening respiratory symptoms without an alternative cause; (2) a 5–10% decline in forced vital capacity (FVC) and/or a ≥10% decline in DLCO; and (3) radiological progression of fibrosis. The additional presence of respiratory failure, baseline dyspnoea mMRC 3–4, or frequent emergency department visits/hospitalizations in the context of a defined “ceiling of care” may act as surrogate markers of an advanced stage or terminal phase of the disease [25–27].

Patients with advanced ILD have complex needs that require a comprehensive approach. In advanced stages, symptoms such as dyspnoea and cough can be highly disabling, compounded by a significant emotional burden for both patients and caregivers [11]. Prognostic uncertainty promotes “prognostic paralysis,” delaying conversations about advance care planning and timely referrals to PC, a situation similar to that observed in COPD [21]. Only 10–20% of patients with ILD access PC services due to barriers such as lack of awareness of their benefits, the belief that they should be reserved for the very end of life, or the mistaken perception that they interfere with eligibility for lung transplantation [26,28].

Because ILD is less prevalent than COPD, few validated instruments exist to identify palliative needs. The GAP (Gender, Age, Physiology) index, initially developed for idiopathic pulmonary fibrosis and later adapted to ILD (GAP-ILD), constitutes a useful tool [29]. Based on sex, age, FVC, and DLCO, it stratifies patients into stages I–III, with stage III indicating a worse prognosis. Identifying patients in stage III facilitates planning of interventions focused on symptom relief, psychosocial support, and shared decision-making, thereby helping to guide referral to PC.

As in COPD, identifying patients with advanced ILD requires a needs-based approach combined with disease- and prognosis-related criteria [30,31]. Factors that support referral to PC include progressive fibrotic phenotypes, advanced and irreversible disease, age>70 years, frequent exacerbations, a usual interstitial pneumonia radiological pattern, and high functional dependence. Chronic respiratory failure and pulmonary hypertension also indicate poorer survival. Kalluri et al. [32] propose specific criteria which, combined with GAP-ILD staging, facilitate the identification of patients who may benefit from PC.

In summary, referral to PC should be considered in patients with progressive fibrotic disease, particularly those with chronic respiratory failure, frequent emergency department visits, pulmonary hypertension, or GAP-ILD stage III. As in COPD, the presence of refractory symptoms, functional decline, emotional distress, or unmet psychosocial needs justifies early referral, regardless of the estimated prognosis.

Methodology and collaboration between SEPAR and SECPAL

This document is the result of a strategic collaboration between the Spanish Society of Pulmonology and Thoracic Surgery (SEPAR) and the Spanish Society of Palliative Care (SECPAL), aimed at integrating the respiratory perspective and the palliative care approach in the management of advanced respiratory diseases. The synergy between both societies enables the harmonization of criteria, the updating of clinical practice, and the promotion of a multidisciplinary approach centred on the needs of patients and their caregivers.

For the development of these recommendations, a multidisciplinary panel composed of 15 experts representing both societies applied the SIGN (Scottish Intercollegiate Guidelines Network) methodology [33]. This methodology classifies scientific evidence from level 1++, corresponding to very high-quality clinical trials or systematic reviews, to level 4, based on expert opinion. Evidence levels 1++ and 1+ derive from well-designed experimental studies, whereas levels 2++ and 2+ correspond to observational studies of variable quality, and levels 3–4 reflect non-analytical evidence or consensus-based data. This hierarchy is translated into grades of recommendation A, B, C, and D, where grade A is supported by the strongest evidence (1++ or 1+), grade B by level 2++, grade C by level 2+ or 3, and grade D by limited studies or expert consensus. When sufficient evidence is lacking but clinical practice supports an intervention, Good Practice Points (GPPs) are issued as consensus-based recommendations. Details of the methodological process are provided in Supplementary Material 1.

Through this process, 70 recommendations were established across the following domains: management of respiratory symptoms in advanced chronic respiratory diseases (32 recommendations), improvement of quality of life and supportive care (15 recommendations), communication and family support (11 recommendations), and multidisciplinary coordination and integrated care (12 recommendations). Each recommendation was subsequently voted on using a Likert scale; in addition to the author panel, an external group of seven recognized experts in the field of severe chronic respiratory diseases was invited to participate. “Consensus” was defined as ≥75% of participants scoring 4 or 5 on the Likert scale, with “strong consensus” defined as ≥90%. Scores between 50% and 75% were interpreted as “majority agreement,” while lower values were considered “lack of agreement” [34]. In the expert panel voting, 46 recommendations achieved a consensus level above 90%, 17 achieved agreement between ≥75% and 90%, five scored between 50% and 75%, and two recommendations did not reach consensus and were classified as lacking agreement.

In addition, a systematic literature review was conducted and organized into six sections. Sections 2, 3, 4, and 5 generated recommendations strictly following the SIGN methodology, whereas section 1, of a conceptual nature, was developed through a narrative review. The systematic review was conducted in accordance with the PRISMA guidelines [35]. The search strategy was executed on 30 October 2025 through queries in the PubMed/MEDLINE, EMBASE, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and PsycINFO databases of the American Psychological Association (APA) (Supplementary Material 2). This strategy yielded a total of 3067 records, of which 133 original articles were selected to support the scientific rationale for the recommendations (Fig. 1). In the final phase, the panel was organized into six subgroups according to the clinical specialty of its members, allowing for a more specific and detailed analysis of the available evidence. Based on this collaborative work, the final recommendations were developed and subsequently reviewed and approved by all authors.

Fig. 1.

Study flowchart.

