Background: To culturally adapt and validate the Integrated Palliative care Outcome Scale to European Portuguese.
Methods: Multi-centred observational study with 2 assessment points. Data were collected in nine centres using consecutive sampling. All patients were screened for eligibility. Inclusion criteria: =18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness, read, write and understand Portuguese. Translation and back translation with independent native speakers blind to the original measure created a Portuguese version, which was culturally adapted using cognitive interviews. For psychometric testing, the COSMIN checklist was followed. Reliability and content validity were assessed for patient and staff versions. Construct and criterion validity were tested for patient version.
Results: 1703 individuals were screened between July 1st 2015 and February 2016, 135 (7.9%) were included. Mean age was 66.8 years (SD 12.7), 58 (43%) were female. Most patients (109; 80.7%) had a cancer diagnosis. Cronbach’s alpha showed good internal consistency, 0.657 for patient, 0.705 for staff versions. Intraclass correlation coefficient testing reproducibility revealed very good reliability, 0.794–0.950 for patient and 0.456–0.925 for staff versions. There was good content validity and significant results for construct validity. Physical symptoms were better detected by females. IPOS could discriminate: practical issues in different places of care, based on cancer diagnosis, physical and emotional symptoms based on life expectancy both for patient and professional dimensions, physical and emotional symptoms based on phase of illness, for professional dimensions, and physical symptoms from the patients’ viewpoint.
Conclusions: The Portuguese IPOS is a reliable and valid measure.
CONTEXT: Chronic obstructive pulmonary disease (COPD) and lung cancer patients report several symptoms at the end-of-life, and may share palliative care needs. However, these disease groups have distinct healthcare use.
OBJECTIVE: To compare the frequency and length of hospitalisations during the last month of life between COPD and lung cancer patients, assessing the main characteristics associated with these outcomes.
METHODS: Data was retrieved from the Portuguese Hospital Morbidity Database. Deceased patients in a public hospital from mainland Portugal (2010-2015), with COPD as the main diagnosis of the last hospitalisation (n=2942) were sex- and age-matched (1:1) with patients with lung cancer. The association of patients' main diagnosis, and individual, hospital and area of residence characteristics, on frequency (>1) and length (>14 days) of end-of-life hospitalisations were quantified through adjusted odds ratio (OR), and respective 95% confidence intervals (95%CI).
RESULTS: Hospitalisations for >14 days during the last month of life were more likely for lung cancer than COPD patients (OR=1.12, 95%CI:1.00-1.25). Among COPD patients, male sex (OR=1.50, 95%CI:1.25-1.80) and death in a large hospital (OR=1.82, 95%CI:1.41-2.35) were positively associated with longer hospitalisations; the occurrence of >1 hospitalisation and hospitalisations for >14 days were less likely among those from rural areas (OR=0.72, 95%CI:0.55-0.94; OR=0.67, 95%CI:0.54-0.83, respectively). In lung cancer patients, male sex was negatively associated with longer hospitalisations (OR=0.82, 95%CI:0.69-0.98).
CONCLUSIONS: At the end-of-life, lung cancer patients had longer hospitalisations than COPD patients, and the main characteristics associated with the frequency and length of hospitalisations differed according to the patients' main diagnosis.
This study focuses on the impact of common spiritual beliefs regarding metaphysical questions in agreeability with the practice of hastened death. A sample of 497 Portuguese medical students was collected. Differences between genders and religions, predictors for agreeability with hastened death and the association between spiritual beliefs and opinion towards hastened death cases were assessed. Respondents were mostly favourable to the practice of hastened death. Formal religious affiliation and higher levels of religiosity significantly associated with lesser agreeability with hastened death. Statistically significant association was found between every hastened death scenario and multiple of the spiritual beliefs used. A number of spiritual beliefs were predictors of agreeability. We discuss the implications of religion and spirituality in agreeability with hastened death. Further research is required to better understand the true weight of spirituality in one's opinion towards this ethical dilemma.
Context: In Portugal assisted death was approved in February 2020 by the Parliament, although the law is not yet in force.
Objectives: To find out what doctors think about those practices.
Methods: A link to a questionnaire was sent by email three times, at intervals of one week, to the doctors registered in the Northern Section of the Portuguese Medical Association, before the Parliamentary approval.
