Where do people not want to die? A representative survey of views of general population and health care professionals in the Czech Republic Martin Loucka 1, Sheila A Payne1, Sarah G Brearley1, Ondrej Slama 2, Martina Spinkova3 1
International Observatory on End-of-Life Care, Lancaster University, Lancaster, UK, 2Masaryk Memorial Cancer Institute, Brno, Czech Republic, 3Cesta Domu, o.s., Prague, Czech Republic Introduction: Dying in the preferred place of death is considered to be one of indicators of quality of end-of-life care. Research into health care professionals’ knowledge of patients’ preferences for place of death is therefore important. The aim of this study was to assess the difference between health care professionals and the general public in their views on where do people not want to die. Methods: Secondary analysis of data from a representative survey of the general population and a convenience sample of health care professionals in the Czech Republic. Respondents from the general population were asked where they would not like to die and health care professionals were asked where they think the general population does not want to die. Sample consisted of 1095 respondents from the general population and 1006 health care professionals. Health care professionals were physicians (73.3%) and nurses (26.6%). Results: Long-term care facilities and hospitals were identified as the most undesirable settings for place of death. A significant difference in views on hospices was identified: 6% of health professionals compared to 42.2% of the general population (P < 0.001) indicated a preference for people to not die in hospice. Discussion: The most unwanted settings for place of death were places where most people die. More research is needed to understand the factors influencing preferences and should feed into policy making. Better promotion of hospice care should be developed to communicate to the general public the differences between hospices and other institutions. Keywords: Place of death, Preferences, Hospice care, Eastern Europe, Communication
Introduction Dying at the preferred place of death has been repeatedly confirmed as one of the key indicators of quality of end-of-life care.1–4 Dying at home in particular has been used as an outcome measure of palliative care as it has been identified in a number of studies the main public preference for place of death.5 However, the data about actual place of death show that most people in developed countries die in institutions.6 Despite methodological limitations, such as inconsistent methods,5,7,8 more data on both preferences and actual place of death are needed as the information is crucial for developing public health strategies for end-of-life care.9
Correspondence to: Martin Loucka, International Observatory on End-ofLife Care, Division of Health Research, Faculty of Health and Medicine, Lancaster University, LA1 4YG Lancaster, UK. Email:
[email protected]
© W. S. Maney & Son Ltd 2014 DOI 10.1179/1743291X14Y.0000000088
Previous research has shown that patients and care providers can have different priorities for end-of-life care.10 It has been demonstrated that discussions that incorporate the patient’s values can significantly influence their quality of life, the well-being of family members, and treatment aims.11–14 Talking about place of death preferences should be one part of these discussions.15 The aim of this study was to assess the difference between Czech health care professionals and the general public in their views on where do people not want to die.
Setting The Czech Republic is a Central European country with a population of 10.5 million inhabitants. In 2012, 108 189 people died in the Czech Republic, mostly from cardiovascular and cerebrovascular diseases (44.6%) and malignant neoplasms (26.6%).16
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Trends in place of death are similar to other European countries, with most of the population dying in hospitals (58.4%), at home (20.4), and at institutes for longterm health care (12.2%).16 Only 3.5% of all deaths occur in hospices.17 Health care in the Czech Republic is predominantly financed by a compulsory system of social health insurance which covers around 80% of total health care expenditure.18 Patients contribute, with some exemptions, by paying a so-called ‘regulatory fee’ of 30 CZK (€1.2) for a standard examination, 90 CZK (€3.6) for emergency consultations, and 100 CZK (€3.9) per day of hospitalization.19 These fees are applicable in hospitals and long-term health care facilities. Hospitalizations in inpatient hospices are excluded, however, Czech hospices are mostly funded by non-governmental organizations and, as they get only 40–60% of their budgets from public health insurance, clients are usually asked to contribute around 300 CZK (€11.6) per day.17 Palliative care in the Czech Republic began in the 1990s, when the first inpatient hospice was established in 1995 and the first textbook of palliative medicine was published in 1998.20 Currently, there are 16 inpatient hospices and two hospital palliative care units, providing a total of 460 beds (4.5 beds for 100 000 inhabitants), four independent home hospice care services and two palliative oncology ambulances (outpatient clinics).17 The Worldwide Palliative Care Alliance report in 2012 assessed the development of palliative care in the Czech Republic as ‘generalized provision’, which is defined as ‘… the development of palliative care activism in several locations with the growth of local support in those areas; multiple sources of funding; the availability of morphine; several hospice-palliative care services from a community of providers who are independent of the health care system; and the provision of some training and education initiatives by the hospice organizations’ ( p. 1097).21 Despite the evolving development of palliative care in the Czech Republic, little is known about public opinion on palliative care and their preferences concerning death and dying (including place of death), which are key information for policy makers.3 Cesta domu˚ , a leading home care palliative service in Prague (http://www.cestadomu.cz), in cooperation with STEM/MARK, a professional marketing agency, conducted a large representative population survey on views and preferences on death and dying in 2011. Palliative care professionals from Cesta domu˚ provided the research questions and supervised the development of the survey questionnaire. STEM/MARK carried out the data collection and published an overall results report, designed primarily for use in public relations and media.22 Cesta domu
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provided the authors with the original dataset in order to undertake secondary data analysis for scientific and educational purposes. This paper is a part of this endeavour, focusing on the analysis of public and health professionals place of death preferences. The aim of this study was to answer the following research questions: 1. Is there any difference between the general population and health care professionals in their views on where do people not want to die? 2. What sociodemographic factors influence these views?
