Ce livre se présente sous la forme d'une invitation à découvrir la diversité des traditions funéraires dans le monde, des cercueils en cage d’Ecosse aux inhumations célestes du Tibet, en passant par les têtes momifiées de Nouvelle-Zélande et la fête des morts mexicaine.
OBJECTIVES: Hospice care (HC) is seen as a comprehensive approach, that enhances quality of end-of-life (EOL) care, for terminally ill patients. Despite its positive aspects, HC enrolment is disproportionate for rural patients, who are less likely to use HC in comparison to their urban counterparts. The purpose of this study was to explore decision-making experiences, related to utilisation of HC programmes from a retrospective perspective, with family caregivers (FCGs) in a rural US-Mexico border region.
DESIGN: This qualitative study was conducted from May 2017 to January 2018 using semistructured face to face interviews with FCGs. Data were analysed using thematic analysis.
SETTING: The HC programme was situated at a local home health agency, located in rural Southern California, USA.
PARTICIPANTS: Twenty-eight informal FCGs of patients who were actively enrolled in the HC programme agreed to participate in the study.
RESULTS: Conversation about HC as an option was initiated by home healthcare staff (39.3%), followed by physicians (32.1%). Emerging themes related to challenges in utilisation of HC and decision-making included: (1) communication barriers; (2) lack of knowledge/misperception about HC; (3) emotional difficulties, including fear of losing their patient, doubt and uncertainty about the decision, denial and (4) patients are not ready for HC. Facilitators included: (1) patient's known EOL wishes; (2) FCG-physician EOL communication; (3) the patient's deteriorating health and (4) home as the place for death.
CONCLUSIONS: HC patients' FCGs in this rural region reported a lack of knowledge or misunderstanding of HC. It is recommended that healthcare providers need to actively engage family members in patient's EOL care planning. Optimal transition to an HC programme can be facilitated when FCGs are informed and have a clear understanding about patients' medical status along with information about HC.
End-of-life decision-making in patients with dementia is a complex topic. Belgium and the Netherlands have been at the forefront of legislative advancement and progressive societal changes concerning the perspectives toward physician-assisted death (PAD). Careful consideration of clinical and social aspects is essential during the end-of-life decision-making process in patients with dementia. Geriatric assent provides the physician, the patient and his family the opportunity to end life with dignity. Unbearable suffering, decisional competence, and awareness of memory deficits are among the clinical considerations that physicians should incorporate during the end-of-life decision-making process. However, as other societies introduce legislature granting the right of PAD, new social determinants should be considered; Mexico City is an example. Current perspectives regarding advance euthanasia directives (AED) and PAD in patients with dementia are evolving. A new perspective that hinges on the role of the family and geriatric assent should help culturally heterogeneous societies in the transition of their public health care policies regarding end-of-life choices.
Background: Little attention has been paid to the ways in which nurses personally experience, understand and assign meaning to providing palliative care.
Aim: A qualitative study of four nurses working with patients in the terminal phase in a hospital in Mexico was conducted to understand their lived professional experiences and relationships with death.
Methods: Four interviews were analysed using the Greimasian actantial-semiotic model. Actants were categorised by narrative role and their actions were analysed. The grammatical features of the narration were also examined.
Findings: Nurses sought a good death for the patient, which they typically achieved, and spiritual peace for themselves, which they often did not. Nurses placed a high value on personal, social and professional recognition for their work. The philosophical themes affecting nursing as a vocation that emerged included life and death, truth and honesty and the role of God and the family. These professional values were often contradictory, and these dilemmas should be addressed in professional training and support.
Alejandro rentrant chez lui après un bon repas, rencontre au coin d'une rue une femme pour le moins... squelettique. Jeune illustrateur voyageur, Mickaël Soutif nous raconte une histoire toute en rimes légères, habile prétexte à évoquer la mort d'un point de vue parfaitement original, celui des morts, avec pour décor la fête des morts au Mexique.
BACKGROUND: Admission to the emergency department (ED) of patients with advanced or end-of-life (EoL) cancer saturates the services that provide active medical attention to the complications of anticancer therapy, and the lack of specific protocol limits proper handling.
OBJECTIVE: The aim of this study was to describe the characteristics of patients with advanced cancer admitted to the ED at the EoL in a comprehensive cancer center in Mexico.
