S. Stiel

Evaluation and comparison of two prognostic scores and the physicians’ estimate of survival in terminally ill patients

BackgroundMost terminally ill patients request information about their remaining life span. Professionals are not generally willing to provide prognosis on survival, even though they are expected to be able to do so from their clinical experience. This study aims to find out whether the standardized instruments Palliative Prognostic Index (PPI) and the Palliative Prognostic Score (PaP-S) are appropriate, specific, and sensitive to estimate survival time in patients receiving inpatient palliative care in Germany.MethodPPI and PaP-S were assessed in addition to the core documentation data set of the Hospice and Palliative Care Evaluation for patients admitted to the palliative care units in Aachen, Bonn, and Cologne. Time of survival was assessed with repeated phone calls to the family and was defined as the difference between the day of completion of the instruments (excluded) and the day of death (included).ResultsSurvival time was compared with physicians’ estimations and prognostic scores in 83 patients. Whereas the estimates of the PPI and the PaP-S correlate highly, even higher correlations are found for the physicians’ prognosis and the scores. Correlations between survival time and the prognostic scores or physicians’ prognosis were lower. Physicians’ estimations overestimated survival time on average fourfold. Estimations were more often correct for very good and very bad prognosis.DiscussionThe prognostic scores are not able to produce a precise reliable prognosis for the individual patient. Nevertheless, they can be used for ethical decision making and team discussions. Estimating survival time from clinical experience seems to be easier for very bad or very good prognosis for physicians.

Validierung der neuen Fassung des Minimalen Dokumentationssystems (MIDOS2) für Patienten in der Palliativmedizin

BACKGROUND repeated self-assessment of symptoms and problems of patients is required for quality assurance in palliative care. In Germany, the Minimal Documentation System (MIDOS) has been designed specifically for palliative care patients. To adapt MIDOS as a German version of the Edmonton Symptom Assessment Scale (ESAS) a revised version of MIDOS(2) has now been validated. Two original items on average and highest pain intensity (11-step NRS) were replaced by one item on pain intensity on a 4-step VRS and the assessment of vomitus, lack of appetite and depressive mood were added to the assessment of nausea, dyspnoea, constipation, weakness, tiredness, anxiety, others and well-being which were already part of the original version. METHOD all patients admitted to the palliative care unit were asked to participate voluntarily in this study. MIDOS(2), the German versions of the ESAS and the quality of life questionnaire EORTC QLQ-C15-Pal were completed on the same day during their inpatient stay. MIDOS(2) was repeated on the next day. RESULTS from August 2009 to March 2010, 60 patients (55% men, 45% women; mean age = 64.3, range = 23.6-92.4 years) treated in the palliative care unit completed the study. Self-assessment with MIDOS(2) was reported to burden the patients only slightly (mean burden = 1.1, range: 0 = no to 10 = maximum burden on a NRS), application of MIDOS(2) took between 1 and 7 min (mean duration = 2.4 min) and 61.7% of the patients preferred MIDOS(2) (with VRS) to ESAS (30%) (with NRS) for routine daily documentation. External criterion validity by inter-item correlations of MIDOS(2) with ESAS varied between r = .533 (anxiety) and .881 (nausea) and between r = .348 (depressive mood) and .717 (constipation) for the corresponding items of the EORTC QLQ-C15-Pal. Test-retest reliability between the sum scores of symptoms and problems reported in MIDOS(2) on the first day and on the second day was .688, and r = .573 for well-being. CONCLUSION MIDOS(2) can be recommended for routine daily documentation in palliative care because of low burden, little expenditure of time and high participation of patients. Statistical evaluation indicated good external validity and reliability.

[Validation of the new version of the minimal documentation system (MIDOS) for patients in palliative care : the German version of the edmonton symptom assessment scale (ESAS)].