Management of respiratory symptoms in advanced chronic respiratory diseasesTreatment of dyspnoeaOptimization of the underlying disease and comorbidities

The management of dyspnoea in patients with advanced COPD and ILD (Fig. 2) should be undertaken in a sequential manner, starting with optimization of treatment of the underlying respiratory disease and relevant comorbidities (heart failure, pulmonary hypertension, chest wall disorders, anxiety, depression, obesity, anaemia) [36,37]. The coexistence of emphysema and fibrosis may contribute to particularly refractory dyspnoea [38,39].

Fig. 2.

Dyspnoea management in patients with advanced chronic respiratory disease. Abbreviations. HFNC: high-flow nasal cannula. LABA: long-acting β2-adrenergic agonist. LAMA: long-acting muscarinic antagonist. NMES: neuromuscular electrical stimulation. NIV: non-invasive mechanical ventilation.

Recommendation 1. In patients with advanced COPD or ILD, optimization of control of the respiratory disease and systematic treatment of comorbidities that amplify dyspnoea is recommended as a first step. Level of evidence 4; strength of recommendation D. Strong consensus (100%).

Bronchodilators and corticosteroids

In COPD, long-acting bronchodilators constitute the cornerstone of pharmacological treatment. In the presence of severe dyspnoea, combined use of LABA (long-acting β2-adrenergic agonists) and LAMA (long-acting muscarinic antagonists) is recommended [40], ensuring an appropriate inhaler device and regularly reviewing inhalation technique and adherence. Inhaled corticosteroids have no direct effect on dyspnoea, but may reduce exacerbations, particularly in patients with eosinophilic inflammation [2]. Short-acting bronchodilators should be used as rescue medication. In ILD, bronchodilators are not indicated, except in the presence of associated airflow obstruction or transient bronchospasm.

Systemic corticosteroids are indicated in exacerbations of COPD and ILD, but there is no evidence of benefit for stable chronic dyspnoea. Their adverse-effect profile discourages prolonged use in this context, except in highly selected situations [41].

Recommendation 2. In patients with advanced COPD, continued use of long-acting bronchodilators is recommended, and in cases of severe dyspnoea, LABA+LAMA combination therapy, with periodic review of inhaler technique. Level of evidence 1+; strength of recommendation A. Strong consensus (100%).

Recommendation 3. Routine use of bronchodilators in ILD is not recommended, except when an obstructive component or documented bronchospasm is present. Level of evidence 4; strength of recommendation D. Strong consensus (100%).

Recommendation 4. Systemic corticosteroids are not recommended for the chronic treatment of dyspnoea in patients with non-exacerbated COPD or ILD, except in highly selected cases and under close monitoring. Level of evidence 3; strength of recommendation C. Strong consensus (95%).

Opioids

Three systematic reviews with meta-analyses have evaluated the efficacy of oral and parenteral opioids for dyspnoea in patients with advanced disease, providing moderate support for their usefulness [42,43]. However, the ERS clinical practice guideline discourages their routine use, based on evidence rated as very low [44]. These partially discordant findings suggest a clinically relevant benefit in carefully selected patient subgroups. Individual studies show that rescue doses of 25–50% of the baseline opioid dose may improve dyspnoea in terminal patients [45], and that the combination of morphine with midazolam may enhance the effect in certain cases [46]. Previous trials support the use of rapid-onset fentanyl for episodic dyspnoea [47]. Nevertheless, optimal dosing and dose limits for dyspnoea remain poorly defined.

Recommendation 5. In patients with advanced COPD or ILD and refractory dyspnoea despite optimal disease-directed treatment and non-pharmacological interventions, the use of oral or parenteral opioids may be considered for dyspnoea control, following an informed discussion with the patient about benefits and uncertainties. Level of evidence 1+; strength of recommendation B. Strong consensus (95%)

Recommendation 6. In opioid-naïve patients, initiation with low doses of morphine is recommended (e.g., 5–10mg/12h sustained-release morphine [SRM] or 5mg/4h immediate-release morphine [IRM] orally, or 10mg/day parenterally), with gradual dose increases of 30–50% according to response and tolerance. Level of evidence 3; strength of recommendation C. Strong consensus (95%).

Recommendation 7. In patients already receiving opioids for other indications, a 20–50% increase in the daily dose is recommended, assessing clinical response. In COPD, an indicative threshold of 30mg/day of oral morphine or equivalent is considered reasonable, beyond which, in the absence of improvement, the patient may be considered a non-responder. Level of evidence 3; strength of recommendation C. Strong consensus (90%).

Recommendation 8. Rapid-onset fentanyl (oral transmucosal, intranasal, or sublingual) may be considered for episodic or exertional dyspnoea in selected patients, particularly when morphine titration is not feasible or ineffective. Level of evidence 2+; strength of recommendation C. Consensus (86%).

Adjuvant treatments: benzodiazepines and antipsychotics

Routine use of benzodiazepines for dyspnoea is not supported by evidence. A Cochrane review found no consistent benefit for their systematic use [48]. Evidence rather supports their use when dyspnoea is accompanied by severe anxiety or respiratory panic attacks. Chlorpromazine has shown some effect in reducing dyspnoea without compromising ventilation [49].

Recommendation 9. Routine use of benzodiazepines as first-line treatment for dyspnoea is not recommended; their use should be reserved for patients with associated moderate to severe anxiety or respiratory panic attacks, and always in combination with other measures. Level of evidence 1−; strength of recommendation C. Strong consensus (100%).

Recommendation 10. In patients with incomplete response to opioids, the addition of short-acting benzodiazepines (e.g., lorazepam or midazolam) or antipsychotics such as chlorpromazine or levomepromazine may be considered, depending on the clinical profile and treatment goals. Level of evidence 3; strength of recommendation D. Consensus (86%).

