L’accompagnement de la fin de la vie tend vers la bientraitance dans les soins, dès l’annonce du diagnostic et durant tout le parcours médical jusqu’au décès. La démarche palliative donne des repères concernant cet accompagnement bienveillant issus du cadre législatif français, de recherches scientifiques internationales, de notre pratique, nos présupposés, notre sensibilité. En Soins Palliatifs (SP), la loi de 2016 régit les derniers temps de la vie en introduisant 3 nouveaux droits : le droit à ne pas subir l’obstination déraisonnable, le droit pour la personne d’être respectée dans sa volonté (notamment par la possibilité de rédiger les Directives Anticipées [DA]), le droit à être soulagé de la douleur et de la souffrance. Cette loi est-elle satisfaisante ? Permet-elle aux français de se donner le choix de leur fin de vie ? Alors que les français accueillent favorablement le droit à la rédaction de DA, peu les ont réellement rédigées (14 %). Que veulent exactement les français pour la fin de leur vie ? Comment ouvrir un espace de parole propice au dialogue sur les souhaits et peurs de la personne en fin de vie ? Ces questions posées par le débat sociétal risquent-elles de favoriser l’évolution de la législation vers le droit à l’euthanasie ou le suicide assisté ? Nous développerons une réflexion étayée par la revue de la littérature internationale et française.
Background: Older adults (>65 years) with palliative care needs are increasingly accessing the emergency department. Some interventions have been developed to improve the care provided, but the majority of research has focused on provider perspectives. Limited understanding of patient and family experiences and priorities means important needs may be overlooked.
Objectives: To explore patient and family caregiver experiences and identify their improvement priorities for emergency department-based palliative care delivery.
Design: A participatory action research design, experienced-based co-design, was adopted. Filmed and audio-recorded interviews and individual feedback sessions were used to capture patient data.
Setting: An urban emergency department in the UK.
Participants: Six patients aged = 65 with palliative care needs and four family caregivers were recruited from the emergency department.
Methods: Participants took part in individual or dyad audio-recorded or filmed interviews. Interview data were analyzed using thematic framework analysis. One-to-one feedback sessions with participants were used to validate findings and rank the themes to identify patient and family priorities for improvement.
Results: The analysis identified five prominent themes that captured the patient and family experience of emergency department-based palliative care. 1) Systems and processes; 2) communication and information; 3) changing expectations (of what can be done for one's health on a personal and system level); 4) recommendations (for improving palliative care in the emergency department); and, 5) acknowledgement and validation (of the patient and family). All themes except ‘recommendations’ were selected as improvement priorities. Within the context of these improvement priorities, participants provided rich insights into their perceptions of care and identified small but significant actions that could be implemented to improve their experiences of palliative care in the emergency department. These included being offered a drink or phone call, being included in conversations about their care, and being kept informed of what was happening with their care.
Conclusions: Older people with palliative care needs and their family caregivers were able to share their experiences and highlight improvement priorities for emergency department care using the experience-based co-design approach. Their experiences offer new perspectives, which can be used alongside emergency department and palliative care clinician perspectives to support service and outcome measure development in future emergency department-based palliative care.
OBJECTIVES: Life-sustaining treatment is any treatment that serves to prolong life without reversing the underlying medical conditions, and includes cardiopulmonary resuscitation, mechanical ventilation, haemodialysis and left ventricular assist devices. This study aimed to investigate the thoughts on life-sustaining treatment of Koreans and to assess the factors associated with deciding to not receive life-sustaining treatment if they develop a terminal disease.
DESIGN: Cross-sectional study.
SETTING: Guro-gu centre for dementia from 1 May 2018 to 31 December 2019.
PARTICIPANTS: In total, 150 individuals participated in this study.
