Skip to main content
NCBI home page
European Clinical Respiratory Journal logoLink to European Clinical Respiratory Journal
. 2025 Jul 8;12(1):2529052. doi: 10.1080/20018525.2025.2529052

Integration of rehabilitation and palliation for people with severe lung disease or heart failure – a scoping review

Kristoffer Marsaa a,b, Stig Molsted c,d, Christian Have Dall d,e,f, Henrik Hansen d,g,h, Lise Nottelmann i, Jette Meelby c, Thomas A Schmidt d,j, Laura Hohwü Thomsen g, Nina Godtfredsen d,g,✉
PMCID: PMC12239239  PMID: 40635970

ABSTRACT

Traditionally, rehabilitation and palliative care are delivered as separate services, where rehabilitation focuses on regaining physical functions and palliative care on symptom relief and existential support. There is growing recognition of the potential benefit in integrating these approaches. This scoping review explores how integration or coordination of rehabilitation and palliative care is described in the literature, with a focus on heart failure, chronic obstructive pulmonary disease, and interstitial lung disease. A systematic search was conducted in MEDLINE, EMBASE, and CINAHL, identifying 20 relevant publications. Six overarching themes emerged: overlapping treatment goals; timing of services; inclusion of advance care planning (ACP); attention to existential and spiritual dimensions; barriers to integration; and the role of informal caregivers. The majority of the included studies were re-views or expert statements, with few interventional studies. Practical implementation remains limited and poorly defined. While guidelines increasingly support integrated care models, significant challenges persist, including lack of conceptual clarity, limited evidence of effect, and unclear roles for caregivers. There is broad consensus that integration could improve quality of life for both patients and caregivers by combining the functional focus of rehabilitation with palliative symptom management and its holistic approach. While publications support this integration, its implementation in clinical practice remains unclear. A key argument for integration is the overlap in treatment goals and the potential synergy between the two approaches. Several studies highlight the opportunity to incorporate end-of-life discussions, such as ACP, into traditional rehabilitation programs. Introducing palliative care principles earlier in rehabilitation may also increase the number of patients receiving appropriate end-of-life care.

KEYWORDS: Rehabilitation, palliation, review

Background

The healthcare systems in high- and middle-income countries are facing significant changes as populations’ age increase and more people live longer with chronic diseases, challenging existing resources and care models [1].

At the time of the first diagnosis, disease-specific treatment is often the primary focus. However, as the illness progresses and/or additional illnesses emerge, priorities and patient values on treatment goals may change [2,3]. For both Heart failure (HF) and Chronic Obstructive Pulmonary Disease (COPD) the number of comorbidities increase with disease severity [4,5]. Treating patients with multimorbidity requires a more person-centered, complexed, and integrated approach compared to managing a single disease [6]. Single-disease and its treatments are often referred to as diagnosis-specific, focusing narrowly on managing a single condition based on standardized protocols. In contrast, the person-centered approach required for multimorbidity is better described emphasizing the individual’s overall health, preferences, and needs rather than addressing isolated diagnoses [7]. This change in approach reflects the complexity of managing coexisting conditions and the importance of tailoring care to the whole person [6].

The same change can occur in rehabilitation. Rehabilitation programs are often diagnosis-specific, designed to target the immediate effects of a newly diagnosed HF or COPD. However, as the disease progresses and multimorbidity develops, rehabilitation may change towards a more comprehensive approach that aims to maintain or improve overall functioning and quality of life, addressing the combined impact of. Additionally, as the multiple conditions progress there is obvious overlap, integration, and coordination between rehabilitation and palliative care.

Rehabilitation focuses on supporting the patient’s independence and enablement, while palliative care, conceptualized by pioneers like Cicely Saunders, emphasizes relief of symptoms and other sources of suffering [8]. In the center of the palliative care services is the ‘total suffering model’ which describes that suffering must be understood from four dimensions that are mutually dependent and influence each other, namely, physical, psychological, social, and existential dimensions [9–13]. Rehabilitation is grounded in the bio-psycho-social model of the International Classification of Functioning (ICF) where not only mechanical but also contextual factors relating to the individual’s personal circumstances are a factor [14]. Despite this fact, the classical rehabilitation literature rarely includes the existential dimension in its definition [8,15].

Palliative care has for many years been viewed as treatment for the dying. The 2002 WHO definition of palliative care uses the word ‘life threatening’ as trigger for palliative care [12]. There is no consensus of what a life-threatening illness is. In 2014 serious illness was defined as [16];

  1. a serious illness is one that carries a high risk of death over the course of a year, but cure may remain a possibility.

