Background: Austria has recently been embroiled in the complex debate on the legalization of measures to end life prematurely. Empirical data on end-of-life decisions made by Austrian physicians barely exists. This study is the first in Austria aimed at finding out how physicians generally approach and make end-of-life therapy decisions.
Methods: The European end-of-life decisions (EURELD) questionnaire, translated and adapted by Schildmann et al., was used to conduct this cross-sectional postal survey. Questions on palliative care training, legal issues, and use of and satisfaction with palliative care were added. All Austrian specialists in hematology and oncology, a representative sample of doctors specialized in internal medicine, and a sample of general practitioners, were invited to participate in this anonymous postal survey.
Results: Five hundred forty-eight questionnaires (response rate: 10.4%) were evaluated. 88.3% of participants had treated a patient who had died in the previous 12 months. 23% of respondents had an additional qualification in palliative medicine. The cause of death in 53.1% of patients was cancer, and 44.8% died at home. In 86.3% of cases, pain relief and / or symptom relief had been intensified. Further treatment had been withheld by 60.0%, and an existing treatment discontinued by 49.1% of respondents. In 5 cases, the respondents had prescribed, provided or administered a drug which had resulted in death. 51.3% of physicians said they would never carry out physician-assisted suicide (PAS), while 30.3% could imagine doing so under certain conditions. 38.5% of respondents supported the current prohibition of PAS, 23.9% opposed it, and 33.2% were undecided. 52.4% of physicians felt the legal situation with respect to measures to end life prematurely was ambiguous. An additional qualification in palliative medicine had no influence on measures taken, or attitudes towards PAS.
Conclusions: The majority of doctors perform symptom control in terminally ill patients. PAS is frequently requested but rarely carried out. Attending physicians felt the legal situation was ambiguous. Physicians should therefore receive training in current legislation relating to end-of-life choices and medical decisions. The data collected in this survey will help political decision-makers provide the necessary legal framework for end-of-life medical care.
The institutionalisation of dying is recurrently assessed as adverse to a good death. However, a majority of people die in institutions such as hospitals or nursing homes and end-of-life care at home is more and more professionally supported. This article analyses how the discursive production of dying, the good death, and the issue of institutionalisation at the end of life are interrelated. The study empirically investigates a parliamentary enquiry on dying with dignity that took place in Austria between 2014 and 2015. It employs the Sociology of Knowledge Approach to Discourse to analyse parliamentary documents and minutes, written statements submitted by individuals and organisations, as well as newspaper articles. Data analysis shows a restrictive and a permissive normative position considering both killing on request and assisted suicide. Apart from their different political demands, they both reproduce a discourse constructing dying as a longer lasting and painful process striking old or ill people. In order to enable a good death, the dying person needs comprehensive support that the informal social environment is incapable to provide. Thereby, institutionalisation is associated with negative characteristics and at the same time identified as requirement for a good death considering its role in pain management and provision of care. The analysis interprets the call for institutionalisation in the context of medicalisation and the central role of physicians to alleviate pain. The article proposes a differentiated view on institutionalisation processes and practices in end-of-life care, also reflecting the potential of institutionalisation to obstruct fundamental societal transformation.
BACKGROUND: This pilot study examined which of a patient's personal aspects should be taken into account in a hospital setting on admission to the palliative care unit (PCU) by asking patients the question "what should I know about you as a person to help me take the best care of you that I can?"
METHODS: This retrospective study used qualitative methodology to thematically analyze answers from 14 patients admitted to the PCU of the Medical University of Vienna during July and August 2018. The question "what should I know about you as a person to help me take the best care of you that I can?" was asked on the day of admission, notes were taken during the interview and the patient's answers were written out immediately afterwards. Data were analyzed using NVivo 12.
RESULTS: Results revealed four topics: characterization of one's personality, important activities, social bonding, and present and future concerns regarding the patient's illness. Data showed that this question enabled patients to describe themselves and what was important to them. This might result in an improved sense of self-esteem in patients and represents an opportunity for professionals to treat patients in a more individualized manner; however, patient reactions also revealed a reluctance to address certain personal issues within a medical context.
