Chinese medical teachers' cultural attitudes influence palliative care education: a qualitative study.

BACKGROUND: China holds one fifth of the world's population and faces a rapidly aging society. In its ambition to reach a health care standard comparable to developed countries by 2030, the implementation of palliative care gains special importance. Until now, palliative care education in China is limited and disparate. This study aims to explore and determine factors that have impeded the development and implementation of palliative care education in China. METHODS: We conducted semi-structured interviews with n=28 medical teachers from seven Chinese universities. Interviews were transcribed, and thematic analysis applied. RESULTS: Three themes with two subthemes were constructed from data analysis. Theme 1 covers the still ambivalent perception of palliative care and palliative care education among participants. The second theme is about cultural attitudes around death and communication. The third theme reflects participants' pragmatic general understanding of teaching. All themes incorporate obstacles to further implementation of palliative care and palliative care education in China. CONCLUSIONS: According to the study participants, palliative care implementation through palliative care education in China is hindered by cultural views of medical teachers, their perception of palliative care and palliative care education, and their understanding of teaching. The study demonstrates that current attitudes may work as an obstacle to the implementation of palliative care within the health care system. Approaches to changing medical teachers' views on palliative care and palliative care education and their cultural attitudes towards death and dying are crucial to further promote the implementation of palliative care in China.

Palliative and end-of-life care in Egypt: overview and recommendations for improvement.

BACKGROUND: The literature on the situation of palliative and end-of-life care in the Arab and Islamic world, including Egypt, is limited and does not present a clear picture of the cultural context. This report aims to portray the palliative and end-of-life care situation in Egypt, focusing on the nursing viewpoint. First, we describe health- and illness-related cultural, religious, and ethical issues. Second, we present an overview of the healthcare and nursing system in Egypt. Third, we discuss the situation of palliative and end-of-life care, highlighting the shortcomings of existing literature. Finally, we delineate country-specific recommendations to improve the palliative and end-of-life care situation at the level of policy, education, and research. Countries with similar healthcare, cultural, legal, religious, economic, or ethical contexts may benefit from the recommendations made in this study.

Breast cancer stigma among Indonesian women: a case study of breast cancer patients.

BACKGROUND: The stigma experienced by cancer patients stems from the association of cancer with death, as cancer is the most feared disease worldwide, especially among cancer patients and their families. The stigma regarding breast cancer screening behaviour has not been critically evaluated and is poorly understood; therefore, we aimed to analyse the stigmatization of breast cancer patients in Indonesia to reduce the morbidity and mortality of breast cancer. METHODS: A qualitative study using a focus group discussion (FGD) and in-depth interviews with thematic analysis was conducted. RESULTS: One informant experienced breast pain and kept the referral letter, in which the medical doctor advised medical treatment, to herself for 3 months due to her embarrassment. A traditional healing practice known as 'kerokan', which involves scraping of the skin, and consumption of a traditional drink were used by most informants to decrease their breast pain. Finally, most informants were diagnosed with an advanced stage of cancer when they returned to the health care facility. In addition, financial difficulties were noted as barriers to breast cancer screening in Indonesia. CONCLUSIONS: Feelings of fear and shame when diagnosed with breast cancer were reported by the informants in this study. Alternative treatment known as 'kerokan' was the first treatment sought for breast cancer symptoms due to financial difficulties among breast cancer patients. Informants were diagnosed with an advanced stage of cancer after they returned to the health care facility. A better understanding of early breast cancer symptoms could motivate women to seek out breast cancer treatment.

Dealing With Death Taboo: Discussion of Do-Not-Resuscitate Directives With Chinese Patients With Noncancer Life-Limiting Illnesses.

BACKGROUND: Noncancer patients with life-limiting diseases often receive more intensive level of care in their final days of life, with more cardiopulmonary resuscitation performed and less do-not-resuscitate (DNR) orders in place. Nevertheless, death is still often a taboo across Chinese culture, and ethnic disparities could negatively affect DNR directives completion rates. OBJECTIVES: We aim to explore whether Chinese noncancer patients are willing to sign their own DNR directives in a palliative specialist clinic, under a multidisciplinary team approach. DESIGN: Retrospective chart review of all noncancer patients with life-limiting diseases referred to palliative specialist clinic at a tertiary hospital in Hong Kong over a 4-year period. RESULTS: Over the study period, a total of 566 noncancer patients were seen, 119 of them completed their own DNR directives. Patients had a mean age of 74.9. Top 3 diagnoses were chronic renal failure (37%), congestive heart failure (16%), and motor neuron disease (11%). Forty-two percent of patients signed their DNR directives at first clinic attendance. Most Chinese patients (76.5%) invited family caregivers at DNR decision-making, especially for female gender (84.4% vs 69.1%; P = .047) and older (age >75) age group (86.2% vs 66.7%; P = .012). Of the 40 deceased patients, median time from signed directives to death was 5 months. Vast majority (95%) had their DNR directives being honored. CONCLUSION: Health-care workers should be sensitive toward the cultural influence during advance care planning. Role of family for ethnic Chinese remains crucial and professionals should respect this family oriented decision-making.