  2. a serious illness has a strong negative impact on one’s quality of life (QOL) and functioning in life roles, independent of its impact on mortality.

  3. a serious illness is highly burdensome to a person and his or her family [16].

Serious illness as a criterion for initiating palliative care has gained increasing recognition in international guideline [11,17–19].

This enables earlier referral to palliative care and requires discussion of appropriate interventions for individuals facing prolonged suffering and functional impairments from serious illnesses, such as COPD and HF.

However, discussions are increasing around the integration of rehabilitation and palliative care services, driven by the overlap in needs, interdisciplinary goals, and the types of healthcare professionals involved in delivering the services. In 2023, the World Health Organization (WHO) advocated for such integration of the two disciplines [20].

The 2021 European Society of Cardiology Guidelines for the diagnosis and treatment of acute and chronic heart failure in advocates for exercise training and communication about disease trajectory and anticipatory planning [21]

The 2025 Global Initiative for Chronic Obstructive Lung Disease (GOLD 2025) uses the European Respiratory Society (ERS) and The American Thoracic society definition of pulmonary rehabilitation; ‘Pulmonary rehabilitation is a comprehensive intervention based on a thorough patient assessment followed by patient-tailored therapies that include, but are not limited to, exercise training, education, and behavior change … ’ [5,22].

GOLD 2025 suggests that pulmonary rehabilitation should be considered as part of integrated patient management [5]. GOLD 2025 recognizes palliative care as a broad term, for symptom control as well as management of terminal patients [5]. In 2022 ATS made a policy statement on palliative care among Patients with Serious Respiratory Illness [17]. They describe that palliative care should be an integrated patient care as disease progresses and should be integrated in both primary and secondary care [17]. Similar, the ERS 2023 clinical practice guideline: palliative care for people with COPD or interstitial lung disease that suggest that palliative care should be integrated into routine clinical care for people with serious lung diseases [11]. The ERS 2024 Clinical Practice Guideline on symptom management for adults with serious respiratory illness recommends exercise therapy to be used to reduce fatigue [18].

Guidelines thus support the idea of integrating or coordinating rehabilitation and palliative care for patients with severe lung or heart disease, but it is unclear how and to what extent this concept is being translated into clinical practice.

This integrated service could be visualized as Figure 1. In this paper, we will primarily focus on the integration of rehabilitation and palliative care and less on the integration into disease-specific treatment. This is partly due to the integration into disease-specific treatment, which, in many cases, is the responsibility of hospital specialists, while rehabilitation, at least in Denmark, primarily takes place within the primary care sector. An examination of a fully integrated care service would therefore also necessitate addressing cross-sectoral collaboration. However, this falls outside the scope of this paper.

Figure 1.

Figure 1.

Open in a new tab

Fully integrated disease specific, rehabilitation, and palliative care service.

This paper will explore the arguments for integrating rehabilitation and palliative care, acknowledging that this represents a crucial step toward a fully integrated care service.

This scoping review aims to describe how the integration or coordination of rehabilitation and palliative care is described in the literature, including the approaches used and the outcomes reported focusing on chronic heart failure (HF), chronic obstructive pulmonary disease (COPD), and interstitial lung disease (ILD). Moreover, we investigate whether this person-centered integration of rehabilitation and palliative care is the same across the diagnoses.

Method

The design of this study is a scoping review [23].

A systematic literature search was conducted by librarian JM following a search strategy developed by KM, SM, and JM. The following databases were searched: Ovid MEDLINE, Ovid EMBASE, and CINAHL with full text from EBSCO. All databases were searched in January 2024 and exported to the tool Covidence. The search strategy was developed in Medline and subsequently translated into other databases. The reference lists were subsequently searched by hand for other potentially relevant studies.

The inclusion criteria were studies on integration/coordination of rehabilitation and palliative care for adult patients with the diagnosis of either COPD, ILD, or HF. If studies had interventions, they should define themselves as either coordination or integration of rehabilitation and palliation. Studies were excluded if there was no stratification between different diagnoses.

Meta-analysis, systematic reviews, randomized controlled trials, qualitative studies, observational studies, guidelines, statements, and other gray literature were included. There was no requirement for a control group to be included. The search was limited to articles in English and Danish.

Data extraction and analysis

KM and SM carried out title and abstract screening. The selected papers were then distributed among the entire author group for full-text screening. Each full text was screened by two authors.

Finally, a data extraction was carried out by dividing studies among the author group so that each got 4–8 studies, whereas KM extracted data from all the included studies.