PATIENTS AND METHODS: We conducted a retrospective analysis of patients admitted to ED of the National Cancer Institute of Mexico City, with 3 or less days before they died, between January 2011 and December 2018. The data collected included clinical and demographic characteristics, reason for admission to the ED, number of admissions to ED in the last month of life, and cancer treatment received.
RESULTS: A total of 426 patients were included; 60.8% were female with a median age of 60 years; 71.6% patients were receiving some kind of disease-modifying treatment, although the oncologist had considered they could die within 6 months, and 16 of them were receiving concomitant PC. 8.9% of these patients had been admitted 3 or more times to the ED in the last month. The principal reasons for admission to ED were dyspnea, uncontrolled pain, 12 patients were admitted in active death and 94 died within hours of admission to ED.
CONCLUSIONS: Palliative care approach in oncological patients admitted to ED is important to avoid unnecesary suffering at the EoL.
This study explores how medical students feel about caring for terminally ill patients as well as how their medical courses prepare them for addressing end-of-life (EOL) issues with patients. Four hundred and five Mexican medical students were surveyed through the Student Views on Death questionnaire. The vast majority of students (94%) felt that physicians should inform patients of their impending death. Most students said they felt comfortable talking with (61%) or examining (76%) terminally ill patients. However, only half the students actually talked with patients about death. Participants in our study were interested in learning about EOL medical attention, yet most considered themselves poorly prepared to offer this type of care to terminally ill patients. The study provides objective data on a topic that has scarcely been explored in Mexico, data that will be useful in designing educational activities to improve EOL medical training.
À la Toussaint, les populations amérindiennes du Mexique déposent des aliments et des boissons sur les tombes et les autels dressés dans les maisons, afin d’apporter un réconfort aux morts réputés être engagés dans un épuisant cheminement post-mortem. Quel sens attribuer à cette « vitalité » post-mortem ? Comment expliquer que des êtres, que l’on ne peut percevoir, puissent se mouvoir et consommer des aliments ? En s’appuyant sur les résultats d’une enquête ethnographique réalisée chez les Mixe de l’État de Oaxaca, cet article apporte des éléments de réponses à cette interrogation. En même temps que la mise au jour des conceptions relatives aux mécanismes physiologiques à l’œuvre chez les morts, l’enjeu est de déterminer quelles relations sociales les vivants établissent par l’intermédiaire de la nourriture et des boissons avec ces êtres au statut ambivalent à qui les familles doivent rendre hommage tout en maintenant une certaine distance.
Background: The ethical principle of justice demands that resources be distributed equally and based on evidence. Guidelines regarding forgoing of CPR are unavailable and there is large variance in the reported rates of attempted CPR in in-hospital cardiac arrest. The main objective of this work was to study whether local culture and physician preferences may affect spur-of-the-moment decisions in unexpected in-hospital cardiac arrest.
Methods: Cross sectional questionnaire survey conducted among a convenience sample of physicians that likely comprise code team members in their country (Indonesia, Israel and Mexico). The questionnaire included details regarding respondent demographics and training, personal value judgments and preferences as well as professional experience regarding CPR and forgoing of resuscitation.
Results: Of the 675 questionnaires distributed, 617 (91.4%) were completed and returned. Country of practice and level of knowledge about resuscitation were strongly associated with avoiding CPR performance. Mexican physicians were almost twicemore likely to forgo CPR than their Israeli and Indonesian/Malaysian counterparts [OR1.84 (95% CI 1.03, 3.26), p = 0.038]. Mexican responders also placed greater emphasison personal and patient quality of life (p < 0.001). In multivariate analysis, degree of religiosity was most strongly associated with willingness to forgo CPR; orthodox respondents were more than twice more likely to report having forgone CPR for apatient they do not know than secular and observant respondents, regardless of the country of practice [OR 2.12 (95%CI 1.30, 3.46), p = 0.003].
Conclusions: In unexpected in-hospital cardiac arrest the decision to perform or withhold CPR may be affected by physician knowledge and local culture as well as personal preferences. Physician CPR training should include information regarding predictors of patient outcome at as well as emphasis on differentiating between patient and personal preferences in an emergency.
BACKGROUND: Physicians play a fundamental role in the care of patients at the end of life that includes knowing how to accompany patients, alleviate their suffering and inform them about their situation. However, in reality, doctors are part of this society that is reticent to face death and lack the proper education to manage it in their clinical practice. The objective of this study was to explore the residents' concepts of death and related aspects, their reactions and actions in situations pertaining to death in their practice, and their perceptions about existing and necessary training conditions.
