Descriptions of euthanasia as social representations: comparing the views of Finnish physicians and religious professionals

In many western societies health professionals play a powerful role in people's experiences of dying. Religious professionals, such as pastors, are also confronted with the issues surrounding death and dying in their work. It is therefore reasonable to assume that the ways in which death-related topics, such as euthanasia, are constructed in a given culture are affected by the views of these professionals. This qualitative study addresses the ways in which Finnish physicians and religious professionals perceive and describe euthanasia and conceptualises these descriptions and views as social representations. Almost all the physicians interviewed saw that euthanasia does not fit the role of a physician and anchored it to different kinds of risks such as the slippery slope. Most of the religious and world-view professionals also rejected euthanasia. In this group, euthanasia was rejected on the basis of a religious moral code that forbids killing. Only one of the religious professionals - the freethinker with an atheist world-view - accepted euthanasia and described it as a personal choice, as did the one physician interviewed who accepted it. The article shows how the social representations of euthanasia are used to protect professional identities and to justify their expert knowledge of death and dying

Factors associated with the goal of treatment in the last week of life in old compared to very old patients: a population-based death certificate survey

Background: Little is known about the type of care older people of different ages receive at the end of life. The goal of treatment is an important parameter of the quality of end-of-life care. This study aims to provide an evaluation of the main goal of treatment in the last week of life of people aged 86 and older compared with those between 75 and 85 and to examine how treatment goals are associated with age. Methods: Population-based cross sectional survey in Flanders, Belgium. A stratified random sample of death certificates was drawn of people who died between 1 June and 30 November 2007. The effective study sample included 3,623 deaths (response rate: 58.4%). Non-sudden deaths of patients aged 75 years and older were selected (N = 1681). Main outcome was the main goal of treatment in the last week of life (palliative care or life-prolonging/curative treatment). Results: In patients older than 75, the main goal of treatment in the last week was in the majority of cases palliative care (77.9%). Patients between 75 and 85 more often received life-prolonging/curative treatment than older patients (26.6% vs. 15.8%). Most patient and health care characteristics are similarly related to the main goal of treatment in both age groups. The patient's age was independently related to having comfort care as the main goal of treatment. The main goal of treatment was also independently associated with the patient's sex, cause and place of death and the time already in treatment. Conclusion: Age is independently related to the main goal of treatment in the last week of life with people over 85 being more likely to receive palliative care and less likely to receive curative/life-prolonging treatment compared with those aged 75-85. This difference could be due to the patient's wishes but could also be the result of the attitudes of care givers towards the treatment of older people

Improving end-of-life care in acute geriatric hospital wards using the Care Programme for the Last Days of Life : study protocol for a phase 3 cluster randomized controlled trial

Background: The Care Programme for the Last Days of Life has been developed to improve the quality of end-of-life care in acute geriatric hospital wards. The programme is based on existing end-of-life care programmes but modeled to the acute geriatric care setting. There is a lack of evidence of the effectiveness of end-of-life care programmes and the effects that may be achieved in patients dying in an acute geriatric hospital setting are unknown. The aim of this paper is to describe the research protocol of a cluster randomized controlled trial to evaluate the effects of the Care Programme for the Last Days of Life. Methods and design: A cluster randomized controlled trial will be conducted. Ten hospitals with one or more acute geriatric wards will conduct a one-year baseline assessment during which care will be provided as usual. For each patient dying in the ward, a questionnaire will be filled in by a nurse, a physician and a family carer. At the end of the baseline assessment hospitals will be randomized to receive intervention (implementation of the Care Programme) or no intervention. Subsequently, the Care Programme will be implemented in the intervention hospitals over a six-month period. A one-year post-intervention assessment will be performed immediately after the baseline assessment in the control hospitals and after the implementation period in the intervention hospitals. Primary outcomes are symptom frequency and symptom burden of patients in the last 48 hours of life. Discussion: This will be the first cluster randomized controlled trial to evaluate the effect of the Care Programme for the Last Days of Life for the acute geriatric hospital setting. The results will enable us to evaluate whether implementation of the Care Programme has positive effects on end-of-life care during the last days of life in this patient population and which components of the Care Programme contribute to improving the quality of end-of-life care

Similarities and differences between continuous sedation until death and euthanasia: professional caregivers' attitudes and experiences: a focus group study