CONCLUSION: The study results provide insights into the benefits of paying more attention to personal life aspects of severely ill patients on admission to a PCU. Addressing individual aspects of patients' lives might improve the healthcare professional-patient relationship.
Introduction: End-stage chronic obstructive pulmonary disease (COPD) patients with acute respiratory failure are often treated by representatives from different medical specialties. This study investigates if the choice of treatment is influenced by the medical specialty.
Methods: An online cross-sectional survey among four Austrian medical societies was performed, accompanied by a case vignette of a geriatric end-stage COPD patient with acute respiratory failure. Respondents had to choose between noninvasive ventilation (NIV), a conservative treatment attempt (without NIV) and a palliative approach. Ethical considerations and their impact on decision making were also assessed.
Results: Responses of 162 physicians (67 from intensive care units (ICUs), 51 from pulmonology or internal departments and 44 from geriatric or palliative care) were included. The decision for NIV (instead of a conservative or palliative approach) was associated with working in an ICU (OR 14.9, 95% CI 1.87-118.8) and in a pulmonology or internal department (OR 9.4, 95% CI 1.14-78.42) compared with working in geriatric or palliative care (Model 1). The decision for palliative care was negatively associated with working in a pulmonology or internal department (OR 0.16, 95% CI 0.05-0.47) and (nonsignificantly) in an ICU (OR 0.41, 95% CI 0.15-1.12) (Model 2).
Conclusions: Department association was shown to be an independent predictor for treatment decisions in end-stage COPD with acute respiratory failure. Further research on these differences and influential factors is necessary.
BACKGROUND: Emergency departments (ED) serve as a contact point for critically ill patients. According to experience, a fraction of patients visiting ED present with palliative symptoms and require palliative care; however, the prevalence of these patients has not been determined in Austria so far.
METHODS: In the ED of a tertiary care medical centre in Carinthia all adult patients presenting between 8 January 2018 and 17 January 2018 were classified on arrival with the Manchester triage system (MTS) and were afterwards assessed with a validated 2-tier screening tool for palliative care. Patient records were screened in April 2018 to find out whether they received palliative care.
RESULTS: In total 1277 patients visited the ED during the investigation period. Of these patients 1096 were screened and 145 of these patients (13.2%) showed palliative symptoms and needed a goal-oriented therapy. Of these 145 patients 10.9% were assessed by MTS as emergency, 2.7% as very urgent, 34.7% as urgent, 51% as normal, and 0.7% as not urgent. Only 8 (5.5%) of the patients with palliative medical symptoms actually received palliative care consultation.
CONCLUSIONS: More than 1 in 10 patients attending an ED suffered from palliative symptoms. Hence it is to be expected that healthcare providers in an ED in Austria will frequently encounter patients with palliative symptoms in emergency admissions. Therefore, it is necessary to develop suitable structures to provide these patients with the best possible care.
BACKGROUND: In increasingly multi-ethnic societies fostering cultural awareness and integration of immigrants is not only a political duty but also an obligation for social and healthcare systems. Importantly, cultural beliefs and needs strongly impact on the quality of life of cancer patients and may become even more crucial at the end of life. However, to date, ethnic and cultural aspects of palliative care are insufficiently researched.
METHODS: This qualitative study at the Medical University of Vienna included 21 staff members from different disciplines in oncology and palliative care working with patients with various cultural backgrounds at the end of life. Semi-structured interviews were performed to gain insights into specific aspects of palliative care that are important in the clinical encounter with terminally ill cancer patients with migrant backgrounds and their relatives.
RESULTS: Interviews revealed specific aspects of palliative care, which fell into four fundamental categories and were all perceived as beneficial in the clinical encounter with migrant clients: (A) structural and (B) personal conditions of the palliative care setting, (C) specific care and treatment intentions and (D) personnel requirements and attitudes.
CONCLUSION: This study revealed first insights into possibilities and prospects of transcultural palliative care for migrants and their relatives. The results might have important implications for the end of life care in this growing population.
OBJECTIVE: To assess changes in attitudes of neonatologists regarding the care of extremely preterm infants and parental involvement over the last 20 years.
STUDY DESIGN: Internet-based survey (2016) involving 170 tertiary neonatal intensive care units in Austria, Switzerland, and Germany using the European Project on Parents' Information and Ethical Decision Making in Neonatal Intensive Care Units questionnaire (German edition) with minor modifications to the original survey from 1996 to 1997.
