Iedereen verantwoordelijk

Goede palliatieve zorg gaat iedereen aan: wij worden immers allemaal op enig moment met de dood geconfronteerd, zowel persoonlijk als binnen onze familie- en kennissenkring. En als zorgverleners dragen de meeste van ons zorg voor patiënten die lijden aan ziektes waaraan ze uiteindelijk zullen overlijden. Het is dan ook opmerkelijk, dat zorgverleners zelf, beleidsmakers en onderzoekers nog maar kort specifieke aandacht aan palliatieve zorg geven. Een groot deel van de dagelijkse zorg die wij bieden aan patiënten met een korte levensverwachting, of zelfs patiënten die stervende zijn, is niet gebaseerd op wetenschappelijke kennis van voldoende niveau. Waar praten we over? In Nederland overleden in 2006 136.000 mensen. Vierenvijftig procent van het totaal, te weten 73.000 mensen, overleed ten gevolg van een chronische ziekte. Bij hen werd het overlijden dus voorafgegaan door een ziekteperiode en komt palliatieve zorg nadrukkelijk aan de orde. Kanker is meest voorkomende ziekte die leidt tot een niet-acuut overlijden, maar 45% van de mensen overlijdt t.g.v. andere aandoeningen zoals hart- en vaatziekte, dementie en chronisch longlijden. In Nederland overlijdt ongeveer een derde van de mensen met een chronische ziekte thuis, een ander derde in een verpleeg- of verzorgingshuis, 27% in het ziekenhuis en een klein deel van de patiënten in andere instellingen, waar onder de speciale hospice voorzieningen

Hepatic encephalopathy: clinical and experimental studies

The pathogenesis of hepatic encephalopathy is still unsolved. Therapy, therefore, is often insufficient. For the development of effective, new therapies insight into the disease-inducing substrates and the mechanisms of its toxic actions in the central nervous system ·are required. For both studies on pathogenesis and therapy of hepatic encephalopathy, methods for the quantitation of its severity are needed. For the measurement of hepatic encephalopathy clinical grading, conventional electroencephalography and psychometric tests are mostly used. The former two methods are characterized by considerable intra- and interobserver error; the last one can only be used in mild encephalopathy. Quantitative EEG analysis has been shown to be useful! in longitudinal studies but its value for the classification of the whole spectrum of severities of encephalopathy had not been investigated. In studies on the pathogenesis of hepatic encephalopathy ammonia was considered as a major toxin from the beginning. However, its importance was rejected by many hepatologists because the correlation between plasma concentrations and encephalopathy is poor. New theories, especially the false neurotransmitter theory and the GABA-benzodiazepine receptor hypothesis, tried to explain cerebral dysfunction directly at the neuronal leveL The GABA-benzodiazepine receptor theory as originally proposed by Schafer and Jones resulted in the use of flumazenil, a benzodiazepine receptor antagonist, in hepatic encephalopathy. Uncontrolled clinical studies seemed to indicate remarkable therapeutic activity and therefore supported the presence of endogenous benzodiazepines. Besides specific toxins little attention has been given to the role of nonspecific metabolic factors, often present in liver failure, in the precipitation of encephalopathy in liver disease. With regard to these considerations the aims of this thesis were: 1. the development of an objective method, spectral analysis, for the measurement of hepatic encephalopathy; 2. to study the effect of flumazenil in hepatic encephalopathy; and 3. to study the role of aspecific factors in the induction of hepatic encephalopathy

Development and feasibility of a web application to monitor patients’ cancer-related pain

Background: In the outpatient setting, pain management is often inadequate in patients with cancer-related pain, because of patient- and professional-related barriers in communication and infrequent contacts. The internet may provide new opportunities for monitoring these patients. Purpose: The purpose of this study was to investigate whether internet monitoring of cancer-related pain in outpatients was feasible. Methods: We developed an internet application that contained a pain diary, eConsult, and patient pain education. In the pain diary, patients scored their pain intensity (0–10 Numeric Rating Scale) and analgesic use daily and their side effects twice a week. Feasibility was defined as the percentage of diaries patients completed during the first 6 weeks. Results: We included 100 outpatients. Sixteen were not evaluable due to cognitive problems (2); withdrawal of participation (2); internet problems (2), or because they were too ill (10). During the first 6 weeks, 60% of 84 evaluable patients completed their diary for at least 65% of the days (median number of diaries, 21; range, 3–42) and asked for a median of five eConsults (range, 0–37). Patients most frequently used an eConsult for questions about pain or side effects, how to use their analgesics and to improve their self-management. Over the 6-week period, current pain intensity decreased from 3.3 (SD = 2) to 2.5 (SD = 1.6, p = 0.005), and worst pain intensity decreased from 5.7 (SD = 2) to 3.8 (SD = 2.0, p < 0.001). Conclusion: Internet monitoring of pain is feasible in most outpatients with cancer-related pain. The frequent use of the pain diary in the majority of patients indicates that those patients felt confident with the regular assessment of pain