Non-pharmacological treatment of dyspnoea

Management of dyspnoea in advanced disease requires integration of non-pharmacological interventions addressing breathing, cognitive–emotional aspects, and physical functioning. The BTF (“Breathing, Thinking, Functioning”) model identifies vicious cycles that perpetuate the symptom and proposes specific interventions for each component [50]. Pulmonary rehabilitation, cognitive-behavioural therapy, breathing techniques (pursed-lip breathing, NIV in selected contexts), and tailored physical training are key elements.

Recommendation 11. Systematic incorporation of non-pharmacological interventions based on the BTF model is recommended for the management of dyspnoea in advanced COPD and ILD, including education, breathing techniques, cognitive–behavioural approaches, and pulmonary rehabilitation when feasible. Level of evidence 2+; strength of recommendation C. Strong consensus (100%).

Oxygen therapy, HFNC, and NIV

Home oxygen therapy as a palliative measure for dyspnoea has shown benefit only in patients with severe hypoxaemia; trials in normoxaemic patients have not demonstrated significant improvements [51,52]. HFNC oxygen therapy is emerging as a promising alternative to conventional oxygen therapy in patients with acute respiratory failure and in hospital-based palliative settings [53–55], although evidence in the home and chronic setting remains limited. Non-invasive ventilation (NIV) has strong evidence in acute exacerbations of COPD with respiratory acidosis [56] and limited but encouraging data in selected palliative contexts [57–59].

Recommendation 12. Oxygen therapy should be reserved primarily for patients with severe hypoxaemia, titrating flow to maintain saturations above 90%; in normoxaemic patients, it should only be continued if a short therapeutic trial demonstrates clear symptomatic improvement. Level of evidence 1+; strength of recommendation A. Strong consensus (90%).

Recommendation 13. HFNC oxygen therapy may be considered as a therapeutic option in hospital-based palliative care for patients with respiratory failure and severe dyspnoea without indication for intubation, always taking into account patient goals and preferences. Level of evidence 2+; strength of recommendation C. Strong consensus (90%).

Recommendation 14. NIV may be used palliatively in patients with advanced chronic respiratory disease if it provides significant relief of dyspnoea and improvement in quality of life, following a clear discussion of goals, treatment limits, and the possibility of failure. Level of evidence 2+; strength of recommendation C. Strong consensus (100%)

Respiratory rehabilitation and other non-pharmacological interventions

Dyspnoea induces inactivity, deconditioning, and muscle weakness, thereby perpetuating a vicious circle. Respiratory rehabilitation has been shown to improve exercise capacity, muscle function, and symptoms in COPD, and it also provides benefits in ILD [60–63]. Other interventions, such as neuromuscular electrical stimulation, directed ventilation with cool air to the face (handheld fan), and simple breathing techniques, may also be useful [64].

Recommendation 15. Respiratory rehabilitation should be part of palliative care programmes whenever the patient has sufficient physical capacity to participate, with intensity adapted to the individual clinical situation. Level of evidence 2+; strength of recommendation B. Strong consensus (95%)

Recommendation 16. In patients who are unable to participate in formal exercise programmes, neuromuscular electrical stimulation may be considered, as well as simple interventions such as the use of a handheld fan or folding fan and pursed-lip breathing techniques to relieve dyspnoea. Level of evidence 3; strength of recommendation D. Majority agreement (71%).

Management of coughMechanisms, impact, and assessment of cough in advanced disease

Cough is a protective mechanism; however, in advanced COPD and ILD it may become persistent, disabling, and significantly impair the quality of life of patients and their caregivers [65,66]. In ILD, inflammation-induced hyperreactivity of the cough reflex at the interstitial level may explain its frequency and severity [67]. Identifying potentially treatable causes is essential, as these frequently coexist (postnasal drip syndrome, gastro-oesophageal reflux disease, asthma, bronchiectasis, smoking, ACE inhibitor use, heart failure).

Recommendation 17. A systematic evaluation of potentially reversible causes of cough should always be performed, and its impact should be documented using validated tools such as the Leicester Cough Questionnaire. Level of evidence 3; strength of recommendation D. Consensus (76%).

Non-pharmacological management of cough

Non-pharmacological approaches are essential, particularly in patients with multiple comorbidities, functional limitations, or poor tolerance to medications. Adequate hydration is key in the presence of productive cough. Respiratory physiotherapy techniques are useful, especially in patients with bronchiectasis. Avoidance of environmental irritants is mandatory. Speech and language therapy has been explored for refractory cough, although the available evidence is limited [68].

Recommendation 18. Non-pharmacological interventions such as adequate hydration, respiratory physiotherapy, and avoidance of irritants should be used in all patients with cough associated with advanced COPD or ILD. Level of evidence 3; strength of recommendation D. Consensus (86%).

Recommendation 19. In refractory cough, speech and language therapy may be considered, with the caveat that the available evidence is limited. Level of evidence 3; strength of recommendation D. Majority agreement (67%).

Pharmacological management of coughMucolytics and expectorants

Mucolytics such as N-acetylcysteine and carbocisteine have shown modest benefits in chronic bronchitis and COPD (Fig. 3), although the level of evidence is limited [69]. Guaifenesin reduces mucus viscosity and may decrease cough reflex sensitivity, although the supporting evidence is low [70].

Fig. 3.

Cough management in patients with advanced chronic respiratory disease.

Recommendation 20. Mucolytics (N-acetylcysteine, carbocisteine) should be considered in patients with chronic productive cough associated with COPD or non-obstructive chronic bronchitis. Level of evidence 2−; strength of recommendation C. Consensus (71%).

