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Biomedical subjects

Gerrit van der Wal

Publications and source records attributed to Gerrit van der Wal.

At least 91 records · Page 5Linked to original sources

Feeding nursing home patients with severe dementia: a qualitative study.

AIM: To describe the nature of problems nurses face when feeding nursing home patients with severe dementia, and how they deal with these problems. BACKGROUND: In our study on starting or withholding artificial nutrition and hydration for nursing home patients with dementia, we found that many problems in feeding arose (long) before any decision was made about artificial feeding, namely from the first moment a patient needed help with meals. Because 'ordinary feeding' was experienced as a daily recurring problem for nurses, we decided to investigate this within the study. METHODS: Participant observation by two researchers in two Dutch nursing homes. FINDINGS: Nurses interpreted the aversive behaviour of patients differently, and a link between interpretation and responses (stop or continue feeding) was observed. Differences in interpretation with regard to the same patient were observed in nurses in five of the seven units. Only in three units did nurses discuss their different interpretations in an attempt to find out why a patient avoided food and fluids and how to deal with these problems. CONCLUSIONS: Nurses' interpretations of aversive behaviour of patients differ. No definite conclusions can be drawn about the causes of the aversive behaviour observed, because they cannot be verified. We recommend that interpretations of the behaviour of particular patients should be discussed by nurses with physicians, other disciplines and the patient's family to obtain more insight into all its possible causes and to determine together the most likely interpretation and appropriate way in which to deal with the aversive behaviour. This would give nurses more confidence and improve the quality and continuity of care provided. To structure the search for possible causes of aversive behaviour, we developed a framework of causes of aversive behaviour and domains of functioning.

Aged↗

How should preconceptional cystic fibrosis carrier screening be provided? Opinions of potential providers and the target population.

BACKGROUND: Since the identification of the cystic fibrosis (CF) gene, large-scale CF carrier screening has become possible. One possible target group is couples planning a pregnancy (preconceptional screening), providing a maximum number of reproductive options and a minimum of time constraints. OBJECTIVES: To identify obstacles in the implementation of a preconceptional CF carrier screening programme, to find out how potential providers and the target population think the screening should be implemented, and to determine whether potential providers think they are able to provide the screening programme. METHODS: A survey was conducted among 200 general practitioners (GPs), 134 Municipal Health Service (MHS) workers and 303 recently married couples. RESULTS: 52% (102/197) of the eligible GPs participated, 84% (113/134) of the MHS workers and 70% (380/544) of the individuals planning a pregnancy. In general, potential providers and the target population had a positive attitude towards CF screening. Preferred methods of informing the target population were: in leaflets, during a GP consultation for those people seeking advice before pregnancy, and sending a personal invitation to all people of reproductive age. Potential providers believed that they would be able to provide the screening programme. Important perceived obstacles were the absence of a preconceptional care setting, high workload, and lack of financial resources. CONCLUSION: Different intervention strategies will be necessary to overcome the obstacles in the implementation. The positive attitude towards CF carrier screening in combination with the willingness of the potential providers to participate in the screening programme will make it easier to overcome the obstacles.

Adult↗

Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study.

OBJECTIVE: To clarify the practice of withholding the artificial administration of fluids and food from elderly patients with dementia in nursing homes. DESIGN: Qualitative, ethnographic study in two phases. SETTING: 10 wards in two nursing homes in the Netherlands. PARTICIPANTS: 35 patients with dementia, eight doctors, 43 nurses, and 32 families. RESULTS: The clinical course of dementia was considered normal and was rarely reason to begin the artificial administration of fluids and food in advanced disease. Fluids and food seemed to be given mainly when there was an acute illness or a condition that needed medical treatment and which required hydration to be effective. The medical condition of the patient, the wishes of the family, and the interpretations of the patients' quality of life by their care providers were considered more important than living wills and policy agreements. CONCLUSIONS: Doctors' decisions about withholding the artificial administration of fluids and food from elderly patients with dementia are influenced more by the clinical course of the illness, the presumed quality of life of the patient, and the patient's medical condition than they are by advanced planning of care. In an attempt to understand the wishes of the patient doctors try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family.