The analysis of the extracted data is based on the narrative analysis method as published by ERS [24]. In its original form, the narrative method was tailored for developing guidelines and for the type of questions, in which a classic GRADE and PICO method does not work [18,24,25]. Later, the narrative method was also used in other narrative review articles [26]. The method allows, on the basis of systematic search and data extraction, for creating a more qualitative synthesis of available literature. A standardized data extraction form was developed where the following item was extracted from all studies; Study name, Country of study, Type of study and publication year, Patient population diagnosis and inclusions criteria, description (integration, coordination, or other), Goal of care and Outcome measure, Professions involved in the intervention, Setting and durations, Informal caregiver participation, Other important information. The narrative analysis of data resembles the scooping review rather than the systematic review. The scooping review analysis depending on the type of research question [27]. The data extracted and the research question for the present study were found to be best presented by a thematic analysis using a modified Braun and Clarke method [28].

Results

Twenty studies [29–48] were included in the final analysis, of these 17 had a pulmonary focus whereas only 3 papers included patients with cardiac disease [39,40], see Figure 2.

Figure 2.

Figure 2.

Open in a new tab

Prisma flow diagram.

Nine studies were from Europe [29,30,35,37,39,41–44] and 11 from Canada or USA [31–34,36,38,40,45–48].

Thirteen [30,34,35,37,39–48] were position papers, expert opinions, or reviews presenting an overview of already published knowledge. The remaining seven studies were different trails style studies.

Overall, six themes were identified when analyzing the data:

Rehabilitation and palliative care have overlapping goals of treatment

Both rehabilitation and palliative care have an overall goal to improve the quality of life experienced by the person with disease [46]. Four studies had a focus on improving quality of life by symptom control to achieve independence and wellbeing in life with diseases [43,45–47]. Different points along the disease trajectory call for distinct goals of care; however, these are not well-defined phases but rather represent a dynamic overlap where needs and priorities often coexist and evolve [30]. It was suggested that by integrating the two disciplines of rehabilitation and palliative care, it becomes possible to adopt a more holistic approach that simultaneously preserves or mitigates the loss of physical function, and thereby independence, while addressing symptom management and facilitating discussions about a future shaped by disease progression [34,37,48].

An integrated service can address key events in that trigger healthcare service use, thus in addition to potentially reducing costs, it empowers patients and improves quality of end-of-life care [33,38].

Timing of services

Rehabilitation is traditionally implemented early in the disease trajectory and palliative care in more end-stage disease. Nevertheless, more recent papers argue that palliative interventions can start at any point in time over the disease trajectory and hence integration of the two becomes possible [30,31,34,35,37,38,46–49]. This was described by several authors as a way to avoid an arbitrary division between life-prolonging and end of life care [35,47]. Early integration may give time to establish relationships between palliative care staff and patient/family and avoid problems of management during impending death [35]. In this way, an integrated care model should begin at diagnosis and continue in the family‘s bereavement period [47].

Only a portion of persons with pulmonary disease receive and even less complete pulmonary rehabilitation. This is partly due to frailty and multimorbidity, however, an early integration of palliative care and rehabilitation might increase the number of persons [41].

While several studies suggest that an early initiation of integrated rehabilitation and palliative care would be beneficial, few have examined how the content of these interventions evolve as the disease progresses [30,37]. However, the two studies that do address this describe a gradual transition – from a primary focus on physical activity to an increasing emphasis on symptom relief. Importantly, they highlight that physical touch remains significant even in the final stages of life, and that alleviating existential distress and grief is relevant not only at end-of-life but also in earlier stages of disease [30,37].

Integration of advance care planning/future planning into rehabilitation services

A concrete way to carry out the integration of rehabilitation and palliation is by integrating advance care planning (ACP) or future goal conversations into rehabilitation services [43]. This integration of educational and end of life discussion into rehabilitation could increase the confidence of the person living with the disease and the physician’s understanding of end-of-life fears and wishes [46].

Communication about a future involving disease progression and death is an integral part of the palliative approach. Such communication empowers individuals with serious illnesses and their informal caregivers to better understand their situation, enabling them to make choices that are most aligned with their values and needs. It is pointed out that ACP might not only help the patient but also the informal caregiver [43].

Incorporating this type of dialogue as a practical component of integrating palliative care into rehabilitation could provide significant benefits [45]. However, it requires dedicated education and communication training for healthcare professionals [34,36–38,43,45,46].

