OBJECTIVE: To know the facilities and difficulties the palliative care team professionals experience in the implementation process of advance healthcare directives.
METHOD: Exploratory-descriptive study with a qualitative approach, involving 51 professionals from seven palliative care teams in the state of Rio Grande do Sul, Brazil. The data were collected between December 2018 and April 2019 and discursive textual analysis was applied.
RESULTS: The facilities found were: the approach by the palliative care team; listening and respecting patients' wishes; effective communication between professionals, patients, and family members and resolution of difficult situations. The difficulties reported were: legal issues; the lack of knowledge of professionals about the subject; the lack of institutional protocols; the difficulty in talking about death and the family barrier.
CONCLUSION: Despite the perceived facilities and difficulties, palliative care professionals intend to work based on the patients' desires and will, aiming to offer dignity in the dying process.
Introduction: Including palliative care (PC) in overloaded medical curricula is a challenge, especially where there is a lack of PC specialists. We hypothesised that non-specialised rotations could provide meaningful PC learning when there are enough clinical experiences, with adequate feedback.
Objective: Observe the effects of including PC topics in non-specialised placements for undergraduate medical students in two different medical schools.
Design: Observational prospective study.
Setting: Medical schools in Brazil.
Participants: 134 sixth-year medical students of two medical schools.
Methods: This was a longitudinal study that observed the development of Self-efficacy in Palliative Care (SEPC) and Thanatophobia (TS) in sixth-year medical students in different non-specialised clinical rotations in two Brazilian medical schools (MS1 and MS2). We enrolled 78 students in MS1 during the Emergency and Critical Care rotation and 56 students in MS2 during the rotation in Anaesthesiology. Both schools provide PC discussions with different learning environment and approaches.
Primary outcomes: SEPC and TS Scales were used to assess students at the beginning and the end of the rotations.
Results: In both schools’ students had an increase in SEPC and a decrease in TS scores.
Conclusion: Non-specialised rotations that consider PC competencies as core aspects of being a doctor can be effective to develop SEPC and decrease TS levels.
Background: To assess the psychometric properties, including internal consistency, construct validity, criterion validity, criterion-group validity, and responsiveness, the Reviewed McGill Quality of Life Questionnaire (MQOL-R), into Brazilian Portuguese-(BrP). Also, to analyze the relationship of the BrP-MQOL-R with the scores on the Karnofsky Performance Scale (KPS) and on the Numerical Pain Scale (NPS 0–10).
Methods: The BrP-MQOL-R was administered to a sample of 146 adults (men = 78). A team of experts translated the MQOL-R according to international guidelines. Convergent validity and Confirmatory factor analysis (CFA) was performed.
Results: The BrP-MQOL-R Cronbach’s alpha was 0.85. CFA supported the original four-factor structure, with the following revised model fit-indices: PCLOSE = 0.131, Tucker-Lewis Index (TLI) rho 2 = 0.918, incremental fit index (IFI) delta 2 = 0.936. The convergence validity is supported by a significant correlation between BrP-MQOL-R total scores and their subscales with KPS and with the single item related to the quality of life. And by a converse correlation with the pain scores in the NPS (0–10). Receiver operator characteristics (ROC) analysis showed subjects with KPS equal to or lower than 30% could be discriminated from those with scores on KPS higher than 30% by an area under the curve (AUC) = 0.71, sensitivity = 97%, and specificity = 92%).
Conclusion: The BrP-MQOL-R proves to be a reliable instrument for assessing the quality of life (QOL) in palliative care (PC), with primary evidence of validity. BrP-MQOL-R presented adequate discriminate properties to identify distinct conditions that impact the QOL in PC.
Background: According to the Latin America Association for palliative care, Brazil offers only 0.48 palliative care services per 1 million inhabitants. In 2012, no accredited physicians were working in palliative care, while only 1.1% of medical schools included palliative care education in their undergraduate curricula. As a reflection of the current scenario, little research about end-of-life care has been published so that studies addressing this subject in the Brazilian setting are crucial.
Methods: A cross-sectional study study conducted with students applying for the medical residency of the Federal University of São Paulo were invited to voluntarily participate in an anonymous and self-administered questionnaire survey. The latter included demographic information, attitudes, prior training in end-of-life care, prior end-of-life care experience, the 20-item Palliative Care Knowledge Test (PCKT) and a consent term.
