Background: the World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is known about physician knowledge and perspectives on palliative care.
Methods: The Assessing Doctors' Attitudes on Palliative Treatment survey was developed as an evidence-based and culturally relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. The statistical analysis was complemented by a qualitative analysis of open-ended responses.
Results: This study received 424 responses from 11 countries in Eurasia. The mean alignment between provider perspectives and WHO recommendations was 70% (range, 7%-100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-o-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident about delivering at least 1 component of palliative care.
Conclusions: This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions, which must be tailored to the local political, economic, and cultural context.
BACKGROUND: Ethnicity may be associated with important aspects of end-of-life care, such as what treatments are received, access to palliative care and where people die. However, most studies have focused on end-of-life care of white, Hispanic and black patients. We sought to compare end-of-life care delivered to people of Chinese and South Asian ethnicity with that delivered to others from the general population, in Ontario, Canada.
METHODS: In this population-based cohort study, we included all people who died in Ontario, Canada, between Apr. 1, 2004, and Mar. 31, 2015. People were identified as having Chinese or South Asian ethnicity on the basis of a validated surname algorithm. We used modified Poisson regression analyses to assess location of death and care received in the last 6 months of life.
RESULTS: We analyzed 967 339 decedents, including 18 959 (2.0%) of Chinese and 11 406 (1.2%) of South Asian ethnicity. Chinese (13.6%) and South Asian (18.5%) decedents were more likely than decedents from the general population (10.1%) to die in the intensive care unit (ICU). The adjusted relative risk of dying in intensive care was 1.21 (95% confidence interval [CI] 1.15 to 1.27) for Chinese and 1.25 (95% CI 1.20 to 1.30) for South Asian decedents. In their last 6 months of life, decedents of Chinese and South Asian ethnicity experienced significantly more ICU admission, hospital admission, mechanical ventilation, dialysis, percutaneous feeding tube placement, tracheostomy and cardiopulmonary resuscitation than the general population.
INTERPRETATION: Decedents of Chinese and South Asian ethnicity in Ontario were more likely than decedents from the general population to receive aggressive care and to die in an ICU. These findings may be due to communication difficulties between patients and clinicians, differences in preferences about end-of-life care or differences in access to palliative care services.
People with mental illness may be unable to provide critical input about the care they wish to receive during a psychiatric crisis because of altered mental states. It is therefore imperative that clinicians seek to understand service users' wishes for care while they are well and able to provide meaningful input into the discussion. Achieving such an end may be done by discussing and completing a psychiatric advance directive. However, very few Asian countries have legislation that supports such advance directives. The present article seeks to give physicians more information about advance psychiatric directives and the potential role they could play to improve the healthcare provided in Asia to people at risk of losing capacity due to a mental illness. The degree to which mental health legislation supports psychiatric advance directives is documented for each country of South East Asia and Eastern Asia.
Context: Programs identifying patients needing palliative care and promoting advance care planning (ACP) are rare in Asia.
Objectives: This interventional cohort study aimed to identify hospitalized patients with palliative care needs using a validated Palliative Care Screening Tool (PCST), examine the ability of the PCST to predict mortality, and explore effects of a pragmatic ACP program targeted by PCST on the utilisation of life-sustaining treatment during the last three months of life.
Methods: In this prospective study, we used PCST to evaluate patients’ palliative care needs between 2015 and 2016 and followed patients for 3 months. ACP with advance directives (AD) were systematically offered to all patients with PCST score =4.
Results: Of 47,153 hospitalized patients, 10.4% had PCST score =4. During follow-up, 2,121 individuals died within three months of palliative care screening: 1,225 (25.0%) with PCST score =4 and 896 (2.1%) with PCST score <4. After controlling for co-variates, PCST score =4 was significantly associated with a higher mortality within 3 months of screening (adjusted odds ratio [AOR], 6.86; 95% confident interval [CI], 6.16-7.63). Moreover, ACP consultation (AOR=0.78, 95%CI: (0.66-0.92) and AD completion (AOR=0.49, 95%CI: 0.36-0.65) were associated with a lower likelihood of receiving life-sustaining treatments during the last 3 months of life.
