RESUMO
Indonesia is a low-middle income country in Southeast Asia, as well as the world's fourth most populous and largest archipelagic nation. Indonesia has approximately 1,300 ethnic groups that speak 800 different languages and are typically collectivist and religiously devout. With an aging population and an increasing number of cancer patients, palliative care in the country remains scarcely available, disproportionally distributed, and underfunded. All of these factors (economic level, geographical and cultural landscapes, and palliative care level of development) pose a considerable impact on the adoption of advance care planning in Indonesia. Nonetheless, recent advocacy initiatives promise some hopes in advance care planning in Indonesia. Furthermore, local studies suggested opportunities to implement advance care planning, particularly through capacity building and a culturally sensitive approach to it. This article describes the present situation of advance care planning in Indonesia, including its challenges and opportunities.
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Planejamento Antecipado de Cuidados , Humanos , Idoso , Indonésia , Alemanha , Sudeste Asiático , Países em Desenvolvimento , Serviços de Planejamento FamiliarRESUMO
BACKGROUND: Acculturation is the process of two different cultures coming into contact. It is unclear how acculturation influences Chinese immigrants' engagement in advance care planning due to the complexity and multifaceted nature of both acculturation and advance care planning. AIMS: To synthesize evidence regarding the role of Chinese immigrants' acculturation in their engagement in advance care planning. DESIGN: Systematic mixed-method review, registered in PROSPERO (CRD42021231822). DATA SOURCES: EMBASE, MEDLINE, Web of Science, and Google Scholar were searched for publications until January 21, 2021. RESULTS: Twenty-one out of 1112 identified articles were included in the analysis. Of those 21 articles, 17 had a qualitative design and 13 originated from the United States. Three of four quantitative studies reported that higher acculturation levels were associated with better knowledge or higher rate of engagement in advance care planning. Analysis of qualitative studies showed that Chinese immigrants' engagement in advance care planning was associated with their: (1) self-perceived cultural identity (native or non-native); (2) interpretation of filial piety (traditional or modern); and (3) interpretation of autonomy (individual or familial). To facilitate their engagement, Chinese immigrants prefer an implicit approach, non-family-related initiators, contextualization advance care planning in Chinese culture and using Chinese language. CONCLUSION: Chinese immigrants' willingness to engage in advance care planning varied with their acculturation level. To engage them in advance care planning, we recommend adapting the introduction of advance care planning to address people's perceptions of their cultural identity, filial piety, and autonomy, as well as their preference for certain approach, initiator, context, and language.
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Aculturação , Planejamento Antecipado de Cuidados , Emigrantes e Imigrantes , Humanos , População do Leste Asiático , IdiomaRESUMO
PURPOSE: To understand the experiences and preferences of Indonesian cancer survivors regarding medical information disclosure and advance care planning. METHODS: On the basis of systematic reviews of the scientific literature, qualitative studies, and expert-panel input, we developed an online survey that was distributed to nine cancer survivor support groups in Indonesia. RESULTS: A total of 1,030 valid responses were received. Most participants were younger than 60 years (92%), female (91%), married (78%), Muslim (75%), diagnosed with breast cancer (68%), highly educated (64%), and more than one year beyond diagnosis of their cancer. If diagnosed with a life-limiting illness, participants wished to be informed about their diagnosis (74%), disease severity (61%), estimated curability (81%), expected disease trajectory (66%), and estimated life expectancy (37%). Between 46%-69% of the participants wished to discuss four topics of advance care planning (end-of-life treatments, resuscitation, health care proxies, and what matters at the end of life); 21%-42% had done so. Of those who wished to discuss these topics, 36%-79% preferred to do so with their family members. The most important reasons for not being willing to engage in advance care planning were the desire to surrender to God's will and to focus on here and now. CONCLUSION: In a group of cancer survivors, most of them were highly educated, young, female, and diagnosed with breast cancer. Their preferences for medical information and advance care planning varied, with the majority wishing for information and involvement in advance care planning. Culturally sensitive advance care planning involves health care professionals eliciting individuals' preferences for medical information disclosure and discussing different topics in advance care planning conversations.