Results: Of the 3086 subjects applying for residency, 2349 (76%) answered the survey, 2225 were eligible for analysis while 124 were excluded due to incomplete data. Although the majority (99,2%) thought it was important to have palliative care education in the medical curriculum, less than half of them (46,2%) reported having received no education on palliative care. The overall performance in the PCKT was poor, with a mean score of 10,79 (± 3). While philosophical questions were correctly answered (81,8% of correct answers), most participants lacked knowledge in symptom control (50,7% for pain, 57,3% for dyspnea, 52,2% for psychiatric problems and 43,4% for gastrointestinal problems). Doctors that had already concluded a prior residency program and the ones that had prior experience with terminal patients performed better in the PCKT (p < 0,001). The high-performance group (more than 50% of correct answers) had received more training in end-of-life care, showed more interest in learning more about the subject, had a better sense of preparedness, as well as a higher percentage of experience in caring for terminal patients (p < 0,001).
Conclusions: Our study showed that Brazilian physicians lack not only the knowledge, but also training in end-of-life medicine. Important factors to better knowledge in end-of-life care were prior training, previous contact with dying patients and prior medical residency. Corroborating the literature, for this group, training showed to be a key factor in overall in this area of knowledge. Therefore, Brazilian medical schools and residency programs should focus on improving palliative training, especially those involving contact with dying patients.
OBJECTIVES: To estimate the content validity of the Symptom Control nursing outcome for heart failure patients in palliative care and to analyze the influence of experts' experience in the judgment of the relevance of indicators.
METHODS: A methodological study conducted in São Paulo in 2018, with an adaptation of Fehring's validation model. The relevance of the 11 outcome indicators was assessed by 19 experts by means of an electronically submitted survey. The influence of the experts' experience on judgment was analyzed by the Wilcoxon-Mann-Whitney test and by Kendall's Tau correlation.
RESULTS: The indicators were considered pertinent; with 54.5% classified as critical. There was no association between the weighted means of the indicators and the experts' experience.
CONCLUSIONS: The indicators analyzed are relevant for the evaluation of the Symptom Control outcome in this group of patients. The experts' judgment was not influenced by their area of clinical experience or by their experience with the Nursing Outcomes Classification (NOC).
OBJECTIVE: To investigate the prevalence of palliative sedation use and related factors.
METHODS: An observational study based on data collected via electronic questionnaire comprising 23 close-ended questions and sent to physicians living and working in the state of São Paulo. Demographic data, prevalence and frequency of palliative sedation use, participant's familiarity with the practice and related motivating factors were analyzed. In order to minimize memory bias, questions addressing use frequency and motivating factors were limited to the last year prior to survey completion date. Descriptive statistics were used to summarize data.
RESULTS: In total, 20,168 e-mails were sent and 324 valid answers obtained, resulting in 2% adherence. The overall prevalence of palliative sedation use over the course of professional practice was 68%. However, only 48% of respondents reported having used palliative sedation during the last year, primarily to relieve pain (35%). The frequency of use ranged from one to six times (66%) during the study period and the main reason for not using was the lack of eligible patients (64%). Approximately 83% of physicians felt comfortable using palliative sedation but only 26% reported having specific academic training in this field.
CONCLUSION: The prevalence of palliative sedation use is high, the primary indication being pain relief. However, frequency of use is low due to lack of eligible patients.
OBJECTIVE: to understand the meanings attributed by nurses about conditions that interfere in defending of the elderly's autonomy on the terminality of life in the context of hospitalization.
METHOD: qualitative and exploratory study, which applied the Grounded Theory. Data were collected between November 2016 and May 2017, in the internal medicine wards of a hospital in Rio de Janeiro, Brazil, through non-participant observation and semi-structured interviews. Three sample groups composed of ten nurses, eight doctors, and 15 nursing technicians were investigated.
RESULTS: the conditions are related to the medical power, subordination of nurses, family influences; the functional decline of the elderly; and biomedical model. Final considerations: the elderly's autonomy is veiled and violated since their abilities are subjugated, and the family's will and professional paternalism may prevail. However, this right must guide contemporary care models and integrate palliative care.