RESULTS: The 2016 survey included 104 respondents (52.5% response rate). In 2016, significantly more neonatologists reported having ever withheld intensive care treatment (99% vs 69%) and withdrawn mechanical ventilation (96% vs 61%) or life-saving drugs (99% vs 79%), compared with neonatologists surveyed in 1996-1997. Fewer considered limiting intensive care as a slippery slope possibly leading to abuse (18% vs 48%). In the situation of a deteriorating clinical condition despite all treatment, significantly more neonatologists would ask parental opinion about continuation of intensive care (49% vs 18%). In 2016, 21% of German neonatologists would resuscitate a hypothetical infant at the limits of viability, even against parental wishes.
CONCLUSIONS: Withholding or withdrawing intensive care for extremely preterm infants at the limits of viability with parental involvement has become more acceptable than it was 20 years ago. However, resuscitating extremely preterm infants against parental wishes remains an option for up to one-fifth of the responding neonatologists in this survey.
Our interdisciplinary mixed-methods exploratory study was aimed at gaining empirical data on the medical and nursing demands of residents who are in a late stage of Parkinson Disease (PD) and are cared for in residential homes in Salzburg (Austria). In earlier studies it has been concluded that symptom burden of late stage PD patients is similar to or even higher compared with oncological patients. However, although all nine residents who took part in our study had severe limitations in performing their daily activities and experienced enormous restrictions in their mobility, they were quite content with their present living situations and did not show significant symptom burden. From the ethnographic family interviews that we conducted the following features emerged: a strong closeness in the family, an improved quality of life when the patients lived in the nursing home and fears about the future. Therefore, we concluded that living in a nursing home that provides for the needs of these patients is the best option for PD patients in the final stages of their disease as well as for their relatives.
BACKGROUND: Psychiatric symptoms are common in terminally ill patients. Studies linking temperamental traits and psychiatric disorders in patients suffering from advanced disease are rare. This study investigated the influence of temperament on depression and anxiety in palliative care cancer patients.
METHODS: A total of 53 patients at the palliative care unit (PCU) of the Medical University of Vienna were enrolled in the study. Patients filled out the TEMPS-M and the brief PHQ-9 questionnaires to examine associations between temperament, psychiatric symptoms and sociodemographic parameters.
RESULTS: Pain (67%), anorexia (58%), constipation (42%) and nausea/vomiting (40%) were the most prevalent self-reported symptoms. Self-reported symptoms of depression were less commonly reported (21.8%) than unveiled by the structured assessment by the PHQ-9 questionnaire: 26.4% (n = 14) showed mild symptoms of depression and 64.1% (n = 34) had a major depressive disorder (MDD) according to PHQ-9. The depressive and cyclothymic temperaments showed significant associations with depressive (both: p < 0.001) as well as symptoms of anxiety (p = 0.002; p = 0.036). Furthermore, the anxious temperament was significantly associated with symptoms of depression (p = 0.027).
CONCLUSIONS: Mood disorders are common in palliative care patients, as the majority of the patients were suffering from MDD. The depressive, cyclothymic and anxious temperaments were found to be correlated with depressive and anxious symptoms. A sensitization in this field might bring further improvements for the quality of life of palliative care patients and help to appropriately address psychiatric symptoms in palliative care.
During the 19th century, suicide rates increased in many countries. The press may have contributed to this increase, even though empirical evidence is lacking in this regard. We assessed suicide statistics within five territories of the Austro-Hungarian Empire between 1871 and 1910 and combined these data with a content analysis of suicide reporting in five newspapers, each appearing in one of the five territories. The analysis revealed a covariation between the quantity of reporting and the number of suicides within all five regions. Furthermore, the quantity of reporting significantly predicted the following year's suicides. Although the causal order of suicides and the quantity of reporting should be assessed with caution, evidence is consistent with the idea that the press may have contributed to the establishment of suicide as a mass phenomenon. The findings also support contemporary guidelines for journalists, especially the notion of avoiding undue repetition of suicide stories.
