"How long is life worth living for the horse?" A focus group study on how Austrian equine stakeholders assess quality of life for chronically ill or old horses.

BACKGROUND: Quality of life (QoL) provides a comprehensive concept underpinning veterinary decision-making that encompasses factors beyond physical health. It becomes particularly pertinent when seeking responsible choices for chronically ill or old horses that emphasise their well-being and a good QoL over the extension of life. How different stakeholders use the concept of QoL is highly relevant when considering the complexity of these decisions in real-life situations. METHODS: Seven focus group discussions (N = 39) were conducted to gain insights into how stakeholders assess and use equine QoL in veterinary care decisions for chronically ill and/or old horses. The discussions included horse owners (n = 17), equine veterinarians (n = 7), veterinary officers (n = 6), farriers (n = 4), and horse caregivers (n = 5). The combination of deductive and inductive qualitative content analysis of the group discussions focused on identifying both similarities and differences in the views of these groups regarding QoL for old and/or chronically ill horses. RESULTS: Findings show agreement about two issues: the importance of the individuality of the horse for assessing QoL and the relevance of QoL in making decisions about veterinary interventions. We identified differences between the groups with respect to three issues: the time required to assess QoL, stakeholders' contributions to QoL assessments, and challenges resulting from those contributions. While owners and caregivers of horses emphasised their knowledge of a horse and the relevance of the time they spend with their horse, the veterinarians in the study focused on the differences between their own QoL assessments and those of horse owners. In response to challenges regarding QoL assessments and decision-making, stakeholders described different strategies such as drawing comparisons to human experiences. CONCLUSIONS: Differences between stakeholders regarding equine QoL assessments contribute to challenges when making decisions about the care of chronically ill or old horses. The results of this study suggest that individual and collaborative reflection about a horse's QoL should be encouraged, for example by developing practicable QoL assessment tools that support relevant stakeholders in this process.

End-of-life decision-making in critically ill old patients with and without coronavirus disease 2019.

BACKGROUND: There are few studies on the differences in end-of-life decisions making in critically ill patients with and without coronavirus disease 2019 (COVID-19). This study aimed to investigate the independent factors that predicted the decision to withdraw or withhold life-sustaining treatments (LST) in critically ill patients and if these decisions were based on different variables for critically ill patients with COVID-19 compared to those for critically ill patients with other diagnoses in a Swedish intensive care unit. METHODS: This observational pilot study was performed at Sahlgrenska University Hospital, Gothenburg, Sweden. Patients ≥65 years were included from 1 March 2020 to 30 April 2021. The association between a decision to limit LST and a priori selected variables including sex, age, Simplified Acute Physiology Score 3 (SAPS 3), Clinical Frailty Scale ≥4, Charlson Comorbidity Index, Body Mass Index, living at home, invasive and non-invasive mechanical ventilation was assessed using a univariate and multivariable logistic regression model and presented as odds ratio with corresponding 95% confidence intervals. RESULTS: There were 394 patients included in this study, 131 in the non-COVID-19 group and 263 in the COVID-19 group. For the non-COVID-19 cohort, the univariate analysis demonstrated that age and SAPS 3 were significantly associated with the decision to withdraw or withhold life-sustaining treatments, and this association remained in the multivariable analysis, with odds ratios of 1.10 (1.03-1.19) p = .009 and 1.06 (1.03-1.10) p < .001, respectively. For the COVID-19 cohort, the univariate analysis indicated that age, SAPS 3, and Charlson comorbidity index were significantly associated with the decision to withdraw or withhold life-sustaining treatments. However, in multivariable analysis, only the Charlson comorbidity index remained independently associated with the decision to withdraw or withhold life-sustaining treatments, with an odds ratio of 1.26 (1.07-1.49), p = .006. CONCLUSION: Decisions to withdraw or withhold life-sustaining treatments were based on other variables for the critically ill COVID-19 cohort compared to those for the critically ill non-COVID-19 cohort. Further studies are warranted to forge a common path for ethical end-of-life decision-making in critically ill patients.

How age and health status impact attitudes towards aging and technologies in care: a quantitative analysis.

