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Jenny T van der Steen

Publications and source records attributed to Jenny T van der Steen.

18 recordsLinked to original sources
PubMed2007

The 'natural' endpoint of dementia: death from cachexia or dehydration following palliative care?

OBJECTIVES: To investigate the causes of death in nursing home patients with dementia, and to compare causes of death in patients who survive until the final phase of dementia with those who die before reaching that phase, adjusted for potential confounders. DESIGN: Observational analysis of a cohort of patients with a prospective follow-up. SETTING: Psychogeriatric nursing home 'Joachim en Anna' in Nijmegen, the Netherlands. PARTICIPANTS: Eight hundred and ninety dementia patients admitted between 1980 and 1989. All patients were followed until death. MEASUREMENTS: The final phase of dementia was defined as total impairment on 20 items of a functional status questionnaire. Immediate causes of death (part 1a of the Dutch death certificate) were classified by the International Classification of Health Problems in Primary Care. RESULTS: The three most important reported immediate causes of death were cachexia/dehydration (35.2%), cardio-vascular disorders (20.9%) and acute pulmonary diseases (20.1%), mainly pneumonia. Cachexia/dehydration was particularly common as a cause of death of patients who survived to the final phase (53.2%); survival to the final phase of dementia was an independent predictor of cachexia/dehydration as an immediate cause of death with reference to cardiovascular disorders in multinomial regression adjusted for age at death, gender, and type of dementia. CONCLUSION: Patients who survive to the final phase of dementia are more likely to die from cachexia or dehydration than those who die before. The findings contribute to a debate on what should be reported as the immediate cause of death in dementia including perspectives from a palliative care viewpoint.

Activities of Daily Living↗
PubMed2006

Predictors of mortality for lower respiratory infections in nursing home residents with dementia were validated transnationally.

BACKGROUND AND OBJECTIVE: Generalizability of clinical predictors for mortality from lower respiratory infection (LRI) in nursing home residents has not been assessed for residents with dementia. STUDY DESIGN AND SETTING: In prospective cohort studies of LRI in 61 nursing homes in the Netherlands (n = 541) and 36 nursing homes in Missouri, USA (n = 564), we examined 14-day and 1- and 3-month mortality in residents with dementia who were treated with antibiotics. RESULTS: A logistic model predicting 14-day mortality derived from Dutch data included eating dependency, elevated pulse, decreased alertness, respiratory difficulty, insufficient fluid intake, high respiratory rate, male gender, and pressure sores. After adjusting coefficients with the heuristic shrinkage factor, the 14-day model showed good discrimination and calibration in both datasets. The apparent c-statistic for the original Dutch model was 0.80 (after correction for optimism, it was 0.75); the c-statistic was 0.74 in the U.S. validation population. The models predicting 1- and 3-month mortality showed moderate performance. A scoring system for estimating 14-day mortality performed equally well as the original model. CONCLUSION: We identified a set of credible clinical predictors that are easily assessed and demonstrated validity in identifying residents at low risk of dying from LRI across different nursing home populations. This tool should inform decision-making for families and doctors.

Aged↗
PubMed2006

Defining severe dementia with the Minimum Data Set.

BACKGROUND: Accurately defining severe dementia is important for care and prognosis, but is not explicitly included in the Minimum Data Set (MDS). OBJECTIVE: To define severe dementia using the MDS, we used data for nursing home residents with moderate to severe dementia. METHODS: Two cross-sectional studies enrolled 175 residents; 89 residents from one US Veterans Affairs nursing home, and 86 residents from nine Dutch nursing homes. Measurements included the Cognitive Performance Scale (CPS; range: 0-6), activities of daily living (ADL) dependency, and the Bedford Alzheimer Nursing Severity-Scale (BANS-S; range: 7-28), a staging instrument specific for severe dementia. RESULTS: Half of the residents received CPS scores of 5, and their BANS-S scores varied widely. There was fair agreement (kappa=0.36) between severe cognitive impairment as defined by the CPS (scores 5 and 6) and the BANS-S (score 17 or higher). Addition of an ADL dependency requirement to the CPS definition improved agreement (kappa=0.75). The observed patterns were similar but more obvious for US residents than for Dutch residents. CONCLUSION: Cognitively impaired residents comprise a heterogeneous group with a wide variety of function. Restriction with respect to ADL dependency allows for distinction between moderate and severe dementia. We propose the following MDS-based definition of severe dementia: a CPS score of 5 or 6 with a minimum score of at least 10 points on the MDS ADL-Short Form.