Exploring family, community and healthcare provider perceptions and acceptability for minimal invasive tissue sampling to identify the cause of death in under-five deaths and stillbirths in North India: a qualitative study protocol.

BACKGROUND: Around 5.4 million under-five deaths occur globally annually. Over 2.5 million neonatal deaths and an equivalent stillbirths also occur annually worldwide. India is largest contributor to these under-five deaths and stillbirths. To meet the National Health Policy goals aligned with sustainable development targets, adoption of specific strategy and interventions based on exact causes of death and stillbirths are essential. The current cause of death (CoD) labelling process is verbal autopsy based and subject to related limitations. In view of rare diagnostic autopsies, the minimally invasive tissue sampling (MITS) has emerged as a suitable alternate with comparable efficiency to determine CoD. But there is no experience on perception and acceptance for MITS in north Indian context. This formative research is exploring the perceptions and view of families, communities and healthcare providers regarding MITS to determine the acceptability and feasibility. METHODS: The cross-sectional study adopts exploratory qualitative research design. The study will be conducted in New Delhi linked to deaths and stillbirths occurring at a tertiary care hospital. The data from multiple stakeholders will be collected through 53-60 key-informant in-depth interviews (IDIs), 8 focus group discussions (FGDs) and 8-10 death or stillbirth event observations. The IDIs will be done with the parents, family members, community representatives, religious priests, burial site representatives and different health care providers. The FGDs will be conducted with the fathers, mothers, and elderly family members in the community. The data collection will focus on death, post-death rituals, religious practices, willingness to know CoD, acceptability of MITS and decision making dynamics. Data will be analysed following free listing, open coding, selective coding and theme identification. Subsequently 8-10 parents will be approached for consent to conduct MITS using the communication package to be developed using the findings. DISCUSSION: The study will provide in-depth understanding of the cultural, social, religious practices related to child death and stillbirth and factors that potentially determine acceptance of MITS. The findings will guide development of communication and counselling package and strategies for obtaining consent for MITS. The pilot experience on obtaining consent for MITS will inform suitable refinement and future practice.

A Voice Needs to be Heard: The Meaning of "Going Home".

BACKGROUND:: This case report addresses a client from a minority cultural background in Australia and her complex cultural needs at the end of life. CASE HISTORY:: A 66-year-old Japanese female client diagnosed with renal cancer, and lung and spine metastasis shared her story. Since a left nephrectomy in 2007, she has had hemodialysis 3 days a week. She left Japan more than 30 years ago and moved to Australia 20 years ago. With the 6-month prognosis, she expressed her desire to "go home." The meaning of "going home" was explored with the author who shares the same cultural background and language and is a palliative care nurse. The meanings for wanting to go home were her nostalgia for the traditional food, language, land, and death rituals. DISCUSSION:: The client identified her preferred place to die and discussed her death wishes. Open, honest communication with health professionals about her condition and prognosis facilitated meaningful discussions. CONCLUSION:: The narrative demonstrates the complex issues and needs of clients from minority cultural backgrounds and the importance of understanding the real cultural meaning behind their stories. Exploring the meaning with compassionate curiosity as well as interpretation support was the key.

Impact of Immigrant Status on Aggressive Medical Care Counter to Patients' Values Near Death among Advanced Cancer Patients.

