Original articleTrends in specialized palliative care for non-cancer patients in Germany —Data from the National Hospice and Palliative Care Evaluation (HOPE)
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).
Section snippets
Hospice and Palliative Evaluation (HOPE)
In 1996, the German Federal Ministry of Health initiated a working group, to develop and establish a standard documentation tool for PC settings in Germany [16]. Since 1999, HOPE has been used continuously in a growing number of palliative care units, hospices and outpatient services throughout the country. It contains a minimal data set with personal information on patients (e.g. their social situation, gender, birth year, etc.), the state of disease, current medication, as well as various
Study population
Apart from a larger overall number of patients that were documented (4182 versus 6854) the proportion of NCs has increased from 3.5% (147 / 4182) to 8.1% (558 / 6854, see Table 1). Within the most common NC diagnoses a shift could be detected: where diseases of the nervous system used to present the highest number (29.9%, 44 / 147), it has now reached 17.6% (98 / 558). Diagnoses associated with the circulatory system, however, increased from 20.4% (30 / 147) to 25.1% (140 / 558). Diseases of the digestive
Discussion
Considering the fact that more than twice as much people die from non-malignant causes than from cancer [25], NCs are still considerably under-represented in specialized inpatient PC services in Germany, but a positive trend can be observed that is comparable to other European countries. In 2002–2005 NCs made up 3.5% of the patients. In the period under review this proportion was more than doubled. Nevertheless, the proportion is still low. Although first efforts like a) the development of a
Conclusions
Specialist palliative care for non-cancer patients in Germany is growing but still far from what is needed. The majority of these patients with palliative care needs will be cared for in primary care. However, when the detected trend is stable in the next years the number of NC patients in specialized palliative care will further increase. This trend will be a challenge for the health care system as the existing services may not be capable to cope with the increasing patient load. Therefore the
Learning points
Comparing data sets from 2002 to 2005 and 2007 to 2011:
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The proportion of NC patients rose from 3.5% to 8.1%.
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NCs were admitted to PC services at younger age.
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When referred to PC, NC patients suffered from less severe symptom and problem intensities.
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A shift in most frequent diagnoses from diseases of the nervous system to diseases concerning the circulatory system.
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The rate of deaths during inpatient stay sank from 57.2% to 41.0%.
Conflict of interests
The authors have no conflict of interests to declare.
Acknowledgments
HOPE is coordinated by experts of the German Palliative Care Association, the German Hospice Association, and the German Cancer Association. Its original development was supported by an unrestricted grant of Mundipharma GmbH, Limburg. By now the running costs are financed through the participating units and the German Palliative Care Association. This analysis did not receive any other funding or educational grant.
The present work was performed in fulfillment of the requirements for obtaining
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