Results: The questionnaire was returned by 1148 (9%) physicians. A minority of doctors would practice a form of assisted death under the present law or if it was legalized, but a higher percentage think that euthanasia should be legalized, and more would like to have that option if they themselves were in a terminal phase of a disease. Religion has a strong influence on the attitudes of doctors, so too does their contact with patients in a terminal phase, as doctors who deal with more patients with far advanced diseases are more likely to be unfavorable to assisted death. On the other hand, younger doctors are more in favor of these practices.
Conclusion: The small percentage of questionnaires sent back is a weakness in this study and casts doubts on the generalizability of the conclusions. However, this is, so far, the best approximation to the opinions of Portuguese doctors on assisted death.
Background: International research has shown that healthcare professionals (HCPs) and nonhealthcare professionals (NHCPs) are unaware of the goals and purposes of palliative care. This study evaluates the knowledge of palliative care among a sample of Portuguese adults and correlates their level of knowledge with age, gender, profession, and experience of family member's palliative care.
Method: A cross-sectional online survey was carried out on a sample of 152 HCPs and 440 NHCPs who completed an anonymous questionnaire of sociodemographic, family, and professional data, and an instrument of 26 dichotomous (true or false) questions focusing on palliative care goals and purposes.
Results: The 592 participants had a mean age of 31.3 ± 11.1 years, and most were female. Statistically significant differences between statements considered as correct by HCPs and NHCPs were found in 24 statements; HCPs had the highest percentage of correct answers. The terms most frequently associated with palliative care mentioned by NHCPs were chronic and progressive disease (n = 76), while HCPs mostly mentioned quality-of-life promotion (n = 29). Women, the elderly, and HCPs had a higher level of knowledge regarding palliative care (p < 0.001).
Conclusions: Results clearly show gaps in knowledge of palliative care, especially among NHCPs. An integrated approach is needed to inform and clarify the philosophy and goals of palliative care in different settings in order to improve knowledge.
Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers’ experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time.
Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data.
Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers’ physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time.
Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.
Background: patients with palliative needs often experience high symptom burden which causes suffering to themselves and their families. Depression and psychological distress should not be considered a “normal event” in advanced disease patients and should be screened, diagnosed, acted on and followed-up. Psychological distress has been associated with greater physical symptom severity, suffering, and mortality in cancer patients. A holistic, but short measure should be used for physical and non-physical needs assessment. The Integrated Palliative care Outcome Scale is one such measure. This work aims to determine palliative needs of patients and explore screening accuracy of two items pertaining to psychological needs.
Methods: multi-centred observational study using convenience sampling. Data were collected in 9 Portuguese centres. Inclusion criteria: =18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness. Exclusion criteria: patient in distress (“unable to converse for a period of time”), cognitively impaired. Descriptive statistics used for demographics. Receiving Operator Characteristics curves and Area Under the Curve for anxiety and depression discriminant properties against the Hospital Anxiety and Depression Scale.
Results: 1703 individuals were screened between July 1st, 2015 and February 2016. A total of 135 (7.9%) were included. Main reason for exclusion was being healthy (75.2%). The primary care centre screened most individuals, as they have the highest rates of daily patients and the majority are healthy. Mean age is 66.8 years (SD 12.7), 58 (43%) are female. Most patients had a cancer diagnosis 109 (80.7%). Items scoring highest (=4) were: family or friends anxious or worried (36.3%); feeling anxious or worried about illness (13.3%); feeling depressed (9.6%). Using a cut-off score of 2/3, Area Under the Curve for depression and anxiety items were above 70%.
Conclusions: main palliative needs were psychological, family related and spiritual. This suggests that clinical teams may better manage physical issues and there is room for improvement regarding non-physical needs. Using the Integrated Palliative care Outcome Scale systematically could aid clinical teams screening patients for distressing needs and track their progress in assisting patients and families with those issues.
Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.
INTRODUCTION: The Patient Dignity Question (PDQ) is a clinical tool developed with the aim of reinforcing the sense of personhood and dignity, enabling health care providers (HCPs) to see patients as people and not solely based on their illness.
OBJECTIVE: To study the acceptability and feasibility of the Portuguese version of the PDQ (PDQ-PT) in a sample of palliative care patients cared for in primary care (PC).
METHOD: A cross-sectional study using 20 palliative patients cared for in a PC unit. A post-PDQ satisfaction questionnaire was developed.