Medical students have to acquire theoretical knowledge, practical skills, and a personal attitude to meet the emerging needs of palliative care. The present study aimed to assess the personal attitude of Austrian medical students towards end of life communication (EOLC), as key part of palliative care. This cross-sectional, mono-institutional assessment invited all medical students at the Medical University of Vienna in 2015. The assessment was conducted web-based via questionnaire about attitudes towards EOLC. Additional socio-demographic and medical education-related parameters were collected. Overall, 743 medical students participated in the present report. Differences regarding the agreement or disagreement to several statements concerning the satisfaction of working with chronically ill patients, palliative care, and health care costs, as well as the extent of information about palliative disease, were found for age, gender, and academic years. The overall attitude towards EOLC in the present sample can be regarded as quite balanced. Nevertheless, a considerable number of medical students are still reluctant to inform patients about their incurable disease. Reservations towards palliative care as part of the health care system seem to exist. The influence of the curriculum as well as practical experiences seems to be important but needs further investigation.
In accordance with the pluralisation of life plans in late modernity, the societal organisation of care at the end of life is diverse. Although the public discourse in western societies is dominated by questions about optimising specialised palliative care services, public health approaches, which take into account the social determinants and inequalities in end-of-life care, have gained in importance over the last decade. Conceptual aspects, dimensions of impact and benefit for the dying and their communities are well discussed in the public health end-of-life care research literature. Our research focuses on the preconditions of a supportive caring web in order to understand how communities can build on their social capital to deal with existential uncertainty. As part of a large-scale community research project, we carried out focus groups and interviews with community members. Through dispositive analysis, we generated a set of care-web 'ingredients', which constitute and foster a caring community. These 'ingredients' need to be cultivated through an ongoing process of co-creation. This requires: (i) a focus on relationships and social systems; (ii) the creation of reflective spaces; and (iii) the strengthening of social capital, and d) the addressing of inequalities in care.
BACKGROUND: Interdisciplinary tumor board decisions improve the quality of oncological therapies, while no such boards exist for end-of-life (EOL) decisions. The aim of this study was to assess the willingness of hemato-oncological and palliative care professionals to develop and participate in EOL boards. An aim of an EOL board would be to establish an interdisciplinary and comprehensive care for the remaining lifetime of patients suffering from advanced incurable diseases.
STUDY DESIGN: Staff from the interdisciplinary teams of all hemato-oncological and palliative care wards in Vienna were invited to anonymously participate in an online survey.
RESULTS: 309 professionals responded. 91% respondents reported a need to establish an EOL board, 63% expressed their willingness to actively participate in an EOL board, and 25% were indecisive. Regarding patient presence, 50% voted for an EOL board in the presence of the patients, and 36% voted for an EOL board in the absence of the patients. 95% had the opinion that an EOL board could improve patient care in the last phase of life. 64% stated that the development of an EOL board would be worthwhile, while 28% did not see enough resources available at their institutions. Regarding the desired type of documentation, 61% voted for a centrally available EOL decision, and 31% supported an in-house-based documentation. 94% voted for the availability of an information folder about EOL care.
CONCLUSION: The willingness of professionals to establish an EOL board was very high. Further steps should be taken to implement such boards to improve EOL care.
BACKGROUND: Care-dependency constitutes an important issue with regard to the approval of end-of-life decisions, yet attitudes towards assisted suicide and euthanasia are understudied among care-dependent older adults. We assessed attitudes towards assisted suicide and euthanasia and tested empirical correlates, including socio-demographics, religiosity, physical illness, psychological distress and social isolation.
METHODS: A nationwide cross-sectional survey among older care allowance recipients (50+) in private households in Austria was conducted in 2016. In computer-assisted personal interviews, 493 respondents were asked whether or not they approved of the availability of assisted suicide and euthanasia in case of long-term care dependency and whether or not they would consider using assisted suicide or euthanasia for themselves. Multiple logistic regression analysis was used to assess the impact of potential determinants of attitudes towards assisted suicide and euthanasia.
RESULTS: About a quarter (24.8-26.0%) of the sampled care-dependent older adults approved of the availability of assisted suicide and euthanasia respectively indicated the will to (hypothetically) make use of assisted suicide or euthanasia. Attitudes towards assisted suicide were most favourable among care-dependent older adults living in urban areas, those who did not trust physicians, those who reported active suicide ideation, and individuals with a strong fear of dying. With regard to euthanasia, living alone, religiosity and fear of dying were the central determinants of acceptance.