The existential/spiritual dimension

The existential/spiritual dimension is embedded into the definition of palliative care and highlighted explicitly as a benefit of the integration of rehabilitation and palliative care in several studies [30,34,39,42,46]. One paper describes the existential benefits of integrated services as follows: ‘Integration of strategies facilitated symptom control, enabling individuals to focus on what they could do rather than what they could not do, thereby bringing meaning and purpose to life. They engaged in living in the present rather than dwelling in distress and fearing death.’ This was achieved through education and self-management plans as central components of the integrated service [32].

Barriers to integration

None of the included studies discussed the possibility that integrating rehabilitation and palliation was not a relevant idea. But one study mentions that a barrier could be national economic conditions, such as taxes financed by research-based healthcare [47]. Other papers described the need for unambiguous language and clearly defined concepts that can be used operationally when defining goals of care [30,37]. Lack of recognition of symptom is also seen as a barrier toward a more integrated service [43]. Clinician communication skills might be a part of this [43]. A reluctance from the healthcare professionals to open a conversation into end of life and prognosis is mentioned as a barrier for at least the integration of ACP and palliative care into both the disease-specific treatment plan and into rehabilitation [44].

However, the trajectory of the disease itself, with its unpredictability, can act as both a barrier to implementing more integrated care systems [45] and as a justification for greater integration of such approaches [40,45,47].

But the integration of rehabilitation and palliative care would impact the development of training programs for healthcare professionals [40]. There is also a need for clear recommendations in clinical guidelines about both rehabilitation, palliative care, and their integration [29].

There is a great need for more research in both palliative care, rehabilitation, and the integration of the two disciplines [42].

Informal caregivers

Several papers highlight family or informal caregivers as an essential part of a multidisciplinary approach to supporting individuals in optimizing their daily activities and living in accordance with their personal values [35,47]. Family caregivers are recognized as playing a crucial role in providing care for the person with illness [43]. Family and informal caregivers have unidentified and unmet needs that could be a part of an integrated service [31].

Discussion

The main finding of this scoping review is that the literature describing the integration of rehabilitation and palliative care in the treatment of individuals with HF, COPD, and ILD is predominantly composed of reviews and statements, with relatively few interventional studies. There is a fundamental consensus in the literature that potential integration could enhance quality of life for both individuals living with these conditions and their caregivers. This improvement is expected to stem from the synergy between rehabilitation’s traditional exercise-based approach and palliative care’s focus on symptom relief, particularly in the context of end-of-life care.

Among the analyzed studies, no significant differences were observed between HF and pulmonary diseases. However, it is important to note that only a limited number of studies specifically addressed HF. The low number of studies in HF (3) could reflect a fundamentally different research focus. A 2024 American Heart Association statement emphasized the importance of integrating patient-centered care into routine treatment [50]. One possible explanation for the low number of studies originating from cardiology may be that the specialty is more biomedically oriented and therefore less focused on the integration of rehabilitation and palliative care. Another explanation is the variation in terminology across medical specialties. For example, in one of the cardiology studies [48], the term self-care is used to describe an intervention that closely aligns with the ATS/ERS definition of rehabilitation [22]. More intervention research is necessary to assess the organizational and clinical outcomes of integration of palliation and rehabilitation for people living with severe heart or lung disease. Real-life implementation studies are particularly important at this stage of the field’s development.

Several of the included studies advocated an integration of palliation and rehabilitation to avoid an arbitrary division between life-prolonging and end of life care. The same conclusion was drawn in the ERS clinical guideline from 2023, where it was concluded that there is a need to integrate the palliative approach early and alongside the disease-directed approach [11].

Despite the theoretical appeal and published recommendations for integrating rehabilitation and palliative care, evidence remains scarce, as few robust studies have tested these concepts in practice. Implementing such integration on a large scale would likely require complex organizational changes, including bridging professional domains and coordinating efforts across sectors (primary and secondary). While these recommendations are easy to advocate, the practical challenges of merging two individualized and complex approaches, rehabilitation, and palliation, are significant. However, the growing attention to this integration may eventually drive its adoption, not merely in research settings but in the clinical realities faced by patients and healthcare professionals alike.

Informal caregivers are often only mentioned as ‘patient and family’ and not as an independent important research area, This is probably not due to a reluctance to include informal caregivers in a holistic approach, but rather because not many studies have been done where active involvement and support for caregivers is envisaged.

Another essential aspect which occupies relatively little space in most publications and thus in our analysis is the existential suffering. However, it is a central part of the understanding of palliative care [11,13]. The same is seen in a recent review on the integration of rehabilitation and palliative care, both the social and existential dimension of suffering are often missing in outcome measures [15]. The limited focus on existential suffering is likely attributable to the absence of a clear conceptual definition and the inherently elusive nature of human existence. A newly developed 2024 theoretical model specifically addressing this dimension could facilitate future research advancements and deepen the understanding of grief and suffering in the context of serious illness [51].