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Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a disease that causes progressive paralysis leading to respiratory failure. Patients with ALS may consider physician-assisted suicide. However, it is not known how many patients, if given the option, would actually decide to end their lives by physician-assisted suicide or euthanasia nor at what stage of the disease they would choose to do so. METHODS: We identified physicians of 279 patients in the Netherlands with a diagnosis of ALS who died between 1994 and 1999. Physicians were asked to fill out a validated questionnaire about the end-of-life decisions that were made. Of 241 eligible physicians, 203 returned the questionnaire (84 percent). RESULTS: Of the 203 patients, 35 (17 percent) chose euthanasia and died that way. An additional six patients (3 percent) died as a result of physician-assisted suicide. Patients to whom religion was important were less likely to have died as a result of euthanasia or physician-assisted suicide. The choice of euthanasia or physician-assisted suicide was not associated with any particular characteristics of the disease or of the patient's care, nor was it associated with income or educational level. Disability before death was significantly more severe in patients who died as a result of euthanasia than among those who died in other ways. Physician-assisted suicide appeared to occur somewhat earlier in the course of the disease than did euthanasia. An additional 48 patients (24 percent) received palliative treatment, which probably shortened their lives. CONCLUSIONS: In the Netherlands, we found that one in five patients with ALS died as a result of euthanasia or physician-assisted suicide.

Advance Directives↗

Severe dementia and adverse outcomes of nursing home-acquired pneumonia: evidence for mediation by functional and pathophysiological decline.

OBJECTIVES: To assess whether the severity of dementia is related to unfavorable outcomes of nursing home-acquired pneumonia and how this relationship is mediated. DESIGN: Prospective cohort study. SETTING: Psychogeriatric wards of 61 nursing homes in the Netherlands. MEASUREMENTS: Dementia severity and the possible mediators swallowing disturbance, aspiration, insufficient food intake, weight loss, and dehydration were measured and related to the following outcomes: death (rate), cure rate, and increase in discomfort at the onset of pneumonia. PARTICIPANTS: Demented patients (n = 374) treated with antibiotics for pneumonia. RESULTS: Dementia severity was independently related to death rate within the first week after pneumonia (hazard rate ratio = 3.0 for the most severely demented quartile versus the least demented quartile, 95% confidence interval (CI) = 1.1-8.3) and to 3-month mortality (odds ratio (OR) 2.5, 95% CI = 1.1-5.4). The latter relation was in part mediated by aspiration and weight loss (OR dementia severity adjusted for these mediators declined from 2.5 to 1.9, 95% Cl = 0.8-4.3). Dementia severity was not related to cure rate within 2 weeks nor to an in-crease in discomfort after 3 days compared with before the pneumonia. CONCLUSION: The functional and pathophysiological consequences of progressive dementia account in part for increased 3-month mortality after pneumonia. Mid-term mortality is expected to be high only in the most severely demented patients and in less severely demented patients who aspirated or who lost weight. Implications for end-of-life decision-making and effectiveness of preventive and curative interventions are discussed.

Adult↗

Pneumonia: the demented patient's best friend? Discomfort after starting or withholding antibiotic treatment.

OBJECTIVES: To assess suffering in demented nursing home patients with pneumonia treated with antibiotics or without antibiotics. This study should provide the first empirical data on whether pneumonia is a "friend" or an "enemy" of demented patients and promote a debate on appropriate palliative care. DESIGN: Prospective cohort study. SETTING: Psychogeriatric wards of 61 nursing homes in the Netherlands. PARTICIPANTS: Six hundred sixty-two demented patients with pneumonia treated with (77%) or without (23%) antibiotics. MEASUREMENTS: Using an observational scale (Discomfort Scale-Dementia of Alzheimer Type), discomfort was assessed at the time of the pneumonia treatment decision and periodically thereafter for 3 months or until death. (Thirty-nine percent of patients treated with antibiotics and 93% of patients treated without antibiotics died within 3 months.) Physicians also offered a retrospective judgment of discomfort 2 weeks before the treatment decision. In addition, pneumonia symptoms were assessed at baseline and on follow-up. Linear regression was performed with discomfort shortly before death as an outcome. RESULTS: A peak in discomfort was observed at baseline. Compared with surviving patients treated with antibiotics, the level of discomfort was generally higher in patients in whom antibiotic treatment was withheld and in nonsurvivors. However, these same patients had more discomfort before the pneumonia. Breathing problems were most prominent. Shortly before death from pneumonia, discomfort increased. Discomfort was higher shortly before death when pneumonia was the final cause of death than with death from other causes. CONCLUSION: Irrespective of antibiotic treatment, pneumonia causes substantial suffering in demented patients. Adequate symptomatic treatment deserves priority attention.

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High physical and psychosocial load at work and sickness absence due to neck pain.

