BACKGROUND: In Spain, there has been great effort by lawmakers to put Advance Directives (ADs) into practice since 2002. At the same time, the field of bioethics has been on the rise, a discipline that has spurred debate on the right of patients to exercise their autonomy. Despite all this, the implementation of ADs can be said to have failed in Spain, because its prevalence is very low, there is a great lack of knowledge about them and they have very little impact on clinical decisions. The purpose of this article is to analyze and discuss the main reasons for the failure of ADs in Spain.
MAIN BODY: The main reasons why ADs have no impact on clinical practice in Spain have been fundamentally four: (1) the training of health professionals about the end of life and AD is lacking; (2) there has been no public process to increase awareness about AD, and therefore people (with the exception of specific highly sensitized groups) know little about them; (3) the bureaucratic procedure to document and implement ADs is excessively complex and cumbersome, creating a significant barrier to their application; (4) in Spain, the remnants of a paternalistic medical culture continue to exist, which causes shared decision-making to be difficult.
CONCLUSION: Due to the four reasons mentioned above, AD have not been a useful tool to help honor patients' autonomous decisions about their future care and, therefore, they have not achieved their objective. However, despite the difficulties and problems identified, it has also been observed that health care professionals and the Spanish public have a very positive view of AD. Having identified the problems which have kept AD from being successful, strategies must be developed to help improve their implementation into the future.
INTRODUCTION AND AIM: Palliative care in patients with advanced heart failure is strongly recommended by Clinical Practice Guidelines. We aimed to calculate the prevalence of advanced heart failure in admitted patients, to describe their management, and to analyse the factors that influence their referral to specialised palliative care.
PATIENTS AND METHODS: Cross-sectional, multicentre study that consecutively included patients admitted for heart failure in 74 Spanish hospitals. If they met criteria for advanced heart failure, their treatment, complications and procedures were recorded.
RESULTS: A total of 3153 patients were included. Of them, 739 (23%) met criteria for advanced heart failure. They were more likely to be women, older and to have a history of anaemia, chronic kidney disease and cognitive impairment. For their management, furosemide infusions (30%) and vasodilators (21%) were used. Refractory symptoms were treated with opioids (47%) and benzodiazepines (44%). Palliative care was only provided in the last hours of life in 48% of them. A multidisciplinary approach, involving palliative care specialists was sought in 15% of these patients. Treatment with furosemide infusions, an advanced New York Heart Association functional class, to meet advanced HF criteria and the presence of cancer were associated with the referral to specialised palliative care.
CONCLUSIONS: Almost one in four patients admitted with HF met criteria of advanced disease. They were older and had more comorbidities. Specialist palliative care services were involved in only a minority of patients, mainly those who were highly symptomatic or had cancer.
Along their professional career, nurses can find patients who require palliative care (PC). It is necessary to have at least a basic education in this area, that should be acquired during their university education. The objective of this descriptive online-survey set in five nursing Colleges was to analyze Spanish nursing students' knowledge in PC, offering an image of the status of education in PC. 619 students took an online questionnaire with the Spanish version of the Palliative Care Quiz for Nurses (PCQN-SV), which also collected information about their education in the field of PC. Univariate and bivariate analyses were performed, and a predictive binary logistic regression model was developed. Students obtained an average 45.65% of right answers in PCQN-SV, with differences related to the college and academic year in which they were enrolled and to their education in PC. In the regression model having theoretical education in PC (OR = 1.70) and academic year (OR = 1.35) showed to be both predictors of getting a result in PCQN-SV over 45% of correct answers. This study showed that Spanish nursing students have a medium-low level of knowledge in PC, and it also supports the need to develop a common framework for nurses' education in PC.
