Search

Het doel van deze studie is te onderzoeken hoe familieleden van psychogeriatrische verpleeghuispatie¨nten, waarbij het besluit is genomen al dan niet te starten met kunstmatig toedienen van vocht en/of voedsel (ktvv), het besluitvormingsproces beoordelen. Ook de informatieverstrekking van het verpleeghuispersoneel en de geboden zorg aan de patie¨nt worden gee¨valueerd. Het onderzoek was een observationele studie met behulp van vragenlijsten. Familieleden van 99 psychogeriatrische verpleeghuispatie¨nten vulden zowel op het moment van het besluit als zes weken na het nemen van het besluit of zes weken na het overlijden van de patie¨nt een vragenlijst in. Bijna alle familieleden beoordeelden de vier aspecten van het besluitvormingsproces (aantal keren overleg, inhoud van de gesprekken, zorgvuldigheid van de besluitvorming en eigen aandeel in de besluitvorming) op beide tijdstippen als ‘goed’ of ‘voldoende’. Verder bleek men de zorgvuldigheid van de besluitvorming significant vaker als ‘goed’ te beoordelen als men ook de andere drie aspecten ‘goed’ vond. Hierbij speelde met name hun eigen invloed op het besluitvormingsproces een rol. Informatieverstrekking over de mogelijke gevolgen van het al dan niet starten met ktvv als ook over de toestand van de patie¨nt werden bijna altijd als voldoende ervaren. Dit gold ook voor de aan de patie¨nt geboden zorg. Over het geheel genomen zijn bijna alle families tevreden over het verloop van het besluitvormingsproces en het uiteindelijk genomen besluit. Deze tevredenheid veranderde niet noemenswaardig tussen het moment van het besluit en naderhand. Hierbij maakte het feit dat de patie¨nt wel of niet was overleden geen verschil. Toch waren er enkele familieleden die niet tevreden waren over de (besluitvorming en) verpleeghuiszorg. Deze kritiek sluit aan bij de negatieve berichtgeving over de verpleeghuiszorg van de afgelopen jaren

Objective: To identify the types of care that patients and relatives perceive as appropriate or inappropriate in the last phase of life., Design: Questionnaire survey., Method: By means of an internet questionnaire with open questions, we asked patients and relatives about their experiences of care in the last phase of life and if they found it appropriate or inappropriate, and why. We recruited via e-mails, Twitter, Facebook, newsletters and links on homepages of patient organisations. Members of a Dutch large organisation for older people (Unie KBO) received the questionnaire on paper., Results: Forty-five patients and 547 relatives described received one or more cases. We found 429 cases of appropriate care and 309 different cases of inappropriate care. We identified five common dimensions of appropriate and inappropriate care, i.e., supportive care, treatment decisions, location of care, following the patient's wishes and communication. In the cases of appropriate care, all five dimensions were regularly mentioned; supportive care being most-frequently mentioned. In cases of inappropriate care, the dimensions treatment decisions, supportive care and communication were most often mentioned. Descriptions of appropriate care more frequently concerned patients with cancer, and descriptions of inappropriate care more frequently concerned patients with other somatic conditions or psychiatric conditions. Nurses or carers and general practitioners were more often mentioned in descriptions of appropriate care, and medical specialists more often mentioned in descriptions of inappropriate care., Conclusion: Appropriate care appears to be a wide-ranging term covering supportive care, treatment decisions, communication, following the patient's wishes, and the location where care is provided. Inappropriate treatment decisions and communication problems are the main threats to appropriate care in the last phase of life.

In 2012 the Dutch Dying with Dignity Society (NVVE) founded the End-of-life Clinic, which provides euthanasia or help with assisted suicide at the request of people whose own doctor will not carry out euthanasia if the legal requirements of due care can been fulfilled. As part of an independent evaluation, we looked at the applications received by the End-of-life Clinic during its first year and at the outcomes of these applications. We wrote an extensive article on this subject which was published in JAMA Internal Medicine. One of the most important outcomes is that the End-of-life Clinic rejected a large percentage of the requests for its services, mainly as these came from people with psychiatric conditions. This means that the fears that some people have concerning the alleged End-of-life Clinic policy 'you ask, we comply', appear to be unfounded. On the other hand, the End-of-life Clinic is certainly not the solution for all those people whose requests to their own doctor fall on deaf ears.