As highlighted in the results section, several papers advocate the use of advance care planning (ACP) as part of a more integrated service. Many of these studies originate from a period when ACP was widely regarded as unequivocally beneficial and effective. However, more recent debates have raised concerns about the limited evidence supporting the ritualized nature of ACP conversations [52–55]. At the same time, ACP is explicitly recommended in the 2023 ERS clinical practice guidelines [11], underscoring the ongoing discussion on whether ACP, as a concept, represents the most appropriate approach. The concept of ACP itself remains difficult to reach full consensus on. This is likely since the published studies encompass multiple, and at times differing or even opposing, goals for the conversation [56]. A key area of uncertainty concerns whether future care discussions should be structured as one or multiple dedicated conversations or rather be continuously integrated into routine clinical care. However, this debate falls outside the scope of this paper.

Maybe due to our search criteria, we did not find any papers that argue for keeping rehabilitation and palliative care separate. In the included literature, there is a consensus across lung and heart diagnoses that rehabilitation and palliative care will be able to strengthen each other if integrated. For both clinical practice and research to advance the integration of rehabilitation and palliative care, greater conceptual consensus is needed – both in terms of definitions and outcome measures. Establishing a clear and shared framework is essential to build an evidence base that can determine the effectiveness and benefits of such integration.

Strengths

By including two different diagnoses (lung disease and heart disease) we examine both the overlap between rehabilitation and palliative care, as well as how this appears across different diagnoses. The authors of this paper consider it a strength that a wide range of publication types, including a protocol article, has been included. This approach is based on the recognition that limiting the review to interventional studies alone would have resulted in an insufficient evidence base. By adopting a more inclusive strategy, it becomes possible to gain a broader understanding of how researchers worldwide conceptualize the integration of rehabilitation and palliative care for individuals with HF, COPD, or ILD

Limitations

Since many of the studies included in the analysis are reviews or even opinion-based papers, one may fear that the same point is repeated so many times that it becomes a ‘truth’. There is thus a great need to perform classic RCT’s or other types of interventional research to understand both the possible consequences of an integration but also how such an integration can be organized and how informal caregivers can be recognized.

Conclusion

This scoping review finds that the integration of rehabilitation and palliative care for individuals with HF, COPD, and ILD is primarily discussed in reviews and expert statements, with limited interventional studies. Despite this, there is broad consensus that integration could improve quality of life for both patients and caregivers by combining rehabilitation’s functional focus with palliative care’s symptom management and holistic approach.

While publications support this integration, its implementation in clinical practice remains unclear. A key argument for integration is the overlap in timing, treatment goals, and the potential synergy between the two approaches. Several studies highlight the opportunity to incorporate end-of-life discussions, such as advance care planning (ACP), into traditional rehabilitation programs. Introducing palliative care principles earlier in rehabilitation may also increase the number of patients receiving appropriate end-of-life care. Further empirical studies are needed to evaluate the feasibility, outcomes, and practical organization of integrated care models.

Disclosure statement

No potential conflict of interest was reported by the author(s).