OBJECTIVE: to analyze the strategies implemented by nurses to reconfigure palliative oncological care due to the hospital accreditation process in Hospital do Câncer IV (Hospital of Cancer IV).
METHOD: qualitative research of historical-social approach, whose direct sources in use were written documents and four spoken accounts.
RESULTS: implemented strategies were: creation of the Nursing Division; nursing staff management; consolidation of Continuing Education sector; creation of Internal Nursing Bylaws through development of norms and routines; meetings; discussion of clinical cases; training and classes; creation of Núcleo de Assistência de Enfermagem (Nursing Assistance Core); creation of a tumoral and ostomy wound-dressing ambulatory; and organization of the 5th Vital Sign Forum. Final considerations: nurses, supported by an alliance with the institution directors, implemented effective strategies and reached significant advancement. As they took part in this endeavor, they became legitimate spokespeople of an authorized discourse in the field of oncological nursing care in Brazil.
Palliative care was initially developed for patients with advanced cancer. The concept has evolved and now encompasses any life-threatening chronic disease. Studies carried out to compare end-of-life symptoms have shown that although symptoms such as pain and dyspnea are as prevalent in patients with lung disease as in patients with cancer, the former receive less palliative treatment than do the latter. There is a need to refute the idea that palliative care should be adopted only when curative treatment is no longer possible. Palliative care should be provided in conjunction with curative treatment at the time of diagnosis, by means of a joint decision-making process; that is, the patient and the physician should work together to plan the therapy, seeking to improve quality of life while reducing physical, psychological, and spiritual suffering.
OBJECTIVES: to describe the experience of conducting workshops for teaching the subcutaneous fluid infusion therapy in palliative care patients.
METHODS: experience report based on four workshops with a workload of nine hours each, addressing the teaching, implementation of the technique, and management in the use of subcutaneous fluid infusion therapy in patients in palliative care. The host institution was a private hospital, which had two care units in the state of Rio de Janeiro.
RESULTS: we identified little knowledge about the theme. Due to the dynamics used, the workshops made it possible to qualify the participants to perform and manage the subcutaneous route in palliative care environments.
CONCLUSIONS: the workshops were an important means of training, qualification, and dissemination of nursing care in a palliative care environment. The resources used to enable the qualification in the execution and management of the presented technique.
BACKGROUND: As the global population ages, palliative care is ever more essential to provide care for patients with incurable chronic conditions. However, in many countries, doctors are not prepared to care for dying patients. Palliative care education should be an urgent concern for all medical schools all around the world, including Latin America and Brazil. Advances in palliative care education require robust assessment tools for constant evaluation and improvement of educational programmes. Bandura's social cognitive theory proposes that active learning processes are mediated by self-efficacy and associated outcome expectancies, both crucial elements of developing new behaviour. The Self-Efficacy in Palliative Care (SEPC) and Thanatophobia Scales were developed using Bandura's theory to assess the outcomes of palliative care training.
OBJECTIVES: We aimed to translate and validate these scales for Brazilian Portuguese to generate data on how well doctors are being prepared to meet the needs of their patients.
DESIGN: Cross-sectional study.
SETTING: One Brazilian medical school.
PARTICIPANTS: Third-year medical students.
METHODS: The authors translated the scales following the European Organisation for Research and Treatment of Cancer's recommendations and examined their psychometric properties using data collected from a sample of 111 students in a Brazilian medical school in 2017.
RESULTS: The Brazilian versions of SEPC and Thanatophobia Scales showed good psychometric properties, including confirmatory factor analysis, replicating the original factors (factor range: 0.51-0.90), and acceptable values of reliability (Cronbach's alpha: 0.82-0.97 and composite reliability: 0.82-0.96). Additionally, the Brazilian versions of the scales showed concurrent validity, demonstrated through a significant negative correlation.
CONCLUSIONS: The Brazilian version of the scales may be used to assess the impact of current undergraduate training and identify areas for improvement within palliative care educational programmes. The data generated allow Brazilian researchers to join international conversations on this topic and educators to develop tailored pedagogical approaches.
Background: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care.
Methods: This transversal study was conducted in a tertiary private teaching hospital, in São Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden.
Results: A total of 178 family members were interviewed in a median of 8 [4–13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00–5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden.