Conclusions: We demonstrated the feasibility of implementing a comprehensive palliative care program to identify patients with palliative care needs and promote ACP and AD in East Asia. ACP consultation and AD completion were associated with reduced utilization of life-sustaining treatments during the last 3 months of life.
Death, disease and disaster can inflict anyone, anywhere and at any time. While occurrence of such an event could be absolved of any selective strike, the outcome reflects otherwise. Historical deprivations experienced by certain populations have caused more bereavement and sorrow to them than those who have experienced lesser or no deprivation. Therefore, the process which shapes the factors to yield such a result is important and needs to be understood for any policy suggestions and programmatic inputs. Loss of pregnancy and newborn inflicts sorrow and bereavement across space, time and social labyrinth. The degree of bereavement is likely to reduce with time, but space and social context govern the response to it. Therefore, factors contributing to the differentials vary in their demographic, social and economic characteristics. The loss of pregnancy and newborn remains inadequately addressed. Family and community play a significant role in coping. While the developed countries have institutional structure to address coping with the loss, the South Asian countries rely heavily on the family and the community for such support. The present review examines these trajectories across social groups.
OBJECTIVE: South Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers.
METHODS: A systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data.
RESULTS: A total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families.
SIGNIFICANCE OF RESULTS : Involvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.
Background: Persons of South Asian origin (SAs) are the fastest growing minority group in the United States. Culturally competent care for patients and families of SA origin necessitates an understanding of the cultural factors that affect decision-making for palliative and end-of-life care.
Objective: To better understand health-care providers' perspectives on decision-making among seriously ill persons of SA origin.
Method: Data were collected in a US Midwestern city, predominantly in 2 hospital-based health-care systems along with a few interviews of private practitioners. Researchers conducted a thematic analysis of data. Transcripts were coded individually, coding disagreements resolved through discussion and themes arrived upon by consensus.
Results: Health-care providers reported that numerous factors interact to influence decision-making among SAs. Patient-based factors include education, time spent in the United States, expectations of physician-directed care, and spiritual beliefs. Family-based factors include a norm of family-based decision-making and a complex distribution of decision-making responsibilities among family members. Provider-based factors include challenges reconciling SA and American approaches to decision-making. Community-based factors include negative attitudes and a lack of education regarding palliative care and the potential role of community support in health-care decision-making.
Conclusions: A rich cultural context influences health-care decision-making among seriously ill SAs. An understanding of this context will enhance providers' cultural competence and likely improve services to this growing population.
BACKGROUND: End-of-life (EOL) care in neonatal intensive care units (NICUs) can vary depending on religious beliefs of health care providers and families as well as the sociocultural environment. Although guidelines exist for EOL care in NICUs, most are based on Western studies, and little is known about such care in Asian countries, which have different religious and social background.
OBJECTIVE: This review synthesized empirical research to reveal the state of the science on infant EOL care in Asian countries.
DESIGN: This was an integrative review.
SETTING/SUBJECTS: Data were collected from studies identified in CINAHL, Embase, PsycINFO, and PubMed. The search was limited to current empirical studies involving infant EOL care in Asian countries and published in English between 2007 and 2016.
RESULTS: Of 286 studies initially identified, 11 empirical studies conducted in Hong Kong, India, Israel, Japan, Mongolia, Taiwan, and Turkey were included in the review. Four themes were captured: factors influencing decision making, trends in decision making, practical aspects of EOL care, and health care providers' preparation. In most NICUs, health care providers controlled decisions regarding use of life-sustaining treatment, with parents participating in decision making no more than 60% of the time. Although care decisions were gradually changing from "do everything" for patient survival to a more palliative approach, comfort care at the EOL was chosen no more than 63% of the time.
CONCLUSION: While infant EOL care practice and research vary by country, few articles address these matters in Asia. This integrative review characterizes infant EOL care in Asia and explores cultural influences on such care.
BACKGROUND: The state of palliative care research is closely linked to the development of palliative care services in a country or region.
OBJECTIVE: To systematically review the current state of palliative care research in the Asia Pacific region and analyze its relationship with the performance of each country in the region on the Economist Intelligence Unit's 2015 Quality of Death Index.