Health Science students in Spain and Bolivia should be trained in the management of the processes of death and dying of patients. The aim of this study was to examine the degree of training, self-perceived safety and preferences in relation to the care of terminal and non-terminal patients. It was a descriptive, cross-sectional, multicenter study with students of Medicine, Nursing and Physiotherapy in Spain and Bolivia. The following variables were evaluated: care preparation and emotional preparation to caring for terminally ill and non-terminally ill patients, the Death Attitude Profile Revised (PAM-R) and the Bugen Scale for Facing Death. The self-perceived preparation of students for caring for terminally ill patients can be considered "fair" (mean 2.15, SD 0.756), and this was also the case for their perceived emotional preparation (mean 2.19, SD 0.827). In contrast, the score obtained for their preparedness for treating non-terminal patients was higher (mean 2.99 and 3.16, respectively). Working with terminally ill patients, including terminal or geriatric cancer patients, was the least preferred option among future health professionals. The results obtained show a limited preference for end-of-life care and treatment, highlighting a lack of preparation and motivation among health science students in Spain and Bolivia for working with these patients.
AIMS: To evaluate how nurses cope with the death of a paediatric patient, relate it to the different sociodemographic variables, and to describe personal coping strategies used by nurses in managing the process and accepting the death of the patient.
METHODOLOGY: an observational, descriptive and cross-sectional study, carried out from January to June 2018 with nurses from the palliative care area, intensive care unit, neonatology and oncohaematology area of a tertiary paediatric hospital in Barcelona city. An ad hoc questionnaire was applied, divided into three parts: socio-demographic data, the Bugen scale of coping with death and two open questions.
RESULTS: 31.37% of the respondents faced the process of death of the paediatric patient adequately, while 33.33% did not cope well. The best coping was in paediatric palliative care, followed by paediatric oncohaematology, neonatology and, finally, the intensive care unit. In addition, the variables related to this coping are the work shift, the death of a loved one in less than 3 years and previous training. On the other hand, the age of the respondents, experience in the unit and having children are not related to coping. Moreover, the professionals surveyed demand more training to improve their coping in this area, as well as interdisciplinary sessions to discuss cases of deceased patients.
Background: One of the most difficult and stressful tasks faced by health science students is having to cope with death and dying due to the emotional burden of the same. Furthermore, the moral, ethical and professional values of future health professionals are influenced by the cultures where they live.
Purpose: This study sought to compare and analyze the perception on end of life among a sample of health science students in Spain and Bolivia.
Methods: A descriptive, cross-sectional and multi-centric study. The total sample (548 students) was comprised of three groups: medical, nursing and physiotherapy students, of whom 245 were from Bolivia, and 303 were Spanish students. The measurement instruments used were the Bugen’s Coping with Death Scale and the Death Self-Efficacy Scale by Robbins.
Results: No statistically significant differences were observed between Spanish and Bolivian students (t (546) = - 0.248, p = 0.804) using the Bugen scale. This implies that there are no differences between the perception of both groups of students and that both groups use similar strategies to cope with death. Additionally, the beliefs and attitudes of both groups were similar, with Bolivian students presenting a trend towards improved scores. No differences were found between Spain and Bolivia in the results obtained on the Robbins scale, with students from both countries displaying similar skills and capabilities for facing death.
Conclusions: The beliefs on death of health science students from Spain and Bolivia were not affected by the respective cultures, type of degree studied, students’ age, or the country of origin, however, we found that students in Bolivia value death as something more natural than their Spanish counterparts.
To appropriately prepare students for this topic, education on coping with death and dying must be included within the university curriculum.
Eight focus groups were conducted in four public hospitals in Madrid to explore healthcare professionals' perceptions of advance directives (ADs) in order to improve the understanding of their lack of success among physicians and patients. A purposive sample of sixty healthcare professionals discussed ADs and reasons for their infrequent use. Three main themes were identified: perceptions about their meaning, appraisals of their use in clinical practice, and decision-making about them. Healthcare professionals perceived a lack of clarity about their definition and implementation. There is insufficient awareness of their efficacy in improving the quality of clinical relationships and decision-making, and they are often perceived only as a bureaucratic procedure. Advance directives are not integrated in the clinical practice of Madrid's healthcare specialist services because their application is exceedingly complex, because of insufficient education about them (for both professionals and citizens), and because of lack of procedural clarity. Consequently, healthcare professionals are not aware of how ADs could improve clinical decision-making, of when and for whom their use is appropriate, and of who has responsibility for providing ADs-related information to patients. These circumstances contribute to patients' lack of interest in completing these documents and to physicians' sceptical views about their usefulness.