OUTCOME MEASURES: The questionnaire consisted of self-report items with some instructions, demographic characteristics, thoughts on life-sustaining treatment and psychosocial scales. The preferences of the participants were investigated on the assumption that they develop terminal cancer. The psychosocial scales included the Generalised Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire-9 (PHQ-9), Connor-Davidson Resilience Scale and Multidimensional Scale of Perceived Social Support (MSPSS).
RESULTS: We classified our participants into two groups: individuals who wanted to receive life-sustaining treatment (IRLT) and individuals who wanted to not receive life-sustaining treatment (INLT). There were twice as many participants in the INLT group than there were in the IRLT. In making this decision, the INLT group focused more on physical and mental distress. Additionally, 32.7% of participants responded that terminal status was an optimal time for this decision, but more participants want to decide it earlier. The GAD-7 and PHQ-9 scores were significantly higher in the INLT group than in the IRLT group. However, the INLT group had significantly lower MSPSS family scores.
CONCLUSION: Our findings can help assess issues regarding advance directives and life-sustaining treatment, and will be a reference for designing future studies on this issue.
OBJECTIVES: Most previous studies considered advance directives (AD) as one outcome, which conceals possible variations of individuals' decisions on two AD documents-living will (LW) and durable power of attorney for health care (PA). To address this issue, this study examined how completions of PA and LW are associated with race, and whether SES and health can partially explain the racial disparities of AD possession.
METHODS: The sample included 9,902 older adults from the 2016 wave of the Health and Retirement Study. AD completion was coded as a four-category variable, including no PA or LW, no PA, no LW, and both PA and LW. Race was categorized as non-Hispanic White, non-Hispanic Black, Hispanic, and Asian or Native American. Socioeconomic status (SES) was measured by education and household wealth. Health was indicated by chronic conditions and functional limitations. Multinomial logistic regression models were used to examine the racial effects of AD possession and the effects of SES and health conditions.
RESULTS: Older adults who only have PA or only have LW significantly differed in racial identity, SES and Health. The regression results show that being a racial minority was associated with a lower likelihood to have both ADs and only PA. SES partially buffered racial disparities in AD possession, while the moderation of health was not consistently significant.
DISCUSSION: The findings highlight the importance of examining the completions of two AD documents and indicate the necessity of developing distinct and concrete strategies to promote the completion of PA and LW.
Certaines hospitalisations de personnes âgées sont qualifiées de « non pertinentes » parce qu’elles y reçoivent une prise en charge médicale, paramédicale et sociale qui pourrait être rendue à domicile ou dans des structures plus efficientes et mieux adaptées à leurs besoins ou à leurs situations. L’étude PAGE a pour objectif de comprendre les raisons des hospitalisations non pertinentes des personnes âgées ayant des troubles cognitifs légers à modérés et de décrire les conséquences sur la fin de leur vie. Comment penser, anticiper et adapter leurs besoins en aide et en soins relatifs à cette période de vie selon leurs souhaits ? 17 entretiens individuels semi-directifs ont été effectués auprès de personnes âgées, leur entourage personnel (n = 8) et professionnel (n = 14). Pour explorer leurs trajectoires, les entretiens ont été réalisés à leur entrée à l’hôpital puis renouvelés à chaque étape de leur parcours durant 6 mois. Les hospitalisations non pertinentes cristallisent la dénégation de la perte d’autonomie fonctionnelle. Alors que les personnes vivent des pertes, les discussions et prises de décisions pérennes quant à leur choix de fin de leur vie sont repoussées. Les hospitalisations non pertinentes surviennent lorsque ce quotidien n’est plus adapté et obligent l’entourage ou la personne âgée à prendre des décisions urgentes et contraires à leurs souhaits et besoins.
