Providing care to long-term mechanically ventilated patients in Germany – Current situation and needs for action from the perspective of health professionals / Die Versorgung langzeitbeatmeter Patienten in Deutschland – Aktuelle Situation und Handlungsbedarfe aus der Sicht von Gesundheitsberufsangehörigen

Since the ruling of the German Federal Social Court in 1999, every patient with IMV or other life-prolonging technologies with acknowledged complex and extensive healthcare needs has the right to be cared for in-home care settings (i.e., private home, flat-sharing communities) up to 24 hours a day (Bundessozialgericht, 1999). This decision initiated the development and rapid expansion of specialized services for IMV and other technically dependent persons (Advisory Council, 2014). At present, invasive home mechanical ventilation has become a well-established intervention in Germany, and specialized clinical services of acute care hospitals and rehabilitation clinics are complemented by a large variety of specialized community services, starting from resident physicians to (institutional) nursing care services and therapists to providers of medical supplies. The majority of these services operates under private ownership, including the medical-industrial sector (Stark et al., 2016). Furthermore, those providers usually work independently, with cross-sectoral and interprofessional collaboration being uncommon.

The responsibility for ensuring adequate home care for ventilated or other technically dependent patients up to 24 hours a day lies with the providers of nursing care. Each of the approx. 14,000 existing German home nursing services (Destatis, 2018) are generally allowed to provide this type of care. The nursing services provided are based on individual contracts between patients, providers and health insurance companies. Federal quality standards on nursing and other dimensions of specialized healthcare are to date missing. In fact, existing German guideline on “Non-Invasive and Invasive Mechanical Ventilation for the Treatment of Chronic Respiratory Failure” (Windisch et al., 2017) offers non-mandatory guidance for specialized healthcare for the patient group in clinical and community settings, such as for technical issues, organizational structures, follow-up and monitoring of ventilation, qualification criteria or discharge management. However, the guideline remain silent on how to organize and conduct continuing, multi-professional and cross-sectoral long-term care to address the patients’ complex needs and ensure high-quality care. Internationally, healthcare for IMV and other technically dependent persons has also dynamically developed in the last two decades – for example, Sweden (Geisewall et al., 2015), Poland (Nasiłowski et al., 2015), Canada (Povitz et al., 2018), and the United States (Sahetya et al., 2016) – and seems to face similar challenges to appropriate healthcare, such as poor quality of care, inappropriate qualification and expertise, service fragmentation, regional disparities and access barriers. Although little is known about healthcare for IMV patients in different national or regional contexts, international consensus exists that improved access to, efficiency and outcomes of healthcare necessitate continuing, interprofessional and cross-sectoral approaches healthcare (Stark & Ewers, submitted). German initiatives to implement those principles into everyday care for IMV patients are rare. Current practices rather seem to reflect the existing lack of regulation and guidance to arrange and further develop specialized services adequately.

Against this background, a multi-component mixed-method health services research project (VELA-Regio, 2015–2016) was conducted. The study aimed to determine existing health services for long-term IMV patients in a contrastive sample of four urban and rural German regions (Schwerin, Berlin, Hof, Tübingen) and to explore patient pathways throughout the care continuum, the appropriateness of existing health services and processes, challenges, optimization needs and opportunities within those regions. Three work packages were sequentially conducted, summarized and discussed to develop recommendations for the future organization and management of care for long-term IMV patients in Germany.

This article presents key findings from one of these work packages. The aim of this part of the overall research project was a dense description of the current situation and needs for action in providing care to long-term mechanically ventilated patients in Germany from the perspective of health professionals. The results should be discussed in light of (inter-)national theoretical discourses on the principles of needs-based health system design, continuity and integration of individual case management. In this way, one of several building blocks for the development of recommendations for the care for long-term IMV patients in Germany should be provided. The research question addressed the current situation of healthcare provision for long-term IMV patients in the four German regions, existing regional similarities and differences from the health professionals’ perspective. Furthermore, it was asked, how the pathways the patients take through the health system can be described from the “insiders” perspective and what needs for action exist to improve healthcare for long-term IMV patients.

