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End-of-Life Care Discussions with Doctors: Evidence from the United States and ChinaLou, Yifan January 2023 (has links)
Chapter 1 presents the backgrounds and research questions of the dissertation project. Although everyone hopes to die with dignity, a “good death” is often privileged. Inequality in end-of-life care in the United States is striking; older minorities are 3 times more likely to receive intrusive care and experience hospital readmission and less likely to use hospice care and die at home. With the hope to address disparities in end-of-life outcomes, as part of the Affordable Care Act, Medicare expanded its benefit and started to reimburse end-of-life care planning services from 2016. This dissertation examines the roles of health insurance policy and its advocated intervention in ensuring person-centered dying experiences in the United States and the public readiness for establishing a similar end-of-life care policy in China.
The second chapter examines whether physician–patient advance care planning (ACP) discussions, the “intervention” embedded in the policy, is effective at prompting end-of-life care planning behaviors and improving end-of-life experiences. I also studied the heterogenous effects by race and ethnicity. I used exit data about 7,282 deceased Medicare-eligible respondents from the Health and Retirement Study (HRS) from 2012 to 2020, a nationally representative biennial survey of U.S. older adults. I conducted latent class analysis to identify different end-of-life experiences and used multinomial logistic regression models to study the relationship between having ACP discussions with doctors and different end-of-life experiences in full and stratified samples by race and ethnicity. Then I used path analyses to test whether completing legal documentation initiated by ACP services explains the effectiveness of the intervention. The results show three types of end-of-life experiences among White, Black, and Hispanic older adults; significant effects of end-of-life care discussions with doctors on uncomfortable dying experiences and extensive use of invasive treatments in the older White population; and the partial mediating role of completion of legal health care documents on the relationship between ACP discussions and end-of-life outcomes. This study identified the limited effectiveness of physician–patient ACP discussions among minority older adults and emphasizes the importance of quality, content (e.g., to cover legal documentation during the conversation), and cultural appropriateness of ACP consultations led by doctors.
The third chapter examines the heterogenous intent-to-treat effect of the Medicare policy on older adults’ motivation to plan for care by exploiting policy intervention as a natural experiment. Taking advantage of the longitudinal nature of the HRS, I used core data with 47,982 observations nested in 15,647 individuals across 9 years (2012–2020). I used two quasi-experimental models—interrupted time series analysis and difference-in-difference—to study the care-planning outcomes before and after the policy implementation between older adults eligible or not eligible for Medicare. I studied the heterogenous effects in stratified samples by race and ethnicity, immigration background, and socioeconomic status proxied by education and wealth. I used coarsened exact matching to address the potential bias of the comparison group not being the ideal counterfactual control unit. I found that in the total population, the Medicare policy was associated with a significant increase in the proportion of older adults who completed a living will and designated a durable power of attorney for health care, but not having an ACP conversation. Furthermore, although there were immediate positive policy effects, the increases in ACP outcomes driven by the ACA Medicare benefit expansion were not sustained. Finally, I found no evidence that the ACA Medicare benefit expansion was effective in improving the rates of ACP among Black, Hispanic, Asian, Native American, or non-U.S.-born older adults. I also identified heterogeneous policy effects by socioeconomic status. I discuss promising recommendations for health care policy and practice to improve the participation rate of end-of-life care planning.
Chapter 4 explores the feasibility of encouraging physicians to discuss end-of-life care wishes with older patients in China. Knowledge of a medical diagnosis is critical for end-of-life decision making. However, a patient’s right to know their diagnosis is neither guaranteed nor protected by law in China. Doctors typically inform family members of the patient’s illness diagnosis and prognosis and let them decide whether to disclose this information to the patient. This study examined middle-aged and older Chinese adults’ preferences for disclosing their and significant others’ diagnoses and whether sociodemographic, economic, and cultural factors were associated with these preferences. The research team surveyed 571 adults aged 50 or older in Shanghai from 2021 to 2022. The outcome measures are preferences for diagnosis disclosures, including whether and to whom diagnoses should be disclosed. I characterized preference types using latent class analysis and estimated multinomial logistic regression to identify the covariates associated with each preference type. Three latent classes were identified. The transparent group (34%) believed patients, whether self or a significant other, should be informed of their diagnoses. The contradictory group (50%) held conflicting attitudes; they preferred to know their diagnosis but preferred that significant others not be informed of their diagnoses. The avoidant group (16%) preferred not to know their diagnosis or to disclose significant others’ diagnoses to them. Familism attitudes were positively associated with holding contradictory views. Experiences with hospitalization and medical decision-making for family members were associated with holding transparent views. I discuss the importance of illness disclosure for honoring patients’ autonomous decision-making.