Prevalence, Impact, and Treatment of Death Rattle

Context: Death rattle, or respiratory tract secretion in the dying patient, is a common and potentially distressing symptom in dying patients. Health care professionals often struggle with this symptom because of the uncertainty about management. Objectives: To give an overview of the current evidence on the prevalence of death rattle in dying patients, its impact on patients, relatives, and professional caregivers, and the effectiveness of interventions. Methods: We systematically searched the databases PubMed, EMBASE, CINAHL, PsychINFO, and Web of Science. English-language articles containing original data on the prevalence or impact of death rattle or on the effects of interventions were included. Results: We identified 39 articles, of which 29 reported on the prevalence of death rattle, eight on its impact, and 11 on the effectiveness of interventions. There is a wide variation in reported prevalence rates (12%-92%; weighted mean, 35%). Death rattle leads to distress in both relatives and professional caregivers, but its impact on patients is unclear. Different medication regimens have been studied, that is, scopolamine, glycopyrronium, hyoscine butylbromide, atropine, and/or octreotide. Only one study used a placebo group. There is no evidence that the use of any antimuscarinic drug is superior to no treatment. Conclusion: Death rattle is a rather common symptom in dying patients, but it is doubtful if patients suffer from this symptom. Current literature does not support the standard use of antimuscarinic drugs in the treatment of death rattle

Pharmacological and clinical aspects of immediate release fentanyl preparations: Criteria for selection

In palliative care, pain management is often hampered by episodes of breakthrough pain, characterised by a rapid onset and, on average, duration less than 1 h. Until recently, only immediate release morphine and oxycodon preparations were available for the treatment of these episodes but time until effect is too long for both of these drugs. Recently, immediate release fentanyl products have become available for the treatment of breakthrough pain. These products can be classified as oromucosal and nasal products. Both are absorbed rapidly by the mucosa, although the oromucosally delivered products are partly absorbed by the gastrointestinal tract and therefore reach maximum plasma levels somewhat slower (after 30-90 min) than the nasally delivered products (after ~15 min). In clinical placebo controlled studies, all new immediate release fentanyl products were proven to be effective from 15 min after administration in the treatment of breakthrough pain. The first studies comparing immediate release fentanyl with immediate release morphine or oxycodon also found superiority for the new fentanyl products

Cut points on 0-10 numeric rating scales for symptoms included in the edmonton symptom assessment scale in cancer patients: A systematic review

Context: To improve the management of cancer-related symptoms, systematic screening is necessary, often performed by using 0-10 numeric rating scales. Cut points are used to determine if scores represent clinically relevant burden. Objectives: The aim of this systematic review was to explore the evidence on cut points for the symptoms of the Edmonton Symptom Assessment Scale. Methods: Relevant literature was searched in PubMed, CINAHL®, Embase, and PsycINFO®. We defined a cut point as the lower bound of the scores representing moderate or severe burden. Results: Eighteen articles were eligible for this review. Cut points were determined using the interference with daily life, another symptom-related method, or a verbal scale. For pain, cut point 5 and, to a lesser extent, cut point 7 were found as the optimal cut points for moderate pain and severe pain, respectively. For moderate tiredness, the best cut point seemed to be cut point 4. For severe tiredness, both cut points 7 and 8 were suggested frequently. A lack of evidence exists for nausea, depression, anxiety, drowsiness, appetite, well-being, and shortness of breath. Few studies suggested a cut point below 4. Conclusion: For many symptoms, there is no clear evidence as to what the optimal cut points are. In daily clinical practice, a symptom score ≥4 is recommended as a trigger for a more comprehensive symptom assessment. Until there is more evidence on the optimal cut points, we should hold back using a certain cut point in quality indicators and be cautious about strongly recommending a certain cut point in guidelines