BACKGROUND repeated self-assessment of symptoms and problems of patients is required for quality assurance in palliative care. In Germany, the Minimal Documentation System (MIDOS) has been designed specifically for palliative care patients. To adapt MIDOS as a German version of the Edmonton Symptom Assessment Scale (ESAS) a revised version of MIDOS(2) has now been validated. Two original items on average and highest pain intensity (11-step NRS) were replaced by one item on pain intensity on a 4-step VRS and the assessment of vomitus, lack of appetite and depressive mood were added to the assessment of nausea, dyspnoea, constipation, weakness, tiredness, anxiety, others and well-being which were already part of the original version. METHOD all patients admitted to the palliative care unit were asked to participate voluntarily in this study. MIDOS(2), the German versions of the ESAS and the quality of life questionnaire EORTC QLQ-C15-Pal were completed on the same day during their inpatient stay. MIDOS(2) was repeated on the next day. RESULTS from August 2009 to March 2010, 60 patients (55% men, 45% women; mean age = 64.3, range = 23.6-92.4 years) treated in the palliative care unit completed the study. Self-assessment with MIDOS(2) was reported to burden the patients only slightly (mean burden = 1.1, range: 0 = no to 10 = maximum burden on a NRS), application of MIDOS(2) took between 1 and 7 min (mean duration = 2.4 min) and 61.7% of the patients preferred MIDOS(2) (with VRS) to ESAS (30%) (with NRS) for routine daily documentation. External criterion validity by inter-item correlations of MIDOS(2) with ESAS varied between r = .533 (anxiety) and .881 (nausea) and between r = .348 (depressive mood) and .717 (constipation) for the corresponding items of the EORTC QLQ-C15-Pal. Test-retest reliability between the sum scores of symptoms and problems reported in MIDOS(2) on the first day and on the second day was .688, and r = .573 for well-being. CONCLUSION MIDOS(2) can be recommended for routine daily documentation in palliative care because of low burden, little expenditure of time and high participation of patients. Statistical evaluation indicated good external validity and reliability.

Antibiotics in palliative medicine—results from a prospective epidemiological investigation from the HOPE survey

BackgroundPatients with advanced cancer are highly susceptible to infections. The decision whether to treat an active or suspected infection or to withhold or withdraw an antibiotic treatment in end-of-life care may be difficult. In order to quantify the antimicrobial prescribing practices and decision-making processes in palliative care units in Germany, a survey was performed as part of the Hospice and Palliative Evaluation in 2006.MethodWith a specifically designed questionnaire, 448 patients for whom an active or suspected infection and antibiotic treatment was discussed were documented. Data on the use of and indication for antibiotic treatment and the decision-making on withdrawal or withholding of antibiotic therapy were collected.Results286 (63.8%) received an antibiotic therapy. In 88 cases, withdrawal of an ongoing treatment was documented. The most frequent reasons for withdrawal were: deterioration of general status (41.4%), inefficiency of therapy (25.7%), and explicit wish of patient (14.3%; multiple answers possible). Outcome of antimicrobial therapy was rated poor or very poor for a fifth of the cases and accordingly, antibiotics were more likely to be withdrawn if the clinical success was considered to be poor. The initiation of therapy was often decided by physicians solely, whereas withdrawing and withholding therapy demanded more often involvement of other team members in the decision-making process.ConclusionThe initiation of therapy seems to be easier than withdrawing and withholding, as involvement of other team members in the decision-making process was then sought more often. When antibiotics were given until death, the indication should be reconsidered because of a possibly undesirable prolongation of the dying process. Clinical practice may benefit from clear definitions of treatment goals and outcome criteria to better evaluate the necessity for and success of antimicrobial treatment.

Cornea donation from patients deceased at a palliative care unit.

The introduction of the German Transplantation Law from 1997 commits medical care units to support organ and tissue donation. Medical staff members are requested to report potential organ and tissue donors to local representatives and to check further inclusion criteria and contra indications before gaining consent for explantation. Therefore, caregivers in palliative care are invited to establish collaborations with eye banks to support cornea and other tissue donation. Because of the gap between the high need for cornea transplantation and the current lower numbers of donors, it is necessary to assist in this field of work. In surveys, 50% of the German population declare their intention to donate organs if possible, but only a minority of 15% commits themselves accordingly in written form. In most cases of potential organ or tissue donation, relatives of the deceased have to be interviewed to obtain consent. Organ donation is generally accepted in the medical profession as a beneficial practice with high demand and social relevance. Although the possibility of organ donations is very limited in cancer patients, positive inclusion criteria for cornea donation are possible in deceased cancer patients from palliative care units. The palliative care unit in the RWTH University Hospital in Aachen was contacted by staff members of the eye bank asking for assistance in the cornea donation process in several cases. The compatibility of asking relatives for tissue donation with the palliative care philosophy was the topic of discussion in the palliative care team. There was consent that cornea donations are needed and are beneficial to the recipients, but it was stressed that careful communication with the relatives concerning tissue donation was necessary. This led to an exchange of information and experiences with staff from the eye bank. As only little literature can be found on this topic in palliative care, this information emphasizes the potential value of palliative care patients as cornea donors and aims to increase the awareness of staff members for their opportunities in supporting tissue donation. Methods

Indications and use of benzodiazepines in a palliative care unit

BACKGROUND Benzodiazepines are often used in palliative care for symptom control, for example in treatment of dyspnea or anxiety. They are also used for palliative sedation, if symptoms are not controlled (fast) enough and a reduction of consciousness is therefore necessary. Incidence of palliative sedation has been reported to vary between 5-52% of all patients in a palliative care setting in several studies. METHOD Information from the records of 160 patients treated in the palliative care unit from September 2003 to December 2004 was evaluated from an electronic database. Gender, age, diagnosis, symptoms and medication, especially benzodiazepine dosage and application were analyzed. RESULT Of the patients 70% were treated with benzodiazepines but only 3.1% received deep and continuous sedation. Benzodiazepines were applied as required in oral or sublingual form in 71.8% of all cases. Lorazepam was given most often because of anxiety and agitation, oxazepam to induce sleep and midazolam in five cases of terminal sedation. Only rarely were diazepam and clonazepam prescribed to prevent or resolve convulsions. CONCLUSION The majority of patients had been treated with benzodiazepines whereas only very few had received deep and continuous sedation.

