The main purpose of this study was to develop Inventory of Concepts of Good Death to explore the concepts of good death and the relationships among fear of death and concepts of good death in adolescents. This study used Inventory of Concepts of Good Death and The Multidimensional Fear of Death Scale to investigate the Junior high school students within the Taipei and Kaohsiung County , 600 copies of the questionnaire were distributed to the subjects who were chosen. 495 of the 600 subjects were available.The data gathered from questuonnaires were analyzed by statistical methods such as descriptive analysis, t-test, one-way ANOVA, point-biserial correlation, Pearson¡¦s correlation and interaction regression analysis.The main findings in this study were as follows: The concepts of good death included Physical, Perceptive, Affective, Spiritual and Socie-Cultural levels. Adolescents¡¦ fear of death and concepts of good death were up to the median. They showed the highest fear of death on Fear for Significant Others, and the best concepts of good death on Spiritual level. Adolescents who were females, personal religion was Chinese or western religious belief, parental religion was Chinese religious belief, being aware of good physical mental condition held better concepts of good death. Adolescents who talked about death publicly at home, had experienced the death of pets, were exposed to impressive death experience through the mass media like broadcasting and TV, have more death-relevant experience and held better concepts of good death. The fear of death in adolescents was higher and the concepts of good death were better. The fear of death could predict the concepts of good death when adolescents had less death-relevant experience. Based on the findings, some suggestions were proposed for teachers, counselor, parents, school, educational authorities and future studies.

Bakgrund: Sverige hör till ett av de länderna i världen där befolkningen lever längst, samtidigt går den medicinska utvecklingen ständigt framåt och skapar etiska dilemman gällande vården av den döende människan. Att förstå hur dessa patienter ska bemötas och vilka aspekter som är viktiga för en god död är en viktig del av den moderna sjukvården. Syfte: Syftet med denna litteraturöversikt var att undersöka vad en god död innebär ur ett patientperspektiv. Metod: Litteraturöversikt med deskriptiv design där resultatet baseras på 12 kvalitativa originalartiklar. Resultat: Resultatet visar på att vad en god död innebär är högst individuellt, några mönster framkom dock. Patienter värdesätter delaktighet i vården, de vill vara informerade om sin prognos och beslut som tas omkring den egna vården. Flertalet patienter vill fatta det slutgiltiga beslutet om sin behandling. Att behålla sin integritet och värdighet till slutet var andra delar i hur en god död upplevdes. Att styra över vart man dör är en annan viktig aspekt, att få dö en fridfull, smärtfri död i hemmet ansågs av många vara en god död. Assisterad dödshjälp ansågs i vissa fall bättre än en långsam process med mycket lidande under den sista tiden, men framförallt uttrycktes att döden skulle vara naturlig och inte utdragen. Slutsats: Döden och döendet är något som angår oss alla. Precis som övrig vård är det av stor vikt att även den palliativa vården individanpassas för att främja livskvalitet och bevara autonomi och värdighet / Background: Sweden has one of the highest life expectancies in the world, at the same time medical development is constantly ongoing. These two factors combined create ethical dilemmas regarding care for the dying patient. Understanding how patients in a palliative stage of their treatment view a good death and what aspects of care they value is a critical part of modern healthcare. Aim: The aim of this literature review is to get a better understanding of a good death from a patient perspective. Method: Literature review with a descriptive design where the result is based on 12 qualitative original articles. Result: The results show that a good death is a highly individual process. A few patterns emerged during this study. Patients value involvement in their own care; they want to be informed about their prognosis and their care. Many patients also want to make the final decision about their treatment. Retaining ones integrity and dignity to the end were also recognized as important factors of a good death. Having a say in where you die also important; to be able to have a peaceful and pain free death in ones home was considered part of a good death to many participants. Assisted euthanasia was, in some cases, considered better than a slow painful death. However, ensuring that the dying process was fast occurred via natural causes was more important. Conclusion: Death and the process of dying is something that affects us all. As in all care, it is important that palliative care is adapted to the individual to promote a better quality of life and to help the patient retain autonomy and dignity.