Purpose: Little is known about the role family physicians play when a patient deliberately hastens death by voluntarily stopping eating and drinking (VSED). The purpose of this study was to gain more insight for family physicians when confronted with patients who wish to hasten death by VSED. We aimed to describe physicians' involvement in VSED, to describe characteristics and motives of their patients, and to describe the process of VSED in terms of duration, as well as common symptoms in the last 3 days of life., Method: We undertook a survey of a random national sample of 1,100 family physicians (response rate 72%), and 500 of these physicians received questions about their last patient who hastened death by VSED., Results: Of the 978 eligible physicians, 708 responded (72.4%); 46% had cared for a patient who hastened death by VSED. Of the 500 physicians who received the additional questions, 440 were eligible and 285 (64.8%) responded; they described 99 cases of VSED. Seventy percent of these patients were aged older than 80 years, 76% had severe disease (27% with cancer), and 77% were dependent on others for everyday care. Frequent reasons for the patients' death wish were somatic (79%), existential (77%), and dependence (58%). Median time until death was 7 days, and the most common symptoms before death were pain, fatigue, impaired cognitive functioning, and thirst or dry throat. Family physicians were involved in 62% of cases., Conclusion: Patients who hasten death by VSED are mostly in poor health. It is not unlikely for family physicians to be confronted with VSED. They can play an important role in caring for these patients and their proxies by informing them of VSED and by providing support and symptom management during VSED.

Background: In cancer care, difficult decisions concerning advanced treatment need to be made, weighing possible life prolongation against harmful side effects. Treatment is frequently started, showing the need to explore how decisions are made. Little is known about the perspectives of physicians on sharing decision making with patients. This qualitative study aimed to describe the perspectives of medical specialists on the decision-making process with patients with glioblastoma concerning starting new treatment., Methods: Qualitative interviews were held with medical specialists. One focus group was organized with medical professionals. Their opinions about elements of shared decision making and the applicability in the context of patients with glioblastoma were assessed. The topic list for the focus group was based on the analysis of the interviews. Qualitative analysis of the transcripts was performed by three researchers independently., Results: Medical specialists considered shared decision making to be important; however, they did not adhere to its elements. Stopping treatment was not considered equal to continuing treatment. Exploration of the patients' wishes was done implicitly, and shared responsibility for the decision was not highly recognized. The main barriers to shared decision making were preferences of both patients and specialists for starting or continuing treatment and assumptions of physicians about knowing what patients want., Conclusion: Medical specialists recognized the importance of patient involvement but experienced difficulty in sharing decision making in practice. Elements of shared decision making are partly followed but do not guide decision making. To improve cancer care, education of medical specialists and adjustment to the elements are needed to involve patients.

The Dutch College of General Practitioners (NHG) guidelines 'Adult asthma' and 'COPD' have been revised. New spirometry reference values from the Global Lung Function Initiative are recommended. Airway obstruction is defined as a FEV1/FVC ratio below the 5th percentile for the reference population. Spirometry for diagnosis takes place without use of patients' inhaled medication and consists of measurements before and after standardized bronchodilation. In monitoring spirometry, patients continue using inhaled medication and standardized bronchodilation is not indicated. The goal of asthma management is optimal asthma control, tailored to individual goals. The most important non-drug intervention in asthma and COPD is to recommend stopping smoking. The goal of COPD management is to limit symptoms, improve exercise capacity and quality of life, and reduce the burden of disease. Inhaled corticosteroids are usually not indicated in COPD treatment. Patients with comorbid asthma and COPD are treated with non-drug interventions according to the COPD guideline and with medication according to the asthma guideline.

Many non-pharmacological interventions have only been tested in adults, and evidence on using these in children is lacking. To enhance child healthcare, research is required into these interventions in children. However, current rules and regulations make it difficult to conduct research into these low-risk, minimal-burden interventions. We describe the current rules and regulations on conducting research in children in the Netherlands and discuss the possibilities for adapting certain rules in accordance with the type of research that is performed.