Lynch syndrome (LS) is a hereditary cancer syndrome characterized by an increased risk of multiple cancers, predominantly endometrial and colorectal, at a younger age (typically < 50). In prior research, high death anxiety and a lack of provider-initiated communication about advance care planning (ACP) have been shown to decrease a patient's likelihood of having advance directives. Providers often have gaps in knowledge and are uncomfortable with these conversations. We used a mixed methods approach (quantitative survey with a follow-up telephone interview) to assess knowledge, preferences, and attitudes regarding ACP in individuals with LS (n = 20). This study also assessed which ACP documents individuals already had in place and which persons (providers, family, or friends) an individual made aware of the documentation and/or preferences. These data were analyzed to determine patient preferences for who is responsible for initiating these conversations, identify motivating factors and barriers to these conversations, and determine whether the current conversations are adequate to meet the needs of this patient population. Participants recognized the importance of ACP and expressed interest in creating these documents. However, knowledge and confidence about these topics were lacking, with many participants attributing this to their young age and lack of experience. Although uncomfortable, many patients want to have ACP discussions with their providers, but frequently patients were only asked if these documents are completed with no further discussion. These findings can inform educational efforts to improve knowledge of ACP and interventional research to increase use of ACP by individuals with LS.
OBJECTIVE: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH).
METHODS: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial.
FINDINGS: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091.
CONCLUSION: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.
Background: Group visits have the potential to help patients identify their health care values and engage in the emotionally and cognitively challenging task of advance care planning (ACP) in a resource-efficient manner by providing a forum for social learning and social support.
Objective: To evaluate the feasibility and acceptability of disease-specific group visits for patients with heart failure and their caregivers.
Design: Feasibility trial of a 90-minute group visit held for 10 separate groups and led by a trained facilitator using the video-based PREPARE for Your Care ACP tool.
Setting:/Subjects: Older adults with recent hospitalization for heart failure (n = 36; median age, 74 years) and their caregivers (n = 21).
Measurements: Pre- and post-visit surveys and a postvisit telephone interview assessing perceived value and acceptability; structured nonparticipant observations to assess process and feasibility.
Results: Mean scores from the postgroup visit evaluation showed that participants reported that they felt comfortable discussing ACP in a group (4.59), understood the information covered (4.70), and were able to identify and clarify their health care values (4.43). Interview and observation data demonstrated that participants were able to identify and clarify their preferences by listening and learning from a diverse range of perspectives in the group and that the disease-focused nature of the group visit created a supportive space for participants to share their experiences.
Conclusions: Disease-focused ACP group visits were feasible to conduct and acceptable to participants, underscoring their value as an efficient intervention to engage patients and caregivers in the otherwise time- and resource-intensive task of ACP.
Background: In many cases, life-sustaining treatment preferences are not timely discussed with older patients. Advance care planning (ACP) offers medical professionals an opportunity to discuss patients’ preferences. We assessed how often these preferences were known when older patients were referred to the emergency department (ED) for an acute geriatric assessment.
Methods: We conducted a descriptive study on patients referred to the ED for an acute geriatric assessment in a Dutch hospital. Patients were referred by general practitioners (GPs), or in the case of nursing home residents, by elderly care physicians. The referring physician was asked if preferences regarding life-sustaining treatments were known. The primary outcome was the number of patients for whom preferences were known. Secondary outcomes included which preferences, and which variables predict known preferences.
Results: Between 2015 and 2017, 348 patients were included in our study. At least one preference regarding life-sustaining treatments was known at referral in 45.4% (158/348) cases. In these cases, cardiopulmonary resuscitation (CPR) policy was always included. Preferences regarding invasive ventilation policy and ICU admission were known in 17% (59/348) and 10.3% (36/348) of the cases respectively. Known preferences were more frequent in cases referred by the elderly care physician than the GP (P < 0.001).
Conclusions: In less than half the patients, at least one preference regarding life-sustaining treatments was known at the time of referral to the ED for an acute geriatric assessment; in most cases it concerned CPR policy. We recommend optimizing ACP conversations in a non-acute setting to provide more appropriate, desired, and personalized care to older patients referred to the ED.