Activities of Daily Living↗
PubMed2005

Symptoms, signs, problems, and diseases of terminally ill nursing home patients: a nationwide observational study in the Netherlands.

BACKGROUND: Nursing homes (NHs) are less well studied than hospices or hospitals as a setting for terminal care. For more targeted palliative care, more information is needed about the patient characteristics, symptoms, direct causes and underlying diseases, and incidence of terminally ill NH patients. These aspects are examined in this study. METHODS: Prospective observational cohort study in 16 NHs representative of the Netherlands. All long-term care patients assessed by an NH physician to have a life expectancy of 6 weeks or less were enrolled in our study. RESULTS: The terminal disease phase was marked with symptoms of low fluid and food intake, general weakness, and respiratory problems or dyspnea. Direct causes of these conditions were diseases of the respiratory system (mainly pneumonia) and general disorders (eg, cachexia). The 2 main underlying diseases of the terminal phase were mental and behavioral disorders and diseases of the circulatory system. Cancer was the underlying disease in only 12% of the patients. Patients with cancer showed a different pattern of symptoms than those without cancer. Per 100 beds per year, 34 NH patients entered the terminal phase. Most patients (82.9%) died within 7 days of inclusion. CONCLUSIONS: For patients without cancer in Dutch NHs, the terminal disease phase is difficult to predict, and once diagnosed, patient survival time is short. A better identification of the symptom burden might improve the prognostication of life expectancy in elderly patients.

Aged↗
PubMed2005

The last days of life of nursing home patients with and without dementia assessed with the palliative care outcome scale.

UNLABELLED: The aim of this study was to assess the Palliative care Outcome Scale (POS) for terminally ill nursing home (NH) patients in the Netherlands. METHODS: A prospective observational study of patients with a life-expectancy of six weeks or less in 16 Dutch NHs. NH staff rated the patient characteristics and measured palliative care with the POS, including items on physical, psychosocial, informational, spiritual and practical aspects. RESULTS: POS nonscores (not applicable; unknown) were mainly found in the psychosocial and spiritual domains, particularly in patients with dementia. Mean scores for non-demented patients and patients with dementia were favourable for the majority of the POS items. CONCLUSION: According to the NH staff, fairly good quality care was provided, but the psychosocial and spiritual aspects of care need to be addressed more in the last days of the dying NH patient's life. The results indicate that the POS is an appropriate instrument to assess not only cancer patients, but also non-cancer and (moderately) severely demented patients.

Aged↗
PubMed2004

Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and The Netherlands: an ocean apart.

OBJECTIVES: To compare treatment of nursing home residents with dementia and lower respiratory tract infection (LRI) in Missouri and the Netherlands. DESIGN: Two separate but simultaneous prospective cohort studies. SETTING: Nursing homes in Missouri (n=36) and the Netherlands (n=61). PARTICIPANTS: Selected residents (701 from Missouri and 551 from the Netherlands) diagnosed with LRI and dementia. MEASUREMENTS: Treatment, dementia severity, symptoms and signs of LRI, and general health condition were recorded at the time of diagnosis of LRI. Death was monitored at follow-up. Treatment and mortality, stratified for dementia severity, are reported. RESULTS: Treatment of nursing home-acquired LRI in Missouri residents involved a larger number of antibiotics, more frequent hospitalization, and greater use of intravenous antibiotics and rehydration therapy than in Dutch residents of equal dementia severity. Furthermore, for Missouri residents, intensive interventions were more often provided irrespective of severe dementia. By contrast, in both countries, treatments to relieve symptoms of LRI were provided for only a minority of residents. Dutch mortality rates were higher overall. CONCLUSION: Care for U.S. nursing home residents with LRI and dementia is more aggressive than care for Dutch residents, particularly in residents with severe dementia. These results are relevant to the debate on optimal care in relation to curative or palliative treatment goals.

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PubMed2003

Lower respiratory infections in nursing home residents with dementia: a tale of two countries.

PURPOSE: A focus on palliative care for residents with dementia is much more common in Dutch nursing homes than in the United States. We compared treatment and mortality in U.S. and Dutch nursing home residents with lower respiratory infections (LRI), which are often the immediate cause of death in dementia. DESIGN AND METHODS: We studied two prospective cohorts--a study of pneumonia (n = 706) conducted in 61 psychogeriatric nursing homes throughout the Netherlands and 701 subjects with likely dementia from a study of LRIs in 36 nursing homes in Missouri. RESULTS: Nursing home residents with dementia were more often treated without antibiotics in the Netherlands (23%) than in Missouri (15%). Indicators of severe illness operate in opposite directions: more severe illness is associated with antibiotic treatment in the United States, but with palliative treatment without antibiotics in the Netherlands. IMPLICATIONS: Our findings are consistent with others in indicating problems with transition to palliative care for U.S. nursing home residents with dementia.