Esse trabalho discute a performance ritual e musical durante a Festa da Boa Morte e Glória realizada anualmente na segunda quinzena de agosto na cidade de Cachoeira, Recôncavo da Bahia. Elaborada através de elementos simbólicos, culturais, religiosos e de resistência política e social, a Festa da Boa Morte compreende performances musicais dentro de uma complexa performance ritual que é ao mesmo tempo coletiva e absolutamente restritiva. A Irmandade de Nossa Senhora da Boa Morte é um coletivo de mulheres idosas, todas religiosas enquanto praticantes do candomblé e do catolicismo popular. Como grupo a Irmandade é considerada elite na luta e resistência do negro contra o sofrimento e a escravidão no Brasil. As irmãs foram e são mulheres diferenciadas em vários sentidos: aos olhos da sociedade colonial eram chamadas de negras do partido alto; miticamente transgressoras da ordem masculina são consideradas iamis e organizadas em sacerdócio religioso unindo diferentes nações são donas do axé ou eleyes. As irmãs antigas compraram as alforrias de outros sacerdotes e sacerdotisas africanos, se comprometeram em garantir funerais dignos a si mesmas e aos seus, e mantém uma festa associada aos seus antepassados femininos (eguns) e aos seus orixás durante rituais católicos públicos e do candomblé (secretos). Segundo as irmãs, elas cumprem uma promessa feita pelas mais antigas: se todos os escravos fossem libertos elas cultuariam Maria na vida e na morte. Personagens narrando e encenando repetidamente performances, as irmãs desenvolvem seqüências rituais e musicais que vão da anunciação da morte ao velório de Nossa Senhora no primeiro dia da Festa. No segundo dia é realizado o enterro, e, no terceiro, demonstram sua crença na vida após a morte através da glorificação e assunção de Maria aos céus. Esses são os três principais momentos do ritual público, aos quais se seguem outros três dias de samba de roda que se fundem aos rituais secretos, já em desenvolvimento antes da Festa. O encerramento é marcado pela entrega de um presente às águas, para os orixás femininos Nanã, Iemanjá e Oxum. / This work discusses the musical and ritual performance during the Sisterhood of Good Death Celebration, which occurs in the second half of August in the city of Cachoeira, Recôncavo Area of Bahia. Involving symbolic, cultural, religious, social and political elements, the Sisterhood of Good Death Celebration engages musical performances inside a complex ritual performance that is at the same time collective and absolutely restrictive. The Sisterhood of Good Death is a collective of elderly women, all of them religious while devoted to candomblé and popular Catholicism. As a group, the Sisterhood is considered the elite in the stuggle of black people against oppression and slavery in Brazil. The Sisters were and still are distinguished women in many different ways: during the colonial period, they were called black women from the partido alto; mythically transgressing the dominant masculinity, they are considered iamis and organized in a religious ministry that congregates different candomblé nations. They are also the ones who possess the axé (eleyes). In the past, the sisters bought the manumission of other priests and priestesses, and commited to guaranteeing dignified funerals to themselves and to their people. The Celebration is associated with their female antecessors (eguns) and to their orixás during public catholic rituals and secret candomblé ceremonies. According to the sisters, they are living up to a promise made by their antecessors: If all the slaves were freed, they would all worship Mary in life and in death. Characters narrating and staging repeated performances, the sisters develop ritual and musical sequences which go from the annunciation of the death of the Virgin Mary to her vigil on the first day; on the second she is buried and on the third the Sisters demonstrate their belief in life after death through the glorification and elevation of Mary. These are the three most important moments of the public ritual, followed by three days of samba de roda . The samba takes place parallel to the development of the secret rituals started before the Celebration. On the last day of feast, the sisters deliver a gift to the waters, destinated to the female orixás Nanã, Iemanjá and Oxum.

