Abstract
Abstract
Purpose:
To test if care to relief suffering in patients with dementia who become ill with pneumonia is improving, we compared treatments in cohorts of patients with dementia and pneumonia a decade apart.
Participants and methods:
We studied 61 nursing homes in The Netherlands between 1996–1998 and 54 nursing homes between 2006–2007, 53 of which had been in the earlier cohort. In 1996–1998, 706 patients with pneumonia and dementia were prospectively enrolled by 201 physicians and in 2006–2007, 72 patients by 69 physicians. Data collected included treatment, physician and patient characteristics, outcome, and additionally, in the 2006–2007 cohort only, physicians' perception of changes in treatment they generally provide.
Results:
The frequency of providing antibiotics was similar: 79% in the recent cohort versus 77% ten years earlier (p = 0.63) as was oral antibiotic treatment (91% of those receiving antibiotics versus 88%; p = 0.44). Treatment to relieve symptoms was provided more frequently in the more recent cohort. For example, antipyretics (54% versus 34%; p = 0.001), oxygen (29% versus 13%; p < 0.001), and opiates (22% versus 10%; p = 0.003). Differences were not explained by different case mix. Half of physicians (49%) stated they generally treat to relieve symptoms more frequently than before.
Conclusions:
Symptom relief to Dutch patients with dementia and pneumonia is provided more frequently than a decade ago while the rate of treatment with antibiotics is unchanged. Further studies in The Netherlands and elsewhere are needed to detect if this is a general trend.
Introduction
There is significant discomfort in patients dying with pneumonia and previous studies showed that neither U.S. nor Dutch physicians provide adequate symptom relief. 5 For example, despite frequent respiratory difficulty, only 15% of Dutch patients and 12% of U.S. patients with severe dementia received oxygen. 3 This and other studies suggest inadequate palliative treatment for comfort and symptom relief is provided to patients with dementia.6–8 With increasing numbers of people with dementia in Western countries, most dying in nursing homes, 9 research on death with dementia is increasing. While only 4 studies reporting quantitative data on dying with dementia were published before 2000,10–13 at least 29 have been published between 2000 and February 2009 (updated review).14,15 Additionally, many qualitative studies report serious care deficiencies. That an increasing awareness of the importance of providing symptom relief in patients with dementia is improving clinical practice, was recently shown in Switzerland where hospitalized patients with dementia did not receive more aggressive life-prolonging care than cognitively intact patients from doctors with an interest in palliative care. 16 In this article, we compare recent treatment of patients with dementia and pneumonia in Dutch nursing homes to those from our studies in the late 1990s,2,5 examining whether there has been an increased tendency to provide symptom relief.
Methods
Design of two studies
Our first cohort in this study was derived from a prospective study on pneumonia in nursing home patients who resided in wards for older people with cognitive and noncognitive psychiatric problems, the majority (96%) 2 of whom had dementia. This study was conducted between October 1996 and July 1998 and enrolled 706 cases of pneumonia in 61 Dutch nursing homes, which represented 24% of the country's nursing home beds for these patients. Physicians studied were trained in nursing home medicine, a system that is unique to The Netherlands. 17 We reported on their decision making, as well as treatment, and prognosis.2,5,18
Diagnosis of pneumonia was based on clinical judgment (chest auscultation and clinical symptoms).
In 2006 we established a second cohort by asking 55 of the 61 nursing homes that had participated in the previous study to participate in an clinical impact analyses of a prognostic score, which estimated 2-week mortality after antibiotic treatment and was based on the first study.18,19 Two nursing homes were not asked because they were participating in another study, 2 did not have dementia wards, and 2 had merged into a larger institute. Two nursing homes refused while 1 new affiliated home participated. Therefore, 54 nursing homes participated, 96% (53/55) of those recruited. Nursing homes were randomized into a control group (27 homes) not using the prognostic score and an intervention group (27 homes) using it. There were no differences in treatment between these two groups so data from both were combined for analyses (e.g., 82% of cases in the intervention group and 78% of cases in the control group received antibiotics (p = 0.53)). Participating physicians were instructed to enroll their next case of pneumonia with the physician being the unit of analysis.
Participating physicians completed a survey, and invited their colleagues treating dementia patients to do so as well. Patient status was assessed between 2 and 7 months after conclusion of the enrollment period. Data were collected between July 2006 and March 2008; the last new case was diagnosed in August 2007. The study protocols were approved by the Medical Ethics Committee of the VU University Medical Center in Amsterdam.
Data elements
The survey included patient and physician characteristics, signs and symptoms of pneumonia, prognosis, treatment, and decision making. The physicians in the intervention group also completed an evaluation of the prognostic score, 19 while physicians in the control group completed an instrument on uncertainty in decision making (unpublished data).