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Microbial hazards associated with food preparation in Central South African HIV/Aids hospicesNkhebenyane, Jane Sebolelo January 2010 (has links)
Thesis (M. Tech.) -- Central University of Technology, Free State, 2010 / South Africa currently faces one of the highest HIV prevalence rates in the world. As this prevalence rises, the strain placed on its hospitals is likely to increase due to the shortage of beds. The devastating effects of HIV/AIDS initiated the establishment of a hospice which is a non-governmental organisation whose goal is the provision of care for terminally ill patients, either in their homes, in hospitals or in a hospice’s own in-patients wards. Part of the hospice’s mission is to offer palliative care without charge to anyone who requires it. The basic elements of hospice care include pain and symptom management, provision of support to the bereaving family and promoting a peaceful and dignified death. This also includes the provision of cooked foods to the patients using the kitchen facilities of the hospices for this activity. It is well known that the kitchen is particularly important in the spread of infectious disease in the domestic environment due to many activities that occur in this particular setting.
Food and water safety is especially important to the persons infected with the human immunodeficiency virus (HIV) or with immunodeficiency syndrome (AIDS).It is estimated that food-borne pathogens (disease–causing agents) are responsible for 76 million illnesses, some resulting in death, in the United States alone every year. In one study of patients with AIDS, two-thirds had diarrhoeal disease and in two-thirds of these, the following enteric pathogens were identified: Salmonella, Shigella, Listeria, Yersnia, Cryptosporidium, Entamoeba histolylica and Campylobacter sp. In an epidemiological study of patients with HIV infection a close association was found between consumption of raw or partially cooked fish and antimicrobial-resistant Mycobacterium avium complex. Antibiotic resistance in food-borne pathogens has become a reality and this poses a serious threat to the medical fraternity since it diminishes the effectiveness of treatment. This study was undertaken to determine the prevalence of foodborne pathogens including bio aerosols isolated from the kitchen surfaces and food handler’s before and after cooking. The antibiotic resistance of the isolated pathogens was further determined to assess their impact on treatment.
The following microbiota were isolated: Total viable counts (TVC), Coliforms, Escherichia coli, Staphylococcus aureus, Pseudomonas and presumptive Salmonella. The hospices had high counts of E.coli and S.aureus on the cutting boards for the breakfast session compared to the traditional home based kitchens. It was speculated that this could have originated from crosscontamination via the foodhandler’s hands and the food served. It is evident from the results that hospices lack a management system regarding the prevalence of E. coli as it was present on the cutting boards throughout the food preparation sessions. Gram negative organisms (coliform and P. aeruginosa) were in particular both resistant to oxacillin and this pose a great challenge in this particular setting. This can be addressed by putting emphasis on hygiene as a strategy per se for reducing antibiotic resistance.