This qualitative and quantitative study focused on exploring hospice patient’s perceptions of family support. Family support was conceptualized as which family member they expect to receive support from, types of support provided, frequency of support, family communication about medical illness, and type of support that is perceived to be most helpful. Fifteen partcipants between the ages of 70 to 98 were interviewed using purposive sampling. Findings showed that although participants found both physical and emotional support helpful, more than half reported perceiving emotional support as the most helpful. Recommendations for social work practice and research were discussed.

Delirium is a disturbance of consciousness and cognition that affects many terminally ill patients before death. It can manifest as confusion, hallucinations, and restlessness, all of which are known to be distressing to patients, families, and professional caregivers. Underlying the contemporary palliative care movement is a belief in the idea that a good death is possible; that dying can be made better for patients and families through the proper palliation of distressing symptoms and through proper attention to psychological, social, and spiritual issues that affect wellbeing at the end of life. Given that delirium is potentially disruptive to all that the good death assumes, i.e., mental awareness, patient-family communication, peace and comfort, the question was asked: What is the relationship between end-of-life delirium and the good death in hospice care? Ethnographic fieldwork was conducted at a freestanding residential hospice over a period of 15 months in a suburban community in eastern Canada. The research methods included participant observation (320 hours over 80 field visits), interviews with 28 hospice caregivers, and document analysis. The findings of this study provide an in-depth examination of the nature of caregiving relationships with patients and with families in end-of-life care. They illustrate how a commitment toward providing for the good death prevails within the cultural community of hospice, and how the conceptualization, assessment, and management of end-of-life delirium are organized within such a commitment. In this setting, experiences of conscious and cognitive change in dying are woven by hospice caregivers into a coherent system of meaning that is accommodated into prevailing scripts of what it means to die well. At the same time, delirium itself provides a facilitative context whereby processes of supporting families through the patient’s death are enabled. This study highlights the relevance of considering the contextual and cultural features of individual end-of-life care settings that wish to examine, and perhaps improve, the ways in which care of delirious patients and their families is provided.

Bakgrund: Trycksår är en lokal skada av huden. Skadan ligger ovanför ett benutskott och orsakas av tryck eller en kombination av tryck skjuvning eller friktion. Smärta från trycksåret är ett vanligt förekommande problem som påverkar livskvaliteten negativt. Syfte: Syftet med studien var att undersöka förekomsten av trycksår i livets slutskede samt att se om personer med smärta och trycksår är smärtskattade med VAS/NRS. Syftet var även att se om det fanns något samband mellan trycksår och smärta. Metod: Metoden som använts var en retrospektiv deskriptiv undersökning med kvantitativ ansats. Insamling av data skedde via frågor tagna ur dödsfallsenkäten. Uppgifterna togs ur Svenska palliativregistret samt via journalgranskning. Resultat: Förekomsten av trycksår under 2008-2010 var mellan 29 - 33 %. Under perioden dog 95 (30 %) personer med trycksår, 83 % av dessa trycksår var kategori 1 eller 2 sår. Av de som avled med trycksår upplevde 78 % smärta sista veckan i livet, 59 % hade smärtskattats med VAS/NRS där det visade sig att 69 % skattade över 3 på VAS/NRS skalan. Medianen på VAS/NRS var 6. Inget signifikant samband mellan trycksår och smärta påvisades. Slutsats: Personal som vårdar personer i livets slutskede bör ha en god kunskap om hur, var­för och när trycksår uppkommer mot slutet av livet och även ha ökad kunskap om kroppens smärtmekanismer samt vilken symtomlindring som fungerar. Nyckelord: god död, palliativvård, cancer, Svenska palliativregistret. / Background: Pressure ulcers are a local damage of the skin. The damage is above a bony prominence caused by pressure or a combination of pressure shear and friction. Pain from the pressure ulcer is a common problem that affects quality of life negatively. Aim: The aim of this study was to investigate the incidence of pressure ulcers in palliative care and to see if people with pain and pressure ulcers are pain assessed by VAS/NRS. The aim was also to see if there was any correlation between pressure ulcers and pain. Method: The method used was a retrospective descriptive study with quantitative approach. Data collection was done through questions taken from the Swedish death inquiry. The data were taken from the Swedish palliative register and through journal review. Results: The incidence of pressure ulcers during 2008-2010 was between 29 – 33 %. During the period died 95 (30%) with pressure ulcers, 83% of these pressure ulcers were category 1 or 2 wounds. Of those who died with pressure ulcers 78 % experienced pain last week of life, 59 % had pain assessed by VAS/NRS that showed that 69% estimated above 3 on the VAS/NRS scale. The median on VAS/NRS was 6. No significant correlation between pressure ulcers and pain were found. Conclusion: Staff who care for people in end of life care should have a good knowledge of how, why and when pressure ulcers occur towards the end of life, they should also have greater knowledge of the body's pain mechanisms and pain relief that works. Keywords: Good death, palliative care, cancer, Swedish palliative register.