CONCLUSIONS: Positive attitudes towards and will to (hypothetically) use assisted suicide and euthanasia were expressed by a substantial minority of care-dependent older adults in Austria and are driven by current psychological suffering and fear of the process of dying in the (near) future. Community-based psychosocial care should be expanded to address psychological distress and fears about end-of-life issues among care-dependent older adults.
Introduction: Treatment decisions in elderly patients with traumatic brain injury (TBI) are mainly determined by trauma severity and patient age. The aim of this study was to explore personal preferences of potential patients regarding life-prolonging neurosurgical interventions by interviewing ambulatory, autonomous elderly people.
Methods: One hundred consecutive patients older than 75 years frequenting the outpatient clinic of the Department of Neurosurgery were interviewed about their attitudes regarding the hypothetical case of an 81-year-old patient with TBI and a space-occupying acute subdural hematoma (aSDH) using a 21-point questionnaire.
Results: Fifty-one percent of the consulted persons declined life-prolonging surgical measures. If surgery was associated with physical disability, 68% of the people wished no surgery. In case of cognitive impairment after surgery, 91% were against any surgical intervention. The majority feared being a burden to relatives (76%) and becoming unable to master an independent life (75%). Four-fifths of the interviewed patients (82%) were not afraid of death.
Conclusions: The majority of elderly patients only consent to surgical measures if no relevant disabilities are involved and if they can return to their previous life. These findings need consideration in case of life-threatening neurosurgical emergencies as well as in the surgical treatment of elderly patients in general.
Background: There is limited data on the use of thromboprophylaxis in patients with advanced cancer. We therefore aimed to study the practice of thromboprophylaxis in palliative care units in Austria.
Methods: We monitored use, indication, and contraindications to thromboprophylaxis in 134 patients hospitalized in 21 palliative care units in a prospective, cross-sectional study.
Results: Forty-seven percent of patients were on low molecular weight heparin on the day of the study for primary or secondary thromboembolism. Thromboprophylaxis had been withdrawn in 18% of the patients upon admission to the palliative care unit. Contraindications for thromboprophylaxis were present in 27% of all patients. Cancer was present in 86% of the patients. The use of thromboprophylaxis was similar in cancer patients and in non-cancer patients (49% vs. 42%). Contraindications for thromboprophylaxis were present in 24% of all cancer patients. Significantly more bedridden cancer patients had contraindications for prophylaxis when compared with mobile cancer patients (35% vs. 16%; p = 0.03). Low performance status was by far the most frequent contraindication among these patients (89%). Seventy-one percent of all bedridden cancer patients were treated in accordance with common guidelines for thromboprophylaxis when contraindications were taken into account. Eighty-seven percent of patients who had been involved in decision making opted for getting prophylaxis.
Conclusions: Our data reveal that about half of all cancer patients in palliative care units are treated with thromboprophylaxis. Low performance status was the most frequent contraindication for thromboprophylaxis.
Les auteurs ont étudié les frais de soins non remboursés déclarés au cours de la dernière année de vie d'adultes âgés en Europe, à partir de l'étude SHARE. Les variations de ce critère indiquent que les pays européens font face à différents défis dans une prise en charge financière des soins au cours de la dernière année de vie, abordable pour tous.
En 2006, l'organisation Hospiz Osterreich a lancé un projet ambitieux destiné à intégrer les soins de fin de vie et les soins palliatifs aux maisons de retraite en Autriche, avec un processus d'organisation sur deux ans et une formation du personnel.
L'objectif principal de cette étude était d'identifier les maladies nécessitant des soins à domicile et d'évaluer l'état fonctionnel des patients qui sont pris en charge par les médecins généralistes, les proches des patients et les services de santé.
Cet article traite du bénévolat en soins palliatifs en Autriche et au Royaume Uni ainsi que du nouveau groupe de travail de l’EAPC lancé en novembre 2013. Celui-ci va explorer l'état actuel du bénévolat en Europe et identifier les moyens d'améliorer l'implication des bénévoles.