BACKGROUND: Increasing proportions of geriatric patients pose tremendous challenges for our society. Developments in assistive technologies have the potential to support older and frail people in aging and care. To reach a sustainable adoption of these technologies, the perceptions and wishes of future users must be understood. In particular, the relationships between individual health-related factors, and the perceptions of aging and using assistive technologies in severe health situations must be empirically examined. METHODS: Addressing this research gap, our quantitative study (N = 570) investigates the impact of diverse future users' age and health status on their a) perceptions of aging, b) perceptions and acceptance of using assistive technologies in aging and care, as well as c) end-of-life decisions regarding technology usage. For this, four groups were segmented for the comparison of younger (< 50 years) healthy, younger chronically ill, older (50 + years) healthy, and older chronically ill participants. RESULTS: The results revealed that health status is more decisive for age-related perceptions compared to age. The technology-related perceptions were slightly impacted by either chronological age or health status. The end-of-life decisions showed the most striking differences in the willingness to use assistive technologies, revealing older chronically ill participants to have more restrained attitudes towards technology usage than older healthy as well as all younger participants. CONCLUSIONS: The findings suggest that the benefits of assistive technologies in private or professional care contexts should be communicated and implemented tailored to the respective user group's needs. Moreover, the results allow us to derive practical implications within the geriatric care context.

Cause of death and making end-of-life decisions in preterm infants has not changed over time: A mortality follow-back survey.

AIM: This study aimed to evaluate changes over time in cause of death and making end-of-life decisions in preterm infants. METHODS: A follow-back survey was conducted of all preterm infants who died between September 2016 and December 2017 in Flanders and Brussels, Belgium. Cause of death was obtained from the death certificate and information on end-of-life decisions (ELDs) through an anonymous questionnaire of the certifying physician. Results were compared with a previous study performed between August 1999 and July 2000. RESULTS: In the cohort 1999-2000 and 2016-2017, respectively, 150 and 135 deaths were included. A significantly higher proportion of infants born before 26 weeks of gestation was found in the 2016-2017 cohort (53% vs. 24% in 1999-2000, p < 0.001). Extreme immaturity (<26 weeks) remained the most prevalent cause with a significant increase in the 2016-2017 cohort (48% vs. 28% in 1999-2000, p < 0.001). The overall prevalence of ELDs was similar across study periods (61%). Non-treatment decisions remained the most common ELD (36% and 37%). CONCLUSION: Infants born at the limits of viability have become more prevalent among infant deaths, possibly due to a change in attitude towards periviable births. Neither the process of making ELDs nor the cause of death has changed over time.

Advance directives in the emergency department-a systematic review of the status quo.

BACKGROUND: Providing individualised healthcare in line with patient wishes is a particular challenge for emergency healthcare professionals. Documentation of patient wishes (DPW), e.g. as advance directives, can guide clinicians in making end-of-life decisions that respect the patient's wishes and autonomy. However, patient centered decisions are hindered by limited availability of DPWs in emergency settings. OBJECTIVE: This systematic review aims to congregate present data on recorded rates for DPW existence and availability in the emergency department (ED) as well as contributing factors for these rates. METHODS: We searched MEDLINE, Google Scholar, Embase and Web of Science databases in September 2023. Publications providing primary quantitative data on DPW in the ED were assessed. Publications referring only to a subset of ED patients (other than geriatric) and investigating DPW issued after admission were excluded. RESULTS: A total of 22 studies from 1996 to 2021 were included in the analysis. Most were from the US (n = 12), followed by Australia (n = 4), Canada (n = 2), South Korea, Germany, the United Kingdom and Switzerland (n = 1 each). In the general adult population presenting to the ED, 19.9-27.8% of patients reported having some form of DPW, but only in 6.8% or less it was available on presentation. In the geriatric population, DPW rates (2.6-79%) as well as their availability (1.1-48.8%) varied widely. The following variables were identified as positive predictors of having DPW, among others: higher age, poorer overall health, as well as sociodemographic factors, such as female gender, having children, being in a relationship, higher level of education or a recent previous presentation to hospital. CONCLUSIONS: Existence and availability of a recorded DPW among ED patients was low in general and even in geriatric populations mostly well below 50%. While we were able to gather data on prevalence and predictors, this was limited by heterogeneous data. We believe further research is needed to explore the quality of DPW and measures to increase both rates of existence and availability of DPW in the ED.