DESIGN: Systematic review and bibliographic analysis in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocol 2015 (PRISMA-P).
DATA SOURCES: The PubMed/MEDLINE, EMBASE, SCOPUS, CINAHL, and PsychiNFO databases were searched on February 4, 2018.
RESULTS: One thousand six hundred sixty-seven articles were reviewed. Eighteen out of 32 countries in the region published research. Around 74.15% (1236) of the articles were produced by high-income countries. Research output (articles per 1 m population) was closely linked to country performance on the Economist Intelligence Unit's 2015 Quality of Death Index (adjusted R2= 0.85). Palliative care research in the region is overwhelmingly focused on cancer (80.13% of articles reviewed). The most common themes of research were “palliative care service (24.45%)” and “clinical” (15.38%).
CONCLUSIONS: Palliative care research in the region is growing but remains largely centered on the high-income countries, with many low- and middle-income countries having little published research output. Much work is required to drive research in these countries to generate the evidence required for the development of palliative care services. The emphasis on cancer in research also indicates that the needs of patients suffering from noncancer-related diseases may be neglected.
Objective: Our aims were to report an analysis of the concept of cultural competency and to explore how the cultural competency of the palliative care workforce impacts the holistic care of young people with palliative care needs from South Asian cultures.
METHOD: Using keywords, we searched the online databases MEDLINE, CINAHL, ScienceDirect, and PubMed from January of 1990 through to December of 2016. Some 1543 articles were retrieved, and inclusion and exclusion criteria were applied. A total of 38 papers were included in the concept analysis. The data were analyzed using Coad's (2002) adapted framework based on Rodgers's (1989) evolutionary concept analysis, focusing on the attributes, antecedents, consequences, and related terms in relation to culturally competent care. A model case of culturally competent care was also constructed.
RESULTS: The literature provides evidence that the concept of culturally competent care is a complex one, which is often expressed ambiguously. In addition, there is a paucity of research that involves service users as experts in defining their own needs and assessing their experiences related to cultural care.
SIGNIFICANCE OF RESULTS: Cultural care should be integral to holistic patient care, irrespective of a person's race or ethnicity. There is an urgent need to involve young BAME patients with palliative care needs and their families in the development of a robust tool to assess cultural competency in clinical practice.
Advance care directives situate persons as rational and self-determining actors who can make anticipatory plans about their futures. This paper critically examines how people interpret individual and future-oriented approaches to medical decision-making with limited access to information and knowledge, and reduced opportunities to prepare and document their care preferences. Based on ethnographic research with Asian migrant families living in Adelaide, South Australia (August 2015-July 2018), it reveals a discord between planning for a finite future and the contingencies and continuities of social life. It unsettles the detached reasoning that is privileged in end-of-life decision-making and reveals limitations to "do-it-yourself" approaches to advance care directives which, it will be argued, not only forecasts potential futures but also forecloses them. Taking Derrida's critique of death and decision-making as a point of departure, it develops the concept of temporal dissonance as a theoretical framework to articulate the tensions that are constituted in advance care directives. The paper suggests that attention to temporal incongruities may help to shed light on the many complex interpretations of advance care directives and the difficulties of promoting them in diverse contexts.
There is a woeful lack of access to pain relief and palliative care in many low- and middle-income countries (LMIC) across the world. Measured in terms of distribution of opioids, out of the 298.5 metric tonnes of morphine-equivalent distributed in the world (average distribution in 2010-2013), only 0.1 metric tonne is distributed to low-income countries. According to the Lancet Commission report on access to palliative care and pain relief, the
annual distribution of morphine-equivalent opioids in Haiti is 5 mg per patient in need of palliative care. This contrasts with 55,000 mg per patient in need of palliative care in the United States and over 68,000 mg per patient in need of palliative care in Canada, countries that are presently facing an opioid crisis because of inappropriate prescribing and use of opioids.
BACKGROUND: Advance care planning (ACP) is a process of reflection on and communication of a person's future health-care preferences. Evidence suggests visible minorities engage less in ACP. The South Asian ethnic group is the largest visible minority group in Canada, and information is needed to understand how ACP is perceived and how best to approach ACP within this diverse community.
