Comparison of terminally ill cancer- vs. non-cancer patients in specialized palliative home care in Germany – a single service analysis

During the last decades, hospice and PC has dynamically evolved in Europe [1]. One central development in Germany is the growing number of in- and outpatient palliative and hospice care services [2]. Parallel to this, first reimbursement models for inpatient and home PC have emerged. Furthermore, palliative medicine now plays a growing role in education for medical students, nurses and other healthcare professionals.

The PC approach was primarily developed to support incurable CA patients. Over the last decades, however, there has been growing evidence that also patients with non-malignant, progressive diseases are in need and may benefit from PC [3‐5]. This is underpinned by the fact that all “patients […] facing the problem associated with life-threatening illness” independent of their underlying primary disease are included in the World Health Organization’s (WHO’s) definition of PC [6]. However, in Germany - as in many other countries - barriers to palliative and hospice care for NCA patients still exist [7]. In fact the percentage of NCA patients receiving inpatient PC, for example, is rising while the overall percentage, however, is still disproportionately low [8, 9]. Taking projections of statistics on death and current findings into account, palliative and hospice care in Europe will face a growing number of patients suffering and dying from non-malignant diseases [10‐12].

Despite this protracted evolution, palliative home care for patients with NCA diseases is also increasingly deserving of attention [13]. In 2007, a national bill passed (§37b social security statutes book V), securing Germans with life limiting advanced diseases and complex needs the right to receive specialised PC at home [14]. Since then regional specialised palliative home care services (SPHC) have evolved throughout the country. The requirements for SPHC providers are uniform concerning staffing, quality, education and standards for adequate care provision. PC teams are composed of physicians and nurses supported by other professionals and therapists if necessary [15]. SPHC teams treat patients in their own homes, in nursing homes or hospices alongside (not replacing) their primary care doctors and nursing services. SPHC support (24/7) includes symptom control, counselling for patients and their relatives, professional and informal caregivers, and general practitioners, as well as organization, planning and coordination of involved services, interventions in medical or psycho-social crises, support in decision-making procedures and management of ethical conflicts. All that support is meant to enable patients to stay in their familiar environment until death, if possible.

The involvement of SPHC can be prescribed by a hospital physician or a practitioner. SPHC starts (almost) always, if formally prescribed, for at least the first 7 days and continues if the health insurance approves reimbursement of the costs [16]. The necessity for SPHC has to be re-evaluated on a regular basis. The main eligibility criteria for the SPHC service are i) advanced progressive disease, ii) at least two of seven complex symptom cluster (pain, respiratory-cardiac, neurologic-psychiatric-psychological, gastrointestinal, urogenital, ulcerated wounds or tumors, others) and iii) a necessity for 24/7 on-call service, avoidance for hospital readmission, expected crisis intervention or symptom management. The SPHC service is financed from a case compensation independent from care expenses.

To date limited data are available regarding the daily work of SPHC teams in Germany and, moreover, little specific data on SPHC for terminally ill patients suffering from non-malignant diseases who may have differing needs from CA patients receiving PC exist [5]. There are only few studies and comments focussed on the treatment of specific aspects [15] and the problems, chances and expectations of general practitioners cooperating with SPHC teams [16, 17]. One study on SPHC teams in Bavaria has taken place in 2013 and allows for broader information on organisation, performance and its effect on patients and their relatives [18]. Therefore, this single institution analysis investigates SPHC in Germany delivered for NCA and CA patients. Research on the access to and utilization of PC services is highly important in particular with respect to NCA patients who often have similar symptoms and needs as CA patients but seem to be underrepresented in PC services.

In Germany little is known about specialized PC at home for terminally ill patients suffering from non-malignant diseases. To the best of our knowledge, this is the first study comparing SPHC care for terminally ill NCA to CA patients. The central findings from this investigation point at disadvantageous differences of NCAs versus CAs regarding age, marital status and living situation, nursing care needs and restricted abilities for everyday life, the type of SPHC offered, re-admittance to hospital and place of death which is comparable to international research results [19].

The study subject shows the importance of taking into account the specific needs and characteristics of patients with NCA diseases in specialized palliative home care. Beside the distinction between CA and NCA patients, the results underline the influence of individual parameters such as the patient’s age, family status, living situation, symptoms and problems and time of access to SPHC.

The results of the investigation presented here show that end-of-life needs for PC in NCs are at least as complex and intense as they are in CAs [20]. The need for nursing assistance, medical equipment and the burden with symptoms are at a comparable level with CAs. The authors conclude that the integration of palliative home care takes place rather late in the disease trajectory of both NCAs and CAs as seen in the very short survival time for a considerable part of both patient groups. Therefore, the expansion of specialized PC structures and opportunities which meet the special needs of NCAs is urgently needed.

In both patient groups, the overall number of patients who were re-admitted to hospital was low. This may, on the one hand, be due to the frequent patient wishes to avoid re-admittance to hospital and to remain at home. On the other hand, these goals may also be encouraged by policy makers and health care insurances who intended SPHC teams to keep patients stable at home, while saving costs on expensive, long-term hospital stays [1, 12].

In Germany the access for NCA patients to palliative home care is still hampered. Two main reasons may be mentioned here. The national report of an evaluation of the permission of PC activities by German health care insurances shows that the coverage of costs for specialised home care PC was denied especially (I) if patients were privately insured or (II) were suffering from a non-malignant disease [6]. This hypothesis is reinforced by the fact that a higher proportion of NCA patients is, following primary inclusion, again discharged alive from SPHC, perhaps due to possible retraction of consent for reimbursement by their health care insurance. These aspects may at least in part help explain why we have not reached an equal distribution of diagnosis groups in palliative and hospice care services although this 50:50 distribution is expected for Europe in the upcoming years. Several barriers and challenges why non-cancer patients are under-represented on the caseloads of community Macmillan specialist palliative care nurses were also reported by Andrews and colleagues (2011). The authors argue that especially the viewpoints of patients and carers should be considered and new innovative models of service delivery be developed [21].

The local situation found in our study is congruent to the development in other countries such as the UK. For the UK the National Survey of Patient Activity Data for Specialist Palliative Care Services from 2010–2011 summarizes that there, as well, only 21 % of all home care patients had a primary NCA diagnosis [22], with a similar distribution for circulatory, respiratory and neurological diseases.

Steps in the right direction have been made and positive trends can be seen in the development of PC internationally [23], but still a lot of work and initiatives are needed to influence policy and develop adequate long-term financing structures for NCA patients with PC needs [24].

Main findings indicate that the proportion of NCA patients among all patients receiving SPHC was high in the investigated single service, but in accordance to an overall assessments of SPHC in Bavaria and therefore rather representative [18]. They have severe PC needs but relatively late access to PC services.

Although more and more patients suffering from non-malignant diseases are equally in need of specialist PC as CA patients and are slowly getting access to PC and hospice services, financing models are still not adequate. More political developments are needed to fill this gap.