Trends in specialized palliative care for non-cancer patients in Germany —Data from the National Hospice and Palliative Care Evaluation (HOPE)

Abstract

Introduction

The proportion of non-cancer patients (NCs) admitted to palliative care (PC) services increases steadily. Nevertheless, little is known not only about their specific problems, needs that have to be met, but also about improvements that have taken place already. This analysis focuses on developments seen in NC management concerning end-of-life care.

Methods

The German Hospice and Palliative Care Evaluation (HOPE) is a national long-term quality assurance project providing information on PC patients. Data from yearly evaluation periods between 2007 and 2011 are used to investigate differences between NC patients documented from 2002 to 2005 in symptoms, treatment and general condition.

Results

The proportion of NC patients increased from 3.5% (147 / 4182) to 8.1% (558 / 6854). NC patients, which are now referred to PC services, are younger, show less need for nursing support, die less often during inpatient stay. Overall a greater variety of diagnoses were found and patients suffer from less complex symptoms and problems at admission.

Conclusions

Despite the continuously growing number of patients with non-malignant diseases, their number in PC services is still low. As small steps in the right direction have been taken, integrating PC ideas earlier into treatment of chronic diseases to improve quality of life of NCs during the final stages of their diseases will continue to challenge the health care system in terms of workload, need of more staff and further training of medical professionals dealing with NCs in the future.

Introduction

Palliative care aims at multidimensional relief of suffering in case of incurable diseases. This approach is – regarding the definition of the WHO – not restricted to a certain illness or a defined group of diagnoses [1]. The majority of these patients with palliative care needs are cared for in primary care. However, for many years now it has been debated, that besides the well-recognized needs of cancer patients, also patients with non-cancer diseases with complex needs shall benefit from specialized palliative care. However this necessity is well described [2], [3], the international data on access of non-cancer patients to specialized palliative care institutions is still rather diverse. Some countries as the US with 62% have a high proportion of non-cancer patients in specialized care [4]. In Catalonia – the region in Spain where the WHO Project for Implementation of Palliative Care was performed – an equal distribution of cancer and non-cancer patients in specialized care was achieved [5]. But in many countries the rate is much lower for example UK (inpatient units 11%, outpatient services 24%) [6], Spain 5% [7] (except for Catalonia) or France 10% [7]. A European empirical multicenter study on patient demographics and center descriptions included data on 3013 patients from 143 palliative care units and showed that the overall proportion of non-cancer patients was only 6% [8].

This issue is becoming increasingly virulent as we know that age structure within western societies is continuously changing and health care systems have to adapt to these changes. The prospected demographic shift will lead to challenges concerning medical resources in general and end of life care in particular [9], [10]. A higher workload in fields such as cardiology, rheumatology, geriatrics as well as rising costs and more staff is needed to cope with these up-and-coming challenges. PC is not excluded from this development; in fact it might have to undergo significant adjustments as the numbers of patients with cancer (C) and non-cancer (NC) diseases are both predicted to increase significantly over the next 30 years [11]. The German federal government has hypothesized in 2007 that 10% of all dying people are in need of specialist palliative care whereas for 90% generalist palliative care in particular in primary care would be appropriate.

In many cases of progressive non-cancer diseases as for example COPD or heart failure phases of recurrent exacerbations with acute reduction in health and functional status may alternate with almost symptom-free intervals where patients feel better despite steady decline, right up until the next wave of affliction [12]. It is rather challenging to assess exactly when the steady decline of a chronic disease has reached a point, where a change from disease specific and life-prolonging therapy goals to PC is appropriate.

In the first years of the first decade of this century the access to specialized inpatient PC for patients with non-malignant diseases in Germany was considerably low. Our working group reported that in the years between 2002 and 2005 only 3.5% of all patients admitted to palliative care units had a non-cancer diagnosis [3]. If at all patients were admitted to the palliative care units they came comparatively late in the course of the disease in a low functional status with high symptom burden [3]. This low utilization of specialist palliative care is also described by other authors. For example in a very recent point prevalence survey on palliative care needs performed by To et al in three Australian hospitals 35% of the patients were classified as being in need for a palliative care approach. A little less than one third of the patients suffered from a non-malignant disease. Only 8% of these were known to the specialist palliative care team, whereas 55% of the cancer patients with palliative care needs have contact to specialist palliative care [13]. It was discussed whether these imbalances are due to some extent to the unpredictability of the disease trajectory [14], [15], to missing awareness of referrers for palliative care needs of this patient group and/or to barriers set up by the units due to concerns regarding resources [2] or specific expertise [14], [15].

Little is known how access to and palliative care needs of non-cancer patients in specialist palliative care has changed in the last decade in Germany. Therefore we performed this study to evaluate the development of NC in specialist PC over the last 10 years and to analyze whether key data (e.g. symptom burden, functional status) has changed over time. This study uses data from the Hospice and Palliative Evaluation (HOPE).