OBJECTIVES: This study investigates the relationship between physical and psychosocial load at work and sickness absence due to neck pain. METHODS: A prospective cohort study with a follow-up period of 3 years (1994-1998) was performed among a working population. At the beginning of the study, physical load at work was quantified by means of video recordings. Work-related psychosocial variables were measured by means of the Job Content Questionnaire. The frequency of sickness absence due to neck pain with a minimal duration of 3 days was assessed on the basis of company registrations during the follow-up period. Altogether 758 workers were included in the analyses. Possible confounding by individual characteristics, physical load, and psychosocial load was studied. RESULTS: Work-related neck flexion and neck rotation, low decision authority, and medium skill discretion showed statistically significant increased risks for sickness absence due to neck pain (adjusted rate ratios ranging from 1.6 to 4.2). High quantitative job demands, low skill discretion, and low job security showed nonsignificant increased risks for sickness absence due to neck pain (adjusted rate ratios of 2.0, 1.6 and 1.7, respectively). Work-related sitting, conflicting job demands, supervisor support, and co-worker support did not increase sickness absence due to neck pain. CONCLUSION: Work-related neck flexion, neck rotation, low decision authority, and medium skill discretion are risk factors for sickness absence due to neck pain. There are indications that high job demands, low skill discretion, and low job security are also risk factors for sickness absence due to neck pain.

Confounding Factors, Epidemiologic↗

[Whether or not to treat pneumonia curatively in (demented) psychogeriatric patients: evaluation of a guideline for nursing home physicians].

A guideline was developed to support decision-making about whether or not to treat pneumonia curatively in psychogeriatric (demented) nursing home patients. This guideline was developed as a 'checklist of considerations', primarily of the ethical and legal aspects of decision-making. Nursing home physicians used and evaluated the list. The list's acceptance was assessed by measuring the frequency of the list's use, and judgements of the list's contents and 'usefulness'. The list was used in 50 out of 58 participating nursing homes, in 47% of the 489 psychogeriatric patients in whom pneumonia occurred. The list was found somewhat to very useful to support decision-making in 47% of 107 individual patients. For the targeted patient category as a whole, 85% of 48 physicians who were asked retrospectively (one physician per home) found the list somewhat to very useful. The content of the list was judged favourably. In conclusion, the nursing home physicians accepted the considerations of the checklist as a basis for decision-making on whether or not to treat pneumonia curatively in psychogeriatric patients. In the future, the format of the list can be adapted for use in diverse clinical situations. Suggestions are provided to increase user friendliness and usefulness.

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[Measuring discomfort in patients with dementia. Validity of a Dutch version of the Discomfort Scale--dementia of Alzheimer type (DS-DAT)].

The Discomfort Scale--Dementia of Alzheimer Type (DS-DAT) is an instrument to assess discomfort in patients with severe dementia by observing patients' behaviour during five minutes. Trained nursing home physicians collected data of 662 pneumonia patients with dementia. The data were used to test the validity of a Dutch translation of the DS-DAT as a measure of discomfort. Internal consistency of the nine-item instrument was favourable (Cronbach's alpha ranged between 0.82 and 0.84 for different times during and following the pneumonia), and factor analyses indicated measurement of a single concept. Furthermore, as hypothesised, discomfort appeared moderately associated with acute illness. Nursing home physicians' assessment of DS-DAT scores therefore appeared a suitable method to assess discomfort in severely demented psychogeriatric nursing home patients for research purposes. For use in individual patients, results are probably too strongly affected by the chosen time fluctuations of assessment. For this purpose, the current rater assessment instructions should be adapted and tested.

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Unrequested termination of life: is it permissible?

CONCLUSION: One can appreciate and understand why doctors take action to terminate life without being requested by the patient who is suffering unbearably and pointlessly. But in my opinion such action is not permissible from a moral point of view. In the first place there is a danger that interests other than those of the patient will play a decisive role. Furthermore, it is not permissible because the interest of society as a whole is at stake. The safety of all future patients would no longer be guaranteed. It is also not allowed because the medical profession must constantly be on its guard so that it does not become caught up in the situations described above. In nearly every case it should be possible for doctor and patient to discuss the termination of life explicitly and at an early stage. The ultimate reason why termination of life without request of the patient is not permissible is that in principle it will never be possible to draw a clear dividing line between unrequested and unwanted termination of life. However, it is conceivable that in certain cases the conflict of loyalties will be such that unrequested termination of life is justified. In the rare extreme case of an inescapable conflict of equally stringent duties, it may just be necessary to do something which in essence is impermissible.

Altruism↗

Withholding antibiotic treatment in pneumonia patients with dementia: a quantitative observational study.