Aged↗
PubMed2003

[Retrospective assessment of the Dutch version of the Discomfort Scale--Dementia of Alzheimer Type (DS-DAT): is estimation sufficiently valid and reliable?].

The Discomfort Scale--Dementia of Alzheimer Type (DS-DAT) measures discomfort in severely demented patients with scores on nine items with behavioral descriptors. Direct observation of behaviour is the preferred method in severely demented patients, but is not feasible for some types of research. Alternatively, a patient's score may be assessed 'retrospectively', scoring an overall picture of the patient. To assess validity and reliability of such retrospective assessments, five observers--three nursing home physicians and two paramedicals--gave a DS-DAT score for 77 nursing home patients by direct observation, and, two weeks later, retrospectively. The mean score of the five observers was not different. The Intra-class Correlation Coefficient for intra-observer reliability was 0.50 for the five observers, and 0.55 for the three nursing home physicians. Our study demonstrated the possibility of a reasonably valid, but moderately reliable retrospective assessment of the Dutch version of the DS-DAT. Appropriate training of nursing home physicians who know their patients well may be required for this.

Alzheimer Disease↗
PubMed2002

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↗
PubMed2002

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.

Aged↗
PubMed2002

[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.

Aged↗
PubMedDate not supplied

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.

Aged↗
PubMedDate not supplied

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↗
PubMedDate not supplied

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.

Aged↗
PubMedDate not supplied

Antibiotic treatment and survival of nursing home patients with lower respiratory tract infection: a cross-national analysis.

PURPOSE: Although lower respiratory tract infections are a leading cause of death in frail elderly patients, few studies have compared treatments and outcomes. We assessed the effects of different antibiotic treatment strategies on survival of elderly nursing home residents with lower respiratory tract infections in the United States and the Netherlands, where treatment approaches are quite different. METHODS: We combined data from 2 prospective cohort studies of lower respiratory tract infections conducted in 36 nursing homes in the United States and 61 in the Netherlands. We included residents whose infections were treated with antibiotics: 806 in the United States and 415 in the Netherlands. Outcome measures were 1-month and 3-month mortality. We used logistic regression to adjust for differing illness severity. RESULTS: Dutch residents had higher mortality than US residents (28.1% vs 15.1% at 1 month, respectively; P <.001). After adjusting for illness severity with logistic regression, the differences between the Dutch and US populations were not significant (odds ratio 1.34; 95% confidence interval, 0.94-1.90). Predicted mortality was overestimated for more severely ill US residents at 1 month but not at 3 months. No antibiotic regimen was consistently associated with increased or decreased mortality. CONCLUSION: Despite differences in illness severity and treatment, adjusted mortality did not differ between the 2 countries. Although we cannot exclude a short-term survival benefit from more aggressive treatment in the United States, differences in baseline health appear prognostically more important than the type of antibiotic treatment.

Aged↗
PubMedDate not supplied

A cross-cultural study of physician treatment decisions for demented nursing home patients who develop pneumonia.

PURPOSE: We wanted to explore factors that influence Dutch and US physician treatment decisions when nursing home patients with dementia become acutely ill with pneumonia. METHODS: Using a qualitative semistructured interview study design, we collected data from 12 physicians in the Netherlands and 12 physicians in North Carolina who care for nursing home patients. Our main outcome measures were perceptions of influential factors that determine physician treatment decisions regarding care of demented patients who develop pneumonia. RESULTS: Several themes emerged from the study. First, physicians viewed their patient care roles differently. Dutch physicians assumed active, primary responsibility for treatment decisions, whereas US physicians were more passive and deferential to family preferences, even in cases when they considered families' wishes for care as inappropriate. These family wishes were a second theme. US physicians reported a perceived sense of threat from families as influencing the decision to treat more aggressively, whereas Dutch physicians revealed a predisposition to treat based on what they perceived was in the best interest of the patient. The third theme was the process of decision making whereby Dutch physicians based decisions on an intimate knowledge of the patient, and American physicians reported limited knowledge of their nursing home patients as a result of lack of contact time. CONCLUSION: Physician-perceived care roles regarding treatment decisions are influenced by contextual differences in physician training and health care delivery in the United States and the Netherlands. These results are relevant to the debate about optimal care for patients with poor quality of life who lack decision-making capacity.

Adult↗