European Journal of Internal Medicine 25 (2014) 187–192
Contents lists available at ScienceDirect
European Journal of Internal Medicine journal homepage: www.elsevier.com/locate/ejim
Original article
Trends in specialized palliative care for non-cancer patients in Germany —Data from the National Hospice and Palliative Care Evaluation (HOPE) Stephanie Hess a, Stephanie Stiel a, Sonja Hofmann a, Carsten Klein a, Gabriele Lindena b, Christoph Ostgathe a,⁎ a b
Department of Palliative Medicine, Comprehensive Cancer Center, CCC Erlangen —EMN, Friedrich-Alexander-Universität Erlangen-Nürnberg, University Hospital Erlangen, Erlangen, Germany Clinical Analysis, Research and Application (CLARA), Kleinmachnow, Germany
a r t i c l e
i n f o
Article history: Received 15 October 2013 Received in revised form 25 November 2013 Accepted 27 November 2013 Available online 2 January 2014 Keywords: Non-cancer Palliative care End-of-life Documentation
a b s t r a c t 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. © 2013 European Federation of Internal Medicine. Published by Elsevier B.V. All rights reserved.
1. 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 ⁎ Corresponding author at: Department of Palliative Medicine, University Hospital Erlangen, Krankenhausstraße 12, 91054 Erlangen, Germany. Tel.: +49 9131 8534064. E-mail address: [email protected] (C. Ostgathe).
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
0953-6205/$ – see front matter © 2013 European Federation of Internal Medicine. Published by Elsevier B.V. All rights reserved. http://dx.doi.org/10.1016/j.ejim.2013.11.012
188
S. Hess et al. / European Journal of Internal Medicine 25 (2014) 187–192
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 lifeprolonging 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). 2. Methods 2.1. 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 procedures and measures implemented to aid the patient [15,17] and a validated symptom and problem checklist (HOPE-SPCHL) with 16 items (8 on physical, 4 on psychological, 2 on nursing and 2 on social issues) [18]. All items are assessed by health care professionals on admission and at the end of treatment (discharge/death). Every year, during a defined three month evaluation period, all participating institutions submit data sets (anonymized) of 30 consecutive patients to avoid selection bias via web to a central database. This data is used for benchmarking and research. Every unit receives feedback regarding comparison to other units. It has been used for several surveys in Germany and more detailed information on the establishment of HOPE and the changes made over time have been published previously elsewhere [19–22]. 2.2. Study setting This study uses secondary evaluations of available HOPE data from 2007 to 2011. For this analysis exclusively data from inpatient palliative care units were used. In Germany, palliative care units are medical units, integrated into hospitals. They are funded by health care insurance and patients die on the unit or they are discharged home or to the hospice,
when sufficient control of the complex needs is achieved. Hospices are differently funded, focus on nursing needs, are freestanding, have no doctors employed and patients remain there until they die. Patients are mainly treated by their general practitioner. Data from hospice patients were not analyzed here. In 2007, 67 out of 139 inpatient palliative care units have been taking part in the evaluation, in 2008 51/166, in 2009 57/186, in 2010 56/207 and in 2011 50/231 [23,24]. This data set is compared to data from the years 2002–2005 [3]. For this investigation no additional data collection has been done. Only deidentified data were saved and processed electronically. The institutional ethics review board was consulted, but did not raise any ethical or legal concerns against this research approach. The project did not include any changes in the care or treatment of PC patients. Ethical issues have been discussed with the working group.
2.3. Data analysis Statistical evaluation was performed using IBM SPSS Statistics 21.0 for Windows. HOPE data documented at the time of admission for all patients treated in an inpatient palliative care unit between 2007 and 2011 are used for analysis here. Descriptive analyses are calculated for demographic and diseaserelated data. Prevalence of symptoms and problems with higher intensity (grades 2 and 3/moderate and severe) at the time of admission was determined. For group allocation, NC was defined as patients if only non-cancer, but no cancer diagnoses were recorded. Patients having no malignant diseases, but receiving PC because of burdening symptoms and problems (ICD R00-R94) were analyzed as NC patients. Patients with a documented primary non-cancer diagnosis and mixed additional cancer disease (e.g. chronic heart failure and secondary melanoma) were excluded from the analysis, because the data would not allow determining the specific disease (C/NC) that has caused the admission. Patients having a primary cancer diagnosis leading to palliative care treatment and additional non-cancer comorbidities were defined as cancer patients. In a few cases there were systemic mistakes, where the cases in question had to be excluded from the study. Missing values in a majority of items in the HOPE assessment have led to omission of several hundred cases that were finally excluded from all analysis. Results from the current analysis are contrasted to results from a former analysis of HOPE data from 2002 to 2005 published by Ostgathe et al. [3].
3. Results 3.1. 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 system increased as well, from 4.1% (6 / 147) to 10.8% (60 / 558). Respiratory diagnoses and general symptoms, signs and abnormal clinical and laboratory findings that were not elsewhere classified also gained importance, whereas musculoskeletal diagnoses decreased from 8.2% (12 / 147) to 3.6% (20 / 558). The most frequent diagnoses among NC patients are led by chronic heart failure (6.3%, 35 / 558), COPD and spinal muscular atrophy (4.8%, 27 / 558 each) and apoplexy (4.5%, 25 / 558, see Tables 2 and 3).
S. Hess et al. / European Journal of Internal Medicine 25 (2014) 187–192
189
Table 1 Sociodemographic, nursing and disease-related information in absolute (N) and relative numbers (in %) on patients suffering non-cancer primary diagnosis regarding HOPE evaluation periods 2002–2005 (N = 147) vs. 2007–2011 (N = 558); missing values (MV).
