[Show abstract][Hide abstract] ABSTRACT: 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.
BMC Medical Ethics 06/2014; 15(1):52. · 1.71 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Objective: Reliable and validated instruments are needed in order to study the desire for hastened death (DHD). As there is no instrument in the German language to measure DHD, our aim was to validate a German version of the Schedule of Attitudes Toward Hastened Death (SAHD-D). Method: The SAHD was translated following guidelines promulgated by the European Organization for Research and Treatment of Cancer (EORTC). In eligible patients (clinical situation adequate, MMSE ≥21), the following instruments were employed: a symptom checklist (HOPE), the HADS-D (Hospital Anxiety and Depression Scale), the EORTC-QLQ-PAL15, and the SAHD-D, as well as an external estimation of DHD provided by the attending physician. A high level of DHD was defined as the mean plus one standard deviation (SD). Results: Of the 869 patients assessed, 92 were eligible for inclusion (66% females, mean age of 64.5 years). The SAHD-D total score ranged from 0 to 18, with a mean of 5 and a standard deviation (SD) of 3.7. A high level of DHD was found in 20% (n = 19). For discriminant validity, significant correlations were found between the SAHD-D and depression (r rho = 0.472), anxiety (r rho = 0.224), and clinical state (r rho = 0.178). For criterion validity, the external estimate of DHD showed a low significant correlation with patient score (r rho = 0.290). Factor analysis of the SAHD-D identified two factors. Significance of results: Validation of the SAHD-D illustrated good discriminant validity, confirming that a desire to hasten death is a construct separate from depression, anxiety, or physical state. The unidimensionality of the SAHD could not be reproduced. Our findings support the multifactorial interdependencies on DHD and suggest that the SAHD-D should be refined by considering actual wishes, general attitudes, and options of patients.
[Show abstract][Hide abstract] ABSTRACT: Objective: People feeling severely affected by multiple sclerosis (MS) comprise a heterogeneous group, and this heterogeneity leads to very distinct needs and makes planning for needs difficult. To provide optimal care, it is important to identify specific needs in specific subgroups. Our objective was to identify the specific palliative care (PC) needs of patients who felt severely affected by the disease by analyzing their feeling (1) more or (2) less severely affected and their possible differences in expressed care needs. Method: A self-report questionnaire with 25 needs categories including 7 categories pertaining to care was applied to patients who felt severely affected by MS. An additional single question identified patients feeling more (≥7, median-split) and less (<7) severely affected. Differences were analyzed by chi-squared and Mann-Whitney U tests. The sample (N = 573) was composed of respondents who replied to an invitation by the German Multiple Sclerosis Society to participate in a survey on unmet needs of severely affected patients. Results: Of 573 patients (median age 51), 358 (62.48%) felt more severely affected. Compared to patients feeling less severely affected, they found the stress on their next of kin to be higher (p < 0.001), were in greater need of home visitation (p < 0.001), did not have permanent neurologists (p = 0.016), and felt that they visited them too rarely (p < 0.0001). They also needed more emotional support from their nursing care service (p = 0.006). Significance of results: A self-rating scale can identify two groups of patients with different care needs. These data may help shaping patient-centered support structures. Palliative care, with its multidisciplinary approach, might be one further option to meet the specific needs of patients and their relatives.
[Show abstract][Hide abstract] ABSTRACT: A survey was performed to assess whether authors who report about palliative treatments or palliative care share a common understanding of 'curative' treatments.
Current opinion in oncology 05/2014; · 4.09 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: In Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial. This study was aimed at investigating how severely affected MS patients and their health professionals perceive palliative care to determine how to better approach these patients in Germany about this topic.
15 patients feeling severely affected by MS and 23 health professionals experienced with MS patients (3 social workers, 7 nurses, and 13 physicians) in both in-/outpatient and rural/ urban settings participated in this qualitative study in Germany. Semi-structured interviews (patients, health professionals) and focus groups (health professionals) were conducted, transcribed verbatim and analyzed via qualitative content analysis.
MS patients were mostly unfamiliar with the term "palliative care" or were aware of it only in relation to cancer and dying. They did not view it as relevant to themselves. Health professionals predominantly associated palliative care with dying cancer patients, if familiar with it at all. Most physicians doubted its relevance for neurological patients and denied MS as a cause of death. Nevertheless, most felt they already offered their patients sufficient palliative care, or thought that it could not meet MS patients' complex needs. Most nurses and social workers recognized deficits in existing care structures and regarded palliative care as an opportunity for MS patients.
MS patients', and health professionals' restricted, death-associated awareness of palliative care leads to discomfort, fear or rejection of this idea. Therefore, a defined concept of palliative care emphasizing opportunities for severely affected MS patients and considering early integration should be spread throughout the German MS community as an additional layer of support for this patient group.
BMC Palliative Care 03/2014; 13(1):11. · 1.12 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Breathlessness is a common and distressing symptom in patients with advanced disease. Patients' self-report is deemed to be the most valid method of symptom assessment. When patients are not capable of self-assessment, professionals' assessment is often used as alternative but evidence on the validity is conflicting. The aim of this study was to compare self- and professionals' assessment of breathlessness regarding presence and severity in patients with advanced disease.