AIMS: Develop and psychometrically assess the Palliative Nursing Care Quality Scale (PNCQS, escala de Calidad del Cuidado Enfermero Paliativo, CCEP, in Spanish). An interview-based qualitative study (1) was conducted to verify construct validity evidence, with psychometric properties of reliability and validity verified by two quantitative studies (2 & 3).
DESIGN: Quantitative instrumental, correlational, and cross-sectional study.
METHODS: Study 1 was carried out with 10 key informants. For Study 2, a sample of 103 nursing professionals was obtained and 176 nurses from palliative care resources in Spain participated in Study 3. Data were collected between May 2017 - May 2018.
RESULTS: Evidence of adequate reliability (internal consistency) and validity was found. The confirmatory factor model yielded a single latent factor for the 20 items, with adequate goodness-of-fit indices. The convergent validity data showed that the highest correlations were with the Dedication subscale of the Utrecht Work Engagement Scale and the Personal Growth subscale of Psychological Well-being, with values of 0.35 and 0.34, respectively (p < 0.01 in both cases).
CONCLUSION: The scale shows good psychometric properties, with high internal consistency and evidence of internal and convergent validity.
IMPACT: Proposing a valuable instrument which identifies good nursing in different areas of palliative care while also establishing quality indicators to guide nursing practice entails the recognition of autonomy in care. The resulting work tool can be used to systematize the assessment of nursing care in a process of open and continuous improvement.
Background: The EORTC QLQ-C15-PAL is a shortened version of the widely used EORTC QLQ-C30. This questionnaire was developed to measure the symptoms and functional health of patients receiving palliative care.
Objective: To enhance clinical interpretability of the EORTC QLQ-C15-PAL, our aim was to evaluate the sensitivity and specificity of thresholds for clinical importance developed previously for the QLQ-C30 when applied to the QLQ-C15-PAL scales.
Design: Cross-sectional observational study.
Setting/Subjects: Patients with cancer receiving any type of palliative treatment.
Measurement: Patients completed the EORTC QLQ-C15-PAL and anchor items on limitations, worries, and need for help for each of the health domains covered by the questionnaire. The anchor items were summarized in a binary criterion for clinical importance to calculate the sensitivity and specificity of the thresholds for clinical importance.
Results: In total, 225 patients participated in the study (mean age 64.5 years). Patients were recruited from Austria, Italy, the Netherlands, Poland, Spain, and the United Kingdom. The thresholds for clinical importance for the QLQ-C15-PAL scales showed a median sensitivity of 0.88 (range: 0.82 for sleep disturbances to 1.00 for dyspnea) and a median specificity of 0.74 (range: 0.54 for dyspnea to 0.89 for constipation).
Conclusion: The thresholds for clinical importance showed high sensitivity and mostly high specificity in identifying clinically important symptoms and functional health impairments as assessed by the QLQ-C15-PAL. These thresholds will facilitate interpretation of EORTC QLQ-C15-PAL scores in daily clinical practice and clinical research.
This study aimed to analyze the schools that teach ethical and legal aspects within the subject of palliative care in the degrees of medicine and nursing in Spain.
MATERIAL AND METHODS: Descriptive Analysis of the palliative care subject and their ethical and legal curricular competencies in the Spanish Nursing and Physicians undergraduate. The training received in legal ethical aspects related to palliative care was compared with the criteria established by the European Association for Palliative Care (EAPC).
DATA SOURCES: The National Conference of Nursing Deans, The National Conference of Spanish Medical Faculty Deans and The Ministry of Science, Innovation, and Universities databases were searched.
RESULTS: Twenty-one universities have an undergraduate in medicine with palliative care in their curricular training explicitly. The degree in nursing is present in fifty-six universities, palliative care is present in 62.5% of the cases. The degrees of nursing and medicine receive approximately the same level of training in ethical and legal aspects of palliative care.
CONCLUSION: The specific training received in ethical and legal issues of palliative care must be improved in medical and nursing to meet the EAPC levels.