METHODS: A qualitative approach was used to examine these points in depth based on interviews conducted with seven oncology residents.
RESULTS: Participants do not have a clear concept of death and, although it is seen as a common phenomenon, they consider it an enemy to beat. The situations to which respondents react more frequently with frustration and sadness after the death of patients were when they felt emotionally involved, if they identify with the patient, in cases of pediatric patients and with patients who refuse treatment. To deal with death, participants raise barriers and attempt to become insensitive. Although residents in this study recognize the importance of training to learn how to better deal with death, it seems they are not fully invested in reaching more of it.
CONCLUSIONS: Participants face death in a daily basis without the necessary training, which appears to impact them more than they are willing to accept. They do not achieve their goals managing situations regarding death as well as they assume they do. Despite recognizing the need of more training and support for better coping with death, they prefer to continue to learn from their experience.
TRIAL REGISTRATION: Not applicable.
BACKGROUND: Palliative care (PC) for patients with malignant hematological diseases is scarcely documented, particularly in low- and middle-income countries. This study aimed to document PC provided to patients with hematologic malignancies.
METHODS: Bidirectional study conducted from July 2016 to June 2019 at the hematology and palliative care departments at a reference center in Northeast Mexico for low-income open population uninsured patients. Clinical records and electronic files of patients with malignant hematological diseases of both sexes and all ages attending an academic hematology center were reviewed. Statistical analysis was performed with the SPSS version 22 program. Acute and chronic leukemias, multiple myeloma, Hodgkin lymphoma, non-Hodgkin lymphoma, and others were included.
RESULTS: Five-hundred ten patients were studied, of which 148 (29%) died. Eighty-one (15.88%) patients including 31 (20.9%) who died received PC. Median age at palliative diagnosis was 42 (2-91) years. The most common symptom was pain (69.7%). The most frequent reason for palliative referral was treatment-refractory disease (39%). During the last week of life, 19 (95%) of 20 patients had blood sampling; 17 (85%) received antibiotics; 16 (80%) had a urinalysis performed; 16 (80%) received analgesia, including paracetamol (11, 35.5%) and buprenorphine (7, 22.6%); 10 (50%) received blood products; 9 (45%) were intubated; and central venous catheters were inserted in 5 (25%) patients.
CONCLUSIONS: Palliative care was provided to a minority of patients with hematologic malignancies and considerable improvement is required in its timely use and extension.
INTRODUCTION: Family caregiver-provider communication is essential to making an effective hospice care transition for patients. Despite the importance of this topic, there is little information about how caregivers in rural US-Mexico border regions navigate hospice care transition and their needs. This study explores the family caregivers' experience relating to their end-of-life (EOL) communication and needs for hospice care transition.
METHODS: In-depth interviews using qualitative methods were conducted with 28 informal caregivers of patients who are enrolled in home hospice care in a rural US-Mexico border region. Thematic analysis was applied to analyze the data.
RESULTS: Qualitative themes that emerged include (1) lack of/insufficient EOL communication and (2) informational needs, including (a) signs of symptom changes, (b) EOL treatment options and goals of care, and (c) hospice care and its benefits. Limited caregiver-provider EOL communication was observed, in which the majority of the caregivers (n = 22, 78.6%) were informed of the patient's terminal condition, but only half (n = 15, 53.6%) had a discussion with the providers about hospice care.
CONCLUSION: Timely EOL communication between caregivers and the providers is key to the patient's optimal transition to hospice care. Providers need to be aware of the caregivers' informational needs relating to patient symptoms and health condition as well as hospice care. It is important to be aware of the impact of cultural values on hospice care placement. A clear explanation about the purpose and functions of hospice care and its benefit can better guide the family caregivers in making hospice care decisions.
Background: Cancer is a major burden of disease and a public health problem, as it is one of the main causes of morbidity and mortality worldwide. It is estimated that 25% of cancer patients die without receiving proper pain management.
Objective: To acknowledge the epidemiological profile of first-time patients at the palliative care service of a referral center, along with the pharmaceutical treatment and social and familiar implications of the treatment costs in first-time patients.
Methods: A survey including 28 questions was conducted including 490 first-time patients at the National Cancer Institute in Mexico City.