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Relacionamentos entre pais e profissionais da saúde no final de vida da criança com câncer hospitalizada: encontros que sobrevivem ao tempo / Relationships between parents and healthcare providers in child\'s end-of-life care in an oncology hospital: encounters that survive through timesSantos, Maiara Rodrigues dos 29 November 2016 (has links)
Introdução: O relacionamento estabelecido entre profissionais de saúde, criança e família durante os cuidados de final de vida é complexo e multidimensional. Poucas evidências mostram como os relacionamentos são estabelecidos no contexto de final de vida da criança e influenciam no luto após a morte de um filho. Objetivo: Interpretar a experiência de pais sobre os relacionamentos estabelecidos com os profissionais de saúde durante o final de vida da criança com câncer no hospital. Método: Trata-se de uma pesquisa qualitativa, guiada pela hermenêutica filosófica de Gadamer. A coleta dos dados foi realizada por meio de observações de campo em um hospital oncológico pediátrico com famílias de crianças hospitalizadas em situação de final de vida, entrevista com pais enlutados pelo menos 6 meses após o óbito da criança e análise de prontuários. Para a análise dos dados, o processo de transcrição, leitura e releitura dos dados, revisão das notas de campo e reflexão sobre os dados com outros pesquisadores ajudaram na compreensão do fenômeno para a geração de interpretações. Para tanto, foram identificadas unidades de significados nos dados que, posteriormente, foram agrupadas por similaridade para a formação indutiva de temas. Resultados: Os relacionamentos entre pais e profissionais da saúde no final de vida da criança com câncer hospitalizada desvelam fenômenos do encontro e da interação interpessoal presentes na situação de doença, morte e perda. Esses relacionamentos são permeados pela presença de valores humanos e são estabelecidos de forma dinamica com vínculos diversos. Existem componentes evidentes no relacionamento durante o final de vida da criança no hospital, tal como o amparo, o silêncio, a deterioração, a tolerância, a hierarquia, o compartilhamento e a confiança, bem como, fatores internos e externos que influenciam nas interações. Por meio dos relacionamentos, os pais reavaliam o próprio papel, enquanto vivenciavam a experiência inesperada de perder um filho e significados atribuídos à doença e à perda são associados aos encontros mesmo anos após a morte do filho. Considerações finais: Os relacionamentos servem de base para fortalecer e suportar os pais a exercerem o papel de cuidadores para garantir a excelência no cuidado do filho. A qualidade dos relacionamentos entre pais e profissionais da saúde torna-se uma lembrança marcante no processo de luto e estabelecem uma conexão permanente com o filho falecido. Um olhar para o relacionamento entre familiares e profissionais integrando a ciência do cuidado proporciona a base de paradigmas não positivistas, que são urgentes nas situações de final de vida. Este estudo pode contribuir com as políticas de enfermagem na consolidação de futuras diretrizes sobre a qualidade na prática do cuidado de final de vida da criança, facilitando para as famílias manter vínculos significativos durante o processo de doença, perda e luto. / Introduction: The relationship established between family and healthcare providers during the childs end-of-life care is complex and multidimensional. There are few evidences which explore how these relationships during the childs last hospitalization influence familial adaptation after loss. Objective: To interpret parents experience in their relationship with healthcare providers during the childs end-of-life with cancer in the hospital. Methods: This is a qualitative research, guided by Gadamers philosophical hermeneutics. Data collection was through field observations conducted in a pediatric oncology hospital with hospitalized families in end-of-life situation, interviews with bereaved parents at least 6 month after the childs death and medical records analysis. For the data analysis, the process of transcription, reading and re-reading the data, reviewing field notes and reflection on the data with other researchers helped understand the phenomenon to generate interpretations. Therefore, units of meaning emerged from the data were grouped, and themes were inductively determined and submitted to an interpretation process. Results: Relationships between parents and healthcare providers during a childs end-of-life process unveil the encounters and interpersonal interactions phenomena in illness and loss trajectory. These relationships are permeated with human values and are established in a dynamic way with various bondings. There are evident components in a child´s end-of-life context, such as presence, silence, deteriorations, tolerance, hierarchy, collaboration and trusting, as well as internal and external factors which influence the interactions. Through relationships, parents reevaluate their own role, while they live the unexpected experience of losing a child and attribute meanings to the loss. Final considerations: Relationships serve as a basis for strengthening and supporting parents in providing excellence in the child\'s care. The quality of the relationship between parents and healthcare providers is a remarkable memory of the child\'s life during the bereavement process. Looking into the relationship between parents and providers integrating it with caring science provides a basis for non-positivist paradigms which are urgent in end-of-life situations. This study aims to contribute to end-of-life nursing policies in recognizing the components to improve the quality of the relationships as a starting point for care which will allow families to have a safe base while experiencing the child\'s illness and the bereavement process.