References

  • [1].Head A, Birkett M, Fleming K, et al. Articles socioeconomic inequalities in accumulation of multimorbidity in England from 2019 to 2049: a microsimulation projection study. 2024. Available from: www.thelancet.com/public-health [DOI] [PubMed]
  • [2].Weeks JC, Cook EF, O’day SJ, et al. Relationship between cancer patients’ predictions of prognosis and their treatment preferences. 1998. [DOI] [PubMed]
  • [3].Petrillo LA, Shimer SE, Zhou AZ, et al. Prognostic communication about lung cancer in the precision oncology era: a multiple-perspective qualitative study. Cancer. 2022;128(16):3120–9. doi: 10.1002/cncr.34369 [DOI] [PubMed] [Google Scholar]
  • [4].Screever EM, van der Wal MHL, van Veldhuisen DJ, et al. Comorbidities complicating heart failure: changes over the last 15 years. Clin Res Cardiol. 2023;112(1):123–133. doi: 10.1007/s00392-022-02076-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [5].GOLD Assembly . Global initiative for chronic obstructive lung disease report. 2025. [cited 2025 Jan 2]. Available from: https://goldcopd.org/2025-gold-report/
  • [6].Kunneman M, Griffioen IPM, Labrie NHM, et al. Making care fit manifesto. BMJ Evid Based Med. 2023;28(1):5–6. doi: 10.1136/bmjebm-2021-111871 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [7].Kaasa S, Loge JH, Aapro M, et al. Integration of oncology and palliative care: a lancet oncology commission. Lancet Oncol. 2018;19(11):e588–653. doi: 10.1016/S1470-2045(18)30415-7 [DOI] [PubMed] [Google Scholar]
  • [8].Timm H, Thuesen J, Clark D.. Rehabilitation and palliative care: histories, dialectics and challenges. Wellcome Open Res. 2021;6:1–19. doi: 10.12688/wellcomeopenres.16979.1 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [9].Cicely Saunders International 2021 . You matter because you are you. 2021. Available from: https://csiweb.pos-pal.co.uk/csi-content/uploads/2021/01/Cicely-Saunders-Manifesto-A4-multipage_Jan2021-2.pdf
  • [10].Saunders C. Watch with me. UK: Mortal Press; 2003. Available from: http://endoflifestudies.academicblogs.co.uk/wp-content/uploads/sites/22/2014/04/Watch-with-Me-full-text-2005.pdf [Google Scholar]
  • [11].Janssen DJA, Bajwah S, Boon MH, 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(2):2202014. doi: 10.1183/13993003.02014-2022 [DOI] [PubMed] [Google Scholar]
  • [12].Sepúlveda C, Marlin A, Yoshida T, et al. Palliative care: the world health organization’s global perspective. J Pain Symptom Manage. 2002;24(2):91–96. doi: 10.1016/S0885-3924(02)00440-2 [DOI] [PubMed] [Google Scholar]
  • [13].Radbruch L, De LL, Knaul F, et al. Redefining palliative care – a New consensus-based definition. J Pain Symptom Manage. 2020;60(4):754–764. doi: 10.1016/j.jpainsymman.2020.04.027 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [14].World Health Organization . International classification of functioning, disability and health: ICF. World Health Organization; 2001. [Google Scholar]
  • [15].Gärtner HS, Shabnam J, Aagesen M, et al. Combined rehabilitation and palliative care interventions for patients with life-threatening diseases – PREGOAL. A scoping review of intervention programme goals. Disabil Rehabil. 2023;46(14):1–10. doi: 10.1080/09638288.2023.2246373 [DOI] [PubMed] [Google Scholar]
  • [16].Kelley AS. Defining ‘serious illness’. J Palliat Med. 2014;17(9):985. doi: 10.1089/jpm.2014.0164 [DOI] [PubMed] [Google Scholar]
  • [17].Sullivan DR, Iyer AS, Enguidanos S, et al. Palliative care early in the care continuum among patients with serious respiratory illness: an official ATS/AAHPM/HPNA/SWHPN policy statement. Am J Respir Crit Care Med. 2022;206(6):e44–69. doi: 10.1164/rccm.202207-1262ST [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [18].Holland AE, Spathis A, Marsaa K. European respiratory society clinical practice guideline on symptom management for adults with serious respiratory illness. Eur Respir J. 2024;63(6):2400335. doi: 10.1183/13993003.00335-2024 [DOI] [PubMed] [Google Scholar]
  • [19].International CS . The palliative care crisis: inadequate access, care and outcomes in the face of rising demand. London: Cicely Saunders International; 2024. [Google Scholar]
  • [20].Organization WH, Region E. Policy brief on integrating rehabilitation into palliative care services. Copenhagen; 2023. [cited 2023 Jul 31]. Available from: https://apps.who.int/iris/bitstream/handle/10665/366505/WHO-EURO-2023-5825-45590-68173-eng.pdf?sequence=1&isAllowed=y [Google Scholar]