Delirium is a disturbance of consciousness and cognition that affects many terminally ill patients before death. It can manifest as confusion, hallucinations, and restlessness, all of which are known to be distressing to patients, families, and professional caregivers. Underlying the contemporary palliative care movement is a belief in the idea that a good death is possible; that dying can be made better for patients and families through the proper palliation of distressing symptoms and through proper attention to psychological, social, and spiritual issues that affect wellbeing at the end of life. Given that delirium is potentially disruptive to all that the good death assumes, i.e., mental awareness, patient-family communication, peace and comfort, the question was asked: What is the relationship between end-of-life delirium and the good death in hospice care? Ethnographic fieldwork was conducted at a freestanding residential hospice over a period of 15 months in a suburban community in eastern Canada. The research methods included participant observation (320 hours over 80 field visits), interviews with 28 hospice caregivers, and document analysis. The findings of this study provide an in-depth examination of the nature of caregiving relationships with patients and with families in end-of-life care. They illustrate how a commitment toward providing for the good death prevails within the cultural community of hospice, and how the conceptualization, assessment, and management of end-of-life delirium are organized within such a commitment. In this setting, experiences of conscious and cognitive change in dying are woven by hospice caregivers into a coherent system of meaning that is accommodated into prevailing scripts of what it means to die well. At the same time, delirium itself provides a facilitative context whereby processes of supporting families through the patient’s death are enabled. This study highlights the relevance of considering the contextual and cultural features of individual end-of-life care settings that wish to examine, and perhaps improve, the ways in which care of delirious patients and their families is provided.