BACKGROUND: Little is known about disparities in end-of-life (EoL) care between U.S. immigrants and nonimmigrants. OBJECTIVE: To determine immigrant/nonimmigrant advanced cancer patient differences in receipt of values-inconsistent aggressive medical care near the EoL. DESIGN: Analysis of data from Coping with Cancer, a federally funded, prospective, multi-institutional cohort study of advanced cancer patients with limited life expectancies recruited from 2002 to 2008. SETTING/SUBJECTS: U.S. academic medical center and community-based clinics. Self-reported immigrant (n = 41) and nonimmigrant (n = 261) advanced cancer patients with poor prognoses who died within the study observation period. MEASUREMENTS: The primary independent/predictor variable was patient immigrant status. Primary outcome variables: (1) aggressive medical care near death, operationalized as the use of mechanical ventilation, resuscitation, feeding tube, and/or antibiotics in the last week of life and (2) receipt of values inconsistent aggressive care, operationalized as receiving aggressive care inconsistent with stated preferences for comfort-focused EoL care. RESULTS: In a propensity-weighted sample (N = 302), in which immigrant and nonimmigrant groups were weighted to be demographically similar, immigrants were significantly more likely than nonimmigrants to receive aggressive medical care [OR 1.9; 95% CI (1.0-3.6); p = 0.042] and values-inconsistent aggressive medical care [OR 2.1; 95% CI (1.1-4.2); p = 0.032] near death. CONCLUSIONS: Immigrant, as compared with nonimmigrant, advanced cancer patients are not only more likely to receive aggressive EoL care, but also more likely to receive care counter to their wishes. These findings indicate potential disparities in, rather than differences in preference for, aggressive care and a need for further investigation into potential causes of these disparities.

Death Acceptance in Vietnamese Cancer Patients: A Phenomenological Study.

INTRODUCTION: To date, death acceptance is not well investigated in the Vietnamese population. Cultural influences may affect death acceptance. The purpose of this phenomenological study is to describe Vietnamese cancer patients' lived experience with death acceptance. METHOD: Eleven Vietnamese patients with various cancer diagnoses participated in the study. Data were analyzed using the Giorgian method of data analysis. RESULTS: Themes of death acceptance found were (1) accepting destiny, (2) knowing and sacrificing the self, (3) believing in living persons and handing over responsibilities, (4) accepting death while continuing to fight for life, and (5) looking for a "role model death." DISCUSSION: Death acceptance is a contextually bound concept, which needs further investigation. To help patients with their death acceptance, nurses should include spiritual support and the involvement of loved ones in patients' care plans.

Comparative study among Spanish students of health sciences degrees: Facing death.

The purpose of this study was to explore the perceptions and attitudes of students of health sciences faculties (medicine, nursing, and physiotherapy) regarding specific issues related to death and end of life in both professional and personal realms. A descriptive, cross-sectional, and multi-center approach was used. The modified Bugen Scale for facing death was used. The study population (411 students) encompassed three distinct groups: students from the degrees of medicine, nursing, and physiotherapy. In total, 12 items showed significant differences between the three groups. The sample presented a moderate level of perceived competency in the ability to face death. We found significant differences in the scores obtained by the three groups regarding their ability to face the death of people who are emotionally close. Furthermore, the sample demonstrated a good level of self-efficacy when facing death, with nursing students displaying the greatest emotional involvement when compared to their colleagues studying medicine and physiotherapy. It is therefore recommended that study curricula of future health professionals contain specific training in end-of-life care.

Making sense of loss through spirituality: Perspectives of African American family members who have experienced the death of a close family member to cancer.

OBJECTIVE: Among African Americans, spirituality is meaning or purpose in life and a faith in God who is in control of health and there to provide support and guidance in illness situations. Using qualitative methods, we explored the use of spirituality to make sense of the end-of-life and bereavement experiences among family members of a deceased cancer patient. METHOD: Data in this report come from 19 African Americans who experienced the loss of a family member to cancer. A qualitative descriptive design was used with criterion sampling, open-ended semistructured interviews, and qualitative content analysis. RESULTS: Participants made sense of the death of their loved one using the following five themes: Ready for life after death; I was there; I live to honor their memory; God's wisdom is infinite; and God prepares you and brings you through. These five themes are grounded in conceptualizations of spirituality as connectedness to God, self, and others.Significance of resultsOur findings support the results that even during bereavement, spirituality is important in the lives of African Americans. African American family members might struggle with issues related to life after death, their ability to be physically present during end-of-life care, and disentangling beliefs around God's control over the beginning and ending of life. The findings in this report can be used to inform healthcare providers to better support and address the needs for support of African American family members during end-of-life and bereavement experiences.

Acculturation and Perceptions of a Good Death Among Japanese Americans and Japanese Living in the U.S.