Demographic data
Performance status (ECOG)
Nursing levels (according to German long-term legislation)
End of therapy
Non-cancer patients N = 147 (3.5%) 2002–2005
Non-cancer patients N = 558 (8.1%) 2007–2011
Gender
Female 62.6%
Age (years)
N = 147 Mean 75.0 SD ± 13.8
Descriptive data
N = 147 Mean 3.24 SD ± 1.3
ECOG 3 or 4 (3: Capable of only limited self-care, confined to bed or chair more than 50% of waking hours 4: Completely disabled) None
85.0%
Female 56.6% MV 8 (1.4%) N = 539 Mean 73.8 SD ± 13.8 MV 19 (3.4%) N = 528 Mean 3.51 SD ± 0.8 MV 30 (5.4%) 84.4%
29.9%
27.6%
Applied for 1: Necessary support for a minimum of two activities in fields of body care, eating and mobility (at least once a day), housekeeping (at least several times a week); overall duration of care at least 90 min a day 2: Necessary support at least three times a day with an overall (average) duration of minimum three hours daily 3: Perpetual need of support (including during night time), average duration of at least 5 h a day 3+: Special cases of hardship with an excessive high need for support Missing values Length of stay (days)
10.2% 14.3%
8.1% 15.1%
15.6%
19.5%
17.0% 1.4%
11.1% 0.7% 100 (17.9%) N = 407 Mean 12.6 SD ± 10.9 MV 151 (27.1%) 41.0% MV 116 (20.8%)
Deceased
3.2. Demographic and person-related data NCs admitted to palliative care units are younger (mean 75.0 years versus 73.8 years) than in 2002–2005. The proportion of female patients decreased from 62.6% to 56.6% (316 / 558, see Table 1). When admitted to PC services, NCs were documented at a lower overall performance status (ECOG 3 or 4), but less likely demanded high levels of nursing care support (steps 3 and 3+).1 3.3. Disease- and symptom-related data In terms of symptom burden, a slightly bigger proportion of NCs was affected by moderate to severe vomiting and loss of appetite, albeit other symptoms and problems were documented less frequently in the period under review (see Table 4). In 2007–2011 patients tended to stay longer at inpatient PC services, but a considerably lower rate died during their stay (57.2% versus 41.0% (229 / 558), see Table 1). 4. 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.
1 According to the German long-term care legislation patients have to apply for a nursing level in order to receive financial aids. The grouping to a certain level implies a dedicated need for nursing support: Level 1: at least 1.5 h per day need in assistance with body care, feeding, mobilization and housing; Level 2: at least 3 h per day; Level 3: at least 5 h per day; Level 3+: at least 5 h per day and additional need in assistance with artificial home ventilation.
N = 147 Mean 10.2 57.2%
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 “Charter for the Care of the critically ill and the Dying in Germany” with a focus on the care for multimorbid patients in older ages and b) the introduction of a German law in 2007 guaranteeing citizens the right to receive specialist palliative care if needed at the end of life independent from their primary diagnosis have been made, trends seen in the findings from the study presented here are rather not associated to specific regulatory developments in Germany. The authors suggest that improving knowledge and education for physicians in palliative care (by now more than 7000 physicians completed a modular subspecialization for palliative care), and an increasing perception and awareness of end-of-life issues in the broad public in Germany have contributed to these changes. As the proportion of NCs will probably further continue to increase, a better understanding of their specific needs and problems is of urgent need, hand in hand with a roundup of what has been accomplished in NC patient care and what is still to be done. Currently, there are controversial discussions and competing views, whether cancer and non-cancer patients have the same needs for specialist palliative care at their end of life. Solano et al. conclude from a comparison of symptom prevalence at the end of life that there seems to be a rather common pathway towards death for both patient groups with malignant and nonmalignant diseases [25]. Nevertheless, data from the German Hospice and Palliative Care Evaluation (HOPE) has shown that especially the functional status ECOG is lower, and symptoms such as dyspnea, weakness, tiredness and disorientation/confusion are even more common and of higher intensity than in cancer patients. Also the need for nursing support in daily activities was higher in patients with non-malignant diseases than in cancer patients [3]. Concluding from these findings, the low utilization of specialist palliative care by patients with non-malignant diseases rather reflects an impeded access to these structures for this patient group.
190
S. Hess et al. / European Journal of Internal Medicine 25 (2014) 187–192
Table 2 Absolute (N) and relative number (in %) of primary diseases in non-cancer patients regarding evaluation periods 2002–2005 (N = 147) and 2007–2011 (N = 558). Non-cancer patients
ICD-10
N (%) 2002–2005
N (%) 2007–2011
Diseases of the circulatory system Diseases of the nervous system Diseases of the respiratory system Diseases of the digestive system Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified Diseases of the genitourinary system Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism Diseases of the musculoskeletal system and connective tissue Endocrine, nutritional and metabolic diseases Certain infectious and parasitic diseases Mental and behavioral disorders Injury, poisoning and certain other consequences of external causes Other diseases Missing value Overall
I00–I99 G00–G99 J00–J99 K00–K93 R00–R99
30 (20.4) 44 (29.9) 13 (8.8) 6 (4.1)
140 (25.1) 98 (17.6) 66 (11.8) 60 (10.8) 47 (8.4)
N00–N99 D50–D90
10 (6.8) 9 (6.1)
32 (5.7) 25 (4.5)
M00–M99 E00–E90 A00–B99 F00–F99 S00–T98
12 (8.2) 6 (4.1)
20 (3.6) 18 (3.2) 15 (2.7) 13 (2.3) 13 (2.3) 9 (1.6) 2 (0.4) 558 (100)
17 (11.6) 147 (100)