Medical futility at the end of life: the first qualitative study of ethical decision-making methods among Turkish doctors.

BACKGROUND: The swift advancement of intensive care medicine, coupled with technological possibilities, has prompted numerous ethical inquiries regarding decision-making processes concerning the withholding or withdrawal of treatment due to medical futility. This study seeks to delineate the decision-making approaches employed by intensive care physicians in Türkiye when faced with medical futility at the end of life, along with an ethical evaluation of these practices. METHODS: Grounded theory, a qualitative analysis method was employed, conducting semi-structured, in-depth interviews with eleven intensive care physicians in Türkiye. The subsequent text analysis was carried out using MAXQDA software. RESULTS: Participants assert that the decisions made by Turkish physicians determine whether treatment is futile, rely on medical consensus, and lack a standardized decision-making process. The decisions are influenced by legal and social pressures, resource constraints, and occasional conflicts of interest. The significance of professional hierarchy is notable, with limited consideration given to the opinions of nurses and other staff. The unstructured medical consensus processes are shaped by normative concepts such as benefit, age, justice, and conscience. Furthermore, it was observed that the conscientious opinions of physicians carry more weight than adherence to ethical principles and guidelines. CONCLUSION: To create optimal conditions for doctors to make ethically justifiable decisions, the dynamics within the treatment team should be improved, emphasizing the minimization of hierarchy, and ensuring the active participation of all team members in the decision-making process. Additionally, efforts should be directed toward narrowing the gap between the conscience of the individual doctor and established ethical principles. A potential solution lies in the nationwide implementation of clinical ethics committees and the establishing of clinical ethics guidelines, aiming to address, and overcome the identified challenges.

Factors influencing decision-making processes for intensive care therapy goals: A systematic integrative review.

BACKGROUND: Delivering intensive care therapies concordant with patients' values and preferences is considered gold standard care. To achieve this, healthcare professionals must better understand decision-making processes and factors influencing them. AIM: The aim of this study was to explore factors influencing decision-making processes about implementing and limiting intensive care therapies. DESIGN: Systematic integrative review, synthesising quantitative, qualitative, and mixed-methods studies. METHODS: Five databases were searched (Medline, The Cochrane central register of controlled trials, Embase, PsycINFO, and CINAHL plus) for peer-reviewed, primary research published in English from 2010 to Oct 2022. Quantitative, qualitative, or mixed-methods studies focussing on intensive care decision-making were included for appraisal. Full-text review and quality screening included the Critical Appraisal Skills Program tool for qualitative and mixed methods and the Medical Education Research Quality Instrument for quantitative studies. Papers were reviewed by two authors independently, and a third author resolved disagreements. The primary author developed a thematic coding framework and performed coding and pattern identification using NVivo, with regular group discussions. RESULTS: Of the 83 studies, 44 were qualitative, 32 quantitative, and seven mixed-methods studies. Seven key themes were identified: what the decision is about; who is making the decision; characteristics of the decision-maker; factors influencing medical prognostication; clinician-patient/surrogate communication; factors affecting decisional concordance; and how interactions affect decisional concordance. Substantial thematic overlaps existed. The most reported decision was whether to withhold therapies, and the most common decision-maker was the clinician. Whether a treatment recommendation was concordant was influenced by multiple factors including institutional cultures and clinician continuity. CONCLUSION: Decision-making relating to intensive care unit therapy goals is complicated. The current review identifies that breadth of decision-makers, and the complexity of intersecting factors has not previously been incorporated into interventions or considered within a single review. Its findings provide a basis for future research and training to improve decisional concordance between clinicians and patients/surrogates with regards to intensive care unit therapies.

Medical students' and residents' views on euthanasia.

