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.
BACKGROUND: Prognosis is one of the most challenging questions with which physicians are confronted. Accuracy in the prediction of survival is necessary for clinical, ethical, and organizational reasons.
AIM: Evaluate young doctors' clinical prediction of survival and the aids they could get: expert opinion, Palliative Prognostic score, and Palliative Prognostic Index.
DESIGN: Prospective, observational study.
SETTING/PARTICIPANTS: Advanced cancer patients under observation of an inhospital palliative care team, from April to July 2014. A total of 38 patients were included, mostly male (65.8%), average age 68.5 years. Average survival time was 24 days. Follow-up concluded with death or after 90 days.
RESULTS: Young doctors' clinical prediction of survival was adequate at 10.5%, with 55.3% severe errors in an optimistic direction. Palliative care experts were more adequate (23.7%) and made less severe errors (42.1%). Palliative Prognostic score and Palliative Prognostic Index were even more adequate (47% and 55%, respectively) and made even less severe errors (0% and 11%, respectively). The best correlation with observed survival was achieved when palliative care experts used palliative prognostic score ( rs = -0.629; p < 0.01).
CONCLUSION: Young doctors' clinical prediction of survival is often inadequate. Palliative Prognostic score, which includes clinical prediction of survival, calculated by palliative care experts had the best performance. Our results support the recommendation of using clinical prediction of survival together with prognostic scores.
BACKGROUND: The narrow link between practice, education, and research is essential to palliative care development. In Portugal, academic postgraduate publications are the main booster for palliative care research.
METHODS: This is a bibliometric study that aims to identify Portuguese palliative care postgraduate academic work published in electronic academic repositories between 2000 and 2015.
RESULTS: 488 publications were identified. The number of publications has increased, especially in the last five years. The most frequently used method was quantitative, healthcare professionals were the most studied participants, and psychological and psychiatric aspects of care comprised the most current theme. Practice-based priorities are financial costs and benefits of palliative care, awareness and understanding of palliative care, underserved populations, best practices, communication, and palliative care in nonhospital settings.
CONCLUSION: The number of palliative care postgraduate academic publications has increased in Portugal in the past few years. There is academic production in the eight domains of quality palliative care and on the three levels of recommendation for practice-based research priorities. The major research gaps in Portugal are at the system and societal context levels.
Le roi Dom Sebastiao du Portugal pourrait être analysé comme une figure historique de l'entre-deux-morts. La répétition des procédures de reconnaissance de son corps, après qu'il soit mort dans la mêlée d'une bataille aux conséquences catastrophiques pour l'indépendance de son pays, puis la répétition des rituels d'inhumation au retour de son corps au Portugal, au lieu de confirmer son décès aux yeux du peuple, ont contribué à le maintenir, ni vivant, ni mort, entre la vie et la mort, présent et absent, caché. Le roi Dom Sebastiao du Portugal partit pour gagner à la bataille de El-Ksar el-Kébir la couronne de roi du Maroc, en 1578, il n'en revint pas. Ou plutôt en revint, roi du mystère, de l'espoir et de la littérature.
BACKGROUND: Education sessions about palliative care among teenagers are uncommon in developed countries. However, very little is known either about the impact of this type of intervention or about how this age-group perceives its impact. The purpose of this study was therefore to (i) implement an education program about palliative care among teenagers and (ii) to investigate the impact of the program on the participants.
METHODS: An action-research study was conducted at a local community parish in Portugal in November 2015. An education programme was purposively built about palliative care, using active educational strategies adapted for teenagers. Quantitative and qualitative techniques and instruments were used for data collection: questionnaire; reflective diaries; interviews and written testimony. The program had three stages: preparation; intervention; and evaluation. Qualitative data were analysed using thematic content analysis; quantitative data were analysed descriptively.
RESULTS: 69 people (47 teenagers) participated in the education program. Findings show that the education program contributed to creating awareness about palliative care. Both the teenagers and other participants assessed the education program positively. At the end of the program, teenagers had a constructive message about palliative care.
CONCLUSIONS: The education-intervention contributed to create awareness about palliative care among the participant teenagers, who ended the program with a positive message about palliative care. Based on our findings, the following policy implications can be drawn: (1) Further research is needed to evaluate the effect of education programs about palliative care among younger age groups (teenagers and children), particularly in relation to the changing of attitudes toward palliative care. (2) Education about palliative care should be promoted to local communities, involving all age groups, to foster involvement, participation and empowerment. (3) Compassionate communities should be promoted to enhance the health and wellbeing of all citizens at the end of their life.
OBJECTIVE: This study aimed to contribute to the validation of the Portuguese version of the Prolonged Grief Disorder Questionnaire-Predeath (PG-12), examining its psychometric properties, including factorial, discriminant, and predictive validity. The prevalence of predeath prolonged grief disorder (PGD) and its psychosocial correlates were also analyzed.
METHOD: The PG-12 was assessed in a sample of family caregivers (FCs) of oncological patients in palliative care. The factorial and discriminant validity of the PG-12 were evaluated by confirmatory factor analysis. The prevalence of predeath PGD was calculated and correlated with sociodemographic characteristics, perception of illness, intensity of care, coping, and caregiver burden. Prospective data were used to assess predictive validity.
RESULTS: The sample was composed of 94 FCs, mostly female (78.8%) and daughters (61.3%), with a mean age of 52.02 (SD = 12.87). The PG-12 has been shown to be reliable, to have high internal consistency, to be monofactorial in structure, and to be independent from depression, anxiety, and burden, although predeath grief influences these symptoms. In our sample, 33% met the criteria for predeath PGD. The circumstances and coping mechanisms are also correlated with predeath grief. The PG-12 has also been shown to be predictive of postdeath outcome.
SIGNIFICANCE OF RESULTS: The PG-12 can be a useful screening tool for early identification of risk for maladjustment to loss among family caregivers.