Recommendation 21. Guaifenesin may be considered as a therapeutic trial in persistent productive cough, with an explanation of its limited evidence base. Level of evidence 3; strength of recommendation D. No consensus (48%).

Centrally acting opioid antitussives

Morphine is one of the most effective antitussive agents for refractory chronic cough. Clinical trials have demonstrated a significant reduction in cough with sustained-release morphine sulphate (SRMS) at doses of 5–15mg every 12h [71,72]. Despite its widespread use, codeine shows variable efficacy [73].

Recommendation 22. In chronic cough refractory to conventional treatment, low-dose SRMS (5–15mg every 12h) is recommended, with gradual titration and close monitoring for adverse effects. Level of evidence 1+; strength of recommendation A. Consensus (86%).

Recommendation 23. Codeine may be used as an alternative; however, patients should be informed about its limited efficacy and variability in response. Level of evidence 2+; strength of recommendation C. Strong consensus (90%).

Dextromethorphan

Dextromethorphan is one of the most commonly used non-opioid antitussives. A systematic review showed a slight improvement compared with placebo, with low-quality evidence [73].

Recommendation 24. Dextromethorphan may be considered for non-productive cough, with the warning that the evidence demonstrates only modest benefits. Level of evidence 2−; strength of recommendation D. Consensus (76%).

Peripherally acting antitussives

Benzonatate has local anaesthetic properties and acts on stretch receptors of vagal afferent fibres located in the airways, lungs, and pleura. Although the evidence is limited, it may be useful [70]. Levodropropizine has shown good efficacy and lower toxicity than dextromethorphan [74].

Recommendation 25. A therapeutic trial of benzonatate (100–200mg every 8h) may be considered in moderate chronic cough unresponsive to other therapies. Level of evidence 3; strength of recommendation D. No consensus (43%).

Recommendation 26. Levodropropizine is a reasonable option for chronic non-productive cough, given its efficacy and tolerability. Level of evidence 2−; strength of recommendation C. Majority agreement (52%).

P2X3 antagonists

Gefapixant modulates activation of the cough reflex but frequently causes dysgeusia [75]. Its use in palliative care settings has been insufficiently studied.

Recommendation 27. Gefapixant may be considered only in patients with refractory chronic cough after careful assessment of the risk–benefit balance, and its routine use in palliative care should be avoided due to insufficient evidence. Level of evidence 2+; strength of recommendation C. Consensus (81%).

Neuromodulators (gabapentin, pregabalin)

Guidelines from the American College of Chest Physicians recommend neuromodulators for refractory chronic cough [76]. Gabapentin has demonstrated efficacy with gradual titration up to 1800mg/day [77]. Pregabalin may be used at doses up to 300mg/day [78].

Recommendation 28. Gabapentin should be used in refractory chronic cough when other treatments have failed, starting at low doses and titrating according to response. Level of evidence 1+; strength of recommendation A. Strong consensus (90%).

Recommendation 29. Pregabalin is a reasonable alternative with demonstrated efficacy and may be used with progressive titration. Level of evidence 2+; strength of recommendation B. Majority agreement (62%).

Other pharmacological treatments

Inhaled or systemic corticosteroids are not recommended for the treatment of cough in patients with COPD or ILD, except in those with a history of asthma or eosinophilic bronchitis. Ipratropium may be useful in reducing the cough reflex [79]. Nebulized lidocaine may alleviate cough, although its use is limited by dysgeusia and the risk of aspiration [80].

Recommendation 30. Corticosteroids (inhaled or systemic) should not be used for the purpose of relieving cough in patients with COPD or ILD, except in the presence of asthma or eosinophilic bronchitis. Level of evidence 3; strength of recommendation C. Consensus (86%).

Recommendation 31. Ipratropium may be considered in persistent irritative cough. Level of evidence 2−; strength of recommendation C. Consensus (71%).

Recommendation 32. Nebulized lidocaine is a last-resort option for refractory cough, with explicit explanation of the risks of aspiration and adverse effects. Level of evidence 3; strength of recommendation D. Majority agreement (62%).

Improving quality of life and supportive carePsychosocial, nutritional, and rehabilitative interventions that improve quality of life in advanced respiratory diseases

Psychosocial, nutritional, and rehabilitative interventions constitute an essential pillar of the comprehensive management of patients with advanced COPD and ILD. Their impact encompasses physical, emotional, cognitive, and social dimensions, directly influencing quality of life, coping with functional decline, and caregiver well-being.

Psychosocial interventions

Psychosocial care integrates strategies aimed at promoting the emotional well-being of patients and their environment, facilitating adaptation to illness, self-esteem, communication, and social functioning [81]. These interventions can be grouped into home-based healthcare support, promotion of autonomy, physical activity management, and the treatment of psychological comorbidities [82].

Daily telemonitoring has shown mixed results: some studies report reductions in hospital admissions, emergency department visits, and use of non-invasive mechanical ventilation (NIMV) [83], whereas others have observed increased hospitalisations in the intervention group [84]. Conversely, digital self-management platforms that detect exacerbations, monitor treatment adherence, and reinforce psychological well-being may improve quality of life and reduce emergency department visits in advanced COPD [85].

Interdisciplinary palliative care programmes integrating pulmonology and palliative care—combining education, advance care planning, and intensive symptom control—have demonstrated improvements in dyspnoea and increased six-month survival [86,87].

Recommendation 33. Structured psychosocial programmes should be promoted, particularly those integrating education, emotional support, and advance care planning. Level of evidence 2+; strength of recommendation B. Strong consensus (100%).