Purpose: Guidelines suggest that advance care planning (ACP) and goals-of-care discussions should be conducted for patients with advanced cancer early in the course of their disease. A recent audit of our health system found that these discussions were rarely being documented in the electronic medical record (EMR). We conducted a quality improvement initiative to improve rates of documentation of goals and wishes among patients with advanced cancer.
Methods: on the basis of previous analyses of this problem, we determined that provider capability and opportunity were the main barriers to conducting and documenting serious illness conversations. We implemented the serious illness care program (SICP), a systematic multicomponent intervention that has shown potential for conducting and documenting ACP discussions in two oncology clinics. Our goal was to conduct at least 24 serious illness conversations over the implementation period, with documentation of at least 95% of all conversations.
Results: The SICP was implemented in two outpatient medical oncology clinics. A total of 15 serious illness care conversations occurred and 14 (93%) of these conversations were documented in the EMR. Total rates of documentation increased between the preimplementation and implementation period (4.2%-5.4% for clinician A and 0%-7.3% for clinician B).
Conclusion: Implementation of the SICP resulted in increased rates of documentation, but the target number of conversations was not met. Further improvement cycles are required to address barriers to conducting and documenting routine serious illness conversations.
BACKGROUND: In Mainland China, advance directives (ADs) and end-of-life care for patients with tumours, especially patients with brain tumours who may have lost consciousness or the ability to speak at the early stage of their illness, have been poorly acknowledged. Thus, this study aimed to clarify the knowledge and preferences of ADs and end-of-life care in patients with brain tumours and to investigate predictors of patient preferences.
METHODS: This was a population-based cross-sectional survey that was conducted via face-to-face interviews. Information on sociodemographic factors, brain tumour illness, knowledge and preferences of the advanced decisions and end-of-life care of the patients was collected.
RESULTS: A total of 88.61% of participants had never heard of ADs, but 65.18% reported that they would like to make ADs. Knowledge of ADs, receiving surgical treatment or radiotherapy, being younger than 70 years old, being male, having educational qualifications of college or beyond, being childless, having medical insurance for nonworking or working urban residents and self-paying medical expenses were predictors of preference for making ADs. A total of 79.43% of participants wanted to discuss end-of-life arrangements with medical staff, and 63.29% of participants were willing to receive end-of-life care, even though it would not delay death. A total of 65.82% of patients with brain tumours wanted resuscitation, and as many as 45.45% of the patients thought that they did not need life support if they were in a persistent vegetative state. Brain primary tumours, being younger than 70 years old, male sex, educational qualification of junior middle school or below, having children, having new rural cooperative medical insurance and having medical expenses paid by children or spouses were predictors of choosing appropriate palliative care.
CONCLUSIONS: ADs and end-of-life care have been poorly acknowledged among patients with brain tumours in mainland China. Additional efforts should be encouraged amongst patients with primary brain tumours, those who are undergoing surgery and radiotherapy and those who have low socioeconomic status. A longitudinal and comprehensive study is encouraged to promote disease-specific ADs among Chinese patients with brain tumours.
BACKGROUND: Patient participation is a key foundation of advance care planning (ACP). However, a patient himself/herself may be left out from sensitive conversations such as end-of-life (EOL) care discussions. The objectives of this study were to investigate patients' participation rate in the discussion of Cardiopulmonary Resuscitation (CPR) / Do-Not-Attempt-Resuscitation (DNAR) order, and in the discussion that the patient is at his/her EOL stage (EOL disclosure), and to explore their associated factors.
METHODS: This is a retrospective chart review study. The participants were all the patients who were hospitalized and died in a university-affiliated teaching hospital (tertiary medical facility) in central Tokyo, Japan during the period from April 2018 to March 2019. The following patients were excluded: (1) cardiopulmonary arrest on arrival; (2) stillbirth; (3) under 18 years old at the time of death; and (4) refusal by their bereaved family. Presence or absence of CPR/DNAR discussion and EOL disclosure, patients' involvement in those discussions, and their associated factors were investigated.