Further results of the VELA-Regio project have been published as a research report in three comprehensive working papers (Lehmann et al., 2016a, b; Stark et al., 2016) and in the form of a discussion of partial aspects of the overall project with health policy objectives (Ewers & Lehmann, 2018). The results presented here were not focused on in these past publications.

An explorative, qualitative research design using expert interviews as described by Meuser and Nagel (2009) was adopted to gain in-depth insights into this largely unexplored field. According to Meuser and Nagel, “experts” are considered to be individuals who are themselves part of or have documented expertise in the field under study and are thus able to provide specific insights (Meuser & Nagel, 2009). Health professionals were eligible participating as experts in this study if they had an organizational or institutional connection to long-term care of IMV patients or had privileged access to information on IMV patients in or beyond the selected regions, and were experienced (at least one year) in health provision or management for these patients. Particular consideration on differences and variation in professional perspectives should be achieved by including experts with a wide range of responsibilities or institutional and professional affiliation from different sectors and settings in the four selected regions, such as specialized hospitals or resident physicians, senior nurses of intensive nursing care services, case managers in a rehabilitation clinic, and employees of health insurances.

The research project VELA-Regio followed the rules of good scientific practice, including verbal and written informed consent on the study's purpose, procedures and data protection. The semi-structured expert interviews with four topics (Figure 1) were conducted face-to-face at the interviewees’ workplace or via phone between September 2015 and March 2016.

Figure 1

The interviews were digitally audio-recorded and transcribed verbatim, except for one interview, which was documented by an interview protocol upon request of the interviewees. The analysis of all interviews was carried out using MAXQDA software and based on the step-by-step framework of Meuser and Nagel (2009) in the following sequence: The transcripts were initially read and paraphrased to gain a thematic overview. Text segments of each interview that built units of meaning were labelled with inductive codes. Subsequently, a thematic comparison, clustering, abstraction and thematic conceptualization across interviews was conducted. Codes with similar meaning were structured, condensed and abstracted to preliminary themes and (sub-)categories, followed by further condensation, highlighting thematic similarities and differences. Finally, the results were discussed against the background of theoretical discourses on the principles of needs-based health system design, continuity and integration of individual case management and overall care.

To ensure reliability of the research process, the analysis was performed by two researchers (YL, ST) with a nursing science and public health background. The results were regularly discussed and reflected by the members of the research team throughout the analysis process. Differing interpretations were discussed by all authors (YL, ST, ME) until a consensus was reached.

The interviewees described the group of patients with IMV as relatively small but extremely heterogeneous. They identify two main patient subgroups: (1) patients with elective long-term IMV due to conditions leading to progressive respiratory failure (e.g., neuromuscular or airway diseases), and (2) patients requiring long-term IMV after an episode of acute respiratory and weaning failure (also see Rose et al., 2015). Within these two main groups, heterogeneity accompanied with differing needs also results from patients’ age (ranging from infants to the very old), their various main and secondary diagnoses (e.g., lung diseases, neuromuscular diseases, conditions after stroke or trauma), and the techniques and types of ventilation. Additionally, patients’ social and everyday life circumstances vary considerably.

Depending on these heterogeneous conditions, the healthcare needs IMV patients present vary widely. While some get along with little professional help, other patients may benefit from ongoing weaning attempts and intensive rehabilitation following acute illness episodes and a prolonged period of convalescence. Others depend on palliative care at the end of life due to old age, advanced illness, and a generally very fragile health state. Besides ventilation, additional technical dependency (such as artificial nutrition, dialysis or cardiac support systems) is increasingly common and needs to be considered. According to the interviewees’ experience, healthcare strategies and services need to be carefully adapted to these differing needs.

