R Voltz

University of Cologne, Köln, North Rhine-Westphalia, Germany

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Publications (287)844.5 Total impact

  • J Strupp · R Voltz · H Golla ·
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    ABSTRACT: Patients severely affected by multiple sclerosis (MS) have a large range of unmet needs. Although initially counterintuitive, specialized palliative care (PC) may be beneficial for these patients and their relatives. PC has advanced greatly in recent years, yet it is still predominantly tumour patients who profit from this. For MS, a first randomized phase II trial has already demonstrated significant benefits for patients and their caregivers when PC was included in their care. However, there are barriers: neurologists not convinced about PC, or PC not taking on MS patients. Studies have shown that misunderstandings and a lack of information among healthcare professionals about the roles and services of PC for MS are still prevalent. This topical review will give an overview of the unmet needs of patients as well as the possible benefits and barriers of PC for MS, and will describe models of services on how to "open locked doors".
    Multiple Sclerosis 10/2015; DOI:10.1177/1352458515608262 · 4.82 Impact Factor
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    ABSTRACT: Background and purpose: The European Association of Palliative Care Taskforce, in collaboration with the Scientific Panel on Palliative Care in Neurology of the European Federation of Neurological Societies (now the European Academy of Neurology), aimed to undertake a review of the literature to establish an evidence-based consensus for palliative and end of life care for patients with progressive neurological disease, and their families. Methods: A search of the literature yielded 942 articles on this area. These were reviewed by two investigators to determine the main areas and the subsections. A draft list of papers supporting the evidence for each area was circulated to the other authors in an iterative process leading to the agreed recommendations. Results: Overall there is limited evidence to support the recommendations but there is increasing evidence that palliative care and a multidisciplinary approach to care do lead to improved symptoms (Level B) and quality of life of patients and their families (Level C). The main areas in which consensus was found and recommendations could be made are in the early integration of palliative care (Level C), involvement of the wider multidisciplinary team (Level B), communication with patients and families including advance care planning (Level C), symptom management (Level B), end of life care (Level C), carer support and training (Level C), and education for all professionals involved in the care of these patients and families (Good Practice Point). Conclusions: The care of patients with progressive neurological disease and their families continues to improve and develop. There is a pressing need for increased collaboration between neurology and palliative care.
    European Journal of Neurology 10/2015; DOI:10.1111/ene.12889 · 4.06 Impact Factor
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    ABSTRACT: Objective: Desires for hastened death (DHD; wish to hasten death is also in use) are prevalent in terminally ill patients. Studies show that health professionals (HP) are often underprepared when presented with DHD. HPs in specialized palliative care (SPC-HP) often encounter DHD. This study aimed to identify SPC-HP responses to DHD in daily practice and their corresponding functions. Methods: Narrative interviews were conducted with 19 SPC-HPs at four German University Hospitals. Transcripts were analyzed using the documentary method. An inventory of established responses to DHD was compiled, and their corresponding functions in the context of the patient-SPC-HP interaction were reconstructed. Results: Twelve response categories and six corresponding functions were identified. On the patient level, responses categorized as symptom control, exploring the reasons and generating perspective, reorientation, and hope were particularly used to ease the patient's burden. On the interaction level, creating a relationship was fundamental. On the SPC-HP level, various methods served the functions self-protection and showed professional expertise. Conclusions: Profound personal and professional development is necessary to respond to the inherent challenges presented by DHD. Establishing helpful relationships with patients is essential regardless of SPC-HP specialization. SPC-HPs should maximize their skills in establishing and maintaining relationships as well as strengthening their own resilience, possibly in specific training courses. Copyright © 2015 John Wiley & Sons, Ltd.