BACKGROUND: Doctors are increasingly faced with end-of-life decisions. Little is known about how medical students approach euthanasia. The objective of this study was to evaluate, among medical students and residents, the view on euthanasia and its variants; correlate such a view with empathy and religiosity/spiritualism; and with the stages of medical training in Brazil. METHODS: This is an exploratory cross-sectional study using an online questionnaire to be filled out on a voluntary basis among medical students and residents, consisting of: socio-demographic data, an empathy questionnaire and questions with elaborate clinical cases that typify situations of the variants of euthanasia. RESULTS: From 1550 invitations, 273 volunteer participants responded (17.6%). The percentages of strong agreement/agreement on the concepts were: passive euthanasia (72.9%); active euthanasia (22.3%), orthothanasia (90.1%), dysthanasia (18.7%), assisted suicide (33%) and sedation (82.8%). Passive euthanasia, active euthanasia, dysthanasia and assisted suicide showed greater refusal with increasing length of medical training. Religious belief and degree of empathy did not significantly influence the opinion about the concepts. Strong agreement/agreement were: passive euthanasia (72.9%); active euthanasia (22.3%), orthothanasia (90.1%), dysthanasia (18.7%), assisted suicide (33%) and sedation (82.8%). CONCLUSIONS: Passive euthanasia, active euthanasia, dysthanasia and assisted suicide showed greater refusal with increasing length of medical training. The external validation of our findings relies on the distinct legal, cultural, and religious frameworks found across various countries.

Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement.

BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associated with subsequent risk of parental anxiety or depression. The secondary objective was to assess parents' perceptions of end-of-life care according to death context. METHODS: Prospective single center observational study of all neonatal deaths in a neonatal intensive care unit over a 5-year period. Data were collected during hospitalization and from face-to-face interviews with parents 3 months after the infant's death. Anxiety and depression were assessed using Hospital Anxiety and Depression Scale (HADS) questionnaires, completed by parents 5 and 15 months after death. RESULTS: Of 179 deaths, 115 (64%) occurred after the WWLST decision and 64 (36%) despite maximum care. Parental satisfaction with newborn care and received support by professionals and relatives was higher in the first condition. Sixty-one percent of parents (109/179) attended the 3-month interview, with the distribution between groups very close to that of hospitalization. The completion rates of the HADS questionnaires by the parents who attended the 3-month interview were 75% (82/109) at 5 months and 65% (71/109) at 15 months. HADS scores at 5 months were consistent with anxiety in at least one parent in 73% (60/82) of cases and with depression in 50% (41/82). At 15 months, these rates were, respectively, 63% (45/71) and 28% (20/71). Risk of depression at 5 months was lower after a WWLST decision (OR 0.35 [0.14, 0.88], p = 0.02). Explicit parental agreement with the WWLST decision had an equivocal impact on the risk of anxiety at 5 months, being higher when expressed during hospitalization, but not at the 3-month interview. CONCLUSIONS: Context of death has a significant impact on the emotional experience of parents after neonatal loss, which underlines the importance of systematic follow-up conversations with bereaved parents.

Should the Dutch Law on Euthanasia Be Expanded to Include Children?

The 2002 Dutch Euthanasia law applies to patients aged 12 years and older. Developments in end-of-life care and decision-making in the last decade have sparked the debate about usefulness and necessity to extend euthanasia to include children under 12 years of age. This paper describes two opposite positions: the affirmative position of a pediatrician and expert in pediatric palliative care and the negative position of a jurist and specialist in health law.

[Knowledge and misconceptions on advance directives-results of a citizen survey]. / Wissensstand und Fehlvorstellungen zu Vorsorgedokumenten ­ Ergebnisse einer Bürgerbefragung.

BACKGROUND: Advance directives (ADs) such as living wills or healthcare powers of attorney are important tools to anticipate medical treatment decisions when decision-making capacity is lost in the future. Although a rising number of citizens in Germany are creating such documents, little is known about their knowledge of the purpose, types, and use of ADs. After more than 10 years since legislation on ADs came into force, this study intends to measure the objective knowledge of citizens and detect deficits in knowledge. METHODS: We conducted a cross-sectional quantitative survey of citizens aged 18+ in the city and county of Wuerzburg. The questionnaire included, among other things, possession, experience, and knowledge of ADs. Sampling was conducted via advertising and local networking. RESULTS: Of the 282 participants who took part in the survey (Mage = 50 years, 2/3 female), 43.4% reported having created a minimum of one document. In the knowledge test, an average of 22/34 points was achieved. While questions about the specific application of ADs based on a case study were often answered correctly, we found deficits about the single document types. The results in the knowledge test and the variables on the subjective level of knowledge correlate positively. DISCUSSION: The relatively high rate of ADs in this sample indicates their rapid dissemination during the past few years in Germany. Overall, the level of knowledge ADs appears to be low, revealing misconceptions about the creator's and involved people's rights and obligations. The measured knowledge level contradicts with the frequently expressed desire of citizens to preserve their autonomy by creating ADs for themselves.