RESULTS: CPR/DNAR discussions were observed in 336 out of the 358 patients (93.9%). However, 224 of these discussions were carried out without a patient (patient participation rate 33.3%). Male gender (odds ratio (OR) = 2.37 [95% confidence interval (CI) 1.32-4.25]), living alone (OR = 2.51 [1.34-4.71]), and 1 year or more from the date of diagnosis (OR = 1.78 [1.03-3.10]) were associated with higher patient's participation in CPR/DNAR discussions. The EOL disclosure was observed in 341 out of the 358 patients (95.3%). However, 170 of the discussions were carried out without the patient (patient participation rate 50.1%). Patients who died of cancer (OR = 2.41[1.45-4.03]) and patients without mental illness (OR=2.41 [1.11-5.25]) were more likely to participate in EOL disclosure.
CONCLUSIONS: In this clinical sample, only up to half of the patients participated in CPR/DNAR discussions and EOL disclosure. Female, living with family, a shorter period from the diagnosis, non-cancer, and mental illness presence are risk factors for lack of patients' participation in CPR/DNAR or EOL discussions. Further attempts to facilitate patients' participation, based on their preference, are warranted.
Understanding the preferred place of death may assist to organize and deliver palliative health care services. The study aims to assess preference for place of death among cancer patients in receipt of home-based palliative care, and to determine the variables that affect their preference for a home death. A prospective cohort design was carried out from July 2010 to August 2012. Over the course of their palliative care trajectory, a total of 303 family caregivers of cancer patients were interviewed. Multivariate regression analysis was employed to assess the determinants of a preferred home death. The majority (65%) of patients had a preference of home death. The intensity of home-based physician visits and home-based personal support worker (PSW) care promotes a preference for a home death. Married patients, patients receiving post-graduate education and patients with higher Palliative Performance Scale (PPS) scores were more likely to have a preference of home death. Patients reduced the likelihood of preferring a home death when their family caregiver had high burden. This study suggests that the majority of cancer patients have a preference of home death. Health mangers and policy makers have the potential to develop policies that facilitate those preferences.
Place of death is an important outcome of end-of-life care. Many people do not have the opportunity to express their wishes and die in their preferred place of death. Advance care planning (ACP) involves discussion, decisions and documentation about how an individual contemplates their future death. Recording end-of-life preferences gives patients a sense of control over their future. Coordinate My Care (CMC) is London's largest electronic palliative care register designed to provide effective ACP, with information being shared with urgent care providers. The aim of this study is to explore determinants of dying in hospital. Understanding advance plans and their outcomes can help in understanding the potential effects that implementation of electronic palliative care registers can have on the end-of-life care provided. Retrospective observational cohort analysis included 21,231 individuals aged 18 or older with a Coordinate My Care plan who had died between March 2011 and July 2019 with recorded place of death. Logistic regression was used to explore demographic and end-of-life preference factors associated with hospital deaths. 22% of individuals died in hospital and 73% have achieved preferred place of death. Demographic characteristics and end-of-life preferences have impact on dying in hospital, with the latter having the strongest influence. The likelihood of in-hospital death is substantially higher in patients without documented preferred place of death (OR = 1.43, 95% CI 1.26-1.62, p<0.001), in those who prefer to die in hospital (OR = 2.30, 95% CI 1.60-3.30, p<0.001) and who prefer to be cared in hospital (OR = 2.77, 95% CI 1.94-3.96, p<0.001). "Not for resuscitation" individuals (OR = 0.43, 95% CI 0.37-0.50, p<0.001) and who preferred symptomatic treatment (OR = 0.36, 95% CI 0.33-0.40, p<0.001) had a lower likelihood of in-hospital death. Effective advance care planning is necessary for improved end-of-life outcomes and should be included in routine clinical care. Electronic palliative care registers could empower patients by embedding patients' wishes and personal circumstances in their care plans that are accessible by urgent care providers.