Recommendation 34. Digital self-management platforms should be used as an adjunct in patients with advanced COPD. Level of evidence 2−; strength of recommendation C. Strong consensus (90%).

Recommendation 35. Telemonitoring should be applied selectively, given its variable benefits. Level of evidence 2−; strength of recommendation C. Consensus (86%).

Pulmonary rehabilitation

Pulmonary rehabilitation has been extensively studied in patients with COPD and idiopathic pulmonary fibrosis (IPF), although data in advanced stages are more limited. Weekly programmes incorporating NIMV and oxygen therapy have shown significant improvements in dyspnoea, functional capacity (measured by the 6-minute walk test), oxygenation, quality of life, and affective symptoms [88–91]. The development of telehealth modalities has extended these benefits to patients with limited access to in-person programmes, with favourable outcomes in exercise capacity and quality of life [92]. Programmes delivered three times per week improve upper limb muscle capacity, although not necessarily quality of life [93]. Psychological interventions integrated into rehabilitation programmes—particularly cognitive-behavioural approaches—reduce anxiety, depression, and dyspnoea [94–97]. Specific mental health training interventions may improve emotional regulation, fatigue, and quality of life for up to six months after completion [98].

Recommendation 36. Weekly pulmonary rehabilitation, delivered either in person or via telehealth, should be offered whenever tolerated by the patient. Level of evidence 1+; strength of recommendation A. Strong consensus (90%).

Recommendation 37. Cognitive-behavioural techniques should be integrated into pulmonary rehabilitation programmes. Level of evidence 2+; strength of recommendation B. Strong consensus (100%).

Recommendation 38. NIMV should be considered as supportive therapy during exercise in patients with very advanced dyspnoea. Level of evidence 2−; strength of recommendation C. Strong consensus (90%).

Recommendation 39. Tele-rehabilitation should be considered as an alternative when access to in-person programmes is limited. Level of evidence 2−; strength of recommendation C. Consensus (86%).

Nutritional interventions

Patients with advanced COPD may develop cachexia and sarcopenia, which exacerbate dyspnoea and functional decline. Supplementation with vitamin D, omega-3 fatty acids, plant-derived antioxidants, and whey proteins has demonstrated improvements in exercise-induced dyspnoea, cardiometabolic parameters, and nutritional status compared with isocaloric supplements [99,100].

Recommendation 40. Regular nutritional screening should be performed, with early intervention in cases of muscle mass loss. Level of evidence 2+; strength of recommendation B. Strong consensus (95%).

Recommendation 41. Specific supplements (vitamin D, omega-3 fatty acids, antioxidants, and high-quality proteins) should be offered in COPD-associated cachexia. Level of evidence 2+; strength of recommendation B. Consensus (86%).

Management of fatigue, anxiety, and fear of dyspnoeaFatigue

Fatigue is one of the most prevalent symptoms in advanced respiratory diseases, affecting up to 95% of patients with IPF or COPD [101–103]. Its aetiology is multifactorial and includes predisposing, precipitating, and perpetuating factors [102]. Fatigue is a major source of social isolation and emotional distress and is associated with anxiety and depression [6]. For this reason, it should be assessed at every clinical visit, with identification of modifiable contributors. The Fatigue Assessment Scale (FAS) is a validated and widely used instrument [104].

Management strategies include: (1) optimization of the underlying disease and review of medications, particularly systemic corticosteroids [103]; (2) interventions aimed at improving sleep quality, including treatment of obstructive sleep apnoea with continuous positive airway pressure (CPAP) when indicated [58]; (3) treatment of endocrine comorbidities such as hypothyroidism [105,106]; (4) implementation of pulmonary rehabilitation and progressive physical training [107–109]; and (5) use of high-flow oxygen therapy, which may improve exercise tolerance in selected cases [110].

Recommendation 42. Fatigue should be systematically assessed using validated instruments. Level of evidence 3; strength of recommendation D. Strong consensus (90%).

Recommendation 43. Pulmonary rehabilitation and progressive exercise should be prescribed as first-line interventions in patients with fatigue. Level of evidence 1+; strength of recommendation A. Strong consensus (95%).

Recommendation 44. As part of fatigue management, comorbidities should be treated and pharmacological therapy optimized. Level of evidence 3; strength of recommendation D. Strong consensus (100%).

Anxiety and fear of dyspnoea

Up to one third of patients experience significant anxiety, which is exacerbated by dyspnoea and may lead to panic, insomnia, and social isolation [111]. Approximately 40% experience panic during each episode of dyspnoea [112], and kinesiophobia may reach up to 93% [113]. Anxiety is associated with poorer functional status, shorter distance walked on the 6-minute walk test (6MWT), and worse quality of life [114]. Its origin is multifactorial and includes physiological mechanisms (hyperventilation), cognitive-behavioural factors, and alterations in brain structures involved in perception and emotional regulation [111,115].

Therefore, anxiety assessment should be integrated into routine clinical history-taking, exploring associated beliefs and fears [116,117].

Management should include selective serotonin reuptake inhibitors (SSRIs) as first-line pharmacological treatment (fluoxetine 5–20mg/day, sertraline 25–50mg/day); trazodone or mirtazapine when insomnia or mixed symptoms are present; and benzodiazepines only on a short-term basis, as a therapeutic bridge. Among non-pharmacological interventions, pulmonary rehabilitation plays a key role, improving anxiety and kinesiophobia [118]; breathing techniques (pursed-lip breathing, diaphragmatic breathing, yoga) are useful as self-management strategies [109]; cognitive-behavioural therapies have demonstrated benefits in anxiety, panic, coping, and dyspnoea [111,119]; and educational programmes for patients and caregivers reduce fear and family conflict [120,121].