The legal relevance of a minor patient's wish to die: a temporality-related exploration of end-of-life decisions in pediatric care.

Decisions regarding the end-of-life of minor patients are amongst the most difficult areas of decision-making in pediatric health care. In this field of medicine, such decisions inevitably occur early in human life, which makes one aware of the fact that any life-young or old-cannot escape its temporal nature. Belgium and the Netherlands have adopted domestic regulations, which conditionally permit euthanasia and physician-assisted suicide in minors who experience hopeless and unbearable suffering. One of these conditions states that the minor involved must be legally competent and able to express an authentic and lasting wish to die. This contribution is different from other legal texts on end-of-life decisions in modern health care. Foremost, it deals with the role time-bound components play in our views on the permissibility of such decisions with regard to minor patients. While other disciplines provide profound reflections on this issue, from a legal point of view this side has hardly been explored, let alone examined with regard to its relevance for the legal permissibility of end-of-life decisions in pediatrics. Therefore, the manuscript inquires whether there are legal lessons to be learned if we look more closely to temporality-related aspects of these end-of-life decisions, particularly in connection to a minor patient's assumable ability to choose death over an agonizing existence.

SELF-ADMINISTRATION OR PRACTITIONER ADMINISTRATION? THE SCOPE OF FUTURE GERMAN ASSISTED DYING LEGISLATION.

In 2020, the German Federal Constitutional Court declared unconstitutional and void a 2015 criminal law penalising suicide assistance in a recurring fashion and called into existence a right to a self-determined death, including the use of suicide services, where available. Due to subsequent legislative inaction, no holistic assisted dying legislation offering protection for vulnerable individuals is currently in place in Germany. Calls have been made for law reform in this area. This article contemplates the possible scope of a future assisted dying framework in Germany. It does so by focusing on the method of administration and analyses whether such a framework should be limited to allowing eligible persons to self-administer relevant lethal medications, which have been prescribed to them by a medical practitioner or whether, and to what extent, practitioners should be able to administer relevant lethal substances to patients. This is comparatively analysed while also keeping in mind any stipulations made by the German Constitutional Court in its 2020 judgment on the requirements of future assisted dying legislation. The article concludes that an assisted dying framework allowing a free choice between self and practitioner administration in Germany best complies with the guidance provided by the Constitutional Court.

Nursing Home Resident, Family, and Staff Perspectives on Hospital Transfers for End-of-Life Care.

Residents who are terminally ill often experience transfers to the emergency department resulting in hospitalizations, which may be potentially avoidable with treatment in the nursing home. This qualitative study explored the perspectives of 15 residents, 10 family members, and 20 nursing home staff regarding end-of-life care and the circumstances prompting resident transfers. Data analysis of participant interviews conducted January to May 2019 in a South Florida nursing home identified four themes related to transfer to the hospital: time left to live, when aggressive treatments would be unavailing, not knowing what the nursing home can do, and transfer decisions are situation-dependent. Study findings underscore the importance of increasing resident and family awareness of treatments available in the nursing home and person-centered advance care planning discussions. Further research should explore the reasons for residents' and family members' choice of aggressive therapies and their goals for care at the end of life.

Why People Think They Might Hasten Their Death When Faced With Irremediable Health Conditions Compared to Why They Actually Do so.

