ALS is a rare disease that requires complex treatment and comprehensive (home) care. As curative therapy is not available, patients require counselling and symptomatic palliative treatment, as recommended in the S1 guidelines of the German network of neurologists. (1) Patients, caregivers and HCPs are faced with a variety of complex needs and difficult ethical questions that cannot be easily answered by a single HCP. Furthermore, due to the advanced stage of diagnosis, there is a need for a rapidly growing, dynamic interdisciplinary care network. The coordination of this network can be overwhelming for those involved.
Best patient-centred (palliative) home care for ALS patients in the region includes comprehensive information about local services and physicians who provide home visits. Insufficient knowledge of treatment and care pathways and lack of experience with ALS patients leads to problems and mistrust between HCPs in maintaining appropriate treatment and home care. Our data confirm that there is a lack of a common outcome value Q, mainly due to the constraints of daily practice, organisational routines, communication failures, lack of transparency and limited resources (lack of a shared care goal and binding agreements). The absence of common care goals can lead to mistrust, particularly in situations such as mechanical ventilation, psychological treatment, or ethical dilemmas, where a lack of knowledge and misinformation exists within the care network. This results in additional organisational and communicative efforts for each person, leading to time-consuming exchange within the care network. When making decisions with serious consequences, such as withdrawing or refusing ventilatory support, our data shows that the individual behaviour and actions of HCPs involved are not related to group behaviour and form sub-assemblies. ALS patients, caregivers and HCPs would clearly benefit from early integration of specialist palliative care, as emergency plans drafted in accordance with patients, a comprehensive care plan including coordination and advance care planning are often missing.
The central role of coordinating the care network was claimed by various HCPs. GPs play a central role in the German healthcare system in channelling patient treatment and care pathways. In contrast, some HCPs stated that the main coordinator should be a neurologist, as ALS is a neurological disease. (21) However, neurologists in Germany do not provide home visits, and both the neurologist and the GP are usually not available outside consultation hours. Therefore, no support can be guaranteed for crises that occur in the home environment. The data unveils that an unattractive remuneration system (uneven payoffs) within an ALS home care network has a negative impact on availability and may lead to a passing-on of responsibilities.
As part of our study, we observed uneven financial systems that lead to insufficient home care for ALS patients (4) as the actions of the multi-agent network are bound by limited resources such as time, daily routines and economical behaviour. Although in Germany most specialists and therapists do not visit patients at home due to unattractive renumeration and lack of resources, our study discovered that some HCPs were available as part of informal networks or as a favour to a friend, albeit in most cases only for situations with dire needs. However, this left most patients with advanced ALS without continuity of care in the home care sector. Support in the home setting relies on knowledge and personal commitment of single HCPs, but physicians have little time for phone calls during and outside of their office hours. Most of the interviewed HCPs showed reluctance to invest more time to optimise treatment and care pathways (non-cooperative). To maintain the best quality of life for patients with a life-threatening disease, the healthcare system (statutory and private health insurance schemes) should implement adequate incentives for home visits of specialists.
This gap of home visits by HCPs could be closed by the timely involvement of a multi-professional specialist palliative home care team. These teams are available 24/7, have profound knowledge of cooperating healthcare providers and services in the region and ensure an equal flow of information between all persons involved. Nevertheless, as our regional sample shows, these teams would need to ensure that they collaborate with neurologists and outpatient clinics for ALS patients and improve their own expertise in the care of ALS patients.
Emphasis was placed on multi-professional and interdisciplinary collaboration, which requires organisational, coordination and communication skills. Quantitative data from healthcare facilities in NRW show that palliative care and neurology believe that coordinating and responding to the complex needs of patients and caregivers is part of their service. However, most experts confirmed that patients and caregivers are left alone in managing access to highly diverse specialists and the communication flow in the care network. Using game theory, we observed 'mass actions' without full information about a common patient-centred care goal.
In summary, our study makes clear that coordination of all HCPs involved is a prerequisite for an effective, well-functioning care network that is able to respond to the complex needs of patients and provide sufficient support. Integration of specialist palliative home care teams may not be necessary in care networks if there is a clearly communicated responsible person due to the compassionate behaviour and personal investment of a single person (GP, neurologist or nursing service) with sufficient expertise in case management; a clearly communicated responsible person. However, our data has shown that the latter is not the case. Thus, to keep the personal burden low for all HCPs involved and while keeping the personal engagement high it is beneficial to involve a specialist palliative home care team to find consensus on treatment goals, develop a care plan including emergency planning, and support the patient and caregivers with advance care planning.
The application of Nash's theory of non-cooperative games helps to understand the complexity of factors that affect the outcome of multi-dynamic actions within a network. When, as shown by our data, certain regulations in the German healthcare system and actions of HCPs will lead to high costs and low benefits for single entities (Nash`s equilibrium), this is not only true on the financial level, but also on the qualitative level of care, care continuity, patient safety, and effectiveness and job satisfaction of HCPs.