CONTEXT: Acculturation is the phenomenon of the attitudinal changes of individuals who come into continuous contact with another culture. Despite the long history of Japanese immigration to America, little is known about the impact of acculturation on perceptions of a good death. OBJECTIVES: To examine differences in perceptions of a good cancer death among Japanese Americans (JA/A), Japanese living in America (J/A), and the Japanese living in Japan (J/J). METHODS: We administered surveys among JA/A and J/A and used historical J/J data for reference. Primary endpoint was the proportion of respondents who expressed the necessity of core and optional items of the Good Death Inventory. Group differences ≥20% were deemed clinically important. RESULTS: In total, 441 survey responses in America and 2548 in Japan were obtained. More than 80% of respondents consistently considered nine of 10 core items necessary without significant group differences. No core item reached a ≥20% group difference. Three of the eight optional items reached ≥20% group difference: fighting against disease until one's last moment (49%, P < 0.0001; 52%, P < 0.0001; and 73% in JA/A, J/A, and J/J, respectively), knowing what to expect about one's condition in the future (83%, P < 0.0001; 80%, P < 0.0001; and 58%, respectively), and having faith (64%, P = 0.0548; 43%, P = 0.0127; and 38%, respectively). CONCLUSION: Although most core items of a good death were preserved throughout the levels of acculturation, perceptions of some optional items shifted away from Japanese attitudes as individuals became more acculturated. Understanding of different levels of acculturation may help clinicians provide culturally sensitive end-of-life care.

Factors Associated With Opinions About Hospice Among Older Adults: Race, Familiarity With Hospice, and Attitudes Matter.

Attitudes and opinions about end-of-life care among older adults are understudied. Using survey data from the American Association of Retired Persons (AARP) membership in Florida (N = 2714), this study identified predictors of opinions about hospice (OAH) among older adults. Relationships between race/ethnicity and attitudes were also examined. Results showed race of the respondent was the strongest predictor of one's OAH. Predictors of positive opinions of hospice included being of Caucasian race, non-Hispanic ethnicity, better health, greater familiarity with hospice, a high importance of pain control, the importance of fulfilling personal goals, a desire to have health-care professionals involved in one's care, and having engaged in advance care planning. These findings suggest a need for greater attention to culture-based elements in future research and practice.

Understanding patients' experiences of the wish to hasten death: an updated and expanded systematic review and meta-ethnography.

OBJECTIVES: Patients with advanced disease sometimes express a wish to hasten death (WTHD). In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon. Since then, new studies eligible for inclusion have been reported, including in Europe, a region not previously featured, and specifically in countries with different legal frameworks for euthanasia and assisted suicide. The aim of the present study was to update our previous review by including new research and to conduct a new analysis of available data on this topic. SETTING: Eligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA. PARTICIPANTS: Studies of patients with life-threatening conditions that had expressed the WTHD. DESIGN: The search strategy combined subject terms with free-text searching of PubMed MEDLINE, Web of Science, CINAHL and PsycInfo. The qualitative synthesis followed the methodology described by Noblit and Hare, using the 'adding to and revising the original' model for updating a meta-ethnography, proposed by France et al. Quality assessment was done using the Critical Appraisal Skills Programme checklist. RESULTS: 14 studies involving 255 participants with life-threatening illnesses were identified. Five themes emerged from the analysis: suffering (overarching theme), reasons for and meanings and functions of the WTHD and the experience of a timeline towards dying and death. In the context of advanced disease, the WTHD emerges as a reaction to physical, psychological, social and existential suffering, all of which impacts on the patient's sense of self, of dignity and meaning in life. CONCLUSIONS: The WTHD can hold different meanings for each individual-serving functions other than to communicate a genuine wish to die. Understanding the reasons for, and meanings and functions of, the WTHD is crucial for drawing up and implementing care plans to meet the needs of individual patients.

Surviving the Loss of a Child: A Mexican-American's Story.

This paper tells the story of a mother's loss of her 10-year-old daughter from cancer. It is in part a pain and suffering narrative and a story of remarkable post-loss growth and transformation. It is a story told for busy parents and multitasking nurses, to all of us who need to relearn how to be attentive to others, particularly our children. The woman who tells the story is one of the authors (M.V.-W.); she is a Mexican-American. The paper is based on two interviews of M.V.-W., using questions similar to those used by one of the authors (S.L.B.) with his study of fathers and sibling. Following the interviews is a brief discussion on the loss of a child from a humanbecoming perspective, with a few comments on the immigration of nurses.

Attitudes of Older Chinese Patients Toward Death and Dying.