BACKGROUND: Hispanics often have disparities at the end of life. They are more likely to die full code and less likely to have discussions regarding prognosis and do not resuscitate (DNR)/do not intubate (DNI), despite studies showing Hispanic values comfort over the extension of life. Barriers to patient-centered care include language,socioeconomic status and health literacy.
CONTEXT: We evaluated the impact of palliative care (PC) consults on the change of code status and hospice referrals, comparing seriously ill Hispanic and non-Hispanic white patients.
METHOD: A retrospective cohort study of all white and Hispanic patients referred to the PC service of a county hospital from 2006 to 2012. We evaluated ethnicity, language, code status at admission and after PC consult, and hospice discharge. Chi-squared tests were used to analyze characteristics among three groups: non-Hispanic white, English-speaking Hispanic, and Spanish-speaking Hispanic patients.
RESULTS: Of 925 patients, 511 (55%) were non-Hispanic white, 208 (23%) were English-speaking Hispanic, and 206 (22%) were Spanish-speaking Hispanic patients. On admission, there was no statistically significant difference in code status among the three groups (57%, 64%, and 59% were full code, respectively, p = 0.5). After PC consults, Spanish-speaking Hispanic patients were more likely to change their code status to DNR/DNI when compared with non-Hispanic white and English-speaking Hispanic patients (44% vs. 32% vs. 28%, p = 0.05). Spanish-speaking Hispanic patients were more likely to be discharged to hospice when compared with English-speaking Hispanics and non-Hispanic whites (33%, 29%, and 23%, respectively, p = 0.04).
SIGNIFICANCE OF RESULTS: Spanish-speaking Hispanic patients were more likely to change from full code to DNR/DNI compared with non-Hispanic white and English-speaking Hispanic patients, despite similar code status preferences on admission. They were also more likely to be discharged to hospice. PC consults may play an important role in helping patients to align their care with their values and may prevent unwanted aggressive interventions at the end of life.
OBJECTIVE: To measure the effectiveness of a brief intervention aimed at increasing interest in and use of advanced directives (AD) among primary care patients.
METHODS: Randomized controlled trial. In the intervention arm, patients were given brief oral information and a leaflet on AD by General Practitioners (GPs), in the control group were briefly informed about the study's purpose. Outcome variables were the proportion of patients who expressed interest in AD and those who completed one. Covariates were sex, age, education, race, Charlson comorbidity index (CCI), religion, and possession of financial will.
RESULTS: Overall, 332 patients were recruited; 58 in the intervention and 36 in the control group expressed interest in AD (p = 0.033) and 18 (5.4 %) made an AD (nine in each group). Variables associated with interest were Caucasian race (odds ratio [OR], 1.88), the intervention (OR, 1.86), and CCI extreme scores (OR, 0.36). Variables associated with AD completion were primary education/no schooling (OR, 5.69) and fewer children (OR, 0.57).
CONCLUSIONS: A brief oral and written intervention delivered by GP significantly increased interest in AD and achieved a completion rate of 5.4 %, without differences with the control group.
PRACTICE IMPLICATIONS: AD interventions should focus on individuals already likely to be motivated.
Euthanasia is undoubtedly the protagonist of many of the debates around the end of life both among health staff and in the general population. Considering that nurses provide care for terminally ill patients and support families and patients in their final days, it is essential to know their attitudes towards euthanasia. The aims of the study were to adapt and validate the Attitude Towards Euthanasia scale to a Spanish context, to test the dimensionality and to estimate the reliability of the scale. A cross-sectional study was conducted with a non-probabilistic sample of Spanish health-workers of 201 in a University Hospital in Ciudad Real. A self-reported socio-demographic questionnaire and the Euthanasia Attitude Scale were used for data collection. The psychometric properties of the scale were assessed, including reliability and validity using an exploratory and confirmatory factor analysis. Cronbach’s alpha of the Attitude Towards Euthanasia scale was a = 0.827 and McDonald’s Omega = 0.903. The range of items of homogeneity was from 0.205 to 0.685. For the different exploratory factor analyses carried out, the Bartlett’s test of sphericity was p < 0.001 and the sample index value of Kaiser-Meyer-Olkin was over 0.802. in all cases. We present the factorial weights for three models: The first one assumes a unidimensional solution, the second model was composed by three factors and the third model was composed by four factors. In the confirmatory factor analysis, the three models presented an acceptable fit index. The Attitude Towards Euthanasia scale adaptation to a sample of Spanish health workers has shown, with some limitations, appropriate psychometric properties. There have been several differences between the original factorial solution. It would be necessary to replicate the study to reinforce the findings about the number of factors of the scale.