BACKGROUND: Following patient preferences at the end of life should improve outcomes of care, yet patient preferences regarding bladder and bowel care are not often accommodated, as they are not well known in the literature.
AIMS: This scoping review sought to identify bladder and bowel care preferences of patients at the end of life in published literature.
METHODS: Papers published in or after 1997 (in English) that focused on adult preferences for bladder and bowel care at the end of life were included.
FINDINGS: Scant literature exists on preferences for bladder and bowel care for adult patients at end of life. Further investigation is warranted to arrive at a better understanding of preferences regarding bladder and bowel symptom management.
CONCLUSIONS: Future research should explore if prioritising the symptoms caused by incontinence, among the many symptoms experienced at the end of life, could be achieved through careful questioning and development of a standardised tool focused on improving patient care and incorporating patient preferences for care.
Purpose: This study explored the consistency between preferences for end-of-life care for elderly hospitalized patients and their primary caregivers and predictors of consistency.
Patients and Methods: This cross-sectional correlational study recruited 100 dyads of elderly hospitalized patients and their primary caregivers from a medical center in Central Taiwan. A structural questionnaire about preferences for seven end-of-life medical treatment options involved cardiopulmonary resuscitation, intravenous therapy, nasogastric tube feeding, intensive care unit, blood transfusion, tracheotomy, and hemodialysis.
Results: The consistency was 42.28% for preferences of end-of-life medical care between patients and caregivers. The Kappa values for seven life-sustaining medical treatments ranged from 0.001 to 0.155. Logistic regression showed that the predictors of consistency for preferences of treatment were: a patient with a signed living will (odds ratio [OR] = 6.20, p<0.01) and a male family caregiver (OR= 0.23, p<0.01) for cardiopulmonary resuscitation; a patient who visited relatives in the intensive care unit (OR= 2.94, p< 0.05) and a spouse caregiver (OR= 3.07, p< 0.05) for nasogastric tube feeding; a spouse caregiver (OR=3.12, p<0.05) and a caregiver who visited the intensive care unit (OR= 5.50, p<0.01) for tracheotomy; and a spouse caregiver (OR= 2.76, p<0.05) and a caregiver who visited the intensive care unit (OR= 4.42, p<0.05) for hemodialysis.
Conclusion: End-of-life medical treatment preferences were inconsistent between patients and family caregivers, which might be influenced by Asian culture, the nature of the relationship and individual experiences. Implementation of advance care planning that respects the patient's autonomy and preferences about end-of-life care is recommended.
INTRODUCTION: The coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults. In the context of COVID-19, decision-making surrounding place of care and place of death in older adults involves significant new challenges.
AIMS: To explore key factors that influence place of care and place of death decisions in older adults. A secondary aim was to investigate key factors that influence the process and outcome of these decisions in older adults. To apply findings from current evidence to the context of COVID-19.
METHODS: Rapid review of reviews, undertaken using WHO guidance for rapid reviews for the production of actionable evidence. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation.
RESULTS: Ten papers were included for full data extraction. These papers were published between 2005-2020. Papers included discussed actual place of death, as well as preferred. Results were divided into papers that explored the process of decision-making, and those that explored decision-making outcomes.
CONCLUSIONS: The process and outcomes of decision-making for older people are affected by many factors-all of which have the potential to influence both patients and caregivers experience of illness and dying. Within the context of COVID-19, such decisions may have to be made rapidly and be reflexive to changing needs of systems and of families and patients.
AIM: This retrospective review examined the influence of age and severity of comorbidities on goals-of-care in advance care plans (ACPlans) and concordance between these wishes and care received during hospital admission.
METHODS: The medical records of 149 people with an ACPlan admitted to a public hospital were reviewed to evaluate concordance with treatment. The associations between age and comorbidities and goals-of-care were determined using contingency tables and logistic regression analyses.