The experts were asked to assess the structures and facilities of (specialized) healthcare for long-term IMV patients in their regions to subsequently understand their statements and interpretations regarding the patient pathways and the perceived health system issues. Their perspectives on current structures, relevant institutions and professions, are shown in Figure 3. Although the interviewees initially state that existing structures contribute to ensuring healthcare for long-term IMV-patients within the various regions and seem to have more or less arranged with the current local services, their further descriptions draw increasingly differentiated pictures of the regional structures with apparent deficits.

Figure 3

A main objective of the research project was to explore typical pathways, long-term IMV patients take through the health system. Several interviewees reported that, in spite of recommendations in the guideline mentioned above (Windisch et al., 2017), patients do often not receive needs-based and graded interventions according to their complex demands, particularly with regards to stepping down from intensive care to post-intensive care units, systematically pursue individual potentials to rehabilitation and weaning, discharge management, monitoring and follow-up of the patient health state and care. Instead, they often seem to be transferred directly from the intensive care unit to community settings, where treatment, rehabilitation opportunities and weaning efforts are limited. Without appropriate therapy and rehabilitation, the experts point out, chances for ventilation weaning decline over time.

Moreover, the interviewees perceive that demands for informed and participatory decision-making during discharge and transition processes are disregarded by physicians and associated staff in charge. Rather, patients are guided to the next vacancy, regardless of the objective and perceived appropriateness of the care they receive. With such random pathways, particularly during transitions from acute to community care, quality criteria tend to fade into the background, the experts state:

A further challenge interviewees describe addresses the assurance of guideline-based regular follow-up that is not provided for every patient, due to limited capacities of expert centers and the non-binding nature of guideline recommendations. Some experts believe that many physicians and nurses in both, the hospital and the community sector, seem to be unaware that these follow-ups are pivotal to needs-based healthcare and ongoing review of weaning and rehabilitation potentials, that may be successful even after a long period of convalescence.

As a result, patients may remain ventilator-dependent, and rehabilitation may not be fostered to its full potential for various reasons, such as ignorance or negligence. Accordingly, respondents conclude that the insufficient service availability and shortcomings in the management and monitoring of healthcare processes often play a more important role in determining patients’ pathways and outcomes, than their specific situation and needs. They summarize, that patient pathways too often end up on a proverbial deadlock.

Most challenges and needs for action identified by the interviewees were highlighted in the context of the issues outlined above and without being explicitly asked. Their statements made clear that healthcare for IMV patients is challenging in terms of legal, political, economic and ethical issues. They repeatedly criticized the fact that the recommendations for long-term care for IMV-Patients within the existing guideline (Windisch et al., 2017) are not sufficiently binding:

Essentially, the development and multi-professional agreement of an evidence-based guideline is perceived as an important step in this long-neglected but growing health sector. But most experts highlight that without being legally binding, however, the guidelines’ potential on user-oriented, professionally and ethically responsible healthcare remains untapped. Last but not least, they stress that the non-binding guideline character leads to an insufficient implementation that becomes apparent in the context of economic incentive systems, for example, for acute care hospitals, domestic nursing services and providers of supervised flat-sharing communities.

Interviewees illustrate these mechanisms by the example of hospitals’ discharge: This process is perceived as often being driven by profit prospects, resulting in early and fast discharges and sometimes disregarding recommended procedures and actors who need to be involved to ensure smooth transitions. Additionally, potential monetary benefits nursing care services and providers of medical supplies can expect from patients with persistent ventilation in a relatively stable condition may result in inhibiting follow-up visits at specialized weaning centers. Such practices, resulting from insufficient guideline implementation and control mechanisms, would require sound regulation:

To support prospective efforts to the development of evidence and needs-based healthcare, substantial investments in the expansion of weaning centers and early rehabilitation facilities are strongly encouraged. According to several respondents, such efforts are to date restrained by a poor understanding of the associated benefits at the political decision-making level. Closing this information gap, for example, by providing comprehensive health economic analyses, may, among other factors, contribute to initiating sound initiatives. Additionally, a potential curative oversupply at the end of life is highlighted by the interviewees:

Based on the interviewees’ experiences, communication between clinicians, patients and families is often difficult, especially when a critical illness becomes chronic. Tracheostomy, prolonged mechanical ventilation, and other burdensome and resource-intensive interventions are often the results of missing comprehensive and participatory discourses about appropriate and realistic goals to healthcare for seriously ill people. In the interviewees’ perception, these challenges also emerge from organizational routines and a lack of ethical skills among physicians, nurses and other professionals, inadequate legal knowledge, palliative skills and care structures. Consequently, IMV often seems to be continued, despite being recognized as futile. So, they call for an independent, central agency to manage, monitor and control health providers of long-term IMV patients and to establish standardized patient pathways. Also, a binding and legally protected regulation of care processes is desired. By adjusting and regulating remuneration and incentives for different services, respondents expect a shift from currently primary economic interests to more needs- and preference-based healthcare.

Some interviewees identify promising opportunities for improving the healthcare for IMV patients by establishing formalized collaborations following the logic of integrated care. Different partners (e.g., hospitals, rehabilitation facilities, GPs, nursing services) could be incorporated to develop patient-orientated, cross-linked healthcare approaches. Ideally, those collaborations should be built around expert ventilation and weaning centers with specialized expertise. This, they state, could only work, if the traditional fragmentation of the German health sectors in terms of quality assurance, development and economy is dissolved:

Additionally, several experts suggest to establish inpatient transitional wards for unstable, chronically critically ill patients to identify and foster preventive and rehabilitative potential by adapting innovations from adjacent areas of care, such as specialist palliative home care. Interviewees also believe that the regular use of telehealth in community healthcare for IMV patients should be given more significant consideration.

Interviewees highlight regional disparities and lacking capacities of specialized acute care and rehabilitation facilities, community nursing services, GPs, medical specialists and therapists in healthcare for long-term IMV patients especially in rural regions. These findings are supported by a spatial analysis of specialized services for long-term IMV patients within the VELA-Regio study (Stark et al., 2016) and are also argued internationally (e.g., Laub et al., 2004). Reasons for this were detected in the inhomogeneous, non-regulated and hypothetically interest-driven service developments during the past decades.

Deficient health structures and a lack of qualified professionals are questioning the appropriateness of healthcare and might indicate on oversupply, undersupply and inappropriate healthcare on the one hand. On the other, the experts add, appropriateness and needs-orientation, especially of care arrangements in home care and flat-sharing community settings, are frequently put into question. Not only because of lacking and often poorly trained professionals, but also due to perceived and experienced challenges regarding patient safety, participation, rehabilitation and quality of life. The underlying causes identified lie in economic provider interests, constraints resulting from regulations inherent to the German health and social system (e.g., G-DRG-based remuneration of inpatient care, funding of nursing home accommodation) and lacking control mechanisms (also see DIGAB, 2017).