BACKGROUND: Pneumonia is a life-threatening disease in nursing home patients with dementia. Physicians and families face choices about whether to withhold antibiotics when patients are expected to die soon or when treatment may be burdensome. However, little information exists on what factors influence this complex decision-making process. OBJECTIVE: To identify factors associated with decisions on whether to withhold curative antibiotic treatment in patients with dementia who have pneumonia. METHODS: We performed an observational cohort study with 3-month monitoring for cure and death. Patients with pneumonia (N = 706) were enrolled in nursing home units for patients with dementia from all over the Netherlands (61 nursing homes). Characteristics of patients, physicians, and facilities were related to the outcome of withholding antibiotic treatment. RESULTS: In 23% of the patients, antibiotic treatment was withheld. The other patients received antibiotics with palliative (8%) or curative (69%) intent. Compared with the patients who received antibiotics with curative intent, patients in whom antibiotic treatment was withheld had more severe dementia, had more severe pneumonia, had lower food and fluid intake, and were more often dehydrated. In addition, withholding antibiotics occurred more often in the summer and in patients with an initial episode of pneumonia. Characteristics of facilities and physicians were unrelated to the decision. However, considerable variation occurred in how patient age, aspiration, and history of pneumonia were related to decision making by individual physicians. CONCLUSIONS: In the Netherlands, antibiotic treatment is commonly withheld in pneumonia patients with severe dementia who are especially frail. Understanding the circumstances in which this occurs can illuminate the international discussion of appropriate dementia care.

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Granted, undecided, withdrawn, and refused requests for euthanasia and physician-assisted suicide.

BACKGROUND: The aims of this study were to obtain information about the characteristics of requests for euthanasia and physician-assisted suicide (EAS) and to distinguish among different types of situations that can arise between the request and the physician's decision. METHODS: All general practitioners in 18 of the 23 Dutch general practitioner districts received a written questionnaire in which they were asked to describe the most recent request for EAS they received. RESULTS: A total of 3614 general practitioners responded to the questionnaire (response rate, 60%). Of all explicit requests for EAS, 44% resulted in EAS. In the other cases the patient died before the performance (13%) or finalization of the decision making (13%), the patient withdrew the request (13%), or the physician refused the request (12%). Patients' most prominent symptoms were "feeling bad," "tiredness," and "lack of appetite." The most frequently mentioned reasons for requesting EAS were "pointless suffering," "loss of dignity," and "weakness." The patients' situation met the official requirements for accepted practice best in requests that resulted in EAS and least in refused requests. A lesser degree of competence and less unbearable and hopeless suffering had the strongest associations with the refusal of a request. CONCLUSIONS: The complexity of EAS decision making is reflected in the fact that besides granting and refusing a request, 3 other situations could be distinguished. The decisions physicians make, the reasons they have for their decisions, and the way they arrived at their decisions seem to be based on patient evaluations. Physicians report compliance with the official requirements for accepted practice.

Adult↗

Discomfort in nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone.

BACKGROUND: While there is debate about whether it may be better to forgo than to initiate artificial nutrition and hydration (ANH) in nursing home patients with severe dementia, the consequences of forgoing ANH in these patients, in particular their discomfort, have not yet been investigated. METHODS: In this prospective, longitudinal, observational study of 178 patients in Dutch nursing homes, discomfort was measured at all measurement times according to the observational Discomfort Scale-Dementia of Alzheimer Type. Furthermore, at all measurement times, plausible determinants of discomfort were registered. Data were analyzed with the statistical technique of generalized estimated equations. RESULTS: Decisions to forgo ANH were made most often in severely demented, female patients with an acute illness as the most important diagnosis at that time. The mean level of discomfort was highest at the time of the decision and decreased in the days thereafter. There were substantial differences in level of discomfort between patients. Dyspnea, restlessness, and physicians' observations of pain and dehydration were associated with higher levels of discomfort. Furthermore, patients who were awake had higher levels of observed discomfort than patients who were asleep. CONCLUSIONS: Forgoing ANH in patients with severe dementia who scarcely or no longer eat or drink seems, in general, not to be associated with high levels of discomfort. The individual differences emphasize the need for constant attention for possible discomfort.

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Medical end-of-life decisions made for neonates and infants in the Netherlands, 1995-2001.

End-of-life decision-making for severely affected infants might be influenced by technical advances and societal debates. In 2001, we assessed the proportion of deaths of infants younger than 1 year that were preceded by end-of-life decisions, by replicating a questionnaire study from 1995. This proportion increased from 62% to 68% (weighted percentages), but the difference was not significant. Most of these decisions were to forgo life-sustaining treatment. Decisions to actively end the lives of infants not dependent on life-sustaining treatment remained stable at 1%. The practice of end-of-life decision-making in neonatology of 2001 has changed little since 1995.