Recommendation 45. Perform structured assessment of anxiety and fear of dyspnoea at each follow-up visit. Evidence 2−; Recommendation C. Strong consensus (100%).

Recommendation 46. Offer cognitive-behavioural therapy (CBT) and breathing techniques as first-line non-pharmacological therapies when anxiety or fear of dyspnoea is identified. Evidence 2+; Recommendation B. Consensus (81%).

Recommendation 47. When anxiety or fear of dyspnoea is identified, use SSRIs as first-line pharmacological treatment and benzodiazepines only temporarily. Evidence 2+; Recommendation B. Consensus (67%).

Communication and family supportCommunication in advanced respiratory disease

Patients with advanced COPD and ILD present unpredictable clinical trajectories, high symptom burden, and prognostic complexity, generating specific communication needs for both patients and families [23,122,123]. The ERS guideline highlights psychosocial needs, support in decision-making, and difficulty in prognostic—or even diagnostic—estimation among the criteria for referral to palliative care [23]. Communication thus becomes a central pillar of the palliative approach (Fig. 4).

Fig. 4.

Integrative cycle of communication, education, and planning in advanced chronic obstructive pulmonary disease/interstitial lung disease.

Patients express a desire to receive honest prognostic information and perceive uncertainty in disease trajectory as a barrier to timely integration of a palliative approach [23,123]. Exacerbations are described as “traumatic” events, and particular value is placed on self-management education, early recognition of warning signs, rapid access to crisis resources, and post-exacerbation support [122]. In addition, patients highlight the need for early identification of poor-prognosis trajectories, in which timely referral to palliative care teams is critical [23,122].

Key barriers include stigma associated with the term “palliative care,” often perceived as cancer-related, and limitations imposed by mobility impairment and dyspnoea, which hinder access to specific resources, particularly in the absence of home-based programmes [23,122,123]. Dyspnoea support programmes and interventions targeting Activities of Daily Living (ADLs) have demonstrated functional improvement and are highly valued by patients [87]. The importance of coordination between primary and specialized care is also emphasized, as well as the negative impact of stigmatizing attitudes towards smoking [124].

In ILD, additional issues have been described: (1) discrepancy between preferred and actual place of death, with most deaths occurring in hospital settings [23,125]; (2) specific informational needs (oxygen therapy, signs of progression, prognosis) [23,126]; (3) high emotional burden, including anger [126]; and (4) Advance Care Planning (ACP) programmes have been shown to improve communication quality and are well received by patients [23,126,127].

Recommendation 48. Systematically explore information needs, fears, and expectations of patients and families, including prognosis and exacerbation management. Evidence 2+; Recommendation B. Strong consensus (100%).

Recommendation 49. Implement education and self-management programmes focused on exacerbations, warning signs, and available resources. Evidence 2+; Recommendation B. Strong consensus (100%).

Recommendation 50. Promote close coordination between primary care, hospital care, and palliative care teams to improve accessibility and continuity. Evidence 3; Recommendation D. Strong consensus (100%).

Basic principles of clinical communication

So-called “trigger moments” (disease progression, poor symptom control, hospitalizations, need for ventilation, ILD diagnosis) represent windows of opportunity to initiate deeper conversations about the clinical situation and future decisions [23]. For these scenarios, communication models such as SPIKES [128] have been adapted, and specifically in respiratory disease, the five-step framework proposed by Costa and Arranz and updated by Denizon et al. [129]: (a) STOP (and PRE-STOP): Plan time and setting, announce the content of the visit, and acknowledge one's own emotional state; (b) ASK: What the patient knows and what they wish to know; (c) VALIDATE: Listen to, accept, and legitimize the patient's experience and emotions; (d) INFORM: Use clear, progressive language, avoiding bluntness and employing “warning shots” before delivering bad news; (e) AGREE: Shared decision-making, next steps, and future review.

Recommendation 51. Use structured communication strategies (e.g., adapted SPIKES, STOP–ASK–VALIDATE–INFORM–AGREE model) during trigger moments. Evidence 3; Recommendation D. Strong consensus (95%).

Recommendation 52. Explicitly provide space for emotional expression, with systematic validation of patient emotions and experiences. Evidence 3; Recommendation D. Strong consensus (90%).

Shared Care Planning (SCP)

Shared Care Planning (SCP), or advance decision planning, is considered a core component of palliative care in COPD and ILD [23]. The Spanish Association for Shared Care Planning defines it as a communicative and deliberative process aimed at identifying values, preferences, and expectations, and facilitating present and future shared decisions. In COPD, evidence (although limited) indicates that SCP improves end-of-life communication, therapeutic relationships, and documentation of advance directives, without significant adverse emotional effects [127,130]. In ILD, SCP is additionally associated with a higher likelihood of death at home, more consistent with patient preferences [125,131]. Qualitative analyses highlight that SCP reduces feelings of isolation and increases patient participation in their own care process [131].

There is no single “optimal” time to initiate SCP; however, consensus exists that it should not be started during acute exacerbations, as patients prefer to engage in SCP during periods of clinical stability [23,130]. In COPD, some authors suggest addressing SCP in more advanced stages, when likely clinical scenarios are clearer [130]. In ILD, particularly following a diagnosis of idiopathic pulmonary fibrosis (IPF), earlier initiation—even at diagnosis—is recommended, given its faster and less predictable progression [23,131]. Minimum recommended content includes [126,127,130]: (a) preferred place of care and death; (b) limits of the “ceiling of care” (including NIV, ICU admission, etc.); (c) preferences regarding management of respiratory failure and palliative sedation; (d) preferred routes of drug administration; and (e) designation of a surrogate decision-maker.