Not only the number but also the characteristics of patients have changed over time. When nowadays admitted to PC, NCs demand lower levels of care, are younger and come with less moderate or severe symptoms, die less often during inpatients stay, which may illustrate lesser overall complexity of their disease that PC services have to deal with. These developments can imply beneficial efforts in terms of a trend to a better “in-time” integration of specialized palliative care into the disease trajectory. To date it is unclear to what extent this is due to a greater awareness for palliative care needs in other medical specialties or to a greater openness of specialized services to accept NC patients. In 2002–2005 the most common NC diagnoses on admission were neurological diseases here in particular amyotrophic lateral sclerosis. Due to its foreseeable trajectory amyotrophic lateral sclerosis has always been seen as a paradigmatic diagnosis that in particular in later stages of the disease benefits from palliative care. In comparison to other NC diseases this may have historically facilitated access both for staff and referrers. In the period under review all diagnosis groups increased, but noticeably the range has changed. While absolute numbers of patients from all NC disease groups have increased, there has been a change in the case mix, primarily due to an increase in patients suffering from cardiovascular diseases, rather than a decrease in other disease groups. In the studied period diseases of the circulatory system became the most common diagnosis on admission in the NC subgroup. This trend may be due to a slowly adopting awareness for beneficial effects of palliative care for patients suffering e.g. from progressing failure of internal organs and their relatives. Also team members from internal medicine and palliative care are supposed to benefit from early cooperation in their workload and quality of care for affected patients [22,26]. Here more education, training and information should be made available for staff needed to continue to improve this development. Despite high prevalence, psychological burden is often underrecognized in PC [27]. In our population in particular the psychological symptoms (feeling depressed, anxiety, tension, disorientation/confusion) were documented less commonly. If not under recognized this may be partially explained by the detected shift in diagnoses and characteristics Table 3 Most frequent non-cancer diagnoses in HOPE 2007–2011 (N = 558) in absolute (N) and relative numbers (in %). Diagnosis
ICD-10
N
%
Chronic heart failure Spinal muscular atrophy COPD Cerebral infarction Renal failure
I50 G12 J44 I63 N18
35 27 27 25 19
6.3 4.8 4.8 4.5 3.4
(age, need for support) of the patients. It has been found that symptom burden and necessities of older patients differ from patients entering palliative care at a younger age [28]. Patients diagnosed with dementia carry a higher risk of experiencing psychological burden [29]. However more training in detecting psychological burden [30,31] is needed to further improve support in psychological issues. For cancer patients it is broadly discussed that an early integration of palliative care may be beneficial [32,33]. To date no data is available on a potential effect of early palliative care for NC patients. In the current discussion integrated pathways [34–36] as more concerted and collaborative approaches [37] are seen as key for successful management of chronic non-malignant diseases. The treatment of chronic illnesses has to go from merely focusing on alleviating acute episodes in a hospital to a greater extent of primary care [38] that includes thorough therapy plans and continuous check-ups. For hospitals in Germany strengthening Palliative Consultation Teams that serve as a bridge and enable advance care planning could foster the development. Other regions, like the Catalonia WHO Demonstration Project, where NCs make up an approximately equal percentage in PC patients, can serve here as a blueprint to learn from: multidisciplinary teams, access to rapid consultation, telephone support programs, coordinated and integrated care and assessment tools as well as symptom checklists to properly identify patients in need irrespective of the underlying diagnosis [5]. Above that existing identification algorithms need to be validated and evaluated before they can incorporated into the German healthcare system [39,40]. Table 4 Comparison of moderate-to-severe symptom and problem intensities in non-cancer patients from 2002 to 2005 (N = 147) vs. 2007 to 2011 (N = 558); missing values (MV). HOPE symptom and problem checklist
2002–2005 N = 147
2007–2011 N = 558
Pain Nausea Vomiting Dyspnoea Constipation Weakness Loss of appetite Tiredness Wound care problems Assistance with ADL Feeling depressed Anxiety Tension Disorientation/confusion Problems with organization of care Overburdening of family
49.0 17.1 8.2 40.0 34.0 92.3 55.5 75.4 40.3 90.3 35.9 45.9 51.9 32.1 55.4 59.4
41.8 (MV 6.3) 15.6 (MV 7.2) 10.8 (MV 5.9) 38.6 (MV 5.0) 32.4 (MV 8.6) 86.9 (MV 6.6) 58.2 (MV 13.6) 70.2 (MV 9.9) 28.5 (MV 10.4) 85.5 (MV 6.6) 29.4 (MV 18.1) 35.8 (MV 15.2) 41.4 (MV 13.3) 28.9 (MV 15.9) 48.2 (MV 11.6) 59.2 (MV 11.6)
S. Hess et al. / European Journal of Internal Medicine 25 (2014) 187–192
4.1. Study limitations Despite the considerable number of patients included in this study, there are some limitations that might have influenced the results. During the period of the study the absolute number of palliative care units that contribute to the database and their constellation changed, what might have led to changes of data overtime. Different team members of PC units are engaged in documenting data for HOPE. As a consequence different understandings of items might occur and therefore various inconsistencies in the end result are inevitable [41]. Since HOPE does not have an immediate effect on neither the patients' treatment nor evaluates the professionals' work, there might be a lack of motivation to complete the HOPE assessment thoroughly. Staff assessment of symptoms and problems may have biased the results [13,42]. But due to the nature of palliative care many patients suffer from cognitive impairment hindering constant self-assessment. For those who are capable, self-assessment would have provided more accurate results [19]. But to ensure assessment independently from individual cognitive capability we used with HOPE-SPCL a nationally widely accepted and validated proxy assessment tool in all patients. Furthermore, it is a challenge to categorize PC patients in terms of a strict segregation between C and NC diagnoses. The majority of documented patients showed rather multiple comorbidities, which do occur not only within the group NCs, but also in Cs. Additionally, HOPE is designed for all PC patients, with no specific assessment items for NCs. Also, since NC numbers are so low, it is hard to group them up, so a broad generalization of that heterogeneous group had to be made. 5. 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 understanding of palliative care needs, the timing of integration and the strategies for symptom management as well as for disease management in this specific patient population have to emerge substantially. Learning points Comparing data sets from 2002 to 2005 and 2007 to 2011: • The proportion of NC patients rose from 3.5% to 8.1%. • NCs were admitted to PC services at younger age. • When referred to PC, NC patients suffered from less severe symptom and problem intensities. • A shift in most frequent diagnoses from diseases of the nervous system to diseases concerning the circulatory system. • 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
191