Secondary analysis of a cross-sectional, multi-centre and nationwide register (HOspice and Palliative Care Evaluation (HOPE)). Documented inpatients from hospices and palliative care units from 2006 to 2008 who completed the self-assessed MInimal DOcumentation System (MIDOS) were included. Professionals' assessment were based on the integrated symptom and problem checklist (symptom scores, 0-3). Cohen's kappa (κ) was used to estimate the 'level of agreement' (LoA).
Two thousand six hundred twenty-three patients (mean age, 66.9 (SD, 12.8); 54.4 % female; median Eastern Cooperative Oncology Group score, 3; 95.9 % with malignant disease) were analysed. Prevalence of breathlessness was 53.4 % (1,398 patients) by professionals' and 53.1 % (1,410 patients) by self-assessment. Presence was correctly evaluated by professionals in 80.9 % of cases (sensitivity, 81.8 %; specificity, 79.8 %). Severity of breathlessness was correctly estimated in 65.7 % of cases. LoA was good (κ = 0.62) for the evaluation of presence of breathlessness and moderate (κ = 0.5) for the estimation of severity. The proportion of over- or underestimated scores was similar.
If patient's self-rating, the gold standard of symptom assessment, is not possible, professionals' assessment might be a valid alternative, at least for assessing the presence of breathlessness.
Supportive Care in Cancer 02/2014; · 2.09 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Abstract Background: The needs of patients feeling severely affected by multiple sclerosis (MS) have rarely been investigated. However this is essential information to know before care can be improved, including adding palliative care (PC) services where helpful. Since it remains unclear at what point specialized palliative care should begin for this patient group, this study focuses on needs in general. Objective: The objective was to explore the subjectively unmet needs of patients feeling severely affected by MS. Methods: The study used a qualitative cross-sectional approach for needs assessment. Fifteen patients self-reporting feeling severely affected by MS were recruited and interviewed using a combination of purposive and convenience sampling (five were accompanied by a caregiver relative). Interviews were recorded and transcribed verbatim, followed by qualitative content analysis. Results: Unmet needs were identified in the main categories "support of family and friends," "health care services," "managing everyday life," and "maintaining biographical continuity." Patients expressed the desire for more support from their families and to be viewed as distinct individuals. They see a substantial deficit in the physician-patient relationship and in the coordination of services. A decrease in expressed unmet needs was found for patients more severely affected and less socially integrated. Conclusions: To address the unmet needs of severely affected MS patients, health care services need to be improved and linked with existing PC services. Special attention is required to form supporting professional-patient relationships. Multiprofessional services should be accessible for patients, while integrating relatives. All services should have an individual approach to provide needs-tailored support.
Journal of palliative medicine 02/2014; · 1.84 Impact Factor
[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.
Journal of pain and symptom management 01/2014; · 2.42 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Context: Episodic breathlessness is a common and distressing symptom in patients with advanced disease. Still, it is not yet clearly defined.
Objectives: The aim of this work was to develop an international definition, categorization, and terminology of episodic breathlessness.
Methods: An online Delphi survey was conducted with international breathlessness experts. We used a structured questionnaire to identify specific aspects and reach agreement on a definition, categorization, and terminology (five-point Likert scale). Consensus was defined in advance as ≥70% agreement.
Results: Thirty-one of 68 (45.6%), 29 of 67 (43.3%), and 33 of 67 (49.3%) experts responded in the first, second, and third rounds, respectively. Participants were 20–79 years old, about 60% male, and more than 75% rated their own breathlessness expertise as moderate to high. After three rounds, consensus was reached on a definition, categorization, and terminology (84.4%, 96.3%, and 92.9% agreement). The final definition includes general and qualitative aspects of the symptom, for example, time-limited severe worsening of intensity or unpleasantness of breathlessness in the patient's perception. Categories are predictable or unpredictable, depending on whether any triggers can be identified.
Conclusion: There is high agreement on clinical and operational aspects of episodic breathlessness in advanced disease among international experts. The consented definition and categorization may serve as a catalyst for clinical and basic research to improve symptom control and patients' quality of life.
Journal of Pain and Symptom Management 10/2013; · 2.60 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Abstract Background: Episodic breathlessness is a common and distressing symptom in advanced cancer and nonmalignant diseases but there is a lack of evidence on the characteristics of the symptom. Objective: The aim of this study was to determine the duration, severity, frequency and timing of breathlessness episodes in patients with advanced diseases. Methods: Explorative analysis of pooled cross-sectional data on episodic breathlessness collected in personal interviews with patients suffering from chronic obstructive pulmonary disease, lung cancer, chronic heart failure, or motor neuron disease. Interviews were conducted as part of two studies in the UK and in Germany that included the same questions on duration, frequency, timing, and peak severity of breathlessness episodes. Severity was measured on the modified Borg scale (0-10). Results: One hundred and twenty-nine patients, 61% male, mean age of 67 years (SD 9.8), were included. The episodes described were mainly short (75%≤10 min), severe (mean 6.5 (SD 2.4), and occurred mostly daily. Frequency of episodes triggered by exertion could hardly be determined as these varied depending on patients' activity. Conclusion: Our study reveals clinically important information on the characteristics of episodic breathlessness in patients with advanced diseases. Findings have implications for the treatment of episodic breathlessness since most short-acting drugs in use have a longer onset of action compared to the duration of episodes. We need to determine patient-relevant therapeutic targets for future evaluation of adequate pharmacological and nonpharmacological management options that are urgently warranted.
Journal of palliative medicine 09/2013; · 1.84 Impact Factor