OBJECTIVE: To explore perspectives of South Asian community members towards ACP.
DESIGN: Peer-to-peer inquiry. South Asian community members who graduated from the Patient and Community Engagement Research programme (PaCER) at the University of Calgary utilized the PaCER method (SET, COLLECT and REFLECT) to conduct a focus group, family interviews and a community forum.
SETTING AND PARTICIPANTS: Fifty-seven community-dwelling men and women (22-86 years) who self-identified with the South Asian community in Calgary, Alberta, Canada.
RESULTS: The concept of ACP was mostly foreign to this community and was often associated with other end-of-life issues such as organ donation and estate planning. Cultural aspects (e.g. trust in shared family decision making and taboos related to discussing death), religious beliefs (e.g. fatalism) and immigration challenges (e.g. essential priorities) emerged as barriers to participation in ACP. However, participants were eager to learn about ACP and recommended several engagement strategies (e.g. disseminate information through religious institutions and community centres, include families in ACP discussions, encourage family physicians to initiate discussions and translate materials).
CONCLUSIONS: Use of a patient engagement research model proved highly successful in understanding South Asian community members' participation in ACP.
BACKGROUND: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear.
OBJECTIVE: To determine medications available and used in the management of six symptoms at the end of life among pediatric palliative care practitioners in Asia Pacific. To identify alternative pharmacological strategies for these six symptoms if the oral route was no longer possible and injections are refused.
DESIGN AND SETTING: An online survey of all Asia Pacific Hospice Palliative Care Network (APHN) members was carried out to identify medications used for six symptoms (pain, dyspnea, excessive respiratory secretions, nausea/vomiting, restlessness, seizures) in dying children. Two scenarios were of interest: (1) hours to days before death and (2) when injectables were declined or refused.
RESULTS: There were 54 responses from 18 countries. Majority (63.0%) of respondents were hospital based. About half of all respondents were from specialist palliative care services and 55.6% were from high-income countries. All respondents had access to essential analgesics. Several perceived that there were no available drugs locally to treat the five other commonly encountered symptoms. There was a wide variation in preferred drugs for treating each symptom that went beyond differences in drug availability or formulations.
CONCLUSION: Future studies are needed to explore barriers to medication access and possible knowledge gaps among service providers in the region, so that advocacy and education endeavors by the APHN may be optimized.
Most of the world's population lives in Asia. Prevention and detection of cancer, as well as ensuring equitable access to cancer care for all Asians remains a major public health issue and requires governmental involvement and dedicated resources. Palliative care, a medical and nursing specialty, promotes holistic attention to suffering and provides compassionate and interdisciplinary care to the most vulnerable in all societies-those with serious illness. It is nurses who provide the majority of care for patients with cancer, as no other healthcare professional spends more time at the bedside or out in the community assessing and managing these patients and their families. The purpose of this article is to showcase nursing leaders throughout Asia who are receiving palliative care education, educating their colleagues in this care, improving clinical practice, participating in the development of healthcare policies, and advocating for this care.
BACKGROUND: The lack of a holistic approach to palliative care can lead to a fractured sense of dignity at the end of life, resulting in depression, hopelessness, feelings of being a burden to others, and the loss of the will to live among terminally ill patients. Building on the clinical foundation of Dignity Therapy, together with the empirical understanding of dignity-related concerns of Asian families facing terminal illness, a novel Family Dignity Intervention (FDI) has been developed for Asian palliative care. FDI comprises a recorded interview with a patient and their primary family caregiver, which is transcribed, edited into a legacy document, and returned to the dyads for sharing with the rest of the patient's family. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of FDI in reducing psychosocial, emotional, spiritual, and psychophysiological distress in community-dwelling and in-patient, Asian, older terminally ill patients and their families living in Singapore.