We examined proportions of patients of both cohorts that met a surveillance definition for lower respiratory infection 20 using a conservative approach for missing values (imputed not present). Dementia severity was measured with the Bedford Alzheimer Nursing Severity-Scale (BANS-S), a 7-item instrument (total score range, 7–28) that discriminates in more severe stages of dementia. 21 Clinical judgment of illness severity was assessed using a global illness severity measure scaled from 1 (not ill) to 9 (moribund). 22 Risk of dying within 2 weeks when treated with antibiotics was calculated using the prognostic score. 18 Two-week mortality was assessed.
Physicians checked a list of their chosen treatment for the pneumonia which we categorized as antibiotics and hospitalization (mainly curative), supportive, or symptom relief. The timing of the rehydration was reported at the time of the initial treatment decision in the new cohort while up to three days were allowed in the old cohort. Bronchodilators and corticosteroids were coded from an open-ended question “any other treatment” in the older study, but specifically listed in the newer. Opiate dosage and detail on treatment goals were asked only in the new cohort. We distinguished between a palliative care goal (symptom relief even if it possibly prolonged life) and comfort care (symptom relief that would not prolong life, which is commonly called “symptomatic treatment” in The Netherlands).23,24
Physicians' full-time equivalents duty time, details about training, and knowledge of the patient were asked only in the newer study. The newer survey also asked the physicians, “Over the last 10 years, or since you have been a nursing home physician, are you generally treating more frequently, or less frequently with antibiotics, and are you more frequently using medication to relieve symptoms?”
Analyses
We used Pearson χ2 to test differences in dichotomous variables representing characteristics and treatments between the new and old cohort, and two-tailed t tests for continuous variables. Power analyses (80%; α 0.05) indicated statistical significance would be achieved for differences between 6% (hospitalization; rare) and 18% (relief of fever; closest to 50%). We explored subgroups treated and untreated with antibiotics, but because the newer cohort included only 15 untreated cases, we did not test for statistical significance. We also tested if results changed when restricting analyses to the first case for each physician, and when selecting the physicians who enrolled patients in both studies, and we compared several time windows within the 1996–1998 study.
Using binary logistic regression, we explored associations of physicians' experience, trainee status, and physicians' demographics with antibiotic treatment as the dependent variable, adjusting for the cohort, and also studying the cohorts separately. The same approach was followed for symptom relief, including opioid use, as the dependent.
Missing patient values were generally less than 5%. Physician characteristics were more frequently missing (11%–13%). Analyses were performed with SPSS version 14 (SPSS Inc., Chicago, IL).
Results
One third of eligible physicians (33%) enrolled a case of pneumonia with a mean of 246 days of follow-up in the newer cohort (70/213, with 3 physicians enrolling 2 cases, and 1 survey lost in the mail). Most of the 201 physicians participating in the older study included 1 (30% of physicians), 2 (21%), or 3 (13%) patients, while some treated 10 or more, up to 13 (5%). In the newer cohort (2006–2007), nursing homes were larger with a mean of 163 (standard deviation [SD] 95) dementia care beds versus 142 (SD 62) in the older cohort (1996–1998; p = 0.012).
Table 1 presents characteristics of patients and physicians in both cohorts. Patients were similar in demographics, dementia severity, illness severity, and prognosis. Mortality was not different between the cohorts (2-week mortality in treated patients: 29% in the newer cohort and 23% in the older cohort; untreated patients: 93% versus 87%, respectively).
Patients who did not have dementia had other cognitive problems, for example due to mental disability or Korsakoff.
LRI, Lower Respiratory tract Infection; SD, standard deviation; BANS-S, Bedford Alzheimer Nursing Severity Scale.
Physicians were more frequently in training in the older cohort with an average of 4 years less experience when compared to the newer cohort of physicians. In the newer cohort (not shown in Table 1), 26% of physicians practiced fulltime in the nursing home, 38% between 4 days per week and full time, and 36% between 2 and 4 days. Only 1% of physicians were not trained in The Netherlands. Seven percent of physicians had followed a training program in palliative care, which has only been available since 2002. In 10% of cases, patients were treated by a physician on call who had not seen them before, 11% by a physician on call who did know the patient, and 79% by their own physician.
Treatment
Antibiotic use, hospitalization rate, and supportive treatment were similar in the newer and the older cohort (Table 2). Antibiotics were withheld in 21% and 23% of cases, respectively, and hospitalization and artificial hydration or feeding were rare. Intent to relieve symptoms increased significantly in the newer cohort including goal of relieving fever (73% increase), relieving shortness of breath (more than doubled), and relieving coughing (fivefold increase). These goals were reflected in the increased use of antipyretics, opiates, oxygen, bronchodilators, and corticosteroids.
