Investigations have shown that symptom prevalence varies according to the place of death. We sought to assess the symptom prevalence of chronically ill people in Germany and how this prevalence differs depending on the place of death. We sent questionnaires to 5000 bereaved people in Rhineland-Palatinate (Germany), whose relatives died between May 25 and August 24, 2008. In all, 3832 questionnaires were delivered and 1378 completed (response 36.0%). Most decedents had moderate-to-severe weakness (94.5%), fatigue (93.5%), need for help in daily activities (87.9%), and appetite loss (87.4%). Pain and dyspnea were most severe in hospitals; fatigue, confusion/disorientation, and problems with wound care in nursing homes; and need for help in daily activities and overburden of family at home. Associations persisted after adjusting for potential confounders.
[Show abstract][Hide abstract] ABSTRACT: Background:
There is scant research concerning the prediction of imminent death, and current studies simply list events "that have already occurred" around 48 h of the death. We sought to determine what events herald the onset of dying process using the length of time from "any change" to death.
This is a prospective observational study with chart audit. Inclusion criteria were terminal cancer patients who passed away in a palliative care unit. The analysis was limited to 181 patients who had medical records for their final week. Commonly observed events in the terminally ill were determined and their significant changes were defined beforehand. We selected the statistically significant changes by multiple logistic regression analysis and evaluated their predictive values for "death within 48 h."
The median age was 67 years and there were 103 male patients. After adjusting for age, sex, primary cancer site, metastatic site, and cancer treatment, multiple logistic regression analyses for association between the events and "death within 48 h" revealed some significant changes: confused mental state, decreased blood pressure, increased pulse pressure, low oxygen saturation, death rattle, and decreased conscious level. The events that had higher predictability for death within 48 h were decreased blood pressure and low oxygen saturation, and the positive and negative predictive values of their combination were 95.0 and 81.4%, respectively.
The most reliable events to predict impending death were decreased blood pressure and low oxygen saturation.
Supportive Care in Cancer 09/2012; 21(3). DOI:10.1007/s00520-012-1587-4 · 2.36 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: No detailed information has been available until now about the care setting, circumstances and place of death, symptom burden, and quality of care of persons with end-stage dementia in Germany.
This cross-sectional study is based on a random sample of 5000 persons who died in the period from 25 May to 24 August 2008 in the German federal state of Rhineland-Palatinate. Their surviving relatives were contacted and asked to participate in a questionnaire survey. Data were obtained in this way for 310 persons with dementia and 931 persons without dementia.
42.4% of the persons with dementia died at home. Most patients and their relatives preferred death at home to death anywhere else (94.8% of patients, 77.5% of relatives). Persons living with at least one relative were more likely to die at home (adjusted odds ratio [aOR] 4.69, 95% confidence interval [CI] 2.71-8.11). According to information supplied by the relatives, the overwhelming majority of patients suffered, two days before death, from moderate to severe weakness (94.9%), fatigue (94.4%), disorientation/confusion (86.9%), and appetite loss (86.4%). Other common symptoms were anxiety (61.0%), tension (59.9%), dyspnea (56.7%), and pain (52.5%). The relatives were critical of the quality of care on standard hospital wards, citing the limited temporal availability of staff and limited emotional support.
These data indicate the high symptom burden of persons with dementia in Germany at the end of their lives. They underscore the need for proper palliative care in all of the settings where persons with dementia die. Specialized in- and outpatient palliative care should not be offered only to patients with cancer, but should rather be made available to all who need it.
Deutsches Ärzteblatt International 03/2013; 110(12):195-202. DOI:10.3238/arztebl.2013.0195 · 3.52 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Care homes are increasingly becoming places where people spend the final stages of their lives and eventually die. This trend is expected to continue due to population ageing, yet little is known about public preferences regarding this setting. As part of a larger study examining preferences and priorities for end of life care, we investigated the extent to which care homes are chosen as the least preferred place of death, and the factors associated with this negative preference.
We conducted a cross-sectional telephone survey among 9,344 adults from random private households in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We asked participants where they would least prefer to die in a situation of serious illness with less than one year to live. Multivariate binary logistic regressions were used to identify factors associated with choosing care homes as the least preferred place of death in each country.
Care homes were the most frequently mentioned least preferred place of death in the Netherlands (41.5%), Italy and Spain (both 36.7%) and the second most frequent in England (28.0%), Portugal (25.8%), Germany (23.7%) and Flanders (18.9%). Only two factors had a similar and significant effect on the least preferred place of death in more than one country. In Germany and the Netherlands those doing housework were less likely to choose care homes as their least preferred place (AOR 0.72; 95% CI:0.54-0.96 and AOR 0.68; 95% CI:0.52-0.90 respectively), while those born in the country where the survey took place were more likely to choose care homes (AOR 1.77; 95% CI:1.05-2.99 and AOR 1.74; 95% CI:1.03-2.95 respectively). Experiences of serious illness, death and dying were not associated with the preference.
Our results suggest it might be difficult to promote care homes as a good place to die. This is an urgent research area in order to meet needs and preferences of a growing number of older people with chronic, debilitating conditions across Europe. From a research perspective and in order to allow people to be cared for and die where they wish, our findings highlight the need to build more in depth evidence on reasons underlying this negative preference.
BMC Palliative Care 10/2014; 13(48). DOI:10.1186/1472-684X-13-48 · 1.78 Impact Factor
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