STRENGTHS AND LIMITATIONS OF THIS STUDY

A significant strength of the study lies in its detailed examination of aspects related to an intervention to facilitate timely specialist palliative home care (SPHC) for patients with chronic non-malignant diseases (CNMDs).

However, the sample was predetermined by participants in the KOPAL trial (ie, SPHC teams in defined areas), thereby precluding the use of theoretical sampling following grounded theory method.

SPHC physicians may exhibit biases, particularly in their subjective experiences with palliative care for patients with CNMD, such as dementia.

Qualitative interviews were scheduled after all interventions were completed, to prevent potential bias in subsequent case conferences.

Introduction

Worldwide, cardiovascular and respiratory diseases are leading causes of death with significant impacts on end-of-life care settings.1 Despite this, patients with advanced chronic non-malignant diseases (CNMD) are under-represented in specialist palliative home care (SPHC),2 both in Germany and globally. In Germany, patients at the end of life are mostly cared for within the setting of primary palliative care (by general practitioners (GPs) and in nursing homes). Patients with complex palliative care needs (approximately 10%) can be cared for by specialist palliative (home) care.3 4 Recent research indicates that the timely integration of SPHC for patients with advanced CNMD can provide support for symptoms often similar to those of oncological diseases, such as breathlessness and pain. However, the transition to specialist palliative (home) care is frequently delayed.5 6 Congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and dementia (D) are among the most common CNMD requiring palliative care within a primary palliative care setting.7 8 Studies (eg, from Mitchell et al) have shown that the early integration of specialist palliative care for CNMD patients can enhance quality of life and reduce hospitalisation.9 10 In Germany, strategies for the timely integration of patients with CHF, COPD and D are largely absent.

The KOPAL trial is a multicentre, cluster randomised controlled trial that tested an intervention for timely collaboration between SPHC teams and GPs for patients with CHF, COPD and D and palliative care needs. The KOPAL intervention involved (1) a home visit by an SPHC nurse using the KOPAL conversation guide,11 (2) a brief consultation between SPHC nurse and SPHC physician and (3) an interprofessional telephone case conference between SPHC nurse, SPHC physician and GP.12 The overall aim of the KOPAL trial was to analyse the effectiveness of timely collaboration, as enacted in the intervention. The first results of quantitative data did not show significant reductions in hospitalisation or healthcare cost, nor improvements in quality of life, as hypothesised.13 14 Further analyses will be published. This paper presents the qualitative findings from the perspective of SPHC physicians and potentially offers an explanation for the lack of significant quantitative findings.

Aim

This study aimed at exploring how SPHC physicians involved in the KOPAL trial (which took place from June 2019 to November 2022) experienced end-of-life care for patients with CHF, COPD and D, both with and without the KOPAL intervention.

MethodsStudy design

The qualitative evaluation comprised part of the KOPAL trial12 (Trial registration number DRKS00017795; German Clinical Trials Register), focused on the experiences of SPHC physicians before, during and after the KOPAL intervention. The goal was to gain deep insights into the attitudes, motivations and experiences of SPHC physicians regarding their care for patients with CNMD. Grounded theory methodology according to Strauss and Corbin was employed to interpret narratives and identify underlying phenomena, generating a data-driven explanatory theory.15 To ensure a high scientific standard, the study reporting followed the Consolidated criteria for Reporting Qualitative research checklist.16

Recruitment and sampling

The KOPAL trial was conducted in the greater Hamburg area and Lower Saxony, Germany.12 All SPHC teams in northern Germany (N=64) were invited to participate. 14 SPHC teams (ie, 16 SPHC nurses, 16 SPHC physicians) took part in a total of 78 KOPAL interventions. Subsequently, FS and DH invited all 16 participating SPHC physicians to share their experiences with the KOPAL intervention, through interviews. There were no additional inclusion or exclusion criteria. Five SPHC physicians did not take part because of a lack of time or accessibility. 11 SPHC physicians provided written informed consent and were interviewed.