3% missing data.
Amoxicillin plus clavulanate versus all other types.
Oral versus parenteral antibiotics.
NSAID, nonsteroidal anti-inflammatory drugs; SD, standard deviation.
There was no significant difference in treatment goals regarding pain and psychological symptoms or use of benzodiazepines. In the newer cohort, opioid (morphine) dosage varied between 2.5 mg and 60 mg per 24 hours. Life prolongation was a treatment goal for less than half (39%) of patients in the newer cohort.
The primary goal of antibiotic treatment was relief of suffering rather than cure in a few cases in both cohorts (Table 2). In the newer cohort, we distinguished between palliative care (9%) and comfort care (7%). There was a shift in type of antibiotic provided: amoxicillin plus clavulanate was provided to over half (61%) of cases in the new cohort, where it was mostly amoxicillin (61%) in the older cohort. Nine of 10 patients received oral antibiotics rather than parenteral in both cohorts.
Treatment with antipyretics and oxygen was more frequent in patients treated with antibiotics (not shown in Table 2). In patients treated with antibiotics, antipyretics were provided to 58% of cases in the newer cohort and 31% in older cohort, while in patients not treated with antibiotics there was hardly any difference (40% [6/15 cases] versus 44%). Oxygen was provided to 32% of patients treated with antibiotics in the newer cohort and 13% in the older cohort, while there was less difference in patients not treated with antibiotics (20% [3/15 cases] versus 15%). Bronchodilators and corticosteroids were hardly used in the older cohort and were used mainly in patients treated with antibiotics in the newer cohort (bronchodilators: 23% of antibiotic-treated patients and 7% [1/15 cases] of antibiotic-untreated patients; corticosteroids: 12% of antibiotic-treated patients and none of the antibiotic-untreated patients). By contrast, opioids were prescribed more frequently in the newer cohort, mainly in patients not treated with antibiotics (73% [11/15 cases] in the newer cohort versus 27% in older cohort). In those treated with antibiotics the use of opioids was less frequent and did not change (9% in newer cohort versus 2% in older cohort). Treatment with benzodiazepines remained stable and was less common in antibiotic-treated patients (7% in the newer cohort and 5% in the older cohort) than in nonantibiotic-treated patients (27% [4/15] versus 25%, respectively).
Table 3 shows physicians' self-reported changes in their treatment approach over the last 10 years. Approximately half (49%) report they now treat to relieve symptoms more frequently while reporting little change in their tendency to prescribe antibiotics. Examining cross tabulations, physicians who reported they more frequently treat to relieve symptoms were not more likely to report they had changed their antibiotic prescribing habits. Physicians who treated symptoms more frequently gave a number of reasons for this including better information on how to relieve symptoms, clearer treatment goals, more focus on quality of life or well-being, more frequent accompaniment of curative treatments with symptom relief, and increased awareness that dying patients suffer. Some referred to the results of the older study 5 in making them more sensitive to these issues. Personal experience also resulted in heightened sensitivity to possible suffering and increased acceptance that patients may die. Some added that more patients are severely ill in recent years.
Note: Percentages do not add up to 100 because more frequent treatment with(out) antibiotics could be combined with more frequent treatment to relieve symptoms. The figures presented excluded two cases where more frequent use with and without antibiotics were combined, as well as the second case of the three physicians who enrolled two cases.
Within the older cohort, patients diagnosed later in the study were more likely to be treated for symptom relief, e.g., any of 6 treatments listed in Table 2 was provided to 49% of 154 patients diagnosed in spring 1997 versus 63% of 30 cases in spring 1998. Furthermore, 18 physicians who were the same in both cohorts increased their provision of symptom relief; increasing from a mean of 1.0 treatments of six provided to 75 patients in the older cohort, to 1.5 treatments of 6 to 20 patients in the newer cohort (p =0.008). All indicators of symptom relief increased over time, but NSAIDS use increased modestly due to high initial use (55% to 65%).
Associations of physicians' characteristics with treatments
The decisions to treat with antibiotics, provide symptom relief, or prescribe opioids were not associated with physicians' experience, age, gender, or training status (p > 0.10) in either of the two cohorts. Furthermore, frequency of treatments was similar when restricting analyses to the first case enrolled for physicians who enrolled more than one case.
