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.
OBJECTIVE: To analyze the constitution of homes and medical-social establishments as possible spaces for the end of life in Brazilian and French scenarios.
METHOD: An ethnographic study in homes and medical-social establishments carried out in Porto Alegre and Grenoble, between October 2014 and October 2016. Participants were six people with end-of-life cancer and four family caregivers. Data was submitted to cultural analysis.
RESULTS: We showed how the (re)configurations of the home space and the medical-social establishments occur to receive people at end-of-life stage by two categories: "They don't know where I live": the home as a space for the end of life and "They are good here, but in another way": care in medical-social settings.
CONCLUSIONS: The (re)definition of the space where we die takes place based on the culture, besides the social and economic conditions of the families to receive the person at the end of life. In both spaces, home and medical-social establishments, we found that sickness and the end of life are still cross-permeated and signified according to the knowledge of health, in such a way that it continues to medicalize death and the dying process, even outside the hospital.
This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.
Palliative care (PC) improves the quality of life of patients with diseases such as cancer, and several studies have shown a reduction in costs among patients who use PC services when compared with those receiving standard oncological treatments. Most studies on PC costs are carried out in high-income countries. There is a lack of these types of studies in middle-income and low-income countries and of better evidence about this intervention.
OBJECTIVE: To describe resource utilisation and costs among patients with cancer in a Brazilian quaternary hospital by cancer localisation and per month of treatment before death.
METHODS: This study is a description of retrospective costs to estimate the costs of formal healthcare sector associated with PCs, from the perspective of a public quaternary cancer hospital. Unit costs were estimated using microcosting and macrocosting approaches.
SETTING/PARTICIPANTS: Patients older than 18 years old who died from 2010 to 2013 and who had at least two visits in PC and/or made use of hospice care.
RESULTS: Among the 2985 patients included in the study, the average cost per patient was US$12 335, ranging from US$8269 for patients with pancreatic cancer to US$19 395 for patients with brain cancer. The main costing item was hospital admission (47.6% of the total cost), followed by hospice care (29.5%) and medical and other supplies (11.1%).
CONCLUSIONS: The study clarified the direct medical costs and the profile and use of resources of patients with cancer who need PC, and can help in the planning and allocation of resources in cancer care.
OBJECTIVE: to understand how nurses deal with the elderly's autonomy at the end of life.
METHOD: qualitative, exploratory study, guided by the Grounded Theory. Ten nurses, eight doctors and 15 nursing technicians were interviewed between November 2016 and May 2017 at a university hospital in Rio de Janeiro/Brazil.
RESULTS: nurses deal with the elderly's autonomy in compliance with the code of ethics and exercise leadership in actions and interactions to defend this right, evaluating, guiding and listening to the preferences of the elderly; interacting with the family; and sharing information with the health team.
FINAL CONSIDERATIONS: the elderly's autonomy must be ensured in care planning, based on patient-centered communication and developed in the interaction among agents involved in care. The discussion on "Living Wills" Health Care Directives and principles of palliative care must be encouraged.
OBJECTIVES: To understand the meaning attributed by the nurse to the management of nursing care to the person hospitalized due to clinical complications caused by AIDS; to analyze actions related to palliative care; and to construct a theoretical matrix regarding the management of nursing care.
METHOD: Qualitative, exploratory research, guided by the Grounded Theory. Seven nurses and ten nursing technicians were interviewed between May and September 2015, in a university hospital, located in Rio de Janeiro State, Brazil.
RESULTS: Five categories that covered the profile of the hospitalized person, palliative care, intervening conditions for care management, the need for professional qualification, and other aspects to better organize and manage care, including conflict management arose.
FINAL CONSIDERATIONS: The theoretical matrix values the quality of life, the need to understand the flow of care to avoid readmissions and not adherence to medications, requiring new research in the area, such as implementation.
We present three datasets from a project about the relationship between death anxiety and religiosity. These include data from 1,838 individuals in the United States (n = 813), Brazil (n = 800), Russia (n = 800), the Philippines (n = 200), South Korea (n = 200), and Japan (n = 219). Measures were largely consistent across samples: they include measures of death anxiety, experience of and exposure to death, religious belief, religious behaviour, religious experience, and demographic information. Responses have also been back-translated into English where necessary, though original untranslated data are also included.
CONTEXT: Many patients with advanced cancer experience aggressive care during the end-of-life. Several studies have evaluated the benefits of palliative care (PC) on the reduction of aggressive measures; however, limited data are available about their benefit in Brazilian patients.
OBJECTIVES: To evaluate the impact of palliative care on the reduction of aggressive measures at the end-of-life.
METHODS: Longitudinal study that analyzed retrospectively medical records of patients who died of advanced cancer from 2010 to 2014. Data were obtained on PC referral and five quality of end-of-life care indicators; i.e., emergency department visits, hospital admission, intensive care unit admission, use of systemic antineoplastic therapy within the last 30 days of life and place of death in hospital as well as the use of a composite score for aggressiveness of care.