Background: According to various guidelines about continuous sedation until death, this practice can and should be clearly distinguished from euthanasia, which is legalized in Belgium. Aim: To explore professional caregivers' perceptions of the similarities and differences between continuous sedation until death and euthanasia. Design: Qualitative data were gathered through focus groups. Questions pertained to participants' perceptions of continuous sedation. The focus groups were recorded and transcribed verbatim. Analyses were conducted by a multidisciplinary research team using constant comparison analyses. Setting/Participants: We did four focus groups at Ghent University Hospital: two with physicians (n = 4 and n = 4) and two with nurses (n = 4 and n = 9). The participants could participate if they were ever involved in the use of continuous sedation until death. Results: Although the differences and similarities between continuous sedation until death and euthanasia were not specifically addressed in the questions addressed in the focus groups, it emerged as an important theme in the participants' accounts. Many caregivers elaborated on the differences between both practices, particularly with regard to patients' preferences and requests, decision-making and physicians' intentions. However, some stated that the distinction between the two sometimes becomes blurred, especially when the sedating medication is increased disproportionally or when sedation is used for patients with a longer life expectancy. Conclusions: The differences and similarities between continuous sedation until death and euthanasia is an issue for several Flemish professional caregivers in their care for unbearably suffering patients at the end of life. Although guidelines strictly distinguish both practices, this may not always be the case in Flemish clinical practice

Reporting of euthanasia in medical practice in Flanders, Belgium: cross sectional analysis of reported and unreported cases

Objectives To estimate the rate of reporting of euthanasia cases to the Federal Control and Evaluation Committee and to compare the characteristics of reported and unreported cases of euthanasia

Is early integration of palliative home care in oncology treatment feasible and acceptable for advanced cancer patients and their health care providers? A phase 2 mixed-methods study

Background: To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention. Methods: Interviews with patients (n = 16 of which 11 dyadic with family caregivers), oncologists and GPs (n = 11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n = 8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks. Results: In the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them. Conclusion: Nurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care

Implementing the care programme for the last days of life in an acute geriatric hospital ward : a phase 2 mixed method study

Background: To improve the quality of end-of-life care in geriatric hospital wards we developed the Care Programme for the Last Days of Life. It consists of 1) the Care Guide for the Last Days of Life, 2) supportive documentation and 3) an implementation guide. The aim of this study is (1) to determine the feasibility of implementing the Care Programme for the Last Days of Life in the acute geriatric hospital setting and (2) to explore the health care professionals' perceptions of the effects of the Care Programme on end-of-life care. Methods: A phase 2 mixed methods study according with the MRC framework was performed in the acute geriatric ward of Ghent University Hospital between 1 April and 30 September 2013. During the implementation process a mixed methods approach was used including observation, interviews and the use of a quantitative process evaluation tool. This tool measured the success of implementation using several indicators, such as whether a steering group was formed, whether and how much of the health care staff was informed and trained and how many patients were cared for according to the Care Guide for the Last Days of Life. Results: The process evaluation tool showed that implementing the Care Programme for the Last Days of Life in the geriatric ward was successful and thus feasible; a steering group was formed consisting of two facilitators, health care staff of the geriatric ward were trained in using the Care Guide for the Last Days of Life which was subsequently introduced onto the ward and approximately 57 % of all dying patients were cared for according to the Care Guide for the Last Days of Life. With regard to health care professionals' perceptions, nurses and physicians experienced the Care Guide for the Last Days of Life as improving the overall documentation of care, improving communication among health care staff and between health care staff and patient/family and improving the quality of end-of-life care. Barriers to implementing the Care Programme for the Last Days of Life successfully are, among others, difficulties with the content of the documents used within the Care Programme for the Last Days of Life and the low participation rate of physicians in the training sessions and audits. Conclusions: Results of this mixed methods study suggest that implementing the Care Programme for the Last Days of Life is feasible and that it has favorable effects on end-of-life care as reported by health care professionals. Based on the identified barriers during the implementation process, we were able to make recommendations for future implementation and further refine the Care Programme for the Last Days of Life before implementing it in a phase 3 cluster randomized controlled trial for the evaluation of its effectiveness

Higher prevalence of dementia but no change in total comfort while dying among nursing home residents with dementia between 2010 and 2015 : results from two retrospective epidemiological studies

Important policy developments in dementia and palliative care in nursing homes between 2010 and 2015 in Flanders, Belgium might have influenced which people die in nursing homes and how they die. We aimed to examine differences between 2010 and 2015 in the prevalence and characteristics of residents with dementia in nursing homes in Flanders, and their palliative care service use and comfort in the last week of life. We used two retrospective epidemiological studies, including 198 residents in 2010 and 183 in 2015, who died with dementia in representative samples of nursing homes in Flanders. We found a 15%-point increase in dementia prevalence (p-value < 0.01), with a total of 11%-point decrease in severe to very severe cognitive impairment (p = 0.04). Controlling for residents' characteristics, in the last week of life, there was an increase in the use of pain assessment (+20%-point; p < 0.03) but no change in total comfort. The higher prevalence of dementia in nursing homes with no change in residents' total comfort while dying emphasizes an urgent need to better support nursing homes in improving their capacities to provide timely and high-quality palliative care services to more residents dying with dementia