Results: Median age was 53 years; 63.3% (n = 310) were females; 72% were married or single (50.5% and 21.2%, respectively). The most frequent diagnoses were gastrointestinal tumors, followed by urological, and skin/soft tissue carcinomas (19.8%, 12.5%, and 12%, respectively). Pain prevalence was 50.4% among the cohort. From the subgroup of participants with pain, 26.7% presented an intensity =7.
Conclusions: As most patients in our study presented pain, there is a need of strengthening public policy about opioid treatments.
Research on marital status-gender differences in later-life trajectories of cognitive functioning is scarce. Drawing on seven waves of data from the Hispanic Established Population for the Epidemiologic Study of the Elderly, this research uses growth curve models to examine later-life dynamics of cognitive functioning among married and widowed older men and women of Mexican descent (aged 65+; N = 3329). The findings demonstrate that the widowed, regardless of gender, had lower initial levels of cognition but a less steep cognitive decline across waves, compared to married men. Age and socioeconomic resources accounted for these marital status differences in levels and rates of change in cognitive functioning completely among widowed men and partially among widowed women. Moreover, net of all the factors, married women had a slower cognitive decline than married men. This study also shows that health and social integration might shape cognitive functioning among older adults of Mexican descent.
BACKGROUND: Little is known about the patterns of end-of-life (EOL) health care for older Mexican-Americans with or without a diagnosis of Alzheimer's disease and related dementias (ADRD). Our objective was to investigate the frequency of acute hospital admissions, intensive care unit (ICU) use, and ventilator use during the last 30-days of life for deceased older Mexican-American Medicare Beneficiaries with and without an ADRD diagnosis.
METHODS: We used Medicare claims data linked with survey information from 1,090 participants (mean age of death 85.1 years) of the Hispanic EPESE. Multivariable logistic regression models were used to estimate the odds for hospitalization, ICU use, and ventilator use in the last 30-days of life for decedents with ADRD compared to those without ADRD. Generalized linear models were used to estimate risk ratio for length of hospital stay (LOS).
RESULTS: Within the last 30-days of life, 64.5% of decedents had an acute hospitalization (59.1% ADRD, 68.3% no ADRD), 33.9% had an ICU stay (31.3% ADRD, 35.8% no ADRD), and 17.2% used a ventilator (14.9% ADRD, 18.8% no ADRD). ADRD was associated with significantly lower hospitalizations (OR=0.67, 95% CI=0.50-0.89) and shorter LOS (RR=0.77, 95% CI=0.65-0.90).
CONCLUSION: Hospitalization, ICU stay, and ventilator use are common at the end of life for older Mexican-Americans. The lower hospitalization and shorter LOS of decedents with ADRD indicate a modest reduction in acute care use. Future research should investigate the impact of EOL planning on acute-care use and quality of life in terminally ill Mexican-American older adults.
Objective: This study examined the association between transnational death and psychological distress among undocumented Mexican immigrants. The Minority Stress Model and a disenfranchised grief perspective were used as frameworks for this study.
Method: Respondent driven sampling (RDS) was used to collect data from clinical interviews with 248 undocumented Mexican immigrants residing near the US–Mexico border.
Results: After controlling for relevant covariates, experiencing transnational death was a significant predictor of clinically significant distress in this at-risk population.
Conclusions: Our findings underscore the need to contextualize transnational death among undocumented immigrants from a perspective of disenfranchised grief that requires the development of contextually and culturally sensitive interventions aimed at addressing the high prevalence of transnational death and its associated distress in this marginalized population.
Aim: The aim of the study is to assess which factors are associated with self-efficacy for making these decisions in surrogates of end-stage kidney disease patients.
Materials and Methods: Cross-sectional study conducted in the hemodialysis clinic of a private hospital in Mexico City. A total of 124 surrogates of patients in hemodialysis were included in the study. Self-efficacy for decision-making was assessed with the Family Decision-Making Self-Efficacy Scale. As factors related to decision-making self-efficacy, sociodemographic data, health information, and professional help received for dealing with end-of-life issues were assessed in both patients and surrogates. Functional status and advanced directives of the patient as well as prior experience in decision-making of the surrogates were also included. Logistic regression models were used to establish the associations.