    Psycho-Oncology 09/2015; DOI:10.1002/pon.3959 · 2.44 Impact Factor
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    ABSTRACT: Randomized controlled trials (RCTs) are important sources of information on the benefits and harms patients may expect from treatment options. The aim of this structured literature review by the German Institute for Quality and Efficiency in Health Care was to explore whether and how the end-of-life (EoL) situation of patients with advanced cancer is considered in RCTs investigating anti-cancer treatments. Our journal pool comprised 19 medical journals, namely five preselected key general medical journals as well as 14 specialist journals (mainly cancer) identified via a scoping search. We systematically searched these journals in MEDLINE to identify RCTs investigating anti-cancer treatments for the following four cancer types: glioblastoma, lung cancer (stage IIIb-IV), malignant melanoma (stage IV), and pancreatic cancer (search via OVID; November 2012). We selected a representative sample of 100 publications, that is, the 25 most recent publications for each cancer type. EoL was defined as a life expectancy of ≤ two years. We assessed the information provided on (1) the descriptions of the terminal stage of the disease, (2) the therapeutic goal (i.e. the intended therapeutic benefit of the intervention studied), (3) the study endpoints assessed, (4) the authors' concluding appraisal of the intervention's effects, and (5) the terminology referring to the patients' EoL situation. Median survival was ≤ one year for each of the four cancer types. Descriptions of the terminal stage of the disease were ambiguous or lacking in 29/100 publications. One or more therapeutic goals were mentioned in 51/100 publications; these goals were patient-relevant in 38 publications (survival alone: 30/38; health-related quality of life (HRQoL) or HRQoL and survival: 6/38; symptom control or symptom control and survival: 2/38). Primary endpoints included survival (50%), surrogates (44%), and safety (3%). Patient-reported outcomes (PROs) were assessed in 36/100 RCTs. The implications of treatment-related harms for the patients were discussed in 22/100 appraisals. Terminology referring to the patients' EoL situation (e.g. "terminal") was scarce, whereas terms suggesting control of the disease (e.g. "cancer control") were common. The EoL situation of patients with advanced cancer should be more carefully considered in clinical trials. Although the investigation and robust reporting of PROs is a prerequisite for informed decision-making in healthcare, they are rarely defined as endpoints and HRQoL is rarely mentioned as a therapeutic goal. Suggestions for improving standards for study design and reporting are presented.
    PLoS ONE 09/2015; 10(9-9):e0136640. DOI:10.1371/journal.pone.0136640 · 3.23 Impact Factor
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    ABSTRACT: Multiple sclerosis (MS) patients' caregivers are sometimes considered as "hidden patients." How much more this might be true for caregivers of severely affected MS patients has so far been scarcely studied. Palliative care also addressing relatives' needs might therefore be very relevant for these caregivers. However, we do not yet know which unmet needs they have and how these could be met. Our aim was to gain an insight into the subjectively unmet needs of caregivers of severely affected MS patients in Germany. The study employed a qualitative cross-sectional approach for assessing unmet needs. Twelve caregivers of severely affected MS patients were recruited using a convenience sampling approach. Face-to-face interviews were conducted, audiotaped, and transcribed verbatim, followed by qualitative content analysis. Unmet needs were sorted into the following categories: "relationship to physician," "individual support by the healthcare system," "relationship to the individual severely affected by MS," "end-of-life issues," "self-care," and "higher awareness of MS." Caregivers tended to group the unmet needs of their care recipients with their own and rarely focused on their own wishes and restrictions. A close patient-caregiver dyad makes it difficult to differentiate unmet caregiver needs. However, the palliative care approach might help caregivers of severely affected MS patients by answering questions on disease progress and end-of-life issues, as well as by offering respite care, support for self-care, and help in preserving one's identity, and also anticipating the time to come after the death.
    Palliative and Supportive Care 06/2015; DOI:10.1017/S1478951515000607 · 0.98 Impact Factor
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    Raymond Voltz ·

    The Lancet Neurology 05/2015; 261(7). DOI:10.1016/S1474-4422(15)00103-9 · 21.90 Impact Factor
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    Langversion 1.0, 2015, AWMF-Registernummer: 128/001OL 05/2015; Leitlinienprogramm Onkologie der Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften e. V. (AWMF), Deutschen Krebsgesellschaft e. V. (DKG) und Deutschen Krebshilfe (DKH).