Association. This analysis did not receive any other funding or educational grant. The present work was performed in fulfillment of the requirements for obtaining the doctoral title “Dr. med.” of the first author. References [1] World Health Organization. Definition of palliative care. http://who.int/cancer/ palliative/definition/en/; 2002. [accessed 03 January 2013]. [2] Addington-Hall J, Fakhoury W, McCarthy M. Specialist palliative care in nonmalignant disease. Palliat Med 1998;12:417–27. [3] Ostgathe C, Alt-Epping B, Golla H, Gaertner J, Lindena G, Radbruch L, et al. Non-cancer patients in specialized palliative care in Germany: what are the problems? Palliat Med 2011;25:148–52. [4] National Hospice and Palliative Care Organization. HHPCO facts and figures: hospice care in America; 2012. [5] Gomez-Batiste X, Caja C, Espinosa J, Bullich I, Martinez-Munoz M, Porta-Sales J, et al. The Catalonia World Health Organization demonstration project for palliative care implementation: quantitative and qualitative results at 20 years. J Pain Symptom Manage 2012;43:783–94. [6] National Council for Palliative Care. National Survey of patient activity data for specialist palliative care services. MDS full report for the year 2010–2011; 2012. [7] EAPC. Task force and the development of palliative care in Europe. http://www. eapc-taskforce-development.eu/; 2013. [accessed 12 March 2013]. [8] Kaasa S, Torvik K, Cherny N, Hanks G, DeConno F. Patient demographics and centre description in European palliative care units. Palliat Med 2007;21:15–22. [9] Boland J, Johnson M. End-of-life care for non-cancer patients. BMJ Support Palliat Care 2013;3:2–3. [10] Piers R, Pautex S, Curale V, Pfisterer M, Van Nes MC, Rexach L, et al. Palliative care for the geriatric patient in Europe. Z Gerontol Geriatr 2010;43:381–5. [11] The National Counsil for Palliative Care and National Care Forum. A 2030 vision. http://www.ncpc.org.uk/sites/default/files/2030Vision.pdf; 2012. [accessed 02 July 2013]. [12] Murray S, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ 2005;330:1007–11. [13] To TH, Greene AG, Agar MR, Currow DC. A point prevalence survey of hospital inpatients to define the proportion with palliation as the primary goal of care and the need for specialist palliative care. Intern Med J 2011;41:430–3. [14] Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax 2000;55:1000–6. [15] O'Leary N, Tiernan E. Survey of specialist palliative care services for noncancer patients in Ireland and perceived barriers. Palliat Med 2008;22:77–83. [16] HOPE Clara. Exposé. http://www.hope-clara.de/download/HOPE2012Expose.pdf; 2012. [accessed 03 January 2013]. [17] HOPE Clara. https://www.hope-clara.de/download/HOPE2009Basisbogen.pdf; 2009. [accessed 03 January 2013]. [18] Stiel S, Pollok A, Elsner F, Lindena G, Ostgathe C, Nauck F, et al. Validation of the symptom and problem checklist of the German Hospice and Palliative Care Evaluation (HOPE). J Pain Symptom Manage 2012;43:593–605. [19] Jansky M, Lindena G, Nauck F. Well-being of patients receiving specialized palliative care at home or in hospital. Schmerz 2012;26:46–53. [20] Radbruch L, Nauck F, Fuchs M, Neuwohner K, Schulenberg D, Lindena G. What is palliative care in Germany? Results from a representative survey. J Pain Symptom Manage 2002;23:471–83. [21] Radbruch L, Nauck F, Ostgathe C, Elsner F, Bausewein C, Fuchs M, et al. What are the problems in palliative care? Results from a representative survey. Support Care Cancer 2003;11:442–51. [22] Radbruch L, Ostgathe C, Elsner F, Nauck F, Bausewein C, Fuchs M, et al. What is the profile of palliative care in Germany. Results of a representative survey. Schmerz 2004;18:179–88. [23] Deutsche Gesellschaft für Palliativmedizin. Entwicklung der stationären Hospize und Palliativstationen einschl. der Einrichtungen für Kinder. http:// www.dgpalliativmedizin.de/images/stories/Entwicklung_stat_Hospize_und_ Palliativstationen_1996-2011.JPG; 2011. [accessed 22 November 2013]. [24] HOPE Clara. Overwiev. http://www.hope-clara.de/; 2012. [accessed 03 January 2013]. [25] Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage 2006;31:58–69. [26] Gaertner J, Simon S, Voltz R. Palliative medicine and advanced incurable illness. Internist (Berl) 2011;52:20 [22-7]. [27] Juliao M, Barbosa A. Depression in palliative care: prevalence and assessment. Acta Med Port 2011;24:807–18. [28] Olden A, Holloway R, Ladwig S, Quill T, Van Wijngaarden E. Palliative care needs and symptom patterns of hospitalized elders referred for consultation. J Pain Symptom Manage 2011;42:410–8. [29] Ryan T, Ingleton C, Gardiner C, Parker C, Gott M, Noble B. Symptom burden, palliative care need and predictors of physical and psychological discomfort in two UK hospitals. BMC Palliat Care 2013;12. [30] McCabe MP, Mellor D, Davison TE, Hallford DJ, Goldhammer DL. Detecting and managing depressed patients: palliative care nurses' self-efficacy and perceived barriers to care. J Palliat Med 2012;15:463–7. [31] Signer M. Depression in palliative care. Ther Umsch 2012;69:99–106.
192
S. Hess et al. / European Journal of Internal Medicine 25 (2014) 187–192
[32] Lazenby JM, Saif MW. Palliative care from the beginning of treatment for advanced pancreatic cancer. Highlights from the “2010 ASCO Gastrointestinal Cancers Symposium”. Orlando, FL, USA. January 22–24, 2010, 11(2). JOP; 2010. p. 154–7. [33] Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733–42. [34] Payne S, Kerr C, Hawker S, Seamark D, Davis C, Roberts H, et al. Community hospitals: an under-recognized resource for palliative care. J R Soc Med 2004;97:428–31. [35] Coventry PA, Grande GE, Richards DA, Todd CJ. Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review. Age Ageing 2005;34:218–27. [36] Effiong A, Effiong AI. Palliative care for the management of chronic illness: a systematic review study protocol. BMJ Open 2012;2.
[37] Fallon M, Foley P. Rising to the challenge of palliative care for non-malignant disease. Palliat Med 2012;26:99–100. [38] Gardiner C, Barnes S, Small N, Gott M, Payne S, Seamark D, et al. Reconciling informed consent and ‘do no harm’: ethical challenges in palliative-care research and practice in chronic obstructive pulmonary disease. Palliat Med 2010;24:469–72. [39] Farnon C, Hofman M. Factors contributing to late hospice admission and proposals for change. Am J Hosp Palliat Care Med 1997;14:212–8. [40] Harrold J, Rickerson BA, Carrol JT, McGrath J, Morales K, Kapo J, et al. Is the palliative performance scale a useful predictor of mortality in a heterogeneous hospice population? Palliat Med 2005;8:503–9. [41] Stiel S, Hollberg C, Pestinger M, Ostgathe C, Nauck F, Lindena G, et al. Subjective definitions of problems and symptoms in palliative care. Palliat Care Res Treat 2011;5:1–7. [42] Hodgkins M, Albert D, Daltroy L. Comparing patients' and their physicians' assessments of pain. Pain 1985;23:273–7.