Discussion
Treatment for symptom relief in patients with dementia and pneumonia is more frequently provided by Dutch nursing home physicians now than in the late 1990s while the use of antibiotics did not change. Treatment with antibiotics is frequently combined with other treatment while the decision not to use antibiotics is associated with more frequent opioid use. The findings were consistent with the physicians' self-reported trends. We believe these changes mainly occurred over time within a cohort, and cannot be explained by physicians in the newer cohort being older and more experienced. Increases in symptom relief were rather modest in the subset of physicians who were in both the earlier and later cohort, but results were essentially the same as in the other physicians. Physicians may have recalled results of the older study in some instances, but most respondents did not recall details from previous work such as having been informed of prognosis. 19 In addition, patient populations were stable and there has been no change in policy of the Dutch professional organization for nursing home physicians.23,24 Therefore, it is likely that we identified a general trend towards more symptom relief in patients with dementia. This is encouraging since in the older cohort we found that patients dying from pneumonia experienced great suffering. 5
Sedatives were not provided more frequently in the newer cohort, maybe because many patients had decreased alertness. Even at the end of life (41% died within 2 weeks), initial opioid dosages seemed directed to symptom relief and not to hastening of death, while for 58% of decedents in the older study, physicians stated to have taken into account hastening of death due to intensified pain and symptom treatment. 25 Provision of antibiotic treatment and hospitalization were modest compared to an earlier U.S. study 4 and remarkably stable through the last decade. Mortality risk 18 seemed to be the most important determinant of antibiotic use in both cohorts, 26 even more important than dementia severity, as reported previously. 2 Since mortality risk was stable, this may explain why there was no change in the withholding of antibiotic treatment, in spite of a recent public debate on euthanasia in patients with dementia, 27 which might have resulted in greater acceptability of withholding curative treatment. Some physicians believe antibiotics increase comfort, whether due to faster resolution of symptoms, or a modest role of antibiotics in increasing comfort in dying patients for which we found some evidence. 28 The replacement of amoxicillin with amoxicillin plus clavulanate raises concerns for increasing antimicrobial resistance, although resistance is not yet as prevalent in The Netherlands as in the United States. 29
Whether our findings reflect a global trend of better palliative treatment in patients with dementia merits further investigation and we recommend examining practices in other countries. Newer studies have questioned the appropriateness of the traditional medical approach towards cure in this population. 30 Repeating this study would reveal if the emphasis on symptom relief persists. A study on the origin of increased awareness of the necessity for adequate symptom relief, which may be mediated by, for example, more attention being paid to palliative care in curricula, medical journals, or standards of care, could inform effective palliative care implementation strategies. Studying the various treatments prescribed to relieve symptoms would also be helpful as little is known about their effectiveness.30–32
A potential limitation of our study is selection bias. It is unclear why physicians who participated in both cohorts exhibited less change than physicians who were in only one cohort. However, the nonresponse was mostly due to not having a case of pneumonia during data collection, organizational issues, or forgetting about the study at the time a pneumonia was diagnosed, issues that likely played a role in nonresponse in the older cohort as well. Physicians in both studies were unaware of the additional goal of detecting trends in treatments. Finally, the observed trends are obvious and consistent across different treatments and time windows.
The power to detect differences in subgroups of antibiotic treatment was limited. Further, increased use of bronchodilators and corticosteroids may have been overestimated because of underreporting in the older cohort where it was coded as “other treatments,” but multiple-fold increases were seen for the treatment goal of relief of coughing. Strengths of our study include sampling of the same homes, use of approximately the same instrument by the same principle investigator, a subsample of the same physicians, stability of case mix, and formal policy.
We conclude that there is an encouraging trend in The Netherlands toward providing treatment that relieves symptoms in patients with dementia and pneumonia. We recommend further studies in other countries to see if this is a global trend. Hopefully, the frequently cited deficiencies in treatment to relieve symptoms in patients with dementia can be addressed.
Footnotes
Acknowledgments
We thank Prof. Margaret R. Helton, M.D., for her helpful suggestions to an earlier, unpublished version of the manuscript. This study was supported by Stichting Wetenschaps Bevordering Verpleeghuiszorg (Society Promoting Scientific Research in Nursing Home Care [SWBV]) Utrecht, The Netherlands.
The study's sponsor had no role in the design or conduct of the study, collection, analysis, interpretation of the data; or preparation or review of the manuscript or the decision to submit for publication.
Author Disclosure Statement
None of the authors have actual or potential conflicts of interest or dual commitments.
Dr. van der Steen is supported by a career award from The Netherlands Organisation for Scientific Research (NWO, the Hague; Veni 916.66.073) and at the time of the study, also by a grant from the Stichting Wetenschaps Bevordering Verpleeghuiszorg (Society Promoting Scientific Research in Nursing Home Care) [SWBV]).
Dr. Meuleman-Peperkamp is supported by Nursing Home Stichting Elisabeth, Breda, The Netherlands.
Prof. Ribbe is supported by the VU University Medical Center, EMGO Institute, Department of Nursing Home Medicine.