Conclusions: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services.
Objective: To understand the perception of adolescents with cancer undergoing palliative cares about their illness process.
Method: An exploratory and qualitative study, per formed at a federal public hospital specialized in oncology disease in Rio de Janeiro, through interviews with nine adolescents aged 12 to 20 years old, from July to August 2017. Data was submitted to thematic analysis and the theoretical framework was Hildegard Peplau's Theory of Interpersonal Relationships.
Results: Three categories emerged: Living the difficult moment of the trajectory of the disease; Feeling the social isolation and that life has stopped; and Overcoming the difficult stage of the disease. They addressed the trajectory of the disease since the diagnosis, with the awakening of feelings of isolation and stagnation of life. Moreover, they highlighted the overcoming power of these adolescents.
Final considerations: The study made it possible to know the difficulties experienced during the course of the disease, providing subsidies for the practice of nurses to happen in a sensitive, individualized manner and focused on the individual's need thus enhancing comfort and quality of life.
PURPOSE: To evaluate the perception of attending physicians, medical residents, and undergraduate medical students about death and dying, the end of life (EoL), and palliative care (PC) during training and clinical practice, highlighting knowledge gaps, and the changes needed in medical school curricula.
METHOD: Cross-sectional study of 12 attending physicians, residents, and undergraduate medical students randomly selected from a single teaching hospital in São Paulo, Brazil, 2018. Semi-structured interviews were conducted, transcripts were coded in depth, and categorizing analysis was carried out.
RESULTS: Three topical categories were recognized: Negative feelings about death and the EoL, importance of PC, and gaps in curricular structure hindering preparedness for PC and EoL communication. Besides differing perspectives depending on their years of experience, all participants strongly endorsed that the current medical school curriculum does not train and support physicians to handle EoL and PC.
CONCLUSIONS: Medical education plays a fundamental role in the development of knowledge and skills on death, dying, and PC. Such practices should extend throughout the course and be continuously improved after graduates move to clinical practice.
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.
Background: Nutritional impairment is common in cancer patients and adversely affects quality of life (QoL). The aim of this study was to investigate the association between nutritional status and QoL in incurable cancer patients in palliative care.
Methods: A prospective cohort with incurable cancer patients referred to the specialized Palliative Care Unit of the National Cancer Institute in Brazil was conducted. The nutritional risk (NR) was assessed using the Patient-Generated Subjective Global Assessment short form (PG-SGA SF), and cancer cachexia (CC) was defined according to the international consensus. QoL was evaluated using the Quality of Life Questionnaire Core 15 Palliative (QLQ-C15-PAL). Multivariate linear regressions analyses were performed to assess the relationship between the nutritional status and QoL scores.
Results: A total of 1039 consecutive patients were included. A high prevalence of NR (85.4%) and CC (78.7%) were observed. The patients with worse nutritional status presented significantly poorer physical, emotional, symptoms domains scales, and overall QoL. CC were significantly associated with QoL scores for dyspnea (p = 0.013), insomnia (p = 0.046), and appetite loss (p = 0.015), while NR were associated with all the QoL domains scales covered in QLQ-C15-PAL.
Conclusion: Our findings support that impaired nutritional status was associated with poor QoL in incurable cancer patients. NR assessed by PG-SGA SF better reflects physical, emotional, symptom burden, and overall QoL scores. Thus, this tool may contribute in identifying patients at risk of deterioration QoL.
We examined people’s preferences for place of death and identified factors associated with a home death preference. We asked a representative sample (N = 400) of older people (= 60 years) residents in the city of Belo Horizonte, about their preferences for place of death in a situation of serious illness with less than a year to live. Data were analyzed using binomial regression to identify associated factors. 52.2% indicate home as the preferred place of death. Five variables were associated with preference for death at home: those living with 1 child (odds ratio (OR)0.41; 95% confidence interval (CI):0.18-0.92; ref: without children); being in education for up to 4 years (OR0.42; 95% CI:0.20-0.89; ref: higher education); finding it difficult to live with the present income (OR3.18; 95% CI:1.53-6.62; ref: living comfortably); self-assessed fair overall health (OR2.07; 95% CI:1.06-4.03; ref: very good health) and selecting “choosing who makes decisions about your care” as the care priority that would matter to them the most (OR2.43; 95%CI:1.34-4.40; ref: dying in the place you want). Most respondents chose home as preferred place of death. However, most residents of Belo Horizonte die in hospitals, suggesting that preferences are not being considered.