Contents lists available at ScienceDirect
European Journal of Internal Medicine journal homepage: www.elsevier.com/locate/ejim
Original article
Trends in specialized palliative care for non-cancer patients in Germany —Data from the National Hospice and Palliative Care Evaluation (HOPE) Stephanie Hess a, Stephanie Stiel a, Sonja Hofmann a, Carsten Klein a, Gabriele Lindena b, Christoph Ostgathe a,⁎ a b
Department of Palliative Medicine, Comprehensive Cancer Center, CCC Erlangen —EMN, Friedrich-Alexander-Universität Erlangen-Nürnberg, University Hospital Erlangen, Erlangen, Germany Clinical Analysis, Research and Application (CLARA), Kleinmachnow, Germany
a r t i c l e
i n f o
Article history: Received 15 October 2013 Received in revised form 25 November 2013 Accepted 27 November 2013 Available online 2 January 2014 Keywords: Non-cancer Palliative care End-of-life Documentation
a b s t r a c t 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. © 2013 European Federation of Internal Medicine. Published by Elsevier B.V. All rights reserved.
1. 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 ⁎ Corresponding author at: Department of Palliative Medicine, University Hospital Erlangen, Krankenhausstraße 12, 91054 Erlangen, Germany. Tel.: +49 9131 8534064. E-mail address: [email protected] (C. Ostgathe).
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
0953-6205/$ – see front matter © 2013 European Federation of Internal Medicine. Published by Elsevier B.V. All rights reserved. http://dx.doi.org/10.1016/j.ejim.2013.11.012
188
S. Hess et al. / European Journal of Internal Medicine 25 (2014) 187–192
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 lifeprolonging 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). 2. Methods 2.1. 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 procedures and measures implemented to aid the patient [15,17] and a validated symptom and problem checklist (HOPE-SPCHL) with 16 items (8 on physical, 4 on psychological, 2 on nursing and 2 on social issues) [18]. All items are assessed by health care professionals on admission and at the end of treatment (discharge/death). Every year, during a defined three month evaluation period, all participating institutions submit data sets (anonymized) of 30 consecutive patients to avoid selection bias via web to a central database. This data is used for benchmarking and research. Every unit receives feedback regarding comparison to other units. It has been used for several surveys in Germany and more detailed information on the establishment of HOPE and the changes made over time have been published previously elsewhere [19–22]. 2.2. Study setting This study uses secondary evaluations of available HOPE data from 2007 to 2011. For this analysis exclusively data from inpatient palliative care units were used. In Germany, palliative care units are medical units, integrated into hospitals. They are funded by health care insurance and patients die on the unit or they are discharged home or to the hospice,
when sufficient control of the complex needs is achieved. Hospices are differently funded, focus on nursing needs, are freestanding, have no doctors employed and patients remain there until they die. Patients are mainly treated by their general practitioner. Data from hospice patients were not analyzed here. In 2007, 67 out of 139 inpatient palliative care units have been taking part in the evaluation, in 2008 51/166, in 2009 57/186, in 2010 56/207 and in 2011 50/231 [23,24]. This data set is compared to data from the years 2002–2005 [3]. For this investigation no additional data collection has been done. Only deidentified data were saved and processed electronically. The institutional ethics review board was consulted, but did not raise any ethical or legal concerns against this research approach. The project did not include any changes in the care or treatment of PC patients. Ethical issues have been discussed with the working group.
2.3. Data analysis Statistical evaluation was performed using IBM SPSS Statistics 21.0 for Windows. HOPE data documented at the time of admission for all patients treated in an inpatient palliative care unit between 2007 and 2011 are used for analysis here. Descriptive analyses are calculated for demographic and diseaserelated data. Prevalence of symptoms and problems with higher intensity (grades 2 and 3/moderate and severe) at the time of admission was determined. For group allocation, NC was defined as patients if only non-cancer, but no cancer diagnoses were recorded. Patients having no malignant diseases, but receiving PC because of burdening symptoms and problems (ICD R00-R94) were analyzed as NC patients. Patients with a documented primary non-cancer diagnosis and mixed additional cancer disease (e.g. chronic heart failure and secondary melanoma) were excluded from the analysis, because the data would not allow determining the specific disease (C/NC) that has caused the admission. Patients having a primary cancer diagnosis leading to palliative care treatment and additional non-cancer comorbidities were defined as cancer patients. In a few cases there were systemic mistakes, where the cases in question had to be excluded from the study. Missing values in a majority of items in the HOPE assessment have led to omission of several hundred cases that were finally excluded from all analysis. Results from the current analysis are contrasted to results from a former analysis of HOPE data from 2002 to 2005 published by Ostgathe et al. [3].
3. Results 3.1. 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 system increased as well, from 4.1% (6 / 147) to 10.8% (60 / 558). Respiratory diagnoses and general symptoms, signs and abnormal clinical and laboratory findings that were not elsewhere classified also gained importance, whereas musculoskeletal diagnoses decreased from 8.2% (12 / 147) to 3.6% (20 / 558). The most frequent diagnoses among NC patients are led by chronic heart failure (6.3%, 35 / 558), COPD and spinal muscular atrophy (4.8%, 27 / 558 each) and apoplexy (4.5%, 25 / 558, see Tables 2 and 3).
S. Hess et al. / European Journal of Internal Medicine 25 (2014) 187–192
189
Table 1 Sociodemographic, nursing and disease-related information in absolute (N) and relative numbers (in %) on patients suffering non-cancer primary diagnosis regarding HOPE evaluation periods 2002–2005 (N = 147) vs. 2007–2011 (N = 558); missing values (MV).