Results: The mean age of participants was 49.4 years (standard deviation: 14). Factors associated to decision-making self-efficacy were awareness of the surrogate about the terminal disease of the patient (P < 0.001), prior conversation between the surrogate and the patient about end-of-life preferences (P = 0.037), time between the patient was told dialysis was required and accepting it inferior to 1 month (P = 0.016), and visual impairment of the patient (0.040).
Conclusions: This study provides information of which factors are associated with self-effectiveness in surrogates of terminally ill renal patients so that strategies based on these considerations might be implemented in the future.
Background: Early specialized palliative care improves quality of life of patients with advanced cancer, and guidelines encourage its integration into standard oncology care. However, many patients fail to obtain timely palliative/supportive care evaluations, particularly in limited-resource settings. We aimed to determine the proportion of patients with advanced cancer who received an assessment of symptoms and were referred to supportive and palliative care services during the first year after diagnosis in a Mexican hospital.
Methods: Individuals with newly diagnosed advanced solid tumors and 1 year of follow-up at the oncology clinics in the Instituto Nacional de Ciencias Medicas y Nutricion Salvador Zubiran in Mexico City from October 2015 to April 2016 were included in this retrospective study.
Results: Seventy-seven patients were included. Forty-two (54.5%) were referred to the various supportive care services during the first year after diagnosis, and 23 (29.8%) were referred to the palliative care clinic. The most commonly assessed symptoms by oncologists were pain (77.9%), anorexia (74.0%), fatigue (68.8%), and nausea (55.8%), while depression/anxiety were evaluated in 10 (12.9%) patients. The oncologist offered to clarify treatment goals in 39 (50.6%) cases and evaluated the understanding of diagnosis/illness and prognosis in 22 (28.5%).
Conclusion: Palliative and supportive care services were widely underutilized, which may be related to a lack of standardized symptom assessments and poor end-of-life communication. Novel strategies are needed to improve the implementation of tools for systematic symptom assessment and to optimize the integration of supportive care interventions into oncology care in developing countries.
Background: Lack of education and training in palliative care has been described to be one of the most important barriers to pediatric palliative care implementation.
Objective: To examine what factors determine the degree of knowledge and level of comfort Mexican pediatricians have providing pediatric palliative care.
Methods: A questionnaire that assessed palliative care concepts was developed and applied online to Mexican pediatricians, both generalists and specialists.Results:A total of 242 pediatricians responded. The majority had not received palliative care education (92.6%) and felt uncomfortable discussing palliative needs with patients and families (92.1%). The mean score of the questionnaire was 6.8 (±1.4) of 10 correct answers. Knowledge in palliative care was associated with exposure to oncologic patients (P = .01) and previous palliative care education (P = .02) but inversely related to the pediatrician's age (P = .01). Comfort addressing patient's palliative care needs was associated with knowledge in palliative care (P < .01), exposure to oncologic patients (P = .03), and previous education in palliative care (P = .02).
Conclusions: Although Mexican pediatricians have basic knowledge of palliative care concepts, they do not feel comfortable addressing palliative care needs, suggesting that the main barrier for implementing palliative care is not the lack of knowledge but rather feeling uncomfortable when addressing these issues with patients and families. Educational programs should incorporate strategies that could help physicians develop comfort in approaching palliative care patients.
BACKGROUND: The idea to accelerate the process of death in a terminally ill patient is an issue that has polarized societies since ancient times. The purpose of this study is to describe and analyze the opinion of medical students from Nuevo Leon, Mexico, about passive euthanasia, active euthanasia, and their personal posture on the topic.
MATERIAL AND METHODS: Using a three-part questionnaire, 1,319 medical students of the first three years of medical school, from three of the four medical schools in the state, were interviewed. The questionnaire included questions on demographics, religion, and the personal posture of the student on active euthanasia, passive euthanasia, and their personal posture on the topic.
RESULTS: Of those interviewed, 44.4% were in favor of active euthanasia, 52.1% of passive euthanasia, and 44.8% had a positive personal posture on the topic. Age and grade were not significant variables for the posture of the students, but the variable gender showed a predominantly positive posture in the male subgroup for active (p=0.001) and passive euthanasia (p=0.031). Religion and the importance of religion/spirituality in daily life were the most significant factors (p<0.005) for the interviewees to hold a negative posture in each of the three scenarios. The legal nature of the scenario (p=0.000) and respect for patient's autonomy (p=0.000) were the most important arguments that could change an original negative posture into a positive one.