  • Raymond Voltz · Klaus Maria Perrar ·
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    ABSTRACT: „Der Patient möchte sterben ...“ Mit dieser Aussage beginnen viele Diskussionen, gerade in der aktuellen Debatte um den ärztlich assistierten Suizid, und sofort wird auch über die Gebote und Verbote seiner Umsetzung gesprochen. Als klinisch Tätige erleben wir jedoch, dass die Realität nicht so einfach ist.
    MMW Fortschritte der Medizin 04/2015; 157(6):60-3. DOI:10.1007/s15006-015-2921-9
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    ABSTRACT: To determine sensitivity and specificity of a standardized recombinant cell-based indirect immunofluorescence assay (RC-IFA) for anti-Tr antibodies in comparison to a reference procedure. Delta/Notch-like epidermal growth factor-related receptor (DNER) was expressed in HEK293 and used as a substrate for RC-IFA. HEK293 control cells expressing CDR2/Yo and CDR2L as well as mock-transfected HEK293 cells were used as controls. Serum samples from 38 patients with anti-Tr antibodies (33 with paraneoplastic cerebellar degeneration [PCD] and Hodgkin lymphoma), 66 patients with anti-Tr-negative PCD, 53 patients with Hodgkin lymphoma without neurologic symptoms, 40 patients with rheumatic diseases, and 42 healthy blood donors were tested for anti-DNER reactivity in the RC-IFA. In addition, RC-IFA results were compared to those from a commercial tissue-based IFA using monkey cerebellum. Using the RC-IFA, anti-DNER was detected in all anti-Tr-positive patients but in none of the controls (sensitivity 100%, 95% confidence interval [CI] 92.8%-100%; specificity 100%, 95% CI 98.7%-100%). In comparison, anti-Tr was not detected in 4 samples with low-titer autoantibodies using the commercial tissue-based assay. Preadsorption of sera with either recombinant full-length DNER or its extracellular domain selectively abolished anti-Tr reactivity. Anti-Tr antibodies bind to the extracellular domain of DNER and can be detected by RC-IFA using HEK293 cells expressing the recombinant receptor. The new method performs better than a frequently used commercial tissue-based indirect immunofluorescence assay (IFA) in samples with low-titer antibodies. This study provides Class II evidence that RC-IFA accurately detects anti-Tr as compared to conventional IFA.
    04/2015; 2(2):e68. DOI:10.1212/NXI.0000000000000068
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    ABSTRACT: Some patients with advanced and progressive diseases express a desire to hasten death. This study evaluated the motivations of patients expressing such a desire in a country with prohibitive legislation on euthanasia and physician-assisted suicide. A modified form of Grounded Theory was used. Patients from the departments of palliative medicine in three hospitals in Germany were recruited when they had made a statement or request to hasten death. Participants were interviewed face to face. Recruitment was stopped with 12 participants because of data saturation. Thematic analysis revealed three main motivational themes: self-determination, agony, and time. Expectations toward health professionals, attitudes toward death, and secureness related to the end of life were additional main themes emerging from the analysis. The desire to hasten death may be used as an extreme coping strategy to maintain control against anticipated agony. Patients expected health professionals to listen to and respect their experiences. Emerging hypotheses included the following: (a) patients try to balance life time and anticipated agony, and the perception of time is distressing in this balancing act; (b) anticipated images of agony and suffering in the dying process occur frequently and are experienced by patients as intrusive; (c) patients expressing a desire to hasten death are in need of more information about the dying process; and (d) patients wanted their caregivers to listen to and respect their wish to hasten death, and they did not expect the caregivers to understand this as an order to actually hasten their death. © The Author(s) 2015.