OBJECTIVE: To examine trends in end-of-life communication with people with cancer in general practice.
METHODS: Mortality follow-back survey among general practitioners (GPs) in representative epidemiological surveillance networks in Belgium (BE), the Netherlands (NL) and Spain (ES) in 2009-2010 (ES: 2010-2011) and 2013-2014. Using a standardised form, GPs registered all deceased adult patients in their practice and reported for five end-of-life care topics whether they had been discussed with the patient. Non-sudden cancer deaths were included (n=2306; BE: 1233; NL: 729; ES: 344).
RESULTS: A statistically significant increase was found between 2009/2010 and 2014 in the prevalence of communication about diagnosis (from 84% to 94%) and options for end-of-life care (from 73% to 90%) in BE, and in GPs' awareness of patients' preferences for medical treatment and a proxy decision-maker in BE (from 41% and 20% up to 53% and 28%) and the NL (from 62% and 32% up to 70% and 52%). Communication about options for end-of-life care and psychosocial problems decreased in the NL (from 88% and 91% down to 73%) and ES (from 76% and 77% down to 26% and 39%).
CONCLUSION: Considerable change in GP-patient communication seems possible in a relatively short time span, but communication cannot be assumed to increase over time. Increasing specialisation of care and task differentiation may lead to new roles in communication for healthcare providers in primary and secondary care. Improved information sharing between GPs and other healthcare providers may be necessary to ensure that patients have the chance to discuss important end-of-life topics.
OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses.
DESIGN: Prospective multicenter observational study.
SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI Pediátrica-2 (MOMUCI-2) study in Spain.
PATIENTS: Children 1 to 16 years old who died in PICU during 2017 and 2018.
MEASUREMENTS AND MAIN RESULTS: During the 2-year study period, 250 deaths were recorded. Seventy-three children (29.3%) were younger than 1 year, 131 (52.6%) were between 1 and 12 years old, and 45 (18.1%) were older than 12. One-hundred eighty patients (72%) suffered from an underlying chronic disease, 54 (21.6%) had been admitted to PICU in the past 6 months, and 71 (28.4%) were severely disabled upon admission. Deaths occurred more frequently on the afternoon-night shift (62%) after a median PICU length of stay of 3 days (1-12 d). Nearly half of the patients died (48.8%) after life-sustaining treatment limitation, 71 died (28.4%) despite receiving life-sustaining therapies and cardiopulmonary resuscitation, and 57 (22.8%) were declared brain dead. The most frequent type of life-sustaining treatment limitation was the withdrawal of mechanical ventilation (20.8%), followed by noninitiation of cardiopulmonary resuscitation (18%) and withdrawal of vasoactive drugs (13.7%). Life-sustaining treatment limitation was significantly more frequent in patients with an underlying neurologic-neuromuscular disease, respiratory disease as the cause of admission, a previous admission to PICU in the past 6 months, and severe disability. Multivariate analyses indicated that life-sustaining treatment limitation, chronicity, and poor Pediatric Cerebral Performance Category score were closely related.
CONCLUSIONS: Currently, nearly half of the deaths in Spanish PICUs occur after the withdrawal of life-sustaining treatments. These children are more likely to have had previous admissions to the PICU, be severely disabled or to suffer from chronic diseases. Healthcare professionals who treat critically ill children ought to be aware of this situation and should therefore be prepared and trained to provide the best end-of-life care possible.