Models such as the “e-pal ladder” of the LagunAdvance programme structure SCP into three phases (initial exploration, consolidation/planning, advanced phase) and emphasize integration of patient values and support networks [132].

Recommendation 53. Offer SCP to patients with advanced COPD and ILD during periods of clinical stability, using trigger moments as opportunities. Evidence 2−; Recommendation C. Consensus (86%).

Recommendation 54. Explicitly explore values, fears, preferences regarding place of care, and treatment limits, documenting decisions. Evidence 3; Recommendation D. Strong consensus (95%).

Recommendation 55. In ILD, particularly following a diagnosis of IPF, consider early initiation of SCP from early stages or even at diagnosis. Evidence 2−; Recommendation C. Consensus (86%).

Needs of families and caregivers

Family caregivers fulfil multiple roles: information provision, direct care, promotion of adherence, patient advocacy, and emotional support [133,134]. Their burden is high and is associated with poorer health, increased stress, loss of independence, and relational conflicts [135–137]. High caregiver burden is linked to increased risk of hospitalization and mortality in frail patients [138]. Despite this, systematic detection and structured support for caregivers remain insufficient [58,139–142]. The most frequent needs include: (a) emotional support (anger, guilt, fear, helplessness, stress); (b) clear information about the disease, exacerbations, and available resources; (c) support in managing role changes and family dynamics; (d) respite time and self-care support; and (e) guided access to resources and support groups [58,122,140–143].

Tools such as the Zarit Burden Interview [144–146], SF-36 [144,147], CD-RISC [148], and Beck Anxiety and Depression Inventories [144,149] allow assessment of caregiver burden, quality of life, resilience, and emotional symptoms.

Recommendation 56. Systematically assess caregiver emotional burden and needs using validated instruments (Zarit, SF-36, CD-RISC, BAI/BDI). Evidence 2+; Recommendation B. Strong consensus (95%).

Recommendation 57. Include caregivers in education about the disease, exacerbations, and self-care, both in clinical visits and rehabilitation programmes. Evidence 2+; Recommendation B. Strong consensus (95%).

Recommendation 58. Facilitate access to psychological support resources, caregiver groups, and self-care strategies, promoting respite opportunities. Evidence 3; Recommendation D. Strong consensus (95%).

Multidisciplinary coordination and integrated careImportance of interdisciplinary collaboration

Advanced respiratory diseases (COPD, ILD, and other chronic respiratory conditions) are associated with high symptom burden (dyspnoea, cough, fatigue, anxiety, and depression), unpredictable clinical trajectories, and frequent transitions between care settings. The WHO and the Council of Europe recommend integrating palliative care into health systems to improve symptom control, quality of life, and decision planning [150,151]. However, the European Atlas of Palliative Care shows that implementation in respiratory diseases remains significantly lower than in other areas [152,153].

European scientific societies advocate for integrated models tailored to patient and family needs, initiating palliative care early and in parallel with disease-modifying treatment, rather than restricting it to the terminal phase of life [23,44,154]. This approach requires coordinated contributions from Pulmonology, Palliative Care, Primary Care (PC), Nursing, Physiotherapy, Psychology, Nutrition, Social Work, and other professionals.

Recommendation 59. Integrate palliative care early and in parallel with disease-specific treatment in patients with advanced respiratory disease. Evidence 2+; Recommendation B. Strong consensus (100%).

Recommendation 60. Ensure an interdisciplinary approach addressing physical, emotional, social, and spiritual dimensions of the patient and caregiving environment. Evidence 3; Recommendation D. Strong consensus (100%).

Strategies to promote multidisciplinary collaboration

Effective collaboration relies on several structural strategies: (a) Joint clinics involving Pulmonology, PC, and Palliative Care, useful for managing complex symptoms and developing individualized care plans; (b) Regular multidisciplinary case discussion meetings for shared decision-making; (c) Integrated pulmonary rehabilitation programmes combining physical intervention, symptom management, and psychosocial support; (d) Specialized high-complexity units concentrating coordinated care for highly frail patients.

Additional recommended organizational tools include: (a) Shared electronic health records and remote communication channels; (b) Structured regular meetings with clear objectives and active participation; (c) Joint training sessions and workshops across specialties; (d) Case coordinators (typically advanced practice nurses or social workers) acting as liaisons between care levels; (e) Standardized protocols and clinical pathways defining roles, referral criteria, and key processes [20,152,155].

Recommendation 61. Implement shared electronic health records and structured communication channels (regular meetings, teleconsultation) between PC, Pulmonology, and Palliative Care. Evidence 3; Recommendation D. Strong consensus (100%).

Recommendation 62. Establish case coordinators (advanced practice nurses or liaison roles) to ensure continuity and coherence of care plans. Evidence 3; Recommendation C. Strong consensus (100%).

Recommendation 63. Develop agreed clinical pathways and protocols defining referral criteria, responsibilities, and care flows across settings. Evidence 3; Recommendation D. Strong consensus (100%).

Models of integrated care

Several studies have evaluated integrated models in advanced respiratory diseases:

  • a)

    Integrated Pulmonology–Palliative Care multidisciplinary model: Monthly joint clinic with a multidisciplinary team [156]. This model resulted in a 52.4% reduction in emergency department visits, fewer in-hospital deaths (24.6%), high participation in advance care planning (84.8%), and improved control of dyspnoea and anxiety through non-pharmacological strategies and supervised morphine use (43.3%) [87].

  • b)

    Home-based palliative care in advanced COPD: A pilot trial showing high acceptability (56% enrollment, 64% completion), a trend towards reduced hospitalization and improved perception of care, although without significant changes in quality of life; greater integration with PC and nursing training were highlighted as needs [157].