Little it is known about the extent of quality and safety problems in typically hard-to-control home care settings (inter-)nationally (Masotti et al., 2010; Doran et al., 2014). External quality audits from the German Medical Service of the Health Funds suggest that the quality and patient safety in this setting is not in good shape (MDS, 2017). However, specific (inter-)national data on home care for long-term IMV patients and other technology-dependent patients are almost entirely lacking (Ewers & Lehmann, 2018). At the same time, it is widely acknowledged that high-quality care for long-term IMV patients requires high professional qualification, quality and safety standards (Baxter et al., 2018). Specific training on intensive home care or home mechanical ventilation is recommended, for example, by the German guideline on long-term IMV (Windisch et al., 2017) for nursing staff and other professionals. To what extent the German professionals involved in specialized care for the patient group are qualified accordingly, is yet widely unknown. As opposed to Germany, where nursing providers are responsible to ensure adequate long-term care of IMV patients, these tasks are primarily conducted by informal caregivers and assistants in various countries is (Swedberg et al., 2015; Dale et al., 2018). In contrast, the role of family caregivers and nursing assistants in Germany is often marginalized (Lademann, 2007; Schaepe & Ewers, 2018). Few studies on the role of informal caregivers in Germany show that task-sharing with nurses and limited informal caregiver expertise often seem to be insufficiently reflected (ibid.). Given the reported shortage of qualified nursing staff, it seems to be overdue to step up discussions on the systematic integration of informal and assistant caregivers based on international practice and experiences and by taking into account the impact of nursing task shifting on care processes seems to be overdue. Informal caregivers should be supported with participatory professional collaboration, purposeful fostering of their expertise (Swedberg et al., 2015) and protection from excessive demands (Dale et al., 2018). International conceptual approaches providing structured training and education for informal caregivers in charge of long-term care of IMV patients may provide orientation (Stark & Ewers, submitted).

As the results show, professionals are familiar with patient pathways, allocation processes and responsibilities formalized in the relevant German guideline (Windisch et al., 2017), but criticize that they are not sufficiently binding. Accordingly, patient pathways are evaluated too often as being individual results of experience-based, informal networking, and left to chance. Instead, the commitment of single health providers seems to determine whether long-term IMV patients receive appropriate healthcare at the right time and in the right setting, and if quality and safety aspects are taken into account.

But in fact, long-term care goal setting and provision for IMV patients is affected by individual disease trajectories and various ethical challenges (Dybwik et al., 2012; Jox et al., 2012). For example, a slow recovery process (e.g., from chronic critical illness) may impact weaning efforts, or a progressive respiratory failure may require advance care planning and palliative care (Nelißen et al., 2018). Thus, care planning and management for these patients should not solely depend on personal commitment but rather consider individual, social and religious needs as well as quality of life besides the common aspect of (long-term) survival (Geiseler & Schönhofer, 2016). From the interviewees’ point of view, these multifaceted and differing complex needs, which require adjusted and graded interventions, do not seem to be fully recognized by professionals and leads to a potential waste of potentials for reasonable interventions (ibid.). This especially applies to discharge from inpatient settings, rehabilitation and weaning attempts, ongoing health monitoring ad follow-up. Respondents recognize nontransparent and secondary interests of stakeholders (e.g., care providers) as significant influences on these shortcomings. Moreover, some interviewees believe that the perceived increase in the prevalence of long-term IMV in Germany is – besides epidemiological/demographic changes and technological advances in healthcare – particularly accelerated by financial incentives, poor communication and qualification deficits especially concerning ethical aspects and palliative care (also see Schönhofer et al., 2016; DIGAB, 2017).

Due to these procedural challenges combined with insufficient health structures, control mechanisms, quality and safety standards, appropriate care arrangements that carefully take into account individual needs, rehabilitation and weaning potentials may not be established for each long-term IMV patient in Germany. As some respondents state, patient pathways may end up on a deadlock. Against this background, an urgent need to improve the healthcare for long-term IMV patients in Germany becomes apparent. Approaches to integrating the various sectors and professions, with particular attention on establishing continuing and needs-based processes and pathways should – as some interviewees also emphasize – be taken into account. To that effect, the interviewed professionals desire a binding and legal regulation of healthcare processes, that is also called for by different patient organizations, professional and expert associations (DIGAB, 2017; Windisch et al., 2019).

Several participants repeatedly highlighted that depending on their situation, IMV patients or other technology-dependent patient groups require a wide range of specialized health structures and services, ranging from acute care, rehabilitation and long-term to palliative care and involving various providers. Unfortunately, the well-known problems of the German health system, such as the strict separation of the inpatient and community sector (Advisory Council, 2014) provoke interface problems and severe consequences for the healthcare for long-term IMV patients. The German Advisory Council on the Assessment of Developments in the Health System repeatedly called for overcoming this health system fragmentation, the lack of transparency, and regulative restrictions on inter-professional collaboration and care continuity (ibid.). So far, with limited success.