Analgesics, Opioid↗

Are pregnant women making informed choices about prenatal screening?

PURPOSE: Prenatal screening should enable pregnant women to make informed choices. An informed decision is defined as being based on sufficient, relevant information and consistent with the decision maker's values. This study aims to assess to what extent pregnant women make informed choices about prenatal screening, and to assess the psychological effects of informed decision-making. METHODS: The study sample consisted of 1159 pregnant women who were offered the nuchal translucency measurement or the maternal serum screening test. Level of knowledge, value consistency, informed choice, decisional conflict, satisfaction with decision, and anxiety were measured using questionnaires. RESULTS: Of the participants, 83% were classified as having sufficient knowledge about prenatal screening, 82% made a value-consistent decision to accept or decline prenatal screening, and 68% made an informed decision. Informed choice was associated with more satisfaction with the decision, less decisional conflict (this applied only to test acceptors), but was not associated with less anxiety. CONCLUSION: Although the rate of informed choice is relatively high, substantial percentages of women making uninformed choices due to insufficient knowledge, value inconsistency, or both, were found. Informed choice appeared to be psychologically beneficial. The present study underlines the importance of achieving informed choice in the context of prenatal screening.

Adult↗

Forgoing artificial nutrition and hydration in nursing home patients with dementia: patients, decision making, and participants.

OBJECTIVE: The purpose of this study is to investigate the characteristics of patients for whom it is decided to forgo artificial nutrition and hydration (ANH) and characteristics of the ANH decision-making process. We conducted an observational study with the use of written questionnaires. For 178 nursing home patients with dementia, the treating nursing home physician (NHP), a family member, and a nurse filled out a questionnaire directly after the decision was made to forgo ANH. RESULTS: We found that most patients had severe dementia and two thirds had an acute illness. Advance care planning had taken place in 68% of the cases. In two thirds of the cases, the primary aim in forgoing ANH was to avoid unnecessary prolongation of life; and nurses seemed to have less influence on the decision-making process than NHPs and family members. Almost all respondents evaluated the decision-making process as "good" or "adequate." Dissatisfaction was felt when the decision had to be made under the pressure of time constraint. CONCLUSIONS: On the basis of these results, we recommend that discussions that include NHPs, family members, and nurses concerning decisions about possible future situations be held on a regular basis. This will form the basis for the difficult ANH decision and will probably reduce the pressure of time constraint.

Advance Directives↗

End-of-life decision making in nursing home residents with dementia and pneumonia: Dutch physicians' intentions regarding hastening death.

When patients with severe dementia become acutely ill, little is known about the extent to which physicians take actions intended to hasten death. For 143 nursing home patients with dementia who died of pneumonia after a decision not to treat with antibiotics, we asked Dutch facility-employed physicians whether they intended to hasten death and any estimated life shortening. In 53% of cases, the physicians reported an explicit intention to hasten death; in another 41% of cases they reported taking into account a probability or certainty that the withholding of antibiotics or other palliative treatments would hasten death. Opiates were frequently used for symptom control (43%), but the administration of medications specifically intended to induce death was rare (2%). Considering all treatments, physicians estimated that life was shortened by 24 hours or less in 46% of patients and 1 month or longer in 24% of patients. The frequent withholding of antibiotics with an intention to hasten death may reflect a willingness to abandon a cure-oriented approach in dying patients for whom prolongation of life is not an aim. The results reflect the importance of explicit goals for medical interventions in patients with end-stage dementia where life-prolonging treatments may be seen as prolonging suffering.

Aged↗

Withholding or starting antibiotic treatment in patients with dementia and pneumonia: prediction of mortality with physicians' judgment of illness severity and with specific prognostic models.

BACKGROUND: To help decision makers plan treatment, the authors assessed clinical predictors of mortality from nursing home-acquired pneumonia in patients with dementia. METHODS: Pneumonia patients treated without (n = 165) or with antibiotics (n = 541) were enrolled in a prospective cohort study in 61 nursing homes. RESULTS: In both groups, clinical judgment of illness severity was a strong predictor for 1-week mortality. Despite large differences in frailty and mortality (83% in untreated patients and 15% in treated patients), separate multivariable logistic models included similar specific predictors. DISCUSSION: Despite profound differences between the 2 independent groups, predictors for short-term mortality were largely similar. We found that, when combined with physicians' clinical judgment, 3 readily assessed predictors (respiratory rate, fluid intake, and eating dependency) helped predict mortality. Our results, if confirmed in an independent population, can help make decision making about antibiotic treatment of pneumonia in patients with dementia more evidence-based.

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