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Planejamento Antecipado de Cuidados , Neoplasias da Mama , Sobreviventes de Câncer , Humanos , Feminino , Indonésia , Revelação , Revisões Sistemáticas como Assunto , Neoplasias da Mama/terapiaRESUMO
BACKGROUND: Individuals' willingness to engage in advance care planning is influenced by factors such as culture and religious beliefs. While most studies on advance care planning in Asia have been performed in high-income countries, Indonesia is a lower-middle-income country, with a majority of strongly collectivist and religiously devout inhabitants. We studied the perspectives of Indonesian patients with cancer and family caregivers regarding advance care planning by first exploring their experiences with medical information-disclosure, decision-making, and advance care planning and how these experiences influence their perspectives on advance care planning. METHODS: We conducted semi-structured interviews among 16 patients with cancer and 15 family caregivers in a national cancer center in Jakarta and a tertiary academic general hospital in Yogyakarta. We performed an inductive thematic analysis using open, axial, and selective coding. The rigor of the study was enhanced by reflective journaling, dual coding, and investigator triangulation. RESULTS: Twenty-six of 31 participants were younger than 60 years old, 20 were Muslim and Javanese, and 17 were college or university graduates. Four major themes emerged as important in advance care planning: (1) participants' perceptions on the importance or harmfulness of cancer-related information, (2) the importance of communicating bad news sensitively (through empathetic, implicit, and mediated communication), (3) participants' motives for participating in medical decision-making (decision-making seen as patients' right or responsibility, or patients' state of dependency on others), and (4) the complexities of future planning (e.g., due to its irrelevance to participants' religious beliefs and/or their difficulties in seeing the relevance of future planning). CONCLUSIONS: Culturally sensitive approaches to advance care planning in Indonesia should address the importance of facilitating open communication between patients and their families, and the various perspectives on information provision, bad news communication, and decision-making. Advance care planning should focus on the exploration of patients' values, rather than drafting treatment plans in advance.
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Planejamento Antecipado de Cuidados , Neoplasias , Humanos , Pessoa de Meia-Idade , Cuidadores , Indonésia , Pesquisa Qualitativa , Neoplasias/terapiaRESUMO
BACKGROUND: Most studies on advance care planning in Asia originate in high-income Asian countries. Indonesia is a middle-income Asian country characterized by its religious devoutness and strong family ties. This study aims to explore the perspectives and experiences of Indonesian healthcare professionals on advance care planning for cancer patients. METHODS: Focus-group discussions were conducted in July and August 2019 and were analysed using thematic content analysis enhanced by dual coding and exploration of divergent views. Purposive sampling of physicians and nurses actively engaged in cancer care in a national cancer centre and a national general hospital. RESULTS: We included 16 physicians and 16 nurses. These participants were open to the idea of advance care planning. We further identified four aspects of this planning that the participants considered to be important: 1) the family's role in medical decision-making; 2) sensitivity to communication norms; 3) patients' and families' religious beliefs regarding the control and sanctity of life; and 4) the availability of a support system for advance care planning (healthcare professionals' education and training, public education, resource allocation, and formal regulation). Participants believed that, although family hierarchical structure and certain religious beliefs may complicate patients' engagement in advance care planning, a considerate approach to involving family and patients' religious perspectives in advance care planning may actually facilitate their engagement in it. CONCLUSION: Indonesian healthcare professionals believed that, for culturally congruent advance care planning in Indonesia, it was essential to respect the cultural aspects of collectivism, communication norms, and patients' religious beliefs.