RESULTS: Twenty participants were included, 75% were male; average age was 70 years old. Patients found the summary accurate, precise, and complete; all said that they would recommend the PDQ to others and want a copy of the summary placed on their family physician's medical chart. They felt the summary heightened their sense of dignity, considered it important that HCPs have access to the summary and indicated that this information could affect the way HCPs see and care for them. The PDQ-PT's took 7 min on average to answer, and 10 min to complete the summary.
SIGNIFICANCE OF RESULTS: The PDQ-PT is well accepted and feasible to use with palliative patients in the context of PC and seems to be a promising tool to be implemented. Future trials are now warranted.
En 2009, au Portugal, la fondation Calouste Gulbenkian met en place un programme de soins palliatifs à domicile sur le plateau mirandais, dans la région rurale de Tras-os-Montes. Ce projet a inspiré à la journaliste ce livre en deux parties : une réflexion à la fois intime et universelle, aux accents poétiques et philosophiques, sur la fin de vie, suivie des portraits d'individus mourants.
OBJECTIVE: Treatment limitation, as well as do-not-resuscitate (DNR) directives, are difficult but important to improve patients' quality of life and minimize dysthanasia. We aimed to study the approach to withholding, withdrawal, and DNR decisions, patients' characteristics, and process documentation in a general Intensive Care Unit (ICU) in Portugal.
METHODS: A retrospective analysis of data regarding the limitation of treatment decisions collected from previously-designed forms and complemented by medical record consultation.
RESULTS: A total of 1602 patients were admitted to the ICU between 2011 and 2016. DNR decisions were documented in 127 cases (7.9%). Patients with treatment limitations were older and had higher Simplified Acute Physiology Score II. The most frequent diagnosis preceding these decisions was sepsis (52.0%, n = 66); the most common main reason for limiting treatment was a poor prognosis of acute illness. Of the patients to whom a DNR was implemented, 117 (92.1%) died in the ICU (40.1% of the total number of ICU deaths), and hospital mortality was 100%. Participants in these decisions, as well as types of treatment withdrawn and their respective timings, were not registered in medical records.
CONCLUSION: Treatment limitation and DNR decisions were relatively common, in line with other Southern European studies, but behind Northern European and North American centers. Patients with these limitations were older and more severely ill than patients without such decisions. Documentation of these processes should be clear and detailed, either in specific forms or computerized clinical records; there is room for improvement in this area.
OBJECTIVE: To identify the perception of health professionals about neonatal palliative care.
METHOD: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content analysis was performed.
RESULTS: Despite their lack of training in palliative care, the health professionals showed concern for the dignity, quality of life and comfort of the newborn and family. They expressed emotional and relational difficulties in following the trajectories of serious illness and death and in the ethical decisions regarding the end-of-life.
CONCLUSION: It is emphasized that professionals are sensitive to pain and suffering and reveal dedicated and committed in the care of the newborn and family. They are available to train and embrace the current challenges posed by the constitution of pediatric palliative care teams and to help achieve an organizational culture that advances in such care.
The end-of-life trajectory of cancer patients in palliative care (PC) elicits an anticipatory grief (AG) process in family caregivers (FCs). Although widely recognized, AG lacks conceptual clarification. This study aims to qualitatively explore the experience of FCs of patients with terminal cancer to identify the core characteristics and the specific adaptive challenges related to AG in the context of end-of-life caregiving. Data were collected through in-depth semi-structured interviews conducted in a clinical sample of 26 FCs of cancer patients in PC. Findings from thematic analysis suggest that the AG experience is characterized by traumatic distress from being exposed to life-threatening conditions and the separation distress induced by loss anticipation and current relational losses, challenging the FCs to long-term emotional regulation effort demands. These results contribute to the conceptualization of AG and may inform intervention programs for the main challenges the FCs face when adjusting to loss during end-of-life caregiving.
Recently, the Portuguese Parliament discussed four proposals aimed at allowing some forms of medically assisted death. However, all of them were rejected by the majority. Therefore, doctors who in some way accelerate a patient's death risk being convicted of the crime of homicide. Portuguese law provides some legal mechanisms that can exempt a doctor from criminal liability, such as causes excluding the conduct's wrongfulness, and causes excluding the doctor's culpability. Other elements to take into consideration are a proper interpretation of homicide crimes, thereby excluding conducts without the intent to kill; the relevance of patient consent; and the rejection of medical futility. This article explains how a doctor may not be held criminally accountable for medically assisted death, even in restrictive jurisdictions such as the Portuguese one.
OBJECTIVE: This paper aims to explore the extent to which the "revivalist" discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.
METHOD: An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.
