The population demographics of the greater Toronto Area are rapidly changing, with visible minorities comprising 43% of the GTA, and 10% of the total adult population of Canada. It is incumbent upon the health care sector to accommodate these changes in a culturally competent manner. Health care and culture intersect in the most delicate of ways during the last stages of life. The health care system must ensure that minorities have an equal access to end-of-life health care services and that their individual cultural beliefs and values are respected by culturally competent health care providers. Hence, this thesis examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area. This study will show the strengths and limitations of the current hospice care in terms of providing culturally competent care. To explore this topic in greater detail, my research is guided by the following questions: 1) What is the current state of culturally competent care in a hospice setting? 2) What are the challenges to providing culturally competent care in a hospice in the Greater Toronto Area? 3) What are some possible strategies for increasing competency within a hospice setting? To explore my research questions fully, I provide a critical analysis of six cultural competency theories, while integrating a social determinants of health framework, focusing on the theory of social exclusion and minority health care. This case study analysis is enhanced by the 14 in-depth interviews of hospice volunteer participants and 1 administrator. There are six major findings in this research. First, volunteer participants encountered cultural clashes when their levels of cultural competency were weak. Second, volunteer participants revealed there was a lack of adequate cultural competency training with the hospice. Third, volunteer participants gave abundant suggestions for improving cultural competency training. Fourth, volunteer participants perceived the hospice to be unsupportive of some of their needs. Fifth, the lack of ethnic, cultural and linguistic diversity of the hospice volunteer participants was noted. Last, the lack of religiosity amongst the volunteer participants was surprising. This research is significant for its Canadian hospice volunteer focus and the findings will be beneficial in practice for patients, their families, volunteers, and other health care providers, by providing the knowledge and tools necessary to enhance their level of cultural competency.

The population demographics of the greater Toronto Area are rapidly changing, with visible minorities comprising 43% of the GTA, and 10% of the total adult population of Canada. It is incumbent upon the health care sector to accommodate these changes in a culturally competent manner. Health care and culture intersect in the most delicate of ways during the last stages of life. The health care system must ensure that minorities have an equal access to end-of-life health care services and that their individual cultural beliefs and values are respected by culturally competent health care providers. Hence, this thesis examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area. This study will show the strengths and limitations of the current hospice care in terms of providing culturally competent care. To explore this topic in greater detail, my research is guided by the following questions: 1) What is the current state of culturally competent care in a hospice setting? 2) What are the challenges to providing culturally competent care in a hospice in the Greater Toronto Area? 3) What are some possible strategies for increasing competency within a hospice setting? To explore my research questions fully, I provide a critical analysis of six cultural competency theories, while integrating a social determinants of health framework, focusing on the theory of social exclusion and minority health care. This case study analysis is enhanced by the 14 in-depth interviews of hospice volunteer participants and 1 administrator. There are six major findings in this research. First, volunteer participants encountered cultural clashes when their levels of cultural competency were weak. Second, volunteer participants revealed there was a lack of adequate cultural competency training with the hospice. Third, volunteer participants gave abundant suggestions for improving cultural competency training. Fourth, volunteer participants perceived the hospice to be unsupportive of some of their needs. Fifth, the lack of ethnic, cultural and linguistic diversity of the hospice volunteer participants was noted. Last, the lack of religiosity amongst the volunteer participants was surprising. This research is significant for its Canadian hospice volunteer focus and the findings will be beneficial in practice for patients, their families, volunteers, and other health care providers, by providing the knowledge and tools necessary to enhance their level of cultural competency.

This research focused on experiences of dying patients and hospice nurses in a hospice unit. The research objectives were to (i) acquire more extensive knowledge about how dying patients and hospice nurses experience life and death and (ii) describe patients who were cared for during a 10-year period in an inpatient hospice ward. Data were gathered via interviews with 19 nurses and 11 patients. An interpretive description method was used to analyze interview results. Data were also gathered from institutional care records that included gender, age, marital status, diagnosis, referral source, and length of stay (666 women and 555 men). Descriptive statistics were used to describe basic features of the study's data and to compare differences between women and men. The main finding from interviewing the nurses was that they were struggling to acknowledge and unveil the person within the weakening body. In doing so, they used various strategies such as (i) striving to understand patients’ experiences of body function loss; (ii) encouraging patients to uphold body functions and daily habits; (iii) acknowledging and balancing patients’ need for body control; and (iv) providing tender care for the body. After 2 years of work in hospice care, nurses described that facing the dying and death of many patients had an impact on daily work and private life. The close relationship with the dying patient led to existential issues concerning the meaning of life and death, which were conceptualized into this theme: death as an agent of change. Eleven years later, the presence of death took a less dominant place in the nurses’ lives, and the theme became: death as a companion in life. In the long-term, nurses emphasized that their relationships with dying patients fostered their professional and personal growth. The findings from interviewing the patients revealed that when death became a reality, life took on new meaning, and