Data collection

Data were gathered through thematically focused narrative interviews (according to Rosenthal (2005)), supplemented by a brief demographic questionnaire. The qualitative core group (FS, DH, GM, SSc, CAM and NJP) developed the interview topics. Initially, three questions were asked to initiate the narrations, focusing on the experiences with end-of-life care for patients with CHF, COPD and D: (1) prior to the KOPAL intervention (ie, care as usual), (2) during the intervention and (3) afterwards (see table 1). All 11 interviews were conducted by phone between February and December 2021 by FS and DH. Both researchers are experienced in conducting narrative interviews. The interviews were audio recorded and transcribed verbatim. The duration of each interview ranged from 30 to 90 min, including the time taken to complete the demographic questionnaire. Immediately after each interview, a memo was prepared. Table 2 presents a summary of the participant characteristics.

Table 1

Interview guide for SPHC physicians

Table 2

Sociodemographic data for participating SPHC physicians and their teams

Data analysis

Interviews were analysed using grounded theory methodology according to Strauss and Corbin covering all three steps: open coding (ie, developing initial concepts/codes), axial coding (ie, collapsing codes into categories) and selective coding (ie, identifying the core category/core phenomenon).15 Grounded theory, first developed by Glaser and Strauss, is epistemologically rooted in symbolic interactionism, a theory based on philosophical pragmatism and social construction. Its aim is to develop a data-based, comprehensive theory to explain a complex phenomenon.

In this study, FS and DH analysed the transcripts in an iterative process using abductive reasoning, taking the memos into account. The analysis process was discussed in weekly research group meetings and subsequently reviewed and finalised by the qualitative core group (FS, DH, GM, SSc, CAM and NJP). During the in-depth interpretative analysis, the following coding paradigm was employed to guide the analysis on a larger scale: context as conditions in the background of the main phenomenon; causal conditions leading to the core phenomenon; intervening conditions as categories influencing the action strategies; action strategies to handle the core phenomenon and the consequences of these actions strategies (also indirectly of the phenomenon, itself).15 Analysis was facilitated by the software package MAXQDA Analytics Pro 2020.

Patient and public involvement

Participants affected by COPD and CHF, patient representatives for participants with D, and professional caregivers (ie, nurses, physicians) contributed to the development of the KOPAL conversation GUIDE,11 which directed the SPHC home visits in the KOPAL intervention. Professional caregivers and patient representatives were members of the KOPAL trial advisory board. For the part of the qualitative evaluation, no additional patients or public were involved.12

Results

The analysis revealed that collaboration between GPs and SPHC teams is essential, as worked out from the SPHC physicians’ perspective. This emerged as the main phenomenon, alongside eight additional categories explaining the complexity of outpatient palliative care collaboration with GPs. Figure 1 depicts the results as an explanatory theory.

Figure 1

Theory of the necessity of collaboration between general practitioners (GPs) and specialist palliative home care (SPHC) teams for patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and dementia (D).

Context

From the SPHC physicians’ perspective, chronic diseases are difficult to manage within GP care settings (C1), due to the uncertainty and long-term burden associated with CHF, COPD and D. They observe that GPs often do not receive comprehensive information from other specialists (eg, cardiologists, pulmonologists) and are faced with patients who either cannot or do not wish to accept their diagnosis. This makes it challenging to discuss disease prognosis and patients’ preferences regarding further therapy. SPHC physicians experience a lack of additional support beyond primary care settings (eg, palliative care consultation structures). The following quotes have been edited for readability.

‘the majority of these patients are covered by specialist care but with a clear end because specialists don’t make any home visits, so it means the worse the patients fall through the health care net and then GPs are responsible and I can only include myself in if you don't have the experience for example, in dealing with severe respiratory and morphine preparations in a very nuanced way it becomes a great challenge […] because depending on where you did your specialist training perhaps you didn’t have much exposure to it’ (SPHC03_w).