RESULTS: Out of the 1,284 patients, 832 (65%) received some aggressive measures in end-of-life care. Over the years, there was a reduction in the aggressiveness of care (score = 0: 33.2% vs. 47.1%, p<0.001). Patients not seen by PC received greater aggressive care compared with patients consulted by PC (score =1: 87.4% vs. 52.8%, p <0.001). Early PC was associated with less chemotherapy (p=0.001) and fewer emergency department visits (p=0.004) in the last 30 day of life, when compared with late PC. However, there were no demonstrated benefits to significantly reduce the composite score at end-of-life care aggressiveness.
CONCLUSIONS: Patients with an advanced cancer consultation by PC staff received less aggressive care at the end-of-life when compared to patients without PC.
BACKGROUND AND PURPOSE: This study describes clinical outcomes of palliative radiation therapy (RT) for children treated in distinct health-care environments-the US where there is advanced integration of palliative resources and Brazil, a country in the process of developing provisions for pediatric palliative care.
METHODS AND MATERIALS: Palliative RT cases of pediatric oncology patients aged 21-years from 2010 to 2016 in two Brazil-based and one US-based (Johns Hopkins Hospital, JHH) academic centers were reviewed in this study.
RESULTS: Eighty-eight pediatric patients were treated to 131 lesions with palliative RT. Forty-nine patients from the JHH cohort comprised 84 cases and 39 patients from the Brazil cohort comprised 46 cases. The most common indication for palliative RT was pain (55% overall, 39% Brazil, 63% JHH). Sixty-seven percent of patients experienced a complete (CR) or partial response (PR) to palliative RT, 12% reported stable symptoms (SS), and 22% reported progressive symptoms (PS). The median survival from the end of palliative RT was 3.6 months (95% confidence interval (CI), 2.3-4.8 months). When treated with palliative RT for pain, 83% of patients experience CR/PR, facilitating reduction or discontinuation of opiates in 46% of these patients.
CONCLUSION: Despite different practices, the clinical results using palliative RT for pediatric patients treated in two unique healthcare environments demonstrated it is an effective tool for pediatric oncology patients across systems.
OBJECTIVE: Qualitatively evaluate the operation of a palliative care service in oncology.
METHODOLOGY: Qualitative study conducted in a service in southern Brazil based on a fourth generation evaluation. Between September 2014 and June 2015, 460 hours of operation were observed, and 45 semi-structured interviews and five negotiation meetings were conducted; data were analyzed using the constant comparative method.
RESULTS: Potential services are: provision of outpatient palliative care, home and inpatient care provided by a multidisciplinary and support team, meeting the patient's biological, psychological, social and spiritual needs. Study limitations: ineffective communication between clinical and surgical oncology and palliative care sectors, lack of specialized training for professionals and in interpersonal relationship issues among team members.
FINAL CONSIDERATION: For palliative care progress in the service, some arrangements are required to enhance integrality of care.
Background: The benefit of palliative chemotherapy (PC) in patients with advanced solid tumors and poor performance status (ECOG-PS) has not been prospectively validated, which makes treatment decision challenging. We aimed to evaluate the overall survival, factors associated with early mortality, and adoption of additional procedures in hospitalized patients with advanced cancer and poor ECOG-PS treated with PC.
Methods: We analyzed a retrospective cohort of patients with advanced cancer treated with PC during hospitalization at an academic cancer center in Brazil from 2014 to 2016. Eligibility criteria included: ECOG-PS 3–4 and start of first-line PC; or ECOG-PS = 2 and start of second or subsequent lines. Primary endpoint was 30-day survival from start of PC. Kaplan-Meier method was used for survival estimates and Cox regression for factors associated with 30-day mortality.
Results: Two hundred twenty-eight patients were eligible. 21.9, 66.7 and 11.4% of patients had ECOG-PS 2, 3 and 4, respectively. 49.6% had gastrointestinal tumors. Median follow-up was 49 days (range 1–507). 98.2% of patients had died, 32% during the index hospitalization. The 30-day and 60-day survival rates were 55.7 and 38.5%, respectively. 30% of patients were admitted to the intensive care unit. In a multivariable analysis, ECOG-PS 3/4 (HR 2.01; P = 0.016), hypercalcemia (HR 2.19; P = 0.005), and elevated bilirubin (HR 3.17; P < 0.001) were significantly associated with 30-day mortality.
Conclusions: Patients with advanced cancer and poor ECOG-PS had short survival after treatment with inpatient PC. Inpatient PC was associated with aggressive end-of-life care. Prognostic markers such as ECOG-PS, hypercalcemia and elevated bilirubin can contribute to the decision-making process for these patients.
Background: Legal concerns have been implicated in the occurrence of variability in decisions of limitations of medical treatment (LOMT) before death.
Objective: We aimed to assess differences in perceptions between physicians and prosecutors toward LOMT.
Measurements: We sent a survey to intensivists, oncologists, and prosecutors from Brazil, from February 2018 to May 2018. Respondents rated the degree of agreement with withholding or withdrawal of therapies in four different vignettes portraying a patient with terminal lung cancer. We measured the difference in agreement between respondents.