This study surveys the differences of relatively healthy proponents of end-of-life choices and people with irremediable health conditions having already made the decision to hasten their deaths on what each group considers important in influencing a desire to hasten death. Psychosocial factors were more important than physical ones for both groups; but those contemplating what might influence them to hasten their deaths in the future thought pain and feeling ill would be much bigger factors than they turned out to be for those deciding to do so. Those having decided to hasten their deaths cited the lack of any further viable medical treatments and having to live in a nursing home as bigger factors. Identifying these psychosocial factors influencing a desire for a hastened death suggests that caregivers and medical providers may want to review what compassionate understanding and support looks like for people wanting to hasten their death.

The impact of the euthanasia assessment procedure: a qualitative interview study among adults with psychiatric conditions.

BACKGROUND: Assisted dying for adults with psychiatric conditions (APC) is highly controversial but legally possible in a few countries, including Belgium. Previous research has suggested that the complex euthanasia assessment procedure may cause additional suffering in APC but may also induce positive experiences. This study reports on the impact of the euthanasia assessment procedure as experienced by APC on three counts: 1) their mental state, including death ideation; 2) their treatment trajectory; 3) their social relationships. METHODS: We performed an in-depth qualitative interview study with 16 APC in Flanders, Belgium, who had voiced a euthanasia request between 2016-2020. Thematic coding was used. FINDINGS: We interviewed 16 APC. Euthanasia assessment procedures brought out a plethora of experiences in APC, both favourable and unfavourable. Whereas thoughts of suicide remain present to a certain extent, being in the assessment procedure allows some APC to reconsider alternatives towards life, and also to attempt new treatment options. However, many APC experience ambivalence about the supposedly inherent desirability and dignity in euthanasia. Worries also surfaced about the rationale behind and effects of involvement of APCs' social circle, and about the impact it could have on them. CONCLUSION: Further research, including other stakeholder perspectives, is recommended with a view to maximising favourable and minimising unfavourable impacts for all involved. In clinical practice attention to these impacts is paramount, and clear communication and management of expectations between physician and patient, seems appropriate to address the many ambivalent experiences that accompany APC during the euthanasia assessment procedure. Policy attention could in this regard go to clarifying certain sources of ambivalence and issues that are insufficiently addressed, such as modalities of relatives' involvement.

Predictors of treatment limitations in Finnish intensive care units.

BACKGROUND: Few studies have examined the factors that predict the limitations of life-sustaining treatment (LST) to patients in intensive care units (ICUs). We aimed to identify variables associated with the decision of withholding of life support (WHLS) at admission, WHLS during ICU stay and the withdrawal of ongoing life support (WDLS). METHODS: This retrospective observational study comprised 17,772 adult ICU patients who were included in the nationwide Finnish ICU Registry in 2016. Factors associated with LST limitations were identified using hierarchical logistic regression. RESULTS: The decision of WHLS at admission was made for 822 (4.6%) patients, WHLS during ICU stay for 949 (5.3%) patients, and WDLS for 669 (3.8%) patients. Factors strongly predicting WHLS at admission included old age (adjusted odds ratio [OR] for patients aged 90 years or older in reference to those younger than 40 years was 95.6; 95% confidence interval [CI], 47.2-193.5), dependence on help for activities of daily living (OR, 3.55; 95% CI, 3.01-4.2), and metastatic cancer (OR, 4.34; 95% CI, 3.16-5.95). A high severity of illness predicted later decisions to limit LST. Diagnoses strongly associated with WHLS at admission were cardiac arrest, hepatic failure and chronic obstructive pulmonary disease. Later decisions were strongly associated with cardiac arrest, hepatic failure, non-traumatic intracranial hemorrhage, head trauma and stroke. CONCLUSION: Early decisions to limit LST were typically associated with old age and chronic poor health whereas later decisions were related to the severity of illness. Limitations are common for certain diagnoses, particularly cardiac arrest and hepatic failure.

What hinders and helps in the end-of-life decision-making process for children: Parents' and physicians' views.