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Potřebnost hospicové péče na území obce s rozšířenou působností Jindřichův Hradec / The need for hospice care in Jindřichův Hradec, the municipality with extended competenceKUČEROVÁ, Michaela January 2016 (has links)
An essential part of high-level medicine of every state is hospice-based and palliative care. Throughout the world and throughout western Europe there is a fully established network of mobile and residential hospices. Meanwhile, the Czech Republic is in the early stages, making efforts to improve the situation and to firmly embed hospice care into its social and health service provision. The year 2016 is one of great expectations. Firstly there is an ongoing pilot programme of grants supporting mobile palliative care, which will compare the "cost of dying" at home with the cost spent by institutions. Secondly, a decision by the Ministry of Work and Social Services is expected with respect to proposed changed in law no. 108/2006 of the Collection of Laws on social services. If passed, this would mean a hospice would turn into an official social and health institution, thereby markedly improving the problem of financing the care provided within one, as it is a combination of social and health services. The aim of this thesis is to provide a more integrated briefing of current information related to the given issues. Therefore the theoretical part covers not only hospice and palliative care itself, but space is given to other issues such as cancer, population ageing with its impal on the economy and to new forms of care for senior citizens, dying and death. Furthermore the thesis deals with the question of financing hospice care, with particular emphasis on community planning. Lastly the theoretical part of the thesis covers the characteristics of Jindřichův Hradec, the municipality with extended competence and a description of the need for hospice care from the perspectives of both the Town Jindřichův Hradec and the Southern Bohemian region. The Hospital Jindřichův Hradec, plc and the Town itself are aware of the need for palliative care in the given region. Both organizations have therefore already undertaken important steps, based on which the Southern Bohemian region has included support for hospice and palliative care into planning and health development for the coming years. The aim of the thesis is to map out the situation concerning the provision of hospice care in the area of Jindřichův Hradec, the municipality with extended competence and to establish the requirements for this care by considering the interest of the citizens from the given area. The experimental part of the thesis uses two approaches to establish the need for hospice care. Firstly, this was content analysis of data materials provided by social and health service providers, and secondlya qualitative investigation using interviews with eight respondents of a panel on community planning of social services in the area of Jindřichův Hradec, the municipality with extended competence. Included are also statistical data from the Hospital Jindřichův Hradec plc, with emphasis on oncology patients, because these form the major group receiving palliative care. The result of the research is not surprising. The population is ageing demographically, cancer-related illnesses are the nightmare of our time and the social and health care in Czech Republic must adapt to this fact. The research confirmed that hospice care in Jindřichův Hradec, the municipality with extended competence is needed, that the families of patients are requesting it and that services currently offered are deficient. It became evident that the overwhelming support is for the development of a residential hospice or for establishment of palliative beds in the hospital. In Southern Bohemia there is only one residential hospice in Prachatice, which is little used due to the long distance and thus the families have no opportunity for respite care, which the carers are also interested in. The research confirmed, that the creation of a residential form of hospice type in the area of Jindřichův Hradec, the municipality with extended competence is supported by general practitioners, specialist doctors
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Povědomí studentů speciální pedagogiky o hospicové péči v České republice / Awareness of special education students about hospice care in the Czech RepublicPorubová, Markéta January 2018 (has links)
The thesis "Awareness of special education students about hospice care in the Czech Republic" introduces hospices and hospice care to its reader. The aim of its theoretical part is to define basic terms such as a hospice, hospice care, palliative care and forms of hospice care. Needs of a client and a client's family are analysed within the scope of hospice care. Subchapters also deal with hospice care providers' association, current legislation and financing in the field of hospice care. The thesis' theoretical part concludes with a remark on the Programme "Support of hospice palliative care in the Czech Republic". The research part is based on the quantitative survey and its aim is the analyzation of special education students' knowledge of hospice care in the Czech Republic. Results shows that students have basic knowledge thereof.
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Etické problémy a dilemata sociálních pracovníků v hospicovém zařízení / The ethic issues and dilemmas of social workers in hospice establishmentGRILLOVÁ, Dagmar January 2010 (has links)
The paper focuses on ethic issues and dilemmas which are connected with hospice care and makes emphasis on the actual problem of dying process and death alone. The thesis has a theoretical characteristic.