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Planejamento Antecipado de Cuidados , Neoplasias , Tomada de Decisões , Grupos Focais , Humanos , Indonésia , Neoplasias/terapia , Pesquisa Qualitativa , ReligiãoRESUMO
BACKGROUND: Asian healthcare professionals hold that patients' families play an essential role in advance care planning. AIM: To systematically synthesize evidence regarding Asian patients' perspectives on advance care planning and their underlying motives. DESIGN: Mixed-method systematic review and the development of a conceptual framework (PROSPERO: CRD42018099980). DATA SOURCES: EMBASE, MEDLINE, Web of Science, and Google Scholar were searched for studies published until July 27, 2020. We included studies concerning seriously-ill Asian patients' perspectives on advance care planning or their underlying motives for engaging or not engaging in it. RESULTS: Thirty-six articles were included; 22 were quantitative and 27 were from high-income countries. Thirty-nine to ninety percent of Asian patients were willing to engage in advance care planning. Our framework highlighted that this willingness was influenced not only by their knowledge of their disease and of advance care planning, but also by their beliefs regarding: (1) its consequences; (2) whether its concept was in accordance with their faith and their families' or physicians' wishes; and (3) the presence of its barriers. Essential considerations of patients' engagement were their preferences: (1) for being actively engaged or, alternatively, for delegating autonomy to others; (2) the timing, and (3) whether or not the conversations would be documented. CONCLUSION: The essential first step to engaging patients in advance care planning is to educate them on it and on their diseases. Asian patients' various beliefs about advance care planning should be accommodated, especially their preferences regarding their role in it, its timing, and its documentation.
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Planejamento Antecipado de Cuidados , Povo Asiático , Comunicação , Pessoal de Saúde , Humanos , Participação do PacienteRESUMO
OBJECTIVE: The value of advance care planning (ACP) for patients with life-limiting illnesses is widely recognized but Asian health care professionals' (HCPs') perspectives on ACP have received little systematic attention. We aim to synthesize evidence regarding Asian HCPs' knowledge of, attitudes toward, and experiences with ACP. DESIGN: Systematic review with narrative synthesis and stepwise thematic analysis. SETTING AND PARTICIPANTS: HCPs in southern, eastern, and southeastern Asia. METHODS: Studies from inception to September 2019 were identified from English-language searches of Embase, MEDLINE, Web of Science, and Google Scholar with reference-chaining and hand-searching. Two investigators independently screened and assessed the risk of bias in all original studies reporting HCPs' knowledge of, attitudes toward, and experiences with ACP, including their perspectives toward barriers and facilitators of ACP. RESULTS: Fifty-one studies were included; 42 were quantitative, 43 had been conducted in high-income countries, and 36 were of good quality. Twenty-six studies operationalized ACP as the completion of an advance directive rather than a value-exploration process. Thirteen studies reported knowledge, 44 attitudes, 29 experiences, and 36 barriers and facilitators of ACP. Asian HCPs addressed the essential role of families in ACP. They acknowledge the importance of ACP but rarely engage the patient in it. They considered ACP difficult to initiate, partly because of their lack of knowledge and skills in ACP, personal uneasiness to conduct ACP, fear of conflicts with family members and their legal consequences, and the lack of a standard system for ACP. Most studies indicated HCPs' low engagement and late initiation of ACP. CONCLUSIONS AND IMPLICATIONS: Despite acknowledging its importance, Asian HCPs felt that engaging in ACP is challenging. Capacity building for ACP in Asia should focus on culturally adapting ACP models concerning the essential role of the family in Asia, education for HCPs and the public, and providing institutional support for ACP.