Indikationen und Gebrauch von Benzodiazepinen auf einer Palliativstation

BACKGROUND Benzodiazepines are often used in palliative care for symptom control, for example in treatment of dyspnea or anxiety. They are also used for palliative sedation, if symptoms are not controlled (fast) enough and a reduction of consciousness is therefore necessary. Incidence of palliative sedation has been reported to vary between 5-52% of all patients in a palliative care setting in several studies. METHOD Information from the records of 160 patients treated in the palliative care unit from September 2003 to December 2004 was evaluated from an electronic database. Gender, age, diagnosis, symptoms and medication, especially benzodiazepine dosage and application were analyzed. RESULT Of the patients 70% were treated with benzodiazepines but only 3.1% received deep and continuous sedation. Benzodiazepines were applied as required in oral or sublingual form in 71.8% of all cases. Lorazepam was given most often because of anxiety and agitation, oxazepam to induce sleep and midazolam in five cases of terminal sedation. Only rarely were diazepam and clonazepam prescribed to prevent or resolve convulsions. CONCLUSION The majority of patients had been treated with benzodiazepines whereas only very few had received deep and continuous sedation.

Bitte um Einverständnis in eine Hornhautspende

INTRODUCTION Because of the gap between the high need for cornea tissue for transplantation and the current lower numbers of donors, there is high pressure to succeed in telephone calls to relatives of deceased for obtaining consent. Besides the attempt to increase the rate of donors, these telephone calls should be gentle for relatives and not overstrain professionals. This study assesses the need and expectations of physicians towards communication training in preparation for their task. METHODS In September-October 2009 a needs assessment for communication training among physicians who currently work or have worked for the eye bank took place. Personal data were recorded and their estimate of the perceived burden as well as needs and potential benefits from a specific communication training for obtaining consent for cornea donation by telephone were assessed using numeric rating scales between 1 (minimum) and 10 (maximum). Results were expressed as mean and range. RESULTS The participants felt only moderately prepared for the task regarding information content, their emotions and personal convictions. They considered a specific training to be highly meaningful, necessary and helpful. Their highest burden during telephone calls previously experienced was documented as 8.4 and the average burden as 6.3. Accordingly, their willingness to continue working at an eye bank after their rotation was moderate. DISCUSSION Physicians involved in obtaining consent for cornea donation by telephone feel highly stressed and only moderately prepared for fulfilling the task both for the information content and on the emotional level. Accordingly, specific communication training is perceived as highly meaningful, necessary and helpful. An educational program was developed to meet the needs and expectations of physicians.ZusammenfassungHintergrundDurch den hohen Bedarf und der deutlich geringeren Verfügbarkeit von Hornhäuten des Auges besteht eine große Hoffnung auf das Gelingen ärztlicher Akquisegespräche mit Angehörigen zum Einverständnis in eine Gewebespende. Neben der Steigerung des Erfolgs in der Spendergewinnung sollen Akquisegespräche schützend für Angehörige verlaufen und die Arbeitsbelastung des Fachpersonals gering gehalten werden. Diese Arbeit erfasst den Bedarf und Erwartungen an ein Kommunikationstraining zur Vorbereitung auf die Akquisetätigkeit.MethodeIm September und Oktober 2009 wurde unter allen Akquiseärzten, die in der Hornhautbank arbeiten bzw. gearbeitet haben, eine Bedarfanalyse für ein Kommunikationstraining vorgenommen. Auf 10-stufigen numerischen Rangskalen wurde das Ausmaß der fachlichen, emotionalen und persönlichen Vorbereitung, das Ausmaß der Einschätzung eines Kommunikationstrainings als sinnvoll, notwendig und hilfreich sowie die durchschnittliche und höchste Belastung und Bereitschaft zur Ausübung der Akquise erfragt.ErgebnisseDie Studienteilnehmer fühlten sich fachlich, emotional und in ihrer persönlichen Überzeugung nur mittelmäßig auf die Tätigkeit vorbereitet und erachteten ein Kommunikationstraining für in hohem Maß sinnvoll, notwendig und hilfreich. Bei mittlerer durchschnittlicher Arbeitsbelastung mit kurzfristigen Hochbelastungsphasen bestand nur eine moderate Bereitschaft zur weiteren Ausführung dieser Tätigkeit.DiskussionDurch klare Hinweise auf eine nicht als ausreichend empfundene Vorbereitung auf die Akquisetätigkeit und als hoch empfundene Arbeitsbelastung wurde ein Kommunikationsseminar mit einem spezifischen Training der Akquisetelefonate entwickelt. Dieses Training entspricht bedarfsgemäß sowohl den Wünschen und Erwartungen des ärztlichen Personals als auch den am ehesten beeinflussbaren Variablen im Hinblick auf die Erfolgsquote bei der Spendenakquise.AbstractIntroductionBecause of the gap between the high need for cornea tissue for transplantation and the current lower numbers of donors, there is high pressure to succeed in telephone calls to relatives of deceased for obtaining consent. Besides the attempt to increase the rate of donors, these telephone calls should be gentle for relatives and not overstrain professionals. This study assesses the need and expectations of physicians towards communication training in preparation for their task.MethodsIn September–October 2009 a needs assessment for communication training among physicians who currently work or have worked for the eye bank took place. Personal data were recorded and their estimate of the perceived burden as well as needs and potential benefits from a specific communication training for obtaining consent for cornea donation by telephone were assessed using numeric rating scales between 1 (minimum) and 10 (maximum). Results were expressed as mean and range.ResultsThe participants felt only moderately prepared for the task regarding information content, their emotions and personal convictions. They considered a specific training to be highly meaningful, necessary and helpful. Their highest burden during telephone calls previously experienced was documented as 8.4 and the average burden as 6.3. Accordingly, their willingness to continue working at an eye bank after their rotation was moderate.DiscussionPhysicians involved in obtaining consent for cornea donation by telephone feel highly stressed and only moderately prepared for fulfilling the task both for the information content and on the emotional level. Accordingly, specific communication training is perceived as highly meaningful, necessary and helpful. An educational program was developed to meet the needs and expectations of physicians.