Demographic data
Performance status (ECOG)
Nursing levels (according to German long-term legislation)
End of therapy
Non-cancer patients N = 147 (3.5%) 2002–2005
Non-cancer patients N = 558 (8.1%) 2007–2011
Gender
Female 62.6%
Age (years)
N = 147 Mean 75.0 SD ± 13.8
Descriptive data
N = 147 Mean 3.24 SD ± 1.3
ECOG 3 or 4 (3: Capable of only limited self-care, confined to bed or chair more than 50% of waking hours 4: Completely disabled) None
85.0%
Female 56.6% MV 8 (1.4%) N = 539 Mean 73.8 SD ± 13.8 MV 19 (3.4%) N = 528 Mean 3.51 SD ± 0.8 MV 30 (5.4%) 84.4%
29.9%
27.6%
Applied for 1: Necessary support for a minimum of two activities in fields of body care, eating and mobility (at least once a day), housekeeping (at least several times a week); overall duration of care at least 90 min a day 2: Necessary support at least three times a day with an overall (average) duration of minimum three hours daily 3: Perpetual need of support (including during night time), average duration of at least 5 h a day 3+: Special cases of hardship with an excessive high need for support Missing values Length of stay (days)
10.2% 14.3%
8.1% 15.1%
15.6%
19.5%
17.0% 1.4%
11.1% 0.7% 100 (17.9%) N = 407 Mean 12.6 SD ± 10.9 MV 151 (27.1%) 41.0% MV 116 (20.8%)
Deceased
3.2. Demographic and person-related data NCs admitted to palliative care units are younger (mean 75.0 years versus 73.8 years) than in 2002–2005. The proportion of female patients decreased from 62.6% to 56.6% (316 / 558, see Table 1). When admitted to PC services, NCs were documented at a lower overall performance status (ECOG 3 or 4), but less likely demanded high levels of nursing care support (steps 3 and 3+).1 3.3. Disease- and symptom-related data In terms of symptom burden, a slightly bigger proportion of NCs was affected by moderate to severe vomiting and loss of appetite, albeit other symptoms and problems were documented less frequently in the period under review (see Table 4). In 2007–2011 patients tended to stay longer at inpatient PC services, but a considerably lower rate died during their stay (57.2% versus 41.0% (229 / 558), see Table 1). 4. 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.
1 According to the German long-term care legislation patients have to apply for a nursing level in order to receive financial aids. The grouping to a certain level implies a dedicated need for nursing support: Level 1: at least 1.5 h per day need in assistance with body care, feeding, mobilization and housing; Level 2: at least 3 h per day; Level 3: at least 5 h per day; Level 3+: at least 5 h per day and additional need in assistance with artificial home ventilation.
N = 147 Mean 10.2 57.2%
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 “Charter for the Care of the critically ill and the Dying in Germany” with a focus on the care for multimorbid patients in older ages and b) the introduction of a German law in 2007 guaranteeing citizens the right to receive specialist palliative care if needed at the end of life independent from their primary diagnosis have been made, trends seen in the findings from the study presented here are rather not associated to specific regulatory developments in Germany. The authors suggest that improving knowledge and education for physicians in palliative care (by now more than 7000 physicians completed a modular subspecialization for palliative care), and an increasing perception and awareness of end-of-life issues in the broad public in Germany have contributed to these changes. As the proportion of NCs will probably further continue to increase, a better understanding of their specific needs and problems is of urgent need, hand in hand with a roundup of what has been accomplished in NC patient care and what is still to be done. Currently, there are controversial discussions and competing views, whether cancer and non-cancer patients have the same needs for specialist palliative care at their end of life. Solano et al. conclude from a comparison of symptom prevalence at the end of life that there seems to be a rather common pathway towards death for both patient groups with malignant and nonmalignant diseases [25]. Nevertheless, data from the German Hospice and Palliative Care Evaluation (HOPE) has shown that especially the functional status ECOG is lower, and symptoms such as dyspnea, weakness, tiredness and disorientation/confusion are even more common and of higher intensity than in cancer patients. Also the need for nursing support in daily activities was higher in patients with non-malignant diseases than in cancer patients [3]. Concluding from these findings, the low utilization of specialist palliative care by patients with non-malignant diseases rather reflects an impeded access to these structures for this patient group.
190
S. Hess et al. / European Journal of Internal Medicine 25 (2014) 187–192
Table 2 Absolute (N) and relative number (in %) of primary diseases in non-cancer patients regarding evaluation periods 2002–2005 (N = 147) and 2007–2011 (N = 558). Non-cancer patients
ICD-10
N (%) 2002–2005
N (%) 2007–2011
Diseases of the circulatory system Diseases of the nervous system Diseases of the respiratory system Diseases of the digestive system Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified Diseases of the genitourinary system Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism Diseases of the musculoskeletal system and connective tissue Endocrine, nutritional and metabolic diseases Certain infectious and parasitic diseases Mental and behavioral disorders Injury, poisoning and certain other consequences of external causes Other diseases Missing value Overall
I00–I99 G00–G99 J00–J99 K00–K93 R00–R99
30 (20.4) 44 (29.9) 13 (8.8) 6 (4.1)
140 (25.1) 98 (17.6) 66 (11.8) 60 (10.8) 47 (8.4)
N00–N99 D50–D90
10 (6.8) 9 (6.1)
32 (5.7) 25 (4.5)
M00–M99 E00–E90 A00–B99 F00–F99 S00–T98
12 (8.2) 6 (4.1)
20 (3.6) 18 (3.2) 15 (2.7) 13 (2.3) 13 (2.3) 9 (1.6) 2 (0.4) 558 (100)
17 (11.6) 147 (100)