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Planejamento Antecipado de Cuidados , Conhecimentos, Atitudes e Prática em Saúde , Diretivas Antecipadas , Ásia , Pessoal de Saúde , HumanosRESUMO
Ageing has been recognized as one of the most critically important health-care issues worldwide. It is relevant to Asia, where the increasing number of older populations has drawn attention to the paramount need for health-care investment, particularly in end-of-life care. The advocacy of advance care planning is a mean to honor patient autonomy. Since most East Asian countries are influenced by Confucianism and the concept of 'filial piety,' patient autonomy is consequently subordinate to family values and physician authority. The dominance from family members and physicians during a patient's end-of-life decision-making is recognized as a cultural feature in Asia. Physicians often disclose the patient's poor prognosis and corresponding treatment options to the male, family member rather to the patient him/herself. In order to address this ethical and practical dilemma, the concept of 'relational autonomy' and the collectivism paradigm might be ideally used to assist Asian people, especially older adults, to share their preferences on future care and decision-making on certain clinical situations with their families and important others. In this review article, we invited experts in end-of-life care from Hong Kong, Indonesia, Japan, South Korea, Singapore and Taiwan to briefly report the current status of advance care planning in each country from policy, legal and clinical perspectives. According to the Asian experiences, we have seen different models of advance care planning implementation. The Asian Delphi Taskforce for advance care planning is currently undertaken by six Asian countries and a more detailed, culturally sensitive whitepaper will be published in the near future.
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Planejamento Antecipado de Cuidados/normas , Assistência Terminal/normas , Idoso , Envelhecimento , Povo Asiático , Feminino , Humanos , MasculinoRESUMO
Adult onset Still's disease is a rare systemic disease that may involve many organs and may mimick many disease such as infection, autoimmune disease, and also malignancy. The diagnostic approach and treatment strategies have not been well established due to its rarity; however, there are some diagnostic criteria that may help. We present a case of 36-year old man who experienced high prolonged fever which firstly thought as infection. He also had unilateral wrist and knee joint pain and maculopapular rash. Laboratory examination showed high leukocytes count with elevated polymorphonuclear neutrophil count, high platelet count, high ferritin level, and negative results of many infection markers (typhoid antibody, procalcitonin, malaria test, blood culture, urine culture, IgM pneumonia, ASTO, syphilis test, antiHIV, HBsAg, antiHCV, etc). Chest X-ray, joint X-ray, ultrasonography, and echocardiography showed normal result. The patient was then diagnosed with Adult-onset Still's disease and received intravenous methylprednisolone and the fever was disappeared in 3 days. Six months later the arthralgia appeared again, methotrexate was administered and the pain was then relieved.
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Febre/etiologia , Doença de Still de Início Tardio/complicações , Doença de Still de Início Tardio/diagnóstico , Administração Intravenosa , Adulto , Diagnóstico Diferencial , Humanos , Masculino , Metilprednisolona/administração & dosagem , Radiografia , Doença de Still de Início Tardio/tratamento farmacológicoRESUMO
PURPOSE OF REVIEW: To summarize the current status of palliative care and the role of psychosomatic medicine in Indonesia. RECENT FINDINGS: Palliative care is not a new issue in Indonesia, which has been improving palliative care since 1992 and developed a palliative care policy in 2007 that was launched by the Indonesian Ministry of Health. However, the progress has been slow and varied across the country. Currently, palliative care services are only available in a few major cities, where most of the facilities for cancer treatment are located. Psychosomatic medical doctors have advantages that contribute to palliative care because of their special training in communication skills to deal with patients from the standpoints of both mind and body. SUMMARY: Palliative care services in Indonesia are established in some hospitals. Future work is needed to build capacity, advocate to stakeholders, create care models that provide services in the community, and to increase the palliative care workforce. Psychosomatic medicine plays an important role in palliative care services.
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Pulmonary papillomatosis is an extremely rare variant of recurrent respiratory papillomatosis which is hard to treat, causes prolonged morbidity, and may transform into malignant disorder in several cases. Since the symptoms and radiologic findings are not specific, pulmonary papillomatosis is often being misdiagnosed. Although considered benign, pulmonary papillomatosis carries the most significant mortality. This is a case report of a 26 year old man who complained recurrent chronic cough, slight hemoptoe, occasional pleuritic pain, and several episodes of fever. He also had laryngeal papillomatosis and undergone serial endoscopic resection since his childhood. Multiple nodular and cavitary lesions, some with air fluid level, were found in both lung fields at chest radiography and scintigraphy. Diagnosis of pulmonary papillomatosis complicated with secondary infection was made after endoscopic and histologic study.