METHODS/DESIGN: An open-label randomized controlled trial. One hundred and twenty-six patient-family dyads are randomly allocated to one of two groups: (1) an intervention group (FDI offered in addition to standard psychological care) and (2) a control group (standard psychological care). Both quantitative and qualitative outcomes are assessed in face-to-face interviews at baseline, 3 days and 2 weeks after intervention, as well as during an exit interview with family caregivers at 2 months post bereavement. Primary outcome measures include sense of dignity for patients and psychological distress for caregivers. Secondary outcomes include meaning in life, quality of life, spirituality, hopefulness, perceived support, and psychophysiological wellbeing, as well as bereavement outcomes for caregivers. Qualitative data are analyzed using the Framework method.
DISCUSSION: To date, there is no available palliative care intervention for dignity enhancement in Asia. This first-of-its-kind study develops and tests an evidence-based, family driven, psycho-socio-spiritual intervention for enhancing dignity and wellbeing among Asian patients and families facing mortality. It addresses a critical gap in the provision of holistic palliative care. The expected outcomes will contribute to advancements in both theories and practices of palliative care for Singapore and its neighboring regions while serving to inform similar developments in other Asian communities.
AIM: To investigate older British South Asians' views on dying at acute hospitals.
BACKGROUND: Older people, including those from ethnic minorities prefer 'home as a haven' for their last days of life; however, they are more likely to die in hospital.
METHODS: Constructive grounded theory was used as a methodological approach that informed data collection to data analysis. Open meetings with 11 local South Asian community organisations enabled the researchers to recruit a total of 55 older South Asians in this study. Data were collected using gender-based focus groups (n=5) and in-depth, semi-structured interviews (n=29). Transcripts were analysed using Nvivo 9.
RESULTS: Three key themes were identified: 'mistrust', 'let him not be alone' and 'family as a protective shield'. The theme 'mistrust' is explored through examination of beliefs, attitudes and expectations about 'hospital' as a place in the care of the dying. The theme of 'let him not be alone' draws the family's preferences and concerns in relation to leaving their older dying relative alone in the hospital. The final theme of 'family as a protective shield' describes the element of family care as a protective shield for their older one to have peaceful end-of-life care moments in the hospital.
CONCLUSIONS: Allowing older relatives to die in hospital seems to evoke feelings of missed filial responsibilities and guilt among family carers among older ethnic minorities. The presence of cultural paranoia and mistrust often led minorities to experience sub-standard end-of-life care in acute hospitals.
Background and Objectives: Coping with predeath grief (PDG) is an unmet need in caregivers of persons with dementia (PWD). The Marwit-Meuser Caregiver Grief Inventory (MM-CGI) and its abbreviated MM-CGI-Short-Form (MM-CGI-SF) are among the few empirically developed scales that detect PDG, yet they have not been substantially validated outside United States. We evaluated the reliability and validity of the PDG scales in a multiethnic Asian population distinct from that of United States.
Research Design and Methods: Family caregivers of community-dwelling PWD (n = 300) completed self-administered questionnaires containing MM-CGI and other scales of related construct. Sixty percent of the participants repeated the questionnaires 1 week later for test-retest reliability. Internal-consistency reliability was assessed by Cronbach’s a, test-retest reliability by intraclass-correlation-coefficient, construct validity by Spearman’s correlation-coefficient, and factorial validity by confirmatory factor analysis (CFA). Cohen’s was used to compare the agreement between MM-CGI and a commonly-used caregiver burden scale (Zarit Burden Interview).
Results: MM-CGI and MM-CGI-SF demonstrated internal-consistency reliability, test-retest reliability, construct validity, and known-group validity. In CFA, MM-CGI showed modest model-fit (comparative-fit-index, CFI = .80; Tucker-Lewis-index, TLI = .79), whereas MM-CGI-SF showed better model-fit (CFI = .91; TLI = .90). Eighty-six percent of the caregivers reported average or high levels of PDG, with 18% reporting high PDG. High scores in the caregiver burden scale only showed modest agreement with high scores in MM-CGI ( = .47).
Ce document réunit les contributions au 11ème colloque de la Maison Archéologie & Ethnologie, René-Ginouvès, qui s'est tenu du 18 au 20 juin 2014 à l'université Paris Ouest Nanterre La Défense, autour de la question du funéraire. Trois parties composent ce document :
- place des morts et incertitudes morales
- régimes de visibilité de la sépulture
- traitement funéraire et circulation des morts.