  • [21].McDonagh TA, Metra M, Adamo M, et al. 2021 ESC guidelines for the diagnosis and treatment of acute and chronic heart failure. Eur Heart J. 2021;42(36):3599–3726. doi: 10.1093/eurheartj/ehab368 [DOI] [PubMed] [Google Scholar]
  • [22].Spruit MA, Singh SJ, Garvey C, et al. An official American thoracic society/European respiratory society statement: key concepts and advances in pulmonary rehabilitation. Am J Respir Crit Care Med. 2013;188(7):865–871. doi: 10.1164/rccm.201309-1634ST [DOI] [PubMed] [Google Scholar]
  • [23].Tricco AC, Lillie E, Zarin W, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467–473. doi: 10.7326/M18-0850 [DOI] [PubMed] [Google Scholar]
  • [24].Miravitlles M, Tonia T, Rigau D, et al. New era for European respiratory society clinical practice guidelines: joining efficiency and high methodological standards. Eur Respir J. 2018;51(3):10–13. doi: 10.1183/13993003.00221-2018 [DOI] [PubMed] [Google Scholar]
  • [25].Janssen DJA, Ekström M, Currow DC, et al. COVID-19: guidance on palliative care from a European respiratory society International task force. Eur Respir J. 2020;56(3):2002583. doi: 10.1183/13993003.02583-2020 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [26].Marsaa K, Guldin MB, Marques A, et al. Understanding nonpharmacologic palliative care for people with serious COPD: the individual and organizational perspective. Chest. 2025;167(1):112–120. doi: 10.1016/j.chest.2024.09.003 [DOI] [PubMed] [Google Scholar]
  • [27].Pollock D, Peters MDJ, Khalil H, et al. Recommendations for the extraction, analysis, and presentation of results in scoping reviews. JBI Evid Synth. 2023;21(3):520–532. doi: 10.11124/JBIES-22-00123 [DOI] [PubMed] [Google Scholar]
  • [28].Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi: 10.1191/1478088706qp063oa [DOI] [Google Scholar]
  • [29].Krajnik M, Hepgul N, Wilcock A, et al. Do guidelines influence breathlessness management in advanced lung diseases? A multinational survey of respiratory medicine and palliative care physicians. BMC Pulm Med. 2022;22(1):22. doi: 10.1186/s12890-022-01835-0 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [30].Marsaa K, Mendahl J, Nielsen S, et al. Development of a systematic multidisciplinary clinical and teaching model for the palliative approaches in patients with severe lung failure. Eur Clin Respir J. 2022;9(1):9. doi: 10.1080/20018525.2022.2108195 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [31].Lindell KO, Klein SJ, Veatch MS, et al. Nurse-led palliative care clinical trial improves knowledge and preparedness in caregivers of patients with idiopathic pulmonary fibrosis. Ann Am Thorac Soc. 2021;18(11):1811–1821. doi: 10.1513/AnnalsATS.202012-1494OC [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [32].Kalluri M, Younus S, Archibald N, et al. Action plans in idiopathic pulmonary fibrosis: a qualitative study—‘I do what I can do’. BMJ Support Palliat Care. 2024;14(e1):e945–e952. doi: 10.1136/bmjspcare-2020-002831 [DOI] [PubMed] [Google Scholar]
  • [33].Kalluri M, Lu-Song J, Younus S, et al. Health care costs at the end of life for patients with idiopathic pulmonary fibrosis evaluation of a Pilot multidisciplinary collaborative interstitial lung disease clinic. Ann Am Thorac Soc. 2020;17(6):706–713. doi: 10.1513/AnnalsATS.201909-707OC [DOI] [PubMed] [Google Scholar]
  • [34].Moran-Mendoza O, Colman R, Kalluri M, et al. A comprehensive and practical approach to the management of idiopathic pulmonary fibrosis. Expert Rev Respir Med. 2019;7(7):601–614. doi: 10.1080/17476348.2019.1627204 [DOI] [PubMed] [Google Scholar]
  • [35].Ambrosino N, Fracchia C. Strategies to relieve dyspnoea in patients with advanced chronic respiratory diseases. A narrative review. Pulmonology. 2019;25(5):289–298. doi: 10.1016/j.pulmoe.2019.04.002 [DOI] [PubMed] [Google Scholar]
  • [36].Lindell KO, Nouraie M, Klesen MJ, et al. Randomised clinical trial of an early palliative care intervention (SUPPORT) for patients with idiopathic pulmonary fibrosis (IPF) and their caregivers: protocol and key design considerations. BMJ Open Respir Res. 2018;5(1):5. doi: 10.1136/bmjresp-2017-000272 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [37].Marsaa K, Gundestrup S, Jensen J-U, et al. Danish respiratory society position paper: palliative care in patients with chronic progressive non-malignant lung diseases. Eur Clin Respir J. 2018;5(1):5. doi: 10.1080/20018525.2018.1530029 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [38].Kalluri M, Claveria F, Ainsley E, et al. Beyond idiopathic pulmonary fibrosis diagnosis: multidisciplinary care with an early integrated palliative approach is associated with a decrease in acute care utilization and Hospital deaths. J Pain Symptom Manage. 2018;55(2):420–426. doi: 10.1016/j.jpainsymman.2017.10.016 [DOI] [PubMed] [Google Scholar]