Causal conditions

Despite being aware of the challenges in general practice, SPHC physicians maintain that the primary mandate for healthcare clearly belongs in the hands of GPs (C2). While patients with CHF, COPD and D are generally well treated by GPs, SPHC physicians recognise a need for GPs’ greater awareness of palliative care issues. This includes, for example, on-demand medication or addressing end-of-life and advance care planning.

SPHC physicians believe that determining the best time to initiate SPHC is patient-specific (C3). The complexity of each patient’s situation necessitates discussion between GPs and SPHC teams. According to SPHC physicians, patients often perceive their disease as a new normal, leading to a denial of death. This makes the process of integrating them into a specialist palliative (home) care structure challenging.

‘[patients] are well cared for by GPs, I rarely encounter situations where I would question why has this not been done yet? but in my special role as a [SPHC] physician I can make proposals for GP care but […] the GP still holds the primary mandate for health care and we [SPHC physicians] are here to advise and support and are very happy to take on this role’ (SPHC10_m).

These causal conditions lead to the core phenomenon.

Core phenomenon

From the SPHC physicians’ perspective, identifying the optimal timing for SPHC integration is crucial for effective collaboration between GPs and SPHC teams. Given the individualised timing, both the expertise of GPs (regarding patient-related issues such as biographical background) and SPHC competencies (in palliative care topics) are needed. Category 4 highlights the main phenomenon: the necessity of collaboration between GPs and SPHC teams for patients with CHF, COPD and D (C4).

Intervening conditions

SPHC physicians see their role as one of caring for patients with CHF, COPD and D and supporting the care provided by GPs. In terms of collaboration, SPHC physicians wish to be recognised by GPs for their ‘special eye’ or ‘palliative attitude’ (C5). On the basis of a holistic multiprofessional approach, all actors from different professions contribute their specific strengths to care. If GPs would acknowledge this, SPHC physicians could assume an advisory role in the collaboration (C6).

With regard to the KOPAL intervention, SPHC physicians have various perspectives on their role: On the one hand, some find the intervention challenging because they feel uncomfortable discussing a patient whom they have never personally seen. On the other hand, others perceive themselves clearly in an advisory role, even for patients whom they have never seen personally, understanding this as part of SPHC teamwork to gather information from GPs or SPHC nurses.

In general, SPHC physicians view collaboration with other physicians or care structures (eg, hospices) as foundational for effective collaboration in palliative care, especially when SPHC teams consist of network structures, as is common in Lower Saxony. In both the KOPAL intervention and usual care, SPHC physicians see their competencies as supportive tools for optimising GP care.

‘[patients with] complex symptoms, that results in repeat hospitalisation, it has to be said that our colleagues [GPs] have always monitored this over the years and then call us in to support them’ (SPHC26_w).

SPHC physicians experience inequitable access to SPHC structures for patients with CHF, COPD and D. They argue that the German Medical Review Board (Medizinischer Dienst, MD) often rejects prescriptions made by GPs and/or that GPs lack knowledge of how to prescribe SPHC for these patients in a way that ensures financing. Consequently, from the perspective of SPHC physicians, patients with these diseases often seem to receive ‘SPHC by accident’ (C7). Given the structures of the German healthcare system, there is a sense that these patients do not fit well within the system, partly due to financing difficulties. Therefore, SPHC teams feel the need to actively refer patients, as the pathway into SPHC is not self-evident due to structural barriers.

‘there was a patient smuggled in, I think with dementia ? […] we looked at options for improvement in advance care planning […] we also discussed […] care opinions and not just the status quo, yes? […] That was the only thing […] with possibilities to optimise’ (SPHC06_m).

Action strategies

Given the crucial role of teamwork in SPHC, SPHC physicians actively seek collaboration (C8) with GPs, whom they view as essential partners in outpatient palliative care. To achieve this, they strive to strengthen regional networks through personal contact.