Objective: Intensive use of morphine at the end of life sometimes seems to represent a grey area between active ending of life and regular alleviation of symptoms. We explored the most important characteristics of use of morphine at the end of life., Design: Cross-sectional questionnaire study., Method: A stratified sample was drawn of death cases that occurred in the Netherlands in 2010. Physicians were asked to fill out a questionnaire on medical decisions and care that had preceded death. The response rate was 74% (n = 6598)., Results: On the last day of life, 60% of all deceased patients received morphine. In 64% of the patients, the physician took into account that the use of morphine might hasten death. In 82%, the dosage was not or only gradually increased during the last 3 days of life. Hastening of death had been part of the purpose of administering morphine in 2.9% of the patients and the explicit purpose in 1.2%. In 2.1% of the patients, the physician indicated that the dosage was higher than needed to alleviate symptoms. Possible hastening of death as a result of the administration of morphine was not always discussed with the patient, his family or other caregivers; in 20% of the cases, it had not been discussed with anyone., Conclusion: Morphine is frequently used at the end of life. Physicians take more often than necessary into account that morphine potentially hastens death. Occasionally, morphine is deliberately used in higher dosages than needed with the aim of hastening death. Such practices may not always be compliant with legal and professional regulations to promote transparency and patient-centred care at the end of life.

Objective: To analyse possible trends in families' evaluations of the quality of end-of-life care and the quality of dying in dementia., Design: Analysis of individual patient data from 3 studies (2 solely retrospective (after death) and 1 partly prospective)., Method: We combined data on 372 residents with dementia from 38 nursing homes and 13 residential homes ('psychogeriatric' wards) over the period 2005-2010. Outcome measures were the End-of-Life in Dementia-Satisfaction With Care scale (EOLD-SWC; range: 10-40) to assess quality of, or satisfaction with, end-of-life care, and the EOLD-Comfort Assessment in Dying scale (EOLD-CAD; range: 12-42) to assess quality of dying (comfort). Regression analyses were performed with time (trend) as an independent factor and were adjusted for clustering of residents within homes. We also adjusted for differences between residents, homes, and study designs., Results: We found a consistent trend of increasing family satisfaction with end-of-life care over the years (unadjusted: 0.5 points per year increment on the EOLD-SWC, and adjusted: 1.2 points; mean total score: 32.4 (SD: 5.3)). Results for the EOLD-CAD scale (mean: 32.2 (SD: 5.7)) were inconclusive; only the exclusively retrospective data indicated increased comfort. Item- and subscale-level analyses showed that, in particular, families were more satisfied with general (comfort) measures for residents and the emotional support provided for families; further, families reported lower levels of emotional distress in residents., Conclusion: We found a positive trend of increased satisfaction with end-of-life care. Families also reported a possible increase in residents' end-of-life comfort. Ongoing surveillance of outcomes measuring end-of-life quality is important in view of the increasing healthcare budget constraints.

Oesophageal dysphagia is the subjective feeling that there is a problem with the passage of solids or liquids through the oesophagus. The differential diagnosis of dysphagia is long and can be divided into mechanical and motility disorders. Dysphagia is an alarming symptom which requires short-term endoscopic evaluation. An emerging cause of dysphagia is eosinophilic oesophagitis. The typical eosinophilic oesophagitis patient is a young adult man, often with an atopic constitution, who has intermittent symptoms of dysphagia. The diagnosis of 'eosinophilic oesophagitis' is based on characteristic histological findings in the oesophagus, seen in a fitting clinical context. Best evidence for the effects of treatment of eosinophilic oesophagitis is available for topical glucocorticoids.

There has been a debate for over a decade in The Netherlands about whether physicians should be allowed to provide assistance with suicide to older people who are 'weary of life'. Actual knowledge about these older people is missing in this debate. The purpose of this article is to explore and discuss the expectations older people who are 'weary of life' have of their future, and to what extent they perceive their suffering as hopeless. In this qualitative study, 31 older people who were 'weary of life' were interviewed. The results of this study show that most respondents who were 'weary of life' did not plan to end their life within a short time frame. The burden to their loved ones played a large role in their decision in addition to the awareness of still having reasons to live. Most respondents tried not to think too much about the future, and hoped death would come soon. Most respondents could not name a condition that would diminish their wish to die, that they also found desirable and feasible. The results of this study suggest that people who develop thoughts about death do so when they give up finding solutions to improve their situation.

