[Show abstract][Hide abstract] ABSTRACT: Background:
The desire for hastened death or wish to hasten death (WTHD) that is experienced by some patients with advanced illness is a complex phenomenon for which no widely accepted definition exists. This lack of a common conceptualization hinders understanding and cooperation between clinicians and researchers. The aim of this study was to develop an internationally agreed definition of the WTHD.
Following an exhaustive literature review, a modified nominal group process and an international, modified Delphi process were carried out. The nominal group served to produce a preliminary definition that was then subjected to a Delphi process in which 24 experts from 19 institutions from Europe, Canada and the USA participated. Delphi responses and comments were analysed using a pre-established strategy.
All 24 experts completed the three rounds of the Delphi process, and all the proposed statements achieved at least 79% agreement. Key concepts in the final definition include the WTHD as a reaction to suffering, the fact that such a wish is not always expressed spontaneously, and the need to distinguish the WTHD from the acceptance of impending death or from a wish to die naturally, although preferably soon. The proposed definition also makes reference to possible factors related to the WTHD.
This international consensus definition of the WTHD should make it easier for clinicians and researchers to share their knowledge. This would foster an improved understanding of the phenomenon and help in developing strategies for early therapeutic intervention.
[Show abstract][Hide abstract] ABSTRACT: Welche Versorgung ein unheilbar kranker Patienten benötigt, muss immer individuell abgeklärt werden. Dabei spielen seine Bedürfnisse, aber auch die Situation, in der er sich befindet, eine wichtige Rolle. Ist er zu Hause gut versorgt oder lebt er alleine?
No preview · Article · Jan 2016 · MMW Fortschritte der Medizin
[Show abstract][Hide abstract] ABSTRACT: Die aktuelle S3-Leitlinie Palliativmedizin widmet sich vier Symptomen, die unheilbar kranke Krebspatienten besonders häufig beeinträchtigen: Atemnot, Tumorschmerz, Obstipation und Depression. Wie können Sie diese Symptome erfassen und behandeln?
No preview · Article · Jan 2016 · MMW Fortschritte der Medizin
[Show abstract][Hide abstract] ABSTRACT: Möglichst sicher zu erkennen, wann die Sterbephase beginnt, ist Grundvoraussetzung für die angemessene Behandlung des sterbenden Patienten. Gibt es dafür eindeutige Prädiktoren? Wie kommunizieren Sie in dieser schwierigen Phase mit dem Patienten und seiner Familie?
No preview · Article · Jan 2016 · MMW Fortschritte der Medizin
[Show abstract][Hide abstract] 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".
[Show abstract][Hide abstract] 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.
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.
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).
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.
No preview · Article · Oct 2015 · European Journal of Neurology
[Show abstract][Hide abstract] 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.
[Show abstract][Hide abstract] 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.
Full-text · Article · Jun 2015 · Palliative and Supportive Care
[Show abstract][Hide abstract] 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.
No preview · Article · Apr 2015 · MMW Fortschritte der Medizin
[Show abstract][Hide abstract] 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.
[Show abstract][Hide abstract] 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.
No preview · Article · Jan 2015 · Palliative Medicine
[Show abstract][Hide abstract] 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.
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.
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%).
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.
No preview · Article · Oct 2014 · DMW - Deutsche Medizinische Wochenschrift
[Show abstract][Hide abstract] 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.
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.
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).
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).
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.
No preview · Article · Oct 2014 · Journal of pain and symptom management