BACKGROUND: Palliative care knowledge is essential in primary healthcare due to the increasing number of patients who require attention in the final stage of their life. Health professionals (physicians and nurses) need to acquire specific knowledge and abilities to provide high-quality palliative care. The development of education programmes in palliative care is necessary. The Palliative Care Knowledge Test (PCKT) is a questionnaire that evaluates the basic knowledge about palliative care, but it has not been adapted into Spanish, and its effectiveness and utility for Spanish culture have not been analysed.
OBJECTIVE: The aim of this study was to report the translation into Spanish and a psychometric analysis of the PCKT.
METHODS: The questionnaire survey was validated with a group of 561 physicians and nurses. The PCKT Spanish Version (PCKT-SV) was obtained from a process, including translation, back translation and revision by experts and a pilot study. The content validity and reliability of the questionnaire were analysed.
RESULTS: The results showed internal consistency and reliability indexes similar to those obtained by the original version of PCKT.
CONCLUSION: The PCKT-SV is a useful instrument for measuring Spanish-speaking physician and nurse knowledge of palliative care, and it is suitable to evaluate the effectiveness of training activities in palliative care.
In view of the exceptional public health situation caused by the COVID-19 pandemic, a consensus work has been promoted from the ethics group of the Spanish Society of Intensive, Critical Medicine and Coronary Units (SEMICYUC), with the objective of finding some answers from ethics to the crossroads between the increase of people with intensive care needs and the effective availability of means. In a very short period, the medical practice framework has been changed to a 'catastrophe medicine' scenario, with the consequent change in the decision-making parameters. In this context, the allocation of resources or the prioritization of treatment become crucial elements, and it is important to have an ethical reference framework to be able to make the necessary clinical decisions. For this, a process of narrative review of the evidence has been carried out, followed by a unsystematic consensus of experts, which has resulted in both the publication of a position paper and recommendations from SEMICYUC itself, and the consensus between 18 scientific societies and 5 institutes/chairs of bioethics and palliative care of a framework document of reference for general ethical recommendations in this context of crisis.
Spain has been one of the most affected countries by the COVID-19 outbreak. As of 28 April 2020, the number of confirmed cases is 210,773, including 102,548 patients recovered, more than 10,300 admitted to the ICU, and 23,822 deaths, with a global case fatality rate of 11.3%. From the perspective of donation and transplantation, the Spanish system first focused on safety issues, providing recommendations for donor evaluation and testing, and to rule out SARS-CoV-2 infection in potential recipients prior to transplantation. Since the country entered into an epidemiological scenario of sustained community transmission and saturation of intensive care, developing donation and transplantation procedures has become highly complex. Since the national state of alarm was declared in Spain on 13 March 2020, the mean number of donors has declined from 7.2 to 1.2 per day, and the mean number of transplants from 16.1 to 2.1 per day. Increased mortality on the waiting list may become a collateral damage of this terrible pandemic.
Objective: to explore self-perception competence among Spanish nurses dealing with patient death and its relationship with work environment, evidence-based practice, and occupational stress.
Method: a cross-sectional web-based survey collected information from a convenience sample of 534 nurses from professional Spanish Colleges who answered four validated questionnaires: Coping with Death Scale, Practice Environment Scale of the Nursing Work Index, Perception of Evidence-Based Practice (EBP) and Nursing Stress Scale.
Results: a total of 79% of the participants were women, the average age was 40 years old, 38% had a postgraduate degree and 77% worked in public health settings. Many nurses evaluated their work environment as unfavorable (66%), reported high occupational stress (83.5±14.9), and had high scores on knowledge/skills in EBP (47.9±11.3). However, 61.2% of them perceived an optimal coping (>157 score). The multivariate logistic model indicated positive associations with work environment and EBP characteristics (OR: 1.30, p=0.054; OR: 1.04, p=0.007; OR: 1.13, p<0.001, respectively) but negative associations with occupational stress and short work experience (OR: 0.98, p=0.0043; OR: 0.74, p<0.002, respectively). These factors explained 23.1% of the coping variance (p<0.001).
Conclusion: although most nurses perceived optimal coping, the situation could be enhanced by modifying several contextual factors. The identification of these factors would improve the quality of end-of-life care by facilitating nursing management.