‘[I] always try to contact the GP after [the first home visit] on the same day […] if possible […], this leads to better cooperation when we communicate directly and if there are any changes or any questions from the GP or when I think that there are some additional things that need to be done [for the patient], then we try to talk on the phone is more effective, […] and […] faster’ (SPHC23_m).

SPHC physicians repeatedly note, that the KOPAL intervention serves as an excellent starting point for engaging GPs who are not yet integrated into regional networks. From the SPHC physicians’ perspective, personal contact helps GPs become familiar with the specifics of palliative care. The ideal scenario involves GPs and SPHC teams learning from each other’s competencies in a collaborative process. SPHC physicians believe that GPs can come to view SPHC not as a competing factor in healthcare and financing, but as a complementary resource.

‘I think, [KOPAL], it’s good, […] communication is always beneficial in my opinion […] maybe at the very least it generates a perception among colleagues [the GPs] that the participating palliative care physician is poised for collaboration’ (SPHC13_m).

Thus, interprofessional case conferences could function as a starting point for further interaction.

Consequences

As a result of their efforts to expand networks and strengthen cooperation with GPs, SPHC physicians often establish collaborative relationships (eg, by obtaining a GP’s mobile phone number after the initial contact during a case conference). From their perspective, ideal collaboration involves direct and personal communication (C9). Effective care does not mean that GPs refer their patients to SPHC and then disengage from the collaboration and care process; rather, GPs should remain involved (eg, through continued home visits). SPHC physicians can only take on an advisory role if the collaboration is conducted on equal terms and with shared goals.

‘we [SPHC team] truly felt that our multiprofessional team, together with the GP harmonised well, there was a specific level of discussion from the start: a harmony at eye level for joint cooperation for the patient’ (SPHC10_m).

In summary, SPHC physicians understand the challenges GPs face when treating patients with CHF, COPD and D. Due to the characteristics of these diseases and patients’ long-term symptom burden, collaboration requires both the expertise of GPs and the competencies of specialist palliative (home) care. There is no clear or definitive timing for the initiation of SPHC; this must be determined through interprofessional collaboration, with SPHC physicians playing an advisory role and GPs recognising the ‘unique attitude’ of palliative care. Therefore, SPHC physicians actively seek collaboration through networking and personal contact. After a negotiation process, effective collaboration ideally arises through joint work on an equal footing. From the perspective of SPHC physicians, this means that GPs retain their primary mandate for healthcare and continue to make home visits.

Discussion

This study presents findings reflecting the perspective of SPHC physicians before and after participating in the KOPAL intervention, which included a home visit by an SPHC nurse, followed by an interprofessional case conference involving the SPHC team and GP. The findings suggest that SPHC physicians view interprofessional collaboration with GPs as fundamental for the timely integration of patients with CNMD into specialist palliative care. Consequently, the primary mandate for healthcare belongs to GPs while SPHC physicians see themselves in an advisory role. In Germany, this advisory role is part of statutory provisions and contractually regulated depending on the federal state.17 Schneider et al show that GPs welcome this advisory role played by SPHC teams.18

The interviews revealed that SPHC physicians often refer to GPs as their ‘colleagues’. This is not surprising, considering that many SPHC physicians also practice as GPs. The results indicate a ‘unique attitude’ in palliative care, though the literature on this topic is limited.19 20 The analyses also show that SPHC physicians categorise GPs based on attitude (eg, GPs who take time for patients), highlighting a relevant topic that has been previously noted in other qualitative analyses. For example, Fasting et al generated similar categories in their content analysis (ie, highly, weakly and uninvolved GPs).21 Additionally, the effects of SPHC physicians’ dual roles as part-time GPs should be investigated more thoroughly.