Not only the number but also the characteristics of patients have changed over time. When nowadays admitted to PC, NCs demand lower levels of care, are younger and come with less moderate or severe symptoms, die less often during inpatients stay, which may illustrate lesser overall complexity of their disease that PC services have to deal with. These developments can imply beneficial efforts in terms of a trend to a better “in-time” integration of specialized palliative care into the disease trajectory. To date it is unclear to what extent this is due to a greater awareness for palliative care needs in other medical specialties or to a greater openness of specialized services to accept NC patients. In 2002–2005 the most common NC diagnoses on admission were neurological diseases here in particular amyotrophic lateral sclerosis. Due to its foreseeable trajectory amyotrophic lateral sclerosis has always been seen as a paradigmatic diagnosis that in particular in later stages of the disease benefits from palliative care. In comparison to other NC diseases this may have historically facilitated access both for staff and referrers. In the period under review all diagnosis groups increased, but noticeably the range has changed. While absolute numbers of patients from all NC disease groups have increased, there has been a change in the case mix, primarily due to an increase in patients suffering from cardiovascular diseases, rather than a decrease in other disease groups. In the studied period diseases of the circulatory system became the most common diagnosis on admission in the NC subgroup. This trend may be due to a slowly adopting awareness for beneficial effects of palliative care for patients suffering e.g. from progressing failure of internal organs and their relatives. Also team members from internal medicine and palliative care are supposed to benefit from early cooperation in their workload and quality of care for affected patients [22,26]. Here more education, training and information should be made available for staff needed to continue to improve this development. Despite high prevalence, psychological burden is often underrecognized in PC [27]. In our population in particular the psychological symptoms (feeling depressed, anxiety, tension, disorientation/confusion) were documented less commonly. If not under recognized this may be partially explained by the detected shift in diagnoses and characteristics Table 3 Most frequent non-cancer diagnoses in HOPE 2007–2011 (N = 558) in absolute (N) and relative numbers (in %). Diagnosis
ICD-10
N
%
Chronic heart failure Spinal muscular atrophy COPD Cerebral infarction Renal failure
I50 G12 J44 I63 N18
35 27 27 25 19
6.3 4.8 4.8 4.5 3.4
(age, need for support) of the patients. It has been found that symptom burden and necessities of older patients differ from patients entering palliative care at a younger age [28]. Patients diagnosed with dementia carry a higher risk of experiencing psychological burden [29]. However more training in detecting psychological burden [30,31] is needed to further improve support in psychological issues. For cancer patients it is broadly discussed that an early integration of palliative care may be beneficial [32,33]. To date no data is available on a potential effect of early palliative care for NC patients. In the current discussion integrated pathways [34–36] as more concerted and collaborative approaches [37] are seen as key for successful management of chronic non-malignant diseases. The treatment of chronic illnesses has to go from merely focusing on alleviating acute episodes in a hospital to a greater extent of primary care [38] that includes thorough therapy plans and continuous check-ups. For hospitals in Germany strengthening Palliative Consultation Teams that serve as a bridge and enable advance care planning could foster the development. Other regions, like the Catalonia WHO Demonstration Project, where NCs make up an approximately equal percentage in PC patients, can serve here as a blueprint to learn from: multidisciplinary teams, access to rapid consultation, telephone support programs, coordinated and integrated care and assessment tools as well as symptom checklists to properly identify patients in need irrespective of the underlying diagnosis [5]. Above that existing identification algorithms need to be validated and evaluated before they can incorporated into the German healthcare system [39,40]. Table 4 Comparison of moderate-to-severe symptom and problem intensities in non-cancer patients from 2002 to 2005 (N = 147) vs. 2007 to 2011 (N = 558); missing values (MV). HOPE symptom and problem checklist
2002–2005 N = 147
2007–2011 N = 558
Pain Nausea Vomiting Dyspnoea Constipation Weakness Loss of appetite Tiredness Wound care problems Assistance with ADL Feeling depressed Anxiety Tension Disorientation/confusion Problems with organization of care Overburdening of family
49.0 17.1 8.2 40.0 34.0 92.3 55.5 75.4 40.3 90.3 35.9 45.9 51.9 32.1 55.4 59.4
41.8 (MV 6.3) 15.6 (MV 7.2) 10.8 (MV 5.9) 38.6 (MV 5.0) 32.4 (MV 8.6) 86.9 (MV 6.6) 58.2 (MV 13.6) 70.2 (MV 9.9) 28.5 (MV 10.4) 85.5 (MV 6.6) 29.4 (MV 18.1) 35.8 (MV 15.2) 41.4 (MV 13.3) 28.9 (MV 15.9) 48.2 (MV 11.6) 59.2 (MV 11.6)
S. Hess et al. / European Journal of Internal Medicine 25 (2014) 187–192
4.1. Study limitations Despite the considerable number of patients included in this study, there are some limitations that might have influenced the results. During the period of the study the absolute number of palliative care units that contribute to the database and their constellation changed, what might have led to changes of data overtime. Different team members of PC units are engaged in documenting data for HOPE. As a consequence different understandings of items might occur and therefore various inconsistencies in the end result are inevitable [41]. Since HOPE does not have an immediate effect on neither the patients' treatment nor evaluates the professionals' work, there might be a lack of motivation to complete the HOPE assessment thoroughly. Staff assessment of symptoms and problems may have biased the results [13,42]. But due to the nature of palliative care many patients suffer from cognitive impairment hindering constant self-assessment. For those who are capable, self-assessment would have provided more accurate results [19]. But to ensure assessment independently from individual cognitive capability we used with HOPE-SPCL a nationally widely accepted and validated proxy assessment tool in all patients. Furthermore, it is a challenge to categorize PC patients in terms of a strict segregation between C and NC diagnoses. The majority of documented patients showed rather multiple comorbidities, which do occur not only within the group NCs, but also in Cs. Additionally, HOPE is designed for all PC patients, with no specific assessment items for NCs. Also, since NC numbers are so low, it is hard to group them up, so a broad generalization of that heterogeneous group had to be made. 5. 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 understanding of palliative care needs, the timing of integration and the strategies for symptom management as well as for disease management in this specific patient population have to emerge substantially. Learning points Comparing data sets from 2002 to 2005 and 2007 to 2011: • The proportion of NC patients rose from 3.5% to 8.1%. • NCs were admitted to PC services at younger age. • When referred to PC, NC patients suffered from less severe symptom and problem intensities. • A shift in most frequent diagnoses from diseases of the nervous system to diseases concerning the circulatory system. • 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
191