    Palliative Medicine 03/2015; 29(8). DOI:10.1177/0269216315577748 · 2.86 Impact Factor
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    ABSTRACT: Background: Episodic breathlessness is one form of refractory breathlessness. Better understanding of the symptom is necessary for effective management.Aim: The aim was to describe the characteristics of episodic breathlessness in patients with advanced chronic obstructive pulmonary disease or lung cancer.Design: This is a longitudinal cohort study. Outcomes were assessed monthly by up to 13 telephone interviews: peak severity (modified Borg scale: 0–10), duration, frequency, and timing of breathlessness episodes. Data from each episode were pooled and analyzed using descriptive statistics. Associations between outcomes were explored by correlation coefficients.Setting/participants: Patients with chronic obstructive pulmonary disease (Global Initiative for Chronic Obstructive Lung Disease classification stage III or IV) or primary lung cancer (any stage) were recruited in two inpatient units (internal medicine) and two outpatient clinics in Oldenburg, Germany.Results: A total of 82 patients (50 chronic obstructive pulmonary disease, 32 lung cancer), mean age (standard deviation) 67 years (8 years) and 36% female, were included reporting on 592 breathlessness episodes (chronic obstructive pulmonary disease: 403, lung cancer: 189). Peak severity was perceived significantly higher in chronic obstructive pulmonary disease patients than in lung cancer patients (mean (standard deviation) Borg scale: 6.2 (2.1) vs 4.2 (1.9); p < 0.001). Episodes described by chronic obstructive pulmonary disease patients were longer than those described by lung cancer patients (median (range): 7 min (0–600) vs 5 min (0.3–120), p = 0.002)). Frequency was similar and most often daily in both groups. Severity and frequency of episodes were correlated in lung cancer patients (r = 0.324, p = 0.009).Conclusion: Most breathlessness episodes are short (minutes) and severe with significant differences between chronic obstructive pulmonary disease and lung cancer patients. Effective management strategies are warranted to improve symptom relief and coping.
    Palliative Medicine 01/2015; DOI:10.1177/0269216314563428 · 2.86 Impact Factor
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    ABSTRACT: To compare the mortality of patients in a palliative care unit on working days with that on weekends and public holidays. Retrospective database study. Palliative care unit in Germany. All admissions to palliative care unit between 1 January 1997 and 31 December 2008. The impact of day type (working days or weekends and public holidays) on mortality was analysed using Poisson regression models. A total of 2565 admitted patients and 1325 deaths were recorded. Of the deaths, 448 (33.8%) occurred on weekends and public holidays. The mortality rate on weekends and public holidays was 18% higher than that on working days (mortality rate ratio 1.18, 95% confidence interval 1.05 to 1.32; P=0.005). Patients in the palliative care unit were at higher risk of dying on weekends and public holidays. In the absence of a prospective study, the exact reasons for this correlation are unclear. © Voltz et al 2014.
    BMJ Clinical Research 12/2014; 349(dec16 2):g7370. DOI:10.1136/bmj.g7370 · 14.09 Impact Factor
  • S T Simon · V Weingärtner · R Voltz · C Bausewein ·
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    ABSTRACT: Background: Similar to pain, refractory breathlessness can occur episodically. Episodic Breathlessness is a distressing symptom in patients with advanced life-limiting disease. The lack of a universal definition impedes symptom understanding in clinical practice and effective management, respectively. The aim of the study was to formally consent a German translation of the English definition and terminology of episodic breathlessness. Methods: A web-based Delphi survey was conducted with German breathlessness experts (breathlessness working group of Germany's National Guideline (S3) for Palliative Care). Drafts of German-language definitions und terminology were assessed using structured questionnaires by binary rating or rankings, respectively. Optional comments were analysed by content analysis. Consensus was defined by ≥ 70% agreement among participants. Results: In two resulting Delphi-rounds 8/16 (50%) und 11/16 (69%) experts, 30-59 years of age, 50%/55% female, participated. After the second round, consensus was reached for the symptom's description "Atemnotattacke" (73%) and a German-language definition (90%). The terms "vorhersehbar" vs. "unvorhersehbar" were directly consented for the categorization (88%). Conclusion: The formally consented German definition and terminology of episodic breathlessness enable clearer symptom understanding and provide a precise basis for education and research on the symptom and its management also in Germany. Effective management options are warranted to improve quality of life of suffering patients and their relatives.