SPHC physicians identify general challenges for GPs in managing CHF, COPD and D, due to the long-term symptom burdens imposed by these conditions. Marx et al, for example, acknowledged that patients with COPD often struggle to accept the severity of their disease.22 From the perspective of SPHC physicians, this is one of several factors complicating care for these patients, highlighting the need for greater GP support—not necessarily from SPHC teams alone, but also from other parts of the care system (eg, ambulatory nursing services, hospice services). Moreover, SPHC physicians emphasise the importance of expanding palliative care skills among GPs. Particularly regarding CHF, COPD and D, they believe it is crucial for GPs to feel confident in discussing end-of-life topics and to understand when and how palliative care is indicated and prescribed, as well as how it can support their care. Effective advance care planning requires robust cooperation between GPs and SPHC teams. This need for collaboration is also supported by the Canadian study of Sue-A-Quan et al, which identified four essential conditions for the provision of early palliative care: clear delineation of roles, shared care based on patient needs (rather than prognosis), adequate resources for GPs (eg, training programmes, financial incentives) and the disambiguation of palliative care from end-of-life care.23

The strength of this study lies in its complex in-depth analysis, which results in a data-based theory illustrating the connections between relevant categories and core phenomenon related to the research question. However, one limitation is the predefined nature of the sample, as potential interview partners were limited to the previous study participants. A broader sample could reveal further aspects of this topic. Additionally, interviewees’ varying levels of experience with the relevant patient groups may limit the generalisability of the results. Finally, qualitative interviews were conducted after all KOPAL interventions were complete, to prevent potential bias in subsequent case conferences. However, the narrative approach used may have helped participants recall past details inaccurately.

Interventions such as the KOPAL intervention may enhance care structures, particularly in palliative care, for patients with CHF, COPD and D. Furthermore, the KOPAL intervention may facilitate the initiation of a negotiation process between SPHC teams and GPs to establish effective collaboration. The results suggest that finding a method for joint working is crucial, so the appropriate timing for care provision can be determined naturally, through ongoing exchange. As Pinnock et al confirmed that there is no definitive time point for integrating palliative care for patients with COPD.24 Interventions such as KOPAL can contribute to a paradigm shift, as already recommended by the working group for non-oncological diseases patients (called ‘DGP-AG Nichttumorpatienten’) in Germany.25 As it has been discussed for several years, literature says that palliative care should be seen more as a timely treatment concept rather than an intervention, particularly without focusing solely on oncological diseases.26–28 To this day, there is a lack of objective criteria, which further emphasise the importance of (personal) collaboration.

Conclusion

The results indicate that, from the perspective of SPHC physicians, end-of-life care for patients with CNMD requires a close collaboration between GPs and SPHC teams. The combined competencies of both professions are essential for determining the best timing for specialist palliative care, given the uncertainties of these diseases. The KOPAL evaluation interviews with SPHC physicians show that collaboration requires a negotiation process to establish effective working relationships, ideally involving personal contact on an equal level. The foundation should be openness and a willingness to collaborate, with an emphasis on networking and fostering strong relationships.

Data availability statement

No data are available.

Ethics statementsPatient consent for publication

Not applicable.

Ethics approval

This study involves human participants and the KOPAL study received approval from the Research Ethics Committee of the University Medical Center Hamburg-Eppendorf (number PV7090), as well as the Research Ethics Committees of the University Medical Center Goettingen (number 34/1/20Ü), the Hannover Medical School (number 8815 BO K 2019) and the University of Oldenburg (number 2019-145). Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The KOPAL trial is a multicentre, cluster randomised controlled trial that was realised through interdisciplinary collaboration. The applicants are Martin Scherer (principal investigator), Gabriella Marx (co-principal investigator), Ingmar Schäfer, Hendrik van den Bussche, Nils Schneider, Stephanie Stiel, Eva Hummers, Michael Freitag, Friedemann Nauck, Tim Friede and Hans-Helmut König. The scientific advisory board consisted of Hendrik van den Bussche, Dominik Ahlquist, Antje Freytag, Martina Kern, Hans Klose, Carola Neugebohren, Meike Rybczynski and Sven Staack. We would like to thank all patients, family members, GPs and specialist palliative home care teams who have participated in and supported the study. In addition, we acknowledge Valerie Appleby’s editorial review of this paper.