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Eutanazie z hlediska etiky a teologie / Euthanasia from the points of view of theology and ethicsBARTKOVÁ, Štěpánka January 2010 (has links)
Abstract Euthanasia from the points of view of theology and ethics Key words: euthanasia, suffering, death, dying, dignity, human rights, doctor, patient, palliative medicine, hospice care, assisted suicide, religious motivation, followers, objectors of euthanasia In my thesis I am covering the topic of ?qeuthanasia??. The main objective of this paper is to introduce the reader to the problem of euthanasia from the points of view of theology and ethics. This thesis consists of theoretical and practical parts. The theoretical part further consists of eleven chapters. In the first chapter, the types of euthanasia ares discussed (active, passive, prenatal, and assisted suicide). In the second chapter, the history of euthanasia is discussed in a great detail. The third chapter mainly concentrates on euthanasia in the world. The fourth chapter is about the criteria of death. In the fifth chapter, I address the questions of euthanasia and death in recent years. The sixth chapter is about the relationship between a doctor and a patient. The seventh chapter covers palliative medicine and the eighth chapter further expands on this subject with the topic of hospice care. In the ninth chapter, I pursue the point of religious motivational impact. The tenth and eleventh chapters are dedicated to the followers and objectors of euthanasia. The practical part concentrates on exploratory research. I have chosen sociological research using the methods of discussion. Here are three interviews with experts, who interact with dying individuals on a daily basis. These questioned specialists are believers and therefore the discourses are anonymous. The objective of these discussions was to uncover how professional in different facilities view the issues of euthanasia. This objective was sucessfully achieved.
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Relacionamentos entre pais e profissionais da saúde no final de vida da criança com câncer hospitalizada: encontros que sobrevivem ao tempo / Relationships between parents and healthcare providers in child\'s end-of-life care in an oncology hospital: encounters that survive through timesMaiara Rodrigues dos Santos 29 November 2016 (has links)
Introdução: O relacionamento estabelecido entre profissionais de saúde, criança e família durante os cuidados de final de vida é complexo e multidimensional. Poucas evidências mostram como os relacionamentos são estabelecidos no contexto de final de vida da criança e influenciam no luto após a morte de um filho. Objetivo: Interpretar a experiência de pais sobre os relacionamentos estabelecidos com os profissionais de saúde durante o final de vida da criança com câncer no hospital. Método: Trata-se de uma pesquisa qualitativa, guiada pela hermenêutica filosófica de Gadamer. A coleta dos dados foi realizada por meio de observações de campo em um hospital oncológico pediátrico com famílias de crianças hospitalizadas em situação de final de vida, entrevista com pais enlutados pelo menos 6 meses após o óbito da criança e análise de prontuários. Para a análise dos dados, o processo de transcrição, leitura e releitura dos dados, revisão das notas de campo e reflexão sobre os dados com outros pesquisadores ajudaram na compreensão do fenômeno para a geração de interpretações. Para tanto, foram identificadas unidades de significados nos dados que, posteriormente, foram agrupadas por similaridade para a formação indutiva de temas. Resultados: Os relacionamentos entre pais e profissionais da saúde no final de vida da criança com câncer hospitalizada desvelam fenômenos do encontro e da interação interpessoal presentes na situação de doença, morte e perda. Esses relacionamentos são permeados pela presença de valores humanos e são estabelecidos de forma dinamica com vínculos diversos. Existem componentes evidentes no relacionamento durante o final de vida da criança no hospital, tal como o amparo, o silêncio, a deterioração, a tolerância, a hierarquia, o compartilhamento e a confiança, bem como, fatores internos e externos que influenciam nas interações. Por meio dos relacionamentos, os pais reavaliam o próprio papel, enquanto vivenciavam a experiência inesperada de perder um filho e significados atribuídos à doença e à perda são associados aos encontros mesmo anos após a morte do filho. Considerações finais: Os relacionamentos servem de base para fortalecer e suportar os pais a exercerem o papel de cuidadores para garantir a excelência no cuidado do filho. A qualidade dos relacionamentos entre pais e profissionais da saúde torna-se uma lembrança marcante no processo de luto e estabelecem uma conexão permanente com o filho falecido. Um olhar para o relacionamento entre familiares e profissionais integrando a ciência do cuidado proporciona a base de paradigmas não positivistas, que são urgentes nas situações de final de vida. Este estudo pode contribuir com as políticas