BACKGROUND: The increase in the elderly population associated with a higher incidence of cancer strongly endorses palliative care (PC). Hypodermoclysis (HDC) is a feasible technique for drugs and fluids delivery at the home care setting.
OBJECTIVES: To assess the use and benefits of HDC in patients with end-of-life cancer assisted by a single home-based palliative care program (HPCP) in Belo Horizonte, Brazil.
METHODS: This was a retrospective study that analyzed medical charts from patients with end-of-life cancer who were assisted by an HPCP in a 1-year period of time.
RESULTS: A total of 333 patients, 81.7% with advanced cancer, were included. The most frequent symptoms were fatigue (44.4%) and pain (43.2%). Hypodermoclysis was used in 77.5% of the patients for the administration of fluids or medicines. Continuous palliative sedation was applied to 70.5% of patients. The place of death was home for 90.2% of the patients.
CONCLUSION: Receiving home care assistance with palliative intention may decrease the need for dying patients with cancer to visit emergency units, as their symptoms were well controlled. Hypodermoclysis was a safe and effective alternative for hydration and drug delivery when provided and supervised by an experienced team. The place of death is a reliable indicator of the quality of death, and, in this study, the HPCP allowed patients to die at home with their families. It is essential for PC professionals to understand the impact of HDC use at home care setting for patients with end-of-life cancer allowing the increase of quality of death indicators.
BACKGROUNDS: The study was conducted to evaluate intensive care unit (ICU) patients that ultimately died but could have met criteria for end-of-life management/palliative care (ELM-PC), and to analyse the application of components of palliative care, either "unperformed procedures" or elements of "futile/unnecessary treatment".
METHODS: An observational prospective cohort in five ICUs in Southern Brazil. Adult patients who died were evaluated, searching for criteria for ELM-PC. The correct application of nine preselected items by the ICU team was studied.
RESULTS: Among 253 admissions, 52 patients died; among these, 38.5% met criteria for ELM-PC. Among ELM-PC candidates (n = 20), the ELM-PC was started later (after day 3) in 60%, and only three patients received adequate palliative care. "Analgesia" and "daily family interviews" were the most correctly applied ELM-PC elements. "Terminal extubation/weaning" was not performed in any of the patients. A reduction in the lifespan from the onset of ELM-PC to death was observed in patients who underwent "correct" interventions - 66.6% died on the first day of ELM-PC.
CONCLUSIONS: In a patient cohort from a low-medium-income country, one-third of patients who died in the ICU had criteria (indications) for ELM-PC; however, the palliative care was adequately performed for only 15% of patients, with great heterogeneity and delays regarding its initiation.
PURPOSE: To examine quality indicators of end-of-life (EOL) care among privately insured people with cancer in Brazil.
METHODS: We evaluated medical records linked to health insurance databank to study consecutive patients who died of cancer. We collected information about demographics, cancer type, and quality indicators of EOL care including emergency department (ED) visits, intensive care unit (ICU) admissions, chemotherapy use, medical imaging utilization, blood transfusions, home care support, days of inpatient care, and hospital deaths.
RESULTS: We included 865 patients in the study. In the last 30 days of life, 62% visited the ED, 33% were admitted to the ICU, 24% received blood transfusions, and 51% underwent medical imaging. Only 1% had home care support in the last 60 days of life, and 29% used chemotherapy in the last 14 days of life. Patients had an average of 8 days of inpatient care and 52% died in the hospital. Patients with advanced cancer who used chemotherapy were more likely to visit the ED (78% vs 59%; P < .001), undergo medical imaging (67% vs 51%; P < .001), and die in the hospital (73% vs 50%; P = .03) than patients who did not use chemotherapy. In the multivariate analysis, chemotherapy use near death and advanced cancer were associated with ED visits and ICU admissions, respectively (odds ratio >1).
CONCLUSION: Our study suggests that privately insured people with cancer receive poor quality EOL care in Brazil. Further research is needed to assess the impact of improvements in palliative care provision in this population.