  • [39].Zwisler ADO, Joshi VL, Soja AMB, et al. rehabilitering og palliation ved hjerte-kar-sygdom. Ugeskr Laeger. 2018;180:1828–1834. [Google Scholar]
  • [40].Huitema AA, Harkness K, Heckman GA, et al. The spoke-hub-and-node model of integrated heart failure care. Can J Cardiol. 2018;34(7):863–870. doi: 10.1016/j.cjca.2018.04.029 [DOI] [PubMed] [Google Scholar]
  • [41].Maddocks M, Lovell N, Booth S, et al. Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease (COPD). [DOI] [PubMed]
  • [42].Loveman E, Copley VR, Colquitt JL, et al. The effectiveness and cost-effectiveness of treatments for idiopathic pulmonary fibrosis: systematic review, network meta-analysis and health economic evaluation. BMC Pharmacol Toxicol. 2014;15(1):15. doi: 10.1186/2050-6511-15-63 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [43].Janssen DJA, McCormick JR. Palliative care and pulmonary rehabilitation. Clin Chest Med. 2014;35(2):411–421. doi: 10.1016/j.ccm.2014.02.006 [DOI] [PubMed] [Google Scholar]
  • [44].Lewis D, Scullion J. Palliative and end-of-life care for patients with idiopathic pulmonary fibrosis: challenges and dilemmas. Int J Palliat Nurs. 2012;18(7):331–337. doi: 10.12968/ijpn.2012.18.7.331 [DOI] [PubMed] [Google Scholar]
  • [45].Heffner JE. Advance care planning in chronic obstructive pulmonary disease: barriers and opportunities. Curr Opin Pulm Med. 2011;17(2):103–109. doi: 10.1097/MCP.0b013e328341ce80 [DOI] [PubMed] [Google Scholar]
  • [46].McCormick JR. Pulmonary rehabilitation and palliative care. Semin Respir Crit Care Med. 2009;30(06):684–699. doi: 10.1055/s-0029-1242638 [DOI] [PubMed] [Google Scholar]
  • [47].Hardin KA, Meyers F, Louie S. Integrating palliative care in severe chronic obstructive lung disease. COPD: J Chronic Obstr Pulm Dis. 2008;5(4):207–220. doi: 10.1080/15412550802237366 [DOI] [PubMed] [Google Scholar]
  • [48].Thompson KA, Bharadwaj P, Philip KJ, et al. Heart failure therapy: beyond the guidelines. J Cardiovasc Med. 2010;11(12):919–927. doi: 10.2459/JCM.0b013e32833d3566 [DOI] [PubMed] [Google Scholar]
  • [49].Maddocks M, Lovell N, Booth S, et al. Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease. Lancet. 2017;390(10098):988–1002. doi: 10.1016/S0140-6736(17)32127-X [DOI] [PubMed] [Google Scholar]
  • [50].Goldfarb MJ, Saylor MA, Bozkurt B, et al. Patient-centered adult cardiovascular care: a scientific statement from the American heart association. Circulation. 2024;149(20):E1176–88. doi: 10.1161/CIR.0000000000001233 [DOI] [PubMed] [Google Scholar]
  • [51].Guldin MB, Leget C. The integrated process model of loss and grief - an interprofessional understanding. Death Stud. 2023;48(7):738–752. doi: 10.1080/07481187.2023.2272960 [DOI] [PubMed] [Google Scholar]
  • [52].Korfage IJ, Carreras G, Arnfeldt Christensen CM, et al. Advance care planning in patients with advanced cancer: a 6-country, cluster-randomised clinical trial. PLOS Med. 2020;17(11):17. doi: 10.1371/journal.pmed.1003422 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [53].Korfage IJ, Polinder S, Preston N, et al. Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning. Palliat Med. 2023;37(5):707–718. doi: 10.1177/02692163221142950 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [54].Malhotra C, Shafiq M, Batcagan-Abueg APMA. What is the evidence for efficacy of advance care planning in improving patient outcomes? A systematic review of randomised controlled trials. BMJ Open. 2022;12(7):12. doi: 10.1136/bmjopen-2021-060201 [DOI] [Google Scholar]
  • [55].Morrison RS, Meier DE, Arnold RM. What’s wrong with advance care planning? JAMA. J Am Med Assoc. 2021;326(16):1575–1576. doi: 10.1001/jama.2021.16430 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • [56].Fleuren N, Depla MFIA, Janssen DJA, et al. Underlying goals of advance care planning (ACP): a qualitative analysis of the literature. BMC Palliat Care. 2020;19(1):1–15. doi: 10.1186/s12904-020-0535-1 [DOI] [PMC free article] [PubMed] [Google Scholar]

Articles from European Clinical Respiratory Journal are provided here courtesy of Taylor & Francis

RESOURCES