The interviewees’ suggestions for German approaches that may contribute to improved healthcare for long-term IMV patients should ideally contain tertiary-expert-center based concepts at ventilation and weaning centers to continually provide specialized IMV expertise to professionals, patients and (informal) caregivers. Approaches should foster cross-sectoral collaboration and formal cooperation between organizations and professions, adopt telehealth interventions and should be supervised by an independent, central monitoring agency. Particular emphasis should be paid to evidence-informed concepts that enable graded, needs-based patient pathways through the health system. Inpatient expert center and rehabilitation capacities should be expanded to foster preventive and rehabilitative potentials of long-term IMV patients (DIGAB, 2017). In addition, palliative and end-of-life care expertise and structures should be expanded to adequately respond to patient needs and preferences, even if this leads to withdrawal or withholding treatment (Jox et al., 2012; Geiseler & Schönhofer, 2016).

These demands correspond to the principles inherent to healthcare integration (e.g., WHO, 2015), that has the potential to enhance healthcare quality and outcomes, especially for vulnerable patient groups with complex care needs with continuing, needs-based graded, inter-professional and cross-sectoral approaches (WHO, 2015; Baxter et al., 2018). As opposed to Germany, concepts aiming at integrating healthcare for long-term IMV patients and similar patient groups have already been implemented and utilized in countries like Canada, the United States or Spain. And although evidence on the feasibility and benefits of such concepts is limited, they seem to positively affect (patient-related) outcomes, care coordination, healthcare utilization or costs (Stark & Ewers, submitted). They should, therefore, be carefully considered and adopted for tackling existing challenges and further development of healthcare for long-term IMV patients and similar patient groups in Germany. Feasibility, effectiveness and efficiency of adequate concepts should be regionally piloted, scientifically evaluated and, if successful, implemented as comprehensively. Interestingly, most of the already existing concepts adopted a multi-professional approach, comprising at least clinical, home and social services, with advanced nursing professionals in charge of care coordination (Stark & Ewers, submitted). Following existing guidance, integrated approaches should involve various institutions and health professions from different sectors. This, in turn, requires a coordinated, cross-sectoral financing model legitimized by social law, as well as close coordination between different payers – for example, the German statutory health and the long-term care insurance. The German Code of Social Law for the statutory health insurance already provides corresponding legal opportunities for cross-sectoral collaboration and financing (e.g., § 140a Social Code of Law V) that should be carefully considered.

The four regions studied cover a wide range of social, demographic and infrastructural conditions in Germany. The study included the metropolis of Berlin with a high density of specialized care facilities, urban (Schwerin, Tübingen) and rural regions (Hof) of East and West Germany (Berlin, Mecklenburg-Western Pomerania, Baden-Wuerttemberg, Bavaria). Based on their characteristics, they can be considered exemplary for other German regions (Stark et al., 2016). However, generalizability and transferability of the study results are limited, since healthcare in Germany is highly regulated and governed at a federal state level, and previous studies revealed that regional disparities occur even in homogeneous health systems, such as Sweden (Laub et al., 2004). Limitations of the study also include a potential selection bias. In order to obtain different professional perspectives, we interviewed experts with a wide range of responsibilities, institutional and professional affiliations from different sectors and settings in each region. But due to differing regional health structures and limited research resources, the number of interviews per region was not determined by data saturation. Thus, certain regional perspectives may not have been taken into account.

Nevertheless, the results provide orientation in the cross-sectoral field of healthcare for long-term IMV patients with complex technology-intensive support needs, which has just recently gained attention at a health policy level. The results reveal knowledge gaps that should be addressed by future research.