Methods Research design This study used secondary analysis of data from a cross-sectional survey, conducted in the Czech Republic by a professional marketing agency STEM/MARK. This agency is a market research company and did not seek ethical approval from any university-based research ethics committee. However, this project was developed in agreement with the International Code on Market and Social Research ICC/ESOMAR (http://simar.cz/assets/media/ Standardy/ICCESOMAR_Code.pdf ), which serves as an ethical code for market research companies. The main method in the original survey was a questionnaire, administered by computer assisted web interviewing (CAWI) or computer assisted personnel interviewing (CAPI) method.
Sample This study used data from two samples (Table 1). The first group were respondents from the general population (N = 1095), aged from 15 years and above. This sample was recruited from the STEM/MARK respondent panel and weighted for gender, age, education, and region of residence to achieve representativeness for the whole population in the Czech Republic. Respondents aged 15–49 years were interviewed by the CAWI method and respondents aged 50 years or more by the CAPI method. The second group consisted of a convenience sample of health care professionals (doctors and nurses, N = 1006), recruited by STEM/MARK from various health care institutions and not weighted for representativeness. This group was interviewed by the CAWI method.
Questionnaire The questionnaire consisted of 30 questions, divided into 10 sections. The language was Czech. One section of the survey focused on place of death preferences. Respondents from the general public were asked to indicate where they would not want to die. Response options were hospital, long-term health care facility,
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Table 1 Sample demographics General population (N = 1095)*
Gender Male Female Age 15–29 years 30–44 years 45–59 years 60+ Education Elementary Secondary University Town size (N of inhabitants) Less than 5000 5000–19 999 20 000–99 999 100 000+ Experience with dying of a close person Yes No Spirituality** I believe in God I do not believe in God, but there is some higher power above us
I do not believe in God or any other higher power
Health care professionals (N = 1005) N
%
534 561
48.8 51.2
276 292 239 288
25.2 26.7 21.8 26.3
584 371 140
53.3 33.9 12.8
433 190 277 194
39.5 17.4 25.3 17.8
827 268
75.5 24.5
303 466
27.6 42.5
327
29.9
N
%
Gender Male 323 Female 683 Age 24–44 years 344 45–64 years 615 65+ years 47 Profession Medical doctor 737 Nurse 269 Specialization General practice 197 Internal medicine 98 Paediatrics 90 Psychiatry 90 Neurology 75 Gynaecology 49 Diabetology 40 Cardiology 36 Other 331 Institution Hospital 511 Ambulatory care 458 Other 37 Experience with patients with incurable diagnosis Often 543 Sometimes 349 Rarely 114
32.1 67.9 34.2 61.1 4.7 73.3 26.7 19.6 9.7 8.9 8.9 7.5 4.9 4 3.6 32.9 50.8 45.5 3.7
54 34.7 11.3
*Weighted for gender, age, education, district in order to obtain representativeness for Czech population older than 15 years of age. **This variable was recoded to ‘spiritual’ (the first two options) and ‘atheist’ during computing multiple regression models.
hospice, social care home (care homes for senior citizens usually without medical doctors on the staff, financed from obligatory public social insurance), home, and other. Respondents could choose more than one answer. The questionnaire for health care professionals asked them to indicate settings, where according to their opinion the general public does not want to die, the response options were the same as for the general population.
Data analysis The original dataset provided by Cesta domu˚ was cleaned and prepared for analysis in Microsoft Excel 2010 and IBM SPSS 20. Descriptive statistics were used to assess the basic distribution of data and chi-square test was used to test the difference between the two samples and their views on public place of death preferences. Binary logistic models (enter method) were built to evaluate the influence of selected demographic variables on place of death preferences. In the general population the variables were gender, age, education, experience with dying of a close person, spirituality, and respondent’s home town size. In health care professionals the variables were: gender, age, profession (doctor/nurse), specialization, institutional setting (hospital, ambulance outside hospital setting, other), and experience with
patients with incurable diagnoses (for distributions of all selected variables see Table 1). These variables were checked for multicollinearity and model fit of all computed regression models was tested by Hosmer–Lemeshow goodness of fit test.
Results A total of 1095 respondents from the general population completed the survey. This sample was weighted for representativeness of the whole population in the Czech Republic for gender, age, education, and region. Most respondents (75.5%) indicated having experience with someone close to them dying. Onethird reported faith in God (27.6%), 42.5% belief in some higher power, and 29.9% did not believe in God or any other higher power. The health care professionals sample (N = 1005) consisted of physicians (73.3%) and nurses (26.7%). There were more females than men (67.9 versus 32.1%) and the largest specialty group was general practitioners (19.6%), followed by internal medicine, paediatrics, and psychiatry (all around 9%). The sample was almost equally distributed between respondents based in hospitals and ambulatory care (50.8 versus 45.5%). More than half of health care professionals (54%) in the sample had ‘often’ had Progress in Palliative Care
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Figure 1 Where do people not want to die?
experience with patients with incurable diagnosis, 34.7% ‘sometimes’, and 11.3% ‘rarely’.
Where do people not want to die? There was an agreement between professionals and the public in the ranking of places where people do not want to die, with the exception of hospice (Fig. 1). Although the ranking followed similar order, there were significant differences in the proportion of respondents from both samples who indicated particular settings. The least preferred option by both groups was the long-term health care facility (indicated by Table 2
69% of general population, 76% of health care professionals, P = 0.012), followed by hospital (45% general population, 59% health care professionals, P < 0.001). Preference for hospice was disparate, with 42% of general population indicating that they would not like to die there compared with 6% of health care professionals identifying that the public would not want to die there (P < 0.001). Around one-third (35%) of the general population indicated that a social care home was a place where they did not want to die, compared to 18% of health care professionals (P < 0.001).
Where do people not want to die? (general population, N = 1095) Hospital
Hospice
95% CI** Sig. Age Older versus younger*** Spirituality Atheists versus spiritual Gender Female versus male Town size