    DMW - Deutsche Medizinische Wochenschrift 10/2014; 139(42):2127-2131. DOI:10.1055/s-0034-1387295 · 0.54 Impact Factor
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    ABSTRACT: Context. Breathlessness is a distressing symptom in advanced disease. Understanding its patterns, burden and palliative care (PC) needs over time is important to improve patients` quality of life. Objectives To describe and compare the courses of refractory breathlessness, functional status, distress and PC needs in patients with advanced chronic obstructive pulmonary disease (COPD) or lung cancer (LC) over time. Methods This was a cohort study of patients with COPD (stage III/IV) or LC. Data were assessed monthly with up to 12 telephone interviews, using the modified Borg Scale, Karnofsky Performance Status Scale, Distress Thermometer and Palliative care Outcome Scale as outcomes measures. Descriptive analysis compared all outcomes between COPD and LC at baseline and over time (forward from study entry and backward from death). Results Eighty-two patients (50 COPD, 32 LC), mean (SD) age 67.2 (7.8) and 36% female were included (8 COPD, 23 LC deceased). COPD patients perceived higher levels of breathlessness and distress at lower functional status steadily over time. LC patients’ breathlessness, distress and PC needs increased while functional status decreased towards death. PC needs were similar between disease groups. Breathlessness was negatively correlated with functional status (COPD -0.20, P=0.012; LC -0.277, P=0.029) AU: SHOULD, E.G., -0.20, HAVE AN r = IN FRONT OF IT? and positively correlated with PC needs in COPD patients (0.343, P<0.001). Death was significantly predicted by diagnosis (LC: HR=7.84, P<0.001) and functional status (10% decline: HR=1.52, P=0.001). Conclusion PC needs of patients with advanced COPD are comparable to LC patients and breathlessness severity and distress are even higher. PC for COPD patients needs further improvement to address symptom burden and needs.
    Journal of pain and symptom management 10/2014; 48(4). DOI:10.1016/j.jpainsymman.2013.11.011 · 2.80 Impact Factor
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    ABSTRACT: Objective: Research findings suggest that patients severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counseling hotline for severely affected multiple sclerosis patients and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study. Method: The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semistructured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care). Results: During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers. Significance of results: Based on our pilot feasibility study, the hotline seems to be a valuable service for patients severely affected by multiple sclerosis (MS) and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.
    Palliative and Supportive Care 09/2014; 13(4):1-8. DOI:10.1017/S1478951514001035 · 0.98 Impact Factor
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    ABSTRACT: Purpose: Glioblastoma (GBM) patients have many palliative care (PC) issues. To date, there are no studies examining the prospective usage of validated PC assessment tools as patient reported outcome measures for GBM patients. Methods: GBM patients' PC issues were assessed from diagnosis to death or for at least 12 months every 7 weeks (±8 days) using semi-structured interviews and the Hospice and Palliative Care Evaluation (HOPE, including Eastern Cooperative Oncology Group (ECOG) performance status, 17 items) and the Palliative Outcome Scale (POS, 11 items). Data from patients who died within 12 months of the last patient's enrollment were evaluated using summarizing content analysis, visual graphical analysis (VGA), and linear mixed models for repeated measures. Results: Nineteen of 33 patients screened were enrolled; two dropped out and four were still alive at the end of the study. The remaining 13 were assessed at 59 points until death (time range 4-68 weeks; 1-10 contacts per patient; assessment: self, 33; joint, 8; external, 18). VGA of the HOPE and POS data, including all 1,652 assessed item data, showed consistent trajectory profiles for 14 of 28 items: 10 were increasing (meaning symptom worsening) and comprised predominantly psychosocial issues and care dependency. Type of assessment partly interacted with time, however, not qualitatively so. Analysis of semi-structured interviews revealed delayed interactions with PC/hospice services and numerous neuropsychiatric problems not detected by HOPE and POS. Conclusions: Prospective self-assessment of GBM patients' PC issues is feasible. However, disease progression may necessitate further, external assessment. Modification of existing PC assessment tools is needed to detect GBM-specific issues.