Results: There were 748 respondents, with 522 (69.8%) intensivists, 106 (14.2%) oncologists, and 120 (16%) prosecutors. Most respondents agreed with withhold of chemotherapy (95.2%), withhold of mechanical ventilation (MV) (90.2%), and withdrawal of MV (78.4%), but most (75%) disagreed with withdrawal of MV without surrogate's consent. Prosecutors were less likely than intensivists and oncologists to agree with withhold of chemotherapy (95.7% vs. 99.2% vs. 100%, respectively, p < 0.001) and withhold of MV (82.4% vs. 98.3% vs. 97.9%, respectively, p < 0.001), whereas intensivists were more likely to agree with withdrawal of MV than oncologists (87.1% vs. 76.1%, p = 0.002). Moreover, prosecutors were more likely to agree with withholding of active cancer treatment than with withholding of MV [difference (95% confidence interval, CI) = 13.2% (5.2 to 21.6), p = 0.001], whereas physicians were more likely to agree with withholding than with withdrawal of MV [difference (95% CI) = 10.9% (7.8 to 14), p < 0.001].
Conclusions: This study found differences and agreements in perceptions toward LOMT between prosecutors, intensivists, and oncologists, which may inform the discourse aimed at improving end-of-life decisions.
Importance: Despite its spread in much of the United States and increased international interest, the Physician Orders for Life-Sustaining Treatment (POLST) paradigm still lacks supporting evidence. The interrater reliability of the POLST form to translate patients' values and preferences into medical orders for care at the end of life remains to be studied.
Objective: To assess the interrater reliability of the medical orders documented in POLST forms.
Design, Setting, and Participants: This cross-sectional study was conducted in a public university hospital in southeastern Brazil. Two independent researchers interviewed the same patients or decision-making surrogates (n = 64) during a single episode of hospitalization within a time frame of 1 to 7 days. Eligible participants were hospitalized adults aged 21 years or older who were expected to remain hospitalized for at least 4 days and whose attending physician responded no to the question, Would I be surprised if this patient died in the next year? Data collection occurred between November 1, 2015, and September 20, 2016, and first data analyses were performed on October 3, 2016.
Main Outcomes and Measures: Interrater reliability as measured by k statistics.
Results: Of the 64 participants interviewed in the study, 53 (83%) were patients and 11 (17%) were surrogates. Patients' mean (SD) age was 64 (14) years, and 35 patients (55%) and 8 surrogates (73%) were women. Overall, in 5 cases (8%), disagreement in at least 1 medical order for life-sustaining treatment was found in the POLST form, changing from the first interview to the second interview. The k statistic for cardiopulmonary resuscitation was 0.92 (95% CI, 0.80-1.00); for level of medical intervention, 0.89 (95% CI, 0.76-1.00); and for artificially administered nutrition, 0.92 (95% CI, 0.83-1.00).
Conclusions and Relevance: The high interrater reliability of the medical orders in POLST forms appears to offer further support for this advance care planning paradigm; in addition, the finding that this interrater reliability was not 100% underscores the need to ensure that patients or their surrogates have decision-making capacity and to confirm that the content of POLST forms accurately reflects patients' current treatment preferences.
BACKGROUND: Temporomandibular disorder (TMD) is the most common cause of orofacial and cervical skull pain and is considered to be a public health problem, affecting 5% to 12% of the world population. TMD is multifactorial and there are several types of treatment, with the conservative types being indicated more often as they are less aggressive and reversible. The main aim of these treatments is to relieve symptoms, reduce of pain, and restore orofacial and cervical skull functions. Photobiomodulation therapy (PBMT), a noninvasive therapy, is an option for the management of musculoskeletal disorders due to its analgesic, anti-inflammatory, and regenerative effects.
METHODS: The aim of the proposed study is to verify whether PBMT is effective for use in palliative care of TMD and orofacial and cervical skull pain. A randomized, triple-blinded, placebo-controlled clinical trial is proposed. This study will involve 200 adult participants (over 18 years of age) who will be randomly divided into two groups (n = 100): Group 1, active treatment (PBMT); and Group 2, placebo. Participants will be subjected to three sessions of PBMT or placebo and will be evaluated using the research diagnostic criteria (RDC) for TMD. Pain level (measured by a visual analog scale (VAS)), mandibular movements (measured by ruler and caliper), quality of life (measured by the Oral Health Impact Profile (OHIP)-14), and quality of sleep (measured by the Epworth scale) will be recorded. This study is being conducted at the Special Laboratory of Lasers in Dentistry (LELO) of the School of Dentistry of the University of Sao Paulo (USP).
DISCUSSION: This study will verify whether PBMT is effective in reducing TMD and orofacial and cervical skull pain. PBMT may be an option for the management of musculoskeletal disorders due to its analgesic, anti-inflammatory, and regenerative effects, in addition to being a noninvasive technique.