Schnittstellenproblematik beim Übergang von stationärer zu ambulanter Versorgung von Tumorpatienten

INTRODUCTION Problems and deficits in the transition between hospital-based and outpatient care of cancer patients were evaluated. The project was initiated by the Public Health Department of the City of Aachen and was carried out with cooperation from all hospitals in the urban areas. METHOD From September 2002 to April 2003 a total of 145 cancer patients fulfilling the inclusion criteria from 4 regional hospitals were documented at 4 time points within a period of 6-8 weeks by questionnaires, telephone and personal interviews. Aspects of interest were disease type, symptom burden, well-being, the homecare situation and medical aids required. RESULTS Patients and their relatives reported on inadequate pain management, insufficient preparation of transition, problems in information flow, organisational problems, lack of attention and humaneness, deficiency of care, delay of diagnosis, inadequate access to services, insufficient prescription of drugs and adjuvants, financial problems and quarrels with the health insurance company on payment of aid devices. Coping strategies were mostly non-functional and not problem-orientated. DISCUSSION Special attention should be paid to psychosocial and interpersonal needs of patients. Volunteers may have an important role in the care of patients and relatives. The introduction of case managers might lead to an advancement of care. Sensitisation of physicians, nurses and other caregivers for deficits in transition of patients is needed and should be covered in palliative care education and training.

Problems and deficits in the transition from inpatient and outpatient care of cancer patients. A qualitative analysis

INTRODUCTION Problems and deficits in the transition between hospital-based and outpatient care of cancer patients were evaluated. The project was initiated by the Public Health Department of the City of Aachen and was carried out with cooperation from all hospitals in the urban areas. METHOD From September 2002 to April 2003 a total of 145 cancer patients fulfilling the inclusion criteria from 4 regional hospitals were documented at 4 time points within a period of 6-8 weeks by questionnaires, telephone and personal interviews. Aspects of interest were disease type, symptom burden, well-being, the homecare situation and medical aids required. RESULTS Patients and their relatives reported on inadequate pain management, insufficient preparation of transition, problems in information flow, organisational problems, lack of attention and humaneness, deficiency of care, delay of diagnosis, inadequate access to services, insufficient prescription of drugs and adjuvants, financial problems and quarrels with the health insurance company on payment of aid devices. Coping strategies were mostly non-functional and not problem-orientated. DISCUSSION Special attention should be paid to psychosocial and interpersonal needs of patients. Volunteers may have an important role in the care of patients and relatives. The introduction of case managers might lead to an advancement of care. Sensitisation of physicians, nurses and other caregivers for deficits in transition of patients is needed and should be covered in palliative care education and training.