    Supportive Care Cancer 08/2014; 22(12). DOI:10.1007/s00520-014-2384-z · 2.36 Impact Factor
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    ABSTRACT: This study aims to assess and improve communication education for medical students in palliative care (PC) with the use of simulated patients (SP) in Germany. More specifically, to explore how students evaluate the use of SP for end-of-life communication training and which fears and barriers arise. A pilot course was implemented. Qualitative content analysis was used to analyse transcribed recordings of the course. Pre- and post-course questionnaires containing open-ended questions ascertained students' motivation for participating, their preparation within their degree programme and whether they felt they had learned something important within the course. Seventeen medical students in their third to fourth year of education (age 22-31) participated in the five-session course and answered the questionnaires (pre n = 17, post n = 12). Students felt insufficiently prepared and insecure. Discussing end-of-life issues was experienced as challenging and emotionally moving. Within the conversations, although students sometimes showed blocking behaviour in reaction to emotional impact, they valued the consideration of emotional aspects as very important. The course was overall highly appreciated and valued as being helpful. The communication situation with the SP was perceived as authentic. Ten out of 12 students confirmed to have learned something important (post course). Our results indicate an urgent need for better communication training for medical students. Due to the fact that bedside teaching in PC is not feasible for all students, training with standardized SP can be a way to generate an authentic learning situation. Techniques to address fears and blocking behaviour should, however, also be considered.
    Journal of Cancer Education 08/2014; 30(2). DOI:10.1007/s13187-014-0712-0 · 1.23 Impact Factor
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    ABSTRACT: Background: Epidemiological data shows an increasing number of people affected by dementia. It is mentioned that people with severe dementia have special care needs which are intensified at the end-of-life. Objective: This paper offers a systematic analysis of the current status of research on the needs of people with severe dementia in the last phase of their lives. Methods: A systematic review of the MEDLINE, CINAHL, Cochrane Library, PsycINFO, and AMED databases performed up to April 2014 was further expanded by contacting experts, conducting internet searches, and screening relevant reference lists. Studies were screened according to defined criteria and appraised for methodological quality. Findings were then synthesized using a narrative thematic approach to identify and categorize relevant needs into thematic categories and subcategories. Results: A total of ten studies published from 1993-2013 were identified, encompassing qualitative (n = 7), quantitative (n = 2), and a mixed-methods study (n = 1). Data synthesis yielded seven themes, with physical, social, and psychological needs the categories most frequently mentioned. Other categories were spiritual, supportive, and environmental needs and needs related to individuality. Needs were often named, but what they entailed operationally was not highlighted in detail. Conclusion: This systematic review shows the paucity of empirical findings on the needs of people with severe dementia. The structured presentation of thematic categories points to a clearer delineation of these needs. Thus, this overview emphasizes the topics for future research and can likewise serve as an orientation for care provision.
    Journal of Alzheimer's disease: JAD 08/2014; 43(2). DOI:10.3233/JAD-140435 · 4.15 Impact Factor
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    ABSTRACT: Abstract Background: Patients severely affected by multiple sclerosis (MS) present with complex symptoms and needs requiring an interdisciplinary care approach. Objective: Analysis of when and why specialized palliative care integration would be beneficial via examining health care professionals' attitudes. Design: A two-round online Delphi study and expert workshop were undertaken and analyzed descriptively. Setting/Subjects: Following an extensive online search, 164 professionals with expertise in treating and caring for severely affected patients with MS were contacted. Professionals included neurologists, urologists, general practitioners, MS nurses, speech therapists, physiotherapists, psychologists, and palliative care physicians. Forty-six consented to participate: 33 of 46 (71.4%) and 15 of 33 (45.5%) experts responded in the first and second round, respectively. Results: Consensus was reached among all respondents (100%) defining the term "severely affected": 78.8% and 86.7%, respectively, thought that specialized palliative care should begin once the disease has progressed (Expanded Disability Status Scale [EDSS]>6 and nursing care required). When the need exists for communication about disease progression (93.3%), psychological support (93.3%), relatives support (93.3%), and pain medication (86.7%) specialized palliative care should be consulted. Specialized palliative homecare was rated (93.3%) "very important." The workshop documented the paucity of home visits and specialized MS care in nursing homes. Conclusions: Our results clearly identified specific areas in which palliative care will likely prove to be a valuable asset in the treatment course of MS. This information should serve clinicians, indicating when to consider palliative care services and help further reduce or eliminate uncertainty about how palliative care can be integrated in the course of MS.