Esse trabalho discute a performance ritual e musical durante a Festa da Boa Morte e Glória realizada anualmente na segunda quinzena de agosto na cidade de Cachoeira, Recôncavo da Bahia. Elaborada através de elementos simbólicos, culturais, religiosos e de resistência política e social, a Festa da Boa Morte compreende performances musicais dentro de uma complexa performance ritual que é ao mesmo tempo coletiva e absolutamente restritiva. A Irmandade de Nossa Senhora da Boa Morte é um coletivo de mulheres idosas, todas religiosas enquanto praticantes do candomblé e do catolicismo popular. Como grupo a Irmandade é considerada elite na luta e resistência do negro contra o sofrimento e a escravidão no Brasil. As irmãs foram e são mulheres diferenciadas em vários sentidos: aos olhos da sociedade colonial eram chamadas de negras do partido alto; miticamente transgressoras da ordem masculina são consideradas iamis e organizadas em sacerdócio religioso unindo diferentes nações são donas do axé ou eleyes. As irmãs antigas compraram as alforrias de outros sacerdotes e sacerdotisas africanos, se comprometeram em garantir funerais dignos a si mesmas e aos seus, e mantém uma festa associada aos seus antepassados femininos (eguns) e aos seus orixás durante rituais católicos públicos e do candomblé (secretos). Segundo as irmãs, elas cumprem uma promessa feita pelas mais antigas: se todos os escravos fossem libertos elas cultuariam Maria na vida e na morte. Personagens narrando e encenando repetidamente performances, as irmãs desenvolvem seqüências rituais e musicais que vão da anunciação da morte ao velório de Nossa Senhora no primeiro dia da Festa. No segundo dia é realizado o enterro, e, no terceiro, demonstram sua crença na vida após a morte através da glorificação e assunção de Maria aos céus. Esses são os três principais momentos do ritual público, aos quais se seguem outros três dias de samba de roda que se fundem aos rituais secretos, já em desenvolvimento antes da Festa. O encerramento é marcado pela entrega de um presente às águas, para os orixás femininos Nanã, Iemanjá e Oxum. / This work discusses the musical and ritual performance during the Sisterhood of Good Death Celebration, which occurs in the second half of August in the city of Cachoeira, Recôncavo Area of Bahia. Involving symbolic, cultural, religious, social and political elements, the Sisterhood of Good Death Celebration engages musical performances inside a complex ritual performance that is at the same time collective and absolutely restrictive. The Sisterhood of Good Death is a collective of elderly women, all of them religious while devoted to candomblé and popular Catholicism. As a group, the Sisterhood is considered the elite in the stuggle of black people against oppression and slavery in Brazil. The Sisters were and still are distinguished women in many different ways: during the colonial period, they were called black women from the partido alto; mythically transgressing the dominant masculinity, they are considered iamis and organized in a religious ministry that congregates different candomblé nations. They are also the ones who possess the axé (eleyes). In the past, the sisters bought the manumission of other priests and priestesses, and commited to guaranteeing dignified funerals to themselves and to their people. The Celebration is associated with their female antecessors (eguns) and to their orixás during public catholic rituals and secret candomblé ceremonies. According to the sisters, they are living up to a promise made by their antecessors: If all the slaves were freed, they would all worship Mary in life and in death. Characters narrating and staging repeated performances, the sisters develop ritual and musical sequences which go from the annunciation of the death of the Virgin Mary to her vigil on the first day; on the second she is buried and on the third the Sisters demonstrate their belief in life after death through the glorification and elevation of Mary. These are the three most important moments of the public ritual, followed by three days of samba de roda . The samba takes place parallel to the development of the secret rituals started before the Celebration. On the last day of feast, the sisters deliver a gift to the waters, destinated to the female orixás Nanã, Iemanjá and Oxum.

Delirium is a disturbance of consciousness and cognition that affects many terminally ill patients before death. It can manifest as confusion, hallucinations, and restlessness, all of which are known to be distressing to patients, families, and professional caregivers. Underlying the contemporary palliative care movement is a belief in the idea that a good death is possible; that dying can be made better for patients and families through the proper palliation of distressing symptoms and through proper attention to psychological, social, and spiritual issues that affect wellbeing at the end of life. Given that delirium is potentially disruptive to all that the good death assumes, i.e., mental awareness, patient-family communication, peace and comfort, the question was asked: What is the relationship between end-of-life delirium and the good death in hospice care? Ethnographic fieldwork was conducted at a freestanding residential hospice over a period of 15 months in a suburban community in eastern Canada. The research methods included participant observation (320 hours over 80 field visits), interviews with 28 hospice caregivers, and document analysis. The findings of this study provide an in-depth examination of the nature of caregiving relationships with patients and with families in end-of-life care. They illustrate how a commitment toward providing for the good death prevails within the cultural community of hospice, and how the conceptualization, assessment, and management of end-of-life delirium are organized within such a commitment. In this setting, experiences of conscious and cognitive change in dying are woven by hospice caregivers into a coherent system of meaning that is accommodated into prevailing scripts of what it means to die well. At the same time, delirium itself provides a facilitative context whereby processes of supporting families through the patient’s death are enabled. This study highlights the relevance of considering the contextual and cultural features of individual end-of-life care settings that wish to examine, and perhaps improve, the ways in which care of delirious patients and their families is provided.

No description available.