RESULTS: The majority of the review cohort were Caucasian and elderly, with people from minority ethnic groups under-represented compared to census data. Increasing age had a measurable influence on the choice of goal-of-care, whereas comorbidity severity had less influence on this decision. In 60 of the 411 hospital admissions the patient was classified as incompetent, with the goal-of-care adhered to in 59 of these cases and treatment preferences adhered to in six of seven cases. Fifty-five people had died since writing their ACPlan, with 63% dying at their preferred place or with no preference stated.
CONCLUSIONS: Age and to a lesser extent the severity of comorbidities influence the choice of goal-of-care in an ACPlan. Our review also showed that end-of-life care appeared to adhere to the instructions in the plan.
BACKGROUND: The unprecedented scale of contemporary migration across countries over the last decade means that ageing and dying occur in a more globalised, multicultural context. It is therefore essential to explore the end-of-life experiences of older people from migrant backgrounds.
METHODS: A scoping review of peer-reviewed articles published in English from 2008 to 2018. Included studies addressed end-of-life preferences, attitudes, values and beliefs of first-generation international migrants who were at least 50 years of age.
RESULTS: Fifteen studies met the inclusion criteria for this review, which addressed six key themes: (1) the reluctance among older migrants and their families to talk about death and dying; (2) difficult communication in patient-clinician relationships; (3) the contrast between collectivistic and individualistic norms and its associated end-of-life preferences; (4) limited health literacy in older adults from migrant backgrounds; (5) experiences with systemic barriers like time pressure, inflexibility of service provision and lack of cultural sensitivity and (6) the need for care providers to appreciate migrants' 'double home experience' and what this means for end-of-life decision-making regarding place of care and place of death.
DISCUSSION: To respond effectively to an increasingly culturally diverse population, healthcare staff, researchers and policymakers need to invest in the provision of culturally sensitive end-of-life care. Areas for improvement include: (a) increased awareness of cultural needs and the role of family members; (b) cultural training for healthcare staff; (c) access to interpreters and translated information and (d) involvement of older migrants in end-of-life discussions, research and policymaking.
Background: End-of-life treatment decisions present special challenges for prehospital emergency providers. Paramedics regularly make value-laden choices that transcend technical judgment and professional skill, affecting the type of care, how and to whom it is provided. Changes in prehospital emergency care over the last decade have created new moral challenges for prehospital emergency providers; these changes have also accentuated the need for paramedics to make rapid and reasoned ethical judgments. Objective: The purpose of the study was to explore the decision-making process that occurs when prehospital emergency teams respond to an end-of-life call with a focus on how state authorized documents such as a Non-Hospital Do Not Resuscitate (NHDNR) or Medical/Physician's Orders for Life-Sustaining Treatment (MOLST/POLST) or lack thereof inform decision-making. This paper presents the specific circumstances that informed the need for intervention from Online Medical Direction (OLMD) framed in the perspectives and words of the prehospital providers seeking that assistance.
Methods: This study involved in-depth in-person interviews with 50 providers to elicit participants' experiences in their own words using a semi-structured interview instrument. Interviews were audio recorded and transcribed with permission.
Results: Five themes emerged that illuminated how and when OLMD was involved in emergency end-of-life decisions: Termination of Resuscitation (TOR); Family Revoked DNR; Missing Documents; No Documents and No CPR; and Unusual Situations. Participants illustrated how the decision to terminate efforts was best-supported when it was made by collaboration between the on-scene provider and OLMD. Participants described ethical dilemmas when families asked them to initiate CPR in the presence of DNR orders and cognitive dissonance when CPR has been initiated but a valid DNR/MOLST is subsequently located.
Conclusions: The study findings demonstrate the invaluable contribution of OLMD for complex end-of-life care decisions by prehospital providers, especially when there are difficult legal, ethical, and logistical questions. OLMD provides far more than technical support.