    Journal of Palliative Medicine 07/2014; 17(10). DOI:10.1089/jpm.2013.0667 · 1.91 Impact Factor
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    ABSTRACT: Background Advance directives (ADs) are assumed to reflect the patients’ preferences, even if these are not clearly expressed. Research into whether this assumption is correct has been lacking. This study explores to what extent ADs reflect the true wishes of the signatories. Methods Semi-structured interviews (INT), pretest. Transcribed INT and the contents of ADs were inductively categorised (Mayring) and triangulated. Software: MAXQDA 2007. Participants: Patients receiving palliative care (PPC), healthy (H) and chronically ill (CI) individuals with an AD completed ≥3 months prior to recruitment. Results Between 08/2008 and 07/2009, 53 individuals (20 H, 17 CI, 16 PPC) were interviewed (mean age 63.2 years (55–70 years)), 34% male). Most important (in)consistencies between preferences as expressed in INT compared to ADs included preconditions for termination/rejection of life-sustaining measures, refusal of/demand for medical interventions and the nomination of proxies. Standardized AD forms were rarely tailored to the individual. We found a high tendency to use set phrases, such as want to die with dignity or do not want to suffer/vegetate. Likely events in the course of an existing progressive disease were not covered, even in ADs of PPC close to death. Conclusions Only some of the incongruities between verbally expressed preferences and the contents of the AD can be put down to use of standardized forms or lack of medical knowledge. Nevertheless, the non-involvement of a doctor in the process of making an AD must be seen as potentially problematic and seeking medical advice should be promoted by politics and physicians. Standardised forms should encourage amendments and present space for free text entries for all aspects covered. Set phrases need to be defined by the individual to enable them to be translated into a specific course of action.
    BMC Medical Ethics 06/2014; 15(1):52. DOI:10.1186/1472-6939-15-52 · 1.50 Impact Factor

Publication Stats

5k Citations
844.50 Total Impact Points


  • 2006-2015
    • University of Cologne
      • • Center for Integrated Oncology
      • • Center for Palliative Medicine
      Köln, North Rhine-Westphalia, Germany
  • 2006-2012
    • MediaPark Klinik Köln
      Köln, North Rhine-Westphalia, Germany
  • 2011
    • University of Padova
      • Department of Neurosciences
      Padova, Veneto, Italy
  • 2009
    • Universität Heidelberg
      • Department of Neurology
      Heidelburg, Baden-Württemberg, Germany
  • 2007
    • Hospital Havelhoehe
      Berlín, Berlin, Germany
  • 1994-2006
    • Ludwig-Maximilian-University of Munich
      • • Institute for Clinical Neuroimmunology
      • • Institute of Clinical Neuroimmunology
      • • Department of Urology
      München, Bavaria, Germany
  • 2004
    • Institut Marqués, Spain, Barcelona
      Barcino, Catalonia, Spain
  • 2003
    • University of Leipzig
      • Department für Nuklearmedizin
      Leipzig, Saxony, Germany
  • 1990-2001
    • University Hospital München
      München, Bavaria, Germany
  • 2000
    • Weill Cornell Medical College
      • Division of Neurobiology
      New York, New York, United States
  • 1997-1999
    • Memorial Sloan-Kettering Cancer Center
      • Department of Neurology
      New York, New York, United States
    • Ruhr-Universität Bochum
      Bochum, North Rhine-Westphalia, Germany