Flumazenil does not improve hepatic encephalopathy associated with acute ischemic liver failure in the rabbit

The effect of flumazenil, a benzodiazepine antagonist, on hepatic encephalopathy was studied in rabbits with acute hepatic failure induced by a two-stage liver devascularization procedure. The rabbits were randomized for treatment with 5 mg/kg of flumazenil or the placebo. The drug was administered at two easily recognizable time points in the course of the encephalopathy: first, when the righting reflex was disturbed, and second, when the animal could no longer achieve to the sitting position. The response after flumazenil did not differ from that after the placebo, as measured by clinical evaluation and automated EEG analysis. Furthermore, the progression of the encephalopathy, as measured by the survival time after the first injection, was not affected by flumazenil

Dying at home or in an institution: perspectives of Dutch physicians and bereaved relatives

Introduction Previous studies have shown that most people prefer to die at their own home. We investigated whether physicians or bereaved relatives in retrospect differently appreciate the dying of patients in an institution or at home. Materials and methods Of 128 patients with incurable cancer who were followed in the last phase of their lives, 103 passed away during follow-up. After death, physicians filled out a written questionnaire for 102 of these patients, and 63 bereaved relatives were personally interviewed. Results Of 103 patients, 49 died in an institution (mostly a hospital), and 54 died at home (or in two cases in a home-like situation). Patients who had been living with a partner relatively often died at home. Bereaved relatives knew of the patient’s wish to die at home in 25 out of 63 cases; 20 of these patients actually died at home. Thirty-one patients had no known preference concerning their place of dying. Most symptoms and the care provided to address them were equally prevalent in patients dying in an institution and patients dying at home. Bereaved relatives were in general quite satisfied about the provision of medical and nursing care in both settings. Conclusion We conclude that most patients’ preferences concerning the place of dying can be met. In about half of all cases, patients do not seem to have a clear preference concerning their place of dying, which is apparently not a major concern for many people. We found no indication that dying in an institution or at home involves major differences in the process and quality of dying

Improving the quality of palliative and terminal care in the hospital by a network of palliative care nurse champions: The study protocol of the PalTeC-H project

Background: The quality of care of patients dying in the hospital is often judged as insufficient. This article describes the protocol of a study to assess the quality of care of the dying patient and the contribution of an intervention targeted on staff nurses of inpatient wards of a large university hospital in the Netherlands. Methods/Design. We designed a controlled before and after study. The intervention is the establishment of a network for palliative care nurse champions, aiming to improve the quality of hospital end-of-life care. Assessments are performed among bereaved relatives, nurses and physicians on seven wards before and after introduction of the intervention and on 11 control wards where the intervention is not applied. We focus on care provided during the last three days of life, covered in global ratings of the quality of life in the last three days of life and the quality of dying, and various secondary endpoints of treatment and care affecting quality of life and dying. Discussion. With this study we aim to improve the understanding of and attention for patients' needs, and the quality of care in the dying phase in the hospital and measure the impact of a quality improvement intervention targeted at nurses

Hydration and symptoms in the last days of life

Objectives: At the end of life oral fluid intake is often reduced. Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective of this study is to investigate to what extent the amount of fluid intake, preceding and during the dying phase, is related to the occurrence of death rattle and terminal restlessness. Methods: A multicentre prospective observational study was performed. Data on the occurrence of death rattle and terminal restlessness, fluid intake and opioid use of patients expected to die within a few days or hours were collected. Results: 371 patients were included. Death rattle was reported at least once in 40% (n=149) of patients during the dying phase. Death rattle occurrence was not associated with the amount of fluid intake during the days before dying. Terminal restlessness was reported in 26% of patients (n=96). Terminal restlessness was not associated with a lower amount of fluid intake during the days before dying. Terminal restlessness during the last 24 hours of life was associated with a higher amount of fluid (ie, >250 mL/day) during 48-25 hours before death. Conclusions: Caution with fluid intake to prevent development of death rattle does not seem to be necessary. Our study suggests that a higher amount of fluid intake during 48-25 hours before death may be associated with the occurrence of terminal restlessness during the last 24 hours of life. These results suggest that actively providing dying patients with artificial fluid may not be beneficial