BACKGROUND: Due to the aging population of China, the need for palliative care will increase. However, one of the barriers to utilization of palliative care is the traditional belief that talking about death and dying is taboo. OBJECTIVE: The aim of this study was to examine to what extent older Chinese patients were willing to answer questions about death and dying by asking them about "fear of death" and their desire to "use advanced life support when dying." DESIGN: Survey questionnaire. SETTING/SUBJECTS: Convenience sample (N = 993 hospitalized patients). RESULTS: Only 215 (21.7%; 95% confidence interval [CI] 16.2%-27.1%) and 99 (9.9%; 95% CI 4.1%-15.8%) patients did not answer the questions related to "fear of death" and "use of advanced life support when dying," respectively, while 439 (44.2%; 95% CI 38.7%-49.7%) answered "yes" and 339 (34.1%; 95% CI 28.7%-39.6%) answered "no" for "fear of death" and 382 (38.5%; 95% CI 32.6%-44.3%) answered "yes" and 512 (51.6%; 95% CI 45.7%-57.4%) answered "no" for "use of advanced life support when dying." In multinomial logistic regression analysis, fear of death was associated with younger age, lowest level of function, and desire to use advanced life support. CONCLUSIONS: The majority of older patients were willing to answer the two questions about death and dying. About one-third of patients were not afraid of death, and older patients were less likely to be afraid of death. More than 50% of patients answered that they would not choose advanced life support when dying. More research in this area is needed to help advance palliative care in China.

Providing Appropriate End-of-Life Care to Religious and Ethnic Minorities.

There is overwhelming evidence that racial and ethnic minorities face multiple health care disparities. Recognizing and addressing cultural and religious/spiritual (RS) values is a critical aspect of providing goal-concordant care for patients facing a serious illness, especially at the end of life. Failure to address a patient's cultural and RS needs can lead to diminished quality of care and worse health outcomes. Given the multitude of cultural and RS values, we believe that a framework of cultural and RS curiosity along with a willingness to engage patients in discussions about these elements of their care within an interdisciplinary team should be the goal of all providers who are discussing goals, preferences, and values with patients facing advanced terminal illness.

[Dying and death in societal transformation]. / Sterben und Tod im gesellschaftlichen Wandel.

Dying and death in modern societies are subject to profound social, professional and cultural-religious changes. Secularization and a stronger differentiation of societies have led to a change in the way humans handle the dying process. Normatively ritualized collective behaviour has been replaced by an individual, subjectivized approach. In late modern societies there are many different views of what "successful" or "good" dying means.In the article this change is described by the following seven theses: 1. We live longer and we die longer. 2. We no longer die suddenly and unexpectedly but slowly and foreseeably. 3. Even though our biological life on earth has become longer, our life has been shortened by the loss of eternity. 4. We no longer die on the stage of ritualized relationships with our family and neighbours but behind the curtains of organizations. 5. We live and die in a society of organizations and have to get organized for the final phase of our life. 6. Living and dying are no large, state-owned enterprises but small, private enterprises. 7. The hospice movement as well as palliative medicine have created public awareness, made dying a matter of discussion and offered a new set of options.In late modernism end-of-life care requires new approaches based on individual and shared responsibility as well as cooperation between professional institutions and community-based voluntary care.A change towards community care is visible. Thus "dying" is a topic in the discussion about the future of public health and societal solidarity.

Messages of Hope: Helping Family Members to Overcome Fears and Fatalistic Attitudes Toward Cancer.

This qualitative study explored strategies family members of African-American cancer patients used to overcome their fears and fatalistic attitudes toward cancer. Twenty-four family members were recruited through criterion purposeful sampling. Data were collected and analyzed using open-ended interviews and thematic analysis. Fears and fatalistic attitudes could be traced to personal experiences with cancer and information being communicated within their networks. Strategies used to overcome fears and fatalistic attitudes toward cancer included an awareness of advances in cancer treatments, information obtained from their health-care providers, and faith in God. Family members supported the patient through efforts of encouraging them to talk about what they were going through, to be strong, to maintain a positive environment and normalcy, and to use spirituality as a source of strength. Family members also suggested that health-care providers and researchers tailor intervention studies to consider that the patient is a part of a larger family system and that the entire family needs support to overcome long-held fears and fatalistic attitudes toward cancer. These findings suggest that despite advances in cancer care and widespread media coverage to change perceptions about cancer, fears and fatalistic attitudes toward cancer persist and likely influence the family members' ability to optimally support the cancer patient. At the time of diagnosis, both patient and the entire family unit should be educated of advances in cancer care, that cancer is no longer a death sentence, and supported to overcome fears and fatalistic attitudes.

Native American Death Taboo: Implications for Health Care Providers.

This study was conducted to highlight Native American (NA) perspectives on death taboo in order to examine the cultural appropriateness of hospice services for NA patients, if any. Searching literature that addressed taboo and death from historical, psychological, sociological, and anthropological aspects, a comparison of death perspectives was made between NAs and European Americans. A culturally sensitive transition from palliative care to hospice care was suggested for NA patients and their family.