de enfermagem na consolidação de futuras diretrizes sobre a qualidade na prática do cuidado de final de vida da criança, facilitando para as famílias manter vínculos significativos durante o processo de doença, perda e luto. / Introduction: The relationship established between family and healthcare providers during the childs end-of-life care is complex and multidimensional. There are few evidences which explore how these relationships during the childs last hospitalization influence familial adaptation after loss. Objective: To interpret parents experience in their relationship with healthcare providers during the childs end-of-life with cancer in the hospital. Methods: This is a qualitative research, guided by Gadamers philosophical hermeneutics. Data collection was through field observations conducted in a pediatric oncology hospital with hospitalized families in end-of-life situation, interviews with bereaved parents at least 6 month after the childs death and medical records analysis. For the data analysis, the process of transcription, reading and re-reading the data, reviewing field notes and reflection on the data with other researchers helped understand the phenomenon to generate interpretations. Therefore, units of meaning emerged from the data were grouped, and themes were inductively determined and submitted to an interpretation process. Results: Relationships between parents and healthcare providers during a childs end-of-life process unveil the encounters and interpersonal interactions phenomena in illness and loss trajectory. These relationships are permeated with human values and are established in a dynamic way with various bondings. There are evident components in a child´s end-of-life context, such as presence, silence, deteriorations, tolerance, hierarchy, collaboration and trusting, as well as internal and external factors which influence the interactions. Through relationships, parents reevaluate their own role, while they live the unexpected experience of losing a child and attribute meanings to the loss. Final considerations: Relationships serve as a basis for strengthening and supporting parents in providing excellence in the child\'s care. The quality of the relationship between parents and healthcare providers is a remarkable memory of the child\'s life during the bereavement process. Looking into the relationship between parents and providers integrating it with caring science provides a basis for non-positivist paradigms which are urgent in end-of-life situations. This study aims to contribute to end-of-life nursing policies in recognizing the components to improve the quality of the relationships as a starting point for care which will allow families to have a safe base while experiencing the child\'s illness and the bereavement process.
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Domov s hospicovou péčí / Home with hospice careHolohlavská, Lenka January 2015 (has links)
The main goal of this diploma project is detailed design documentation of the House with hospic care, Litomyšl. The building consists of two upper ground floor levels. First ground floor is partially recessed into the terrain. The layout responds to the main purpose of the building - healthcare and social centre. Hospic is located on the edge of the city, it has the L-shaped form. The area with rooms for patients is distributed along the southern facade. The objective of connecting the interior and garden in the courtyard has been considered while forming the exterior finishing surfaces. The capacity of the hospice centre is 15 beds. The building structure is made of masonry walls with reinforced concrete slabs and combination of single sloped roof with flat roof.
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Domácí hospicová péče v České republice / Hospice Home Care in the Czech RepublicKušnirová, Žaneta January 2018 (has links)
This thesis deals with the development of hospice home care policy by identifying key events and actors who express themselves in the Czech Republic about the issue of hospice home care. From a methodological point of view, a qualitative approach is chosen. The research design of the thesis is a historical case study that allows to chronologically capture key events of origin and development of hospice home care in the Czech Republic. The work uses both secondary data and primary data. Primary data were obtained by eight expert interviews with members of a professional society, hospice home care providers, insurance companyand doctors. The author explains the development of hospice home care in the Czech Republic from 1989 until present through key events. In addition, the author identifies key actors and their value beliefs in the area of hospice home care on the basis of advocacy coalitions theory. She further analyzes the creation of possible coalitions of these actors. The thesis, using the view of questioned experts, identifies the main problems and barriers of the hospice home care system in the Czech Republic.
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