RESULTS: The "revivalist" good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The "social embeddedness narrative" offers an alternative to the "revivalist" good death script.
SIGNIFICANCE OF RESULTS: The "revivalist" discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.
Souvenir de "L’Éneide" de Virgile, ce mélodrame épique se déroule dans une cité d’aujourd’hui. Roch apprend qu’il a un cancer des os en phase terminale et l’annonce à son fils, Énée. La nouvelle métastase rapidement dans l’entourage familial : loin de susciter l’inertie ou l’abattement, cette nouvelle provoque un élan chez ces individus bousculés par la vie. Énée décide d’emmener son père mourir au Portugal. Dans cette odyssée tragicomique en autostop, la mort s’invite au voyage, inévitable et implacable comme le jour succède à la nuit. Entre souvenirs de l’épopée antique et argot contemporain, la langue inventive et rythmée de Fabrice Melquiot dessine un chemin vers les enfers qui croise joie et humour sur sa route.
Création par Arnaud Meunier à la Comédie de Saint-Étienne le 29 janvier 2019, avant une tournée dans toute la France, avec Philippe Torreton.
Reasons for living are protective factors against suicidal behavior in adolescents. One of the most useful measures to assess them is the Reasons for Living Inventory for Adolescents (RFL-A) developed by Osman et al. The goal of this study was to examine the psychometric properties of its Portuguese version of the RFL-A. To this end, we recruited 512 high school adolescents (mean age = 16.7 years), who completed the RFL-A, a Suicidal Ideation Questionnaire, and a hopelessness scale. Exploratory factor analysis replicated the original five-factor model and confirmatory factor analysis obtained satisfactory adjustment values. The RFL-A shows good reliability (internal consistency and temporal stability) as well as good convergent, discriminant, and concurrent validities. These results indicate that the RFL-A is a valid and reliable measure to study protective factors against suicidal behaviors in Portuguese adolescents.
This study examined how common thinking of and planning for the end of life (EOL) is among German and Portuguese centenarians, and whether patterns of EOL views are shaped by cultural and individual characteristics. A significant portion of centenarians in both countries reported not thinking about the EOL, not believing in the afterlife, and not having made EOL arrangements. Latent class analysis identified three EOL patterns: Class 1 ( EOL thoughts with EOL arrangements and afterlife beliefs), Class 2 ( EOL arrangements and afterlife beliefs without EOL thoughts), and Class 3 ( Overall low endorsement of EOL items). The proportion of Portuguese centenarians was higher in Class 1 and of German centenarians higher in Classes 2 and 3. Centenarians' demographic, social, and health characteristics were significantly different across EOL patterns. As lack of EOL planning can result in poor EOL quality, enhancing communication among centenarians, family, and health-care professionals seems imperative.
Family caregivers (FCs) are fundamental for quality of life (QoL) optimization and well-being of cancer patients, contributing to the quality of palliative care services. The present study aimed to evaluate the QoL of FCs caring for oncological patients admitted to the Palliative Care Service of the Portuguese Oncology Institute of Porto. It was also intended to identify multidimensional problems that could guide strategies to provide support to FCs. Two measurement instruments, translated and validated for the Portuguese population, were administered to FCs (n=150): World Health Organization Quality Life - WHOQOL-BREF and WHOQOL-SRPB questionnaires. The Platform for QoL Assessment in Oncology (OpQoL) was used for data collection. Most FCs were female (n=97, 64.7%), catholic (n=137; 91,3%), married (n =106; 70,7%), 7%), professionally active (n=147; 98,0%), having a daily care of less than 6 hours (n=88; 58,7%) and for less than 6 months (n = 87; 58,0%). The most frequent schooling years was between 8 and 11 (n =67; 44,7%) and the most common affective relationship with the patient was being son/daughter (n =63; 42,0%). FCs education and age influenced QoL results, with the worst impacts occurring in all dimensions evaluated in the age ranges 18-30 and 46-60 years. Women score worse in physical, psychological, social, and total domains of the WHOQOL-BREF. FCs from patients with 3 and 4 level on the ECOG scale have a greater negative overall and social impact. Worst results were observed in FCs who take care more than 6 hours/day. QoL systematic assessment is decisive for FCs QoL optimization in cancer palliative care. Technology support contributes to overcome technical, methodological and logistical constraints, allowing the use of QoL results on the shortest time. This study identifies FCs needs and signal affected domains – it provides guidance to the implementation of strategies that can optimize QoL.