Association. This analysis did not receive any other funding or educational grant. The present work was performed in fulfillment of the requirements for obtaining the doctoral title “Dr. med.” of the first author. References [1] World Health Organization. Definition of palliative care. http://who.int/cancer/ palliative/definition/en/; 2002. [accessed 03 January 2013]. [2] Addington-Hall J, Fakhoury W, McCarthy M. Specialist palliative care in nonmalignant disease. Palliat Med 1998;12:417–27. [3] Ostgathe C, Alt-Epping B, Golla H, Gaertner J, Lindena G, Radbruch L, et al. Non-cancer patients in specialized palliative care in Germany: what are the problems? Palliat Med 2011;25:148–52. [4] National Hospice and Palliative Care Organization. HHPCO facts and figures: hospice care in America; 2012. [5] Gomez-Batiste X, Caja C, Espinosa J, Bullich I, Martinez-Munoz M, Porta-Sales J, et al. The Catalonia World Health Organization demonstration project for palliative care implementation: quantitative and qualitative results at 20 years. J Pain Symptom Manage 2012;43:783–94. [6] National Council for Palliative Care. National Survey of patient activity data for specialist palliative care services. MDS full report for the year 2010–2011; 2012. [7] EAPC. Task force and the development of palliative care in Europe. http://www. eapc-taskforce-development.eu/; 2013. [accessed 12 March 2013]. [8] Kaasa S, Torvik K, Cherny N, Hanks G, DeConno F. Patient demographics and centre description in European palliative care units. Palliat Med 2007;21:15–22. [9] Boland J, Johnson M. End-of-life care for non-cancer patients. BMJ Support Palliat Care 2013;3:2–3. [10] Piers R, Pautex S, Curale V, Pfisterer M, Van Nes MC, Rexach L, et al. Palliative care for the geriatric patient in Europe. Z Gerontol Geriatr 2010;43:381–5. [11] The National Counsil for Palliative Care and National Care Forum. A 2030 vision. http://www.ncpc.org.uk/sites/default/files/2030Vision.pdf; 2012. [accessed 02 July 2013]. [12] Murray S, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ 2005;330:1007–11. [13] To TH, Greene AG, Agar MR, Currow DC. A point prevalence survey of hospital inpatients to define the proportion with palliation as the primary goal of care and the need for specialist palliative care. Intern Med J 2011;41:430–3. [14] Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax 2000;55:1000–6. [15] O'Leary N, Tiernan E. Survey of specialist palliative care services for noncancer patients in Ireland and perceived barriers. Palliat Med 2008;22:77–83. [16] HOPE Clara. Exposé. http://www.hope-clara.de/download/HOPE2012Expose.pdf; 2012. [accessed 03 January 2013]. [17] HOPE Clara. https://www.hope-clara.de/download/HOPE2009Basisbogen.pdf; 2009. [accessed 03 January 2013]. [18] Stiel S, Pollok A, Elsner F, Lindena G, Ostgathe C, Nauck F, et al. Validation of the symptom and problem checklist of the German Hospice and Palliative Care Evaluation (HOPE). J Pain Symptom Manage 2012;43:593–605. [19] Jansky M, Lindena G, Nauck F. Well-being of patients receiving specialized palliative care at home or in hospital. Schmerz 2012;26:46–53. [20] Radbruch L, Nauck F, Fuchs M, Neuwohner K, Schulenberg D, Lindena G. What is palliative care in Germany? Results from a representative survey. J Pain Symptom Manage 2002;23:471–83. [21] Radbruch L, Nauck F, Ostgathe C, Elsner F, Bausewein C, Fuchs M, et al. What are the problems in palliative care? Results from a representative survey. Support Care Cancer 2003;11:442–51. [22] Radbruch L, Ostgathe C, Elsner F, Nauck F, Bausewein C, Fuchs M, et al. What is the profile of palliative care in Germany. Results of a representative survey. Schmerz 2004;18:179–88. [23] Deutsche Gesellschaft für Palliativmedizin. Entwicklung der stationären Hospize und Palliativstationen einschl. der Einrichtungen für Kinder. http:// www.dgpalliativmedizin.de/images/stories/Entwicklung_stat_Hospize_und_ Palliativstationen_1996-2011.JPG; 2011. [accessed 22 November 2013]. [24] HOPE Clara. Overwiev. http://www.hope-clara.de/; 2012. [accessed 03 January 2013]. [25] Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage 2006;31:58–69. [26] Gaertner J, Simon S, Voltz R. Palliative medicine and advanced incurable illness. Internist (Berl) 2011;52:20 [22-7]. [27] Juliao M, Barbosa A. Depression in palliative care: prevalence and assessment. Acta Med Port 2011;24:807–18. [28] Olden A, Holloway R, Ladwig S, Quill T, Van Wijngaarden E. Palliative care needs and symptom patterns of hospitalized elders referred for consultation. J Pain Symptom Manage 2011;42:410–8. [29] Ryan T, Ingleton C, Gardiner C, Parker C, Gott M, Noble B. Symptom burden, palliative care need and predictors of physical and psychological discomfort in two UK hospitals. BMC Palliat Care 2013;12. [30] McCabe MP, Mellor D, Davison TE, Hallford DJ, Goldhammer DL. Detecting and managing depressed patients: palliative care nurses' self-efficacy and perceived barriers to care. J Palliat Med 2012;15:463–7. [31] Signer M. Depression in palliative care. Ther Umsch 2012;69:99–106.
192
S. Hess et al. / European Journal of Internal Medicine 25 (2014) 187–192
[32] Lazenby JM, Saif MW. Palliative care from the beginning of treatment for advanced pancreatic cancer. Highlights from the “2010 ASCO Gastrointestinal Cancers Symposium”. Orlando, FL, USA. January 22–24, 2010, 11(2). JOP; 2010. p. 154–7. [33] Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733–42. [34] Payne S, Kerr C, Hawker S, Seamark D, Davis C, Roberts H, et al. Community hospitals: an under-recognized resource for palliative care. J R Soc Med 2004;97:428–31. [35] Coventry PA, Grande GE, Richards DA, Todd CJ. Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review. Age Ageing 2005;34:218–27. [36] Effiong A, Effiong AI. Palliative care for the management of chronic illness: a systematic review study protocol. BMJ Open 2012;2.
[37] Fallon M, Foley P. Rising to the challenge of palliative care for non-malignant disease. Palliat Med 2012;26:99–100. [38] Gardiner C, Barnes S, Small N, Gott M, Payne S, Seamark D, et al. Reconciling informed consent and ‘do no harm’: ethical challenges in palliative-care research and practice in chronic obstructive pulmonary disease. Palliat Med 2010;24:469–72. [39] Farnon C, Hofman M. Factors contributing to late hospice admission and proposals for change. Am J Hosp Palliat Care Med 1997;14:212–8. [40] Harrold J, Rickerson BA, Carrol JT, McGrath J, Morales K, Kapo J, et al. Is the palliative performance scale a useful predictor of mortality in a heterogeneous hospice population? Palliat Med 2005;8:503–9. [41] Stiel S, Hollberg C, Pestinger M, Ostgathe C, Nauck F, Lindena G, et al. Subjective definitions of problems and symptoms in palliative care. Palliat Care Res Treat 2011;5:1–7. [42] Hodgkins M, Albert D, Daltroy L. Comparing patients' and their physicians' assessments of pain. Pain 1985;23:273–7.