AIM: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. METHODS: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71 physicians. The end-of-life decisions mainly concern decisions to withhold or withdraw life-sustaining treatment. RESULTS: The importance of taking sufficient time and exchanging clear, neutral and relevant information was main facilitators expressed by both parents and physicians. Lack of time, uncertain information and changing doctors were seen as important barriers by both parties. Most facilitators and barriers could be seen as two sides of the same coin, but not always. For example, some parents and physicians considered the fact that parents hold strong opinions as a barrier while others considered this a facilitator. Furthermore, parents and physicians showed differences. Parents especially underlined the importance of physician-related facilitators, such as a personalised approach, empathy and trust. On the contrary, physicians underlined the importance of the child's visible deterioration and parents' awareness of the seriousness of their child's condition and prognosis as facilitators of EoLDM. CONCLUSIONS: This study gained insight into what parents and physicians experience as the main barriers and facilitators in EoLDM for neonates and children.

Willingness of patients with cancer pain to participate in end-of-life decisions: a multi-center cross-sectional study from three coastal provinces in southern China.

BACKGROUND: Little is known about patients' intention for participation in end-of-life decisions (EOLD) in three coastal provinces in southern China. This study aimed to explore the willingness of patients with cancer pain to participate in EOLD and potential influencing factors. METHODS: A multi-center cross-sectional study was performed in three coastal provinces in southern China. Two hundred and thirty patients with cancer pain were recruited and consented to fill out the questionnaires. The patients' willingness to participate in EOLD, demographic and disease-related data was surveyed. RESULTS: In total, 223 patients completed and returned the survey (response rate = 96.95%). One hundred four cases (46.64%) were willing to participate in EOLD. 119 (54.36%) cases not willing to participate in EOLD, respectively. Multivariate logistic regression analysis shows that educational level (OR: 0.683, 95% CI: 0.482-0.966), history of alcoholism (OR: 8.353, 95%CI: 2.535-27.525), Eastern Cooperative Oncology Group (ECOG) score (OR: 0.645, 95% CI: 0.450-0.925) and experience of explosive pain (OR: 6.367, 95% CI: 3.103-13.062) and clinical rescue (OR: 3.844, 95% CI: 1.722-8.577) had significant effects on EOLD intention (P <  0.05). Finally, a predictive model combined above five factors was established, which showed a good discrimination (area under receiver operating characteristic curve: 0.849, 95% CI: 0.796-0.899, P <  0.001) and calibration (Hosmer-Lemeshow Test: Chi-square = 10.103, P = 0.258) for which patients more willing to participate in EOLD. CONCLUSIONS: The willingness of patients with cancer pain to participate in EOLD is at a modest level in three coastal provinces in southern China. Patients with lower educational level, history of alcoholism, better health status and experience of explosive pain and clinical rescue may be more prone to participate in EOLD.

Nurses' involvement in end-of-life decisions in neonatal intensive care units.

BACKGROUND: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses' attitudes and involvement in end-of-life decisions are available. RESEARCH QUESTION/AIM: To investigate neonatal nurses' attitudes and involvement in end-of-life decisions and the relation to their socio-demographic and work-related background data. RESEARCH DESIGN: A survey was carried out in 28 neonatal intensive care units between September 2018 and January 2019. A structured questionnaire was distributed by post. PARTICIPANTS AND RESEARCH CONTEXT: The questionnaire was answered anonymously by 312 nurses (response rate, 71.1%) and returned to the investigators. ETHICAL CONSIDERATIONS: The study was approved by the Bioethics and Research Committee of Aretaieio Hospital in accordance with the Helsinki Declaration. FINDINGS: Nurses more often reported involvement in various end-of-life decisions, such as continuation of treatment without adding further therapeutic interventions for terminally ill neonates, while less reported were mechanical ventilation withdrawal and drug administration to end life. Nurses with a high attitude score, reflecting a more quality-of-life approach, were more likely to be involved in setting limits to intensive care. α low score was consistent with life preservation. Nurses' religiousness (p = 0.097), parenthood (p = 0.093), involvement in daily practice (p = 0.03), and position on the existing legal framework (p < 0.002) influenced their attitude score. DISCUSSION: The likelihood of nurses to support interventions in neonates with poor prognosis in neonatal intensive care units was related to their attitudes. After adjusting for potential confounders, the most important predictors for nurses' attitudes were parenthood, involvement in daily practice, and position supporting current legislation reform. CONCLUSION: Variability in involvement in end-of-life decisions among nurses exists on a national level.