  • c)

    Early joint Pulmonology–Palliative Care consultation: Review of PC records showed under-referral (only 15.4% of 1232 patients with prognostic indicators were receiving palliative care). Establishment of a multidisciplinary clinic increased referrals, interaction with specialist teams, and advance end-of-life planning [158].

  • d)

    Respiratory rehabilitation with palliative care education: A randomized trial in COPD/ILD patients comparing conventional rehabilitation versus rehabilitation plus palliative care education. The experimental group showed significant improvements in knowledge about palliative care, perceived need for palliative care, willingness for early referral, and caregiver burden [159].

Overall, these studies suggest that integrated models can reduce emergency utilization, improve symptom control, facilitate advance care planning, and optimize resource use [150,156,160].

Recommendation 64. Develop joint Pulmonology–Palliative Care clinics, preferably involving Primary Care and other professionals, for patients with advanced respiratory disease. Evidence 2−; Recommendation C. Strong consensus (100%).

Recommendation 65. Promote home-based palliative care programmes coordinated with Primary Care for patients with advanced COPD who present high frailty or mobility limitations. Evidence 2−; Recommendation C. Strong consensus (100%).

Recommendation 66. Integrate palliative care content into respiratory rehabilitation programmes to improve knowledge, acceptance, and early referral to palliative care. Evidence 1−; Recommendation B. Strong consensus (95%).

Core elements of an integrated care model

An integrated respiratory palliative care model should be flexible, patient-centred, and adaptable to prognosis and local organization (Fig. 5). Its core components include: (1) Accessibility and early identification; (2) Use of palliative needs screening tools (e.g., NECPAL) [20]; (3) Early identification from Primary Care and hospital settings, leveraging recurrent admissions:

  • a)

    Multidimensional assessment: Shared physical, psychological, social, and spiritual evaluation of the patient and caregiving environment by PC, hospital teams, and specialized palliative care teams when required [161].

  • b)

    Integrated care pathway: A structured itinerary including identification, initial assessment and therapeutic goals, care planning (outpatient, home-based, telemedicine), periodic reassessment, coordination across settings, discharge planning, and continuity in the community [162,163].

  • c)

    Care settings and resources: General resources include PC, Pulmonology and Internal Medicine/Geriatrics services, acute hospitals, day hospitals, hospital-at-home services, short-stay units, and medium–long stay facilities [164,165].

  • d)

    Specialized palliative care resources: Hospital and home-based palliative care teams, palliative care units, and hospice-type models [155].

  • e)

    Coordination structures: Telemedicine devices and programmes enhancing continuity and out-of-hours responsiveness [166].

  • f)

    Case managers and complexity care units: Shown to be beneficial in other diseases (e.g., ALS) and transferable to advanced ILD and COPD [167].

  • g)

    Coordination with Social Services: To address dependency and socioeconomic needs [168].

  • h)

    Minimum shared data sets for continuity of care: Defined in consensus tables (diagnosis, stage, NECPAL, clinical summary, care plan, advance decisions, therapeutic agreement), accessible across all care levels [20].

Fig. 5.

Resources for the management of patients with advanced chronic respiratory disease. Abbreviations. HaH: hospital at home. SSU: short-stay unit. PCU: palliative care unit.

Recommendation 67. Apply screening tools (such as NECPAL) for early identification of patients with palliative care needs in advanced respiratory disease. Evidence 2−; Recommendation C. Strong consensus (100%).

Recommendation 68. Implement integrated care pathways with clear referral criteria, multidimensional assessment, and coordinated follow-up across Primary Care, hospital, and Palliative Care. Evidence 3; Recommendation D. Strong consensus (100%).

Recommendation 69. Incorporate telemedicine, hospital-at-home services, Pal 24, or INNOPAL-type projects to improve continuity, reduce emergency visits, and prevent avoidable admissions. Evidence 2−; Recommendation C. Strong consensus (95%).

Recommendation 70. Use shared minimum clinical data sets to ensure consistency in decision-making across care levels. Evidence 3; Recommendation D. Strong consensus (95%).

Author contributions

JMD, MCP, JMFG were the coordinators of the document. All authors contributed equally to its preparation.

Use of artificial intelligence

Artificial intelligence tools were used exclusively to support editing and linguistic refinement of the manuscript. AI tools did not influence the scientific content, data interpretation, or clinical recommendations.

Funding

This manuscript did not receive any funding.

Conflicts of interest

JDMD has no conflicts of interest in relation to this document.

MCP has no conflicts of interest in relation to this document.

JMFG has no conflicts of interest in relation to this document.

RTC has no conflicts of interest in relation to this document.

DGM has no conflicts of interest in relation to this document.

RG has no conflicts of interest in relation to this document.

MACP has no conflicts of interest in relation to this document.

RPR has no conflicts of interest in relation to this document.

JGB has no conflicts of interest in relation to this document.

FJCG has no conflicts of interest in relation to this document.

CCE has no conflicts of interest in relation to this document.

MTRR has no conflicts of interest in relation to this document.

MMAOG has no conflicts of interest in relation to this document.

MBSL has no conflicts of interest in relation to this document.

TSP has no conflicts of interest in relation to this document.

Acknowledgements

We thank Francisco José Caballero Segura, Alberto Fernández Villar, Fernando González Torralba, José Luis López Campos, Marta Marín Oto, Carlota Rodríguez García, and Juan José Soler Cataluña for their work as external reviewers of the recommendations.

Appendix A
Supplementary data

The followings are the supplementary data to this article:

Icono mmc1.doc

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