Objective: To study how advance euthanasia directives (AEDs) in dementia are viewed in practice in the Netherlands., Design: Qualitative study., Method: In-depth interviews on nine patients with the patients themselves and/or partners and their physicians. The patients were included from a cohort of people with an AED. All interviews were done in 2006. Cases were included with different diagnoses and at different stages of dementia., Results: Interviewed patients and their relatives had very high expectations of the feasibility of the AED. Interviewed physicians often thought of AEDs as aids in starting up a dialogue about medical decisions at the end of life, but they did not always do this in practice. Most physicians were open to adhering to AEDs in exceptional cases, on condition that the patient obviously suffered, and that communication with the patient to some extent was possible. In this study two cases were found in which adhering to the AED was seriously considered. In one case, fear of legal consequences was the only reason the physician had not adhered to the AED, while it seemed all the requirements of due care could be met. Euthanasia was not carried out in the other patient either. Several physicians mentioned the need for more detailed practical guidelines for the use of AEDs for dementia., Conclusion: Patients had too high expectations of AEDs. It seemed that in exceptional cases the requirements for due care for euthanasia can be met in patients with dementia with an AED. It seems advisable that more detailed practical guidelines for the use of AEDs in cases of dementia be drawn up, as a first step to more clarity for patients and physicians.

In general practice important health gain is obtainable by encouraging patients to stop smoking with support from the general practitioner. The practice guideline 'Smoking cessation' differentiates between smokers who are motivated to stop smoking, smokers who are considering smoking cessation, and smokers who are unmotivated to stop smoking. It is important to offer smokers, who are motivated to stop, intensive support at the right moment. Medicinal support in the way of nicotine replacement therapy, nortriptyline or bupropion is, ifpossible, recommended in motivated smokers who smoke at least 10 cigarettes daily.

The purpose of this study is to investigate how relatives of nursing home patients with dementia, for whom the decision whether to start or forgo artificial nutrition and hydration (ANH) was made, assess the decision-making process. Furthermore we evaluated the information given by the nursing home staff to the relatives and the care provided by them to the patient. The study was an observational study based on written questionnaires. Relatives of 99 nursing home patients with dementia filled in a questionnaire at the time of the decision-making and 6 weeks after the decision was made or 6 weeks after the patient had died. Almost all relatives assessed the 4 aspects of the decision-making process (number of consults, content of the consults, carefulness of the decision-making and there own part in the decision-making process) at both times as 'good' or 'satisfactory'. Furthermore it appeared that they judged the carefulness of the decision-making process significantly more often as 'good' when they also assessed the other three aspects as 'good'. Especially their own influence on the decision-making process appeared to play a part in this matter. Information about the possible consequences of starting ANH as well as about the condition of the patient were experienced sufficient by almost all relatives. This was also the case for the care offered to the patient. In general almost all relatives reported satisfaction with the decision and with the carefulness of the decision-making process. This satisfaction did not differ between the moment of the decision and afterwards. For this it did not make any difference whether the patient had or had not died.

Objective: To provide insight into the relationship between the drugs used for euthanasia and its notification., Design: Retrospective and descriptive., Methods: By comparing the drugs used for euthanasia according to different components of studies carried out in 1990, 1995 and 2000, insight was obtained into the drugs used in all cases of euthanasia satisfying the definition thereof (death-certificate studies), those cases of euthanasia that, in addition, were defined as such by the physician (physician interviews), and the cases of euthanasia that, in addition, had been reported (reported case studies)., Results: In 2001, standard drugs for euthanasia were used in 76% of cases and opioids in 23%. Euthanasia with standard drugs was reported in 73% of cases in 1995, and in 71% of cases in 2000, while euthanasia with opioids was reported in 2% and 1% of cases, respectively. The total percentage of euthanasia reported was higher in 2001 than in 1995 (54% versus 44%), since in 2001 euthanasia was apparently performed more often with standard drugs and less with opioids., Conclusion: An increasing proportion of cases of euthanasia is being carried out with the drugs recommended for this purpose. Euthanasia with opioids was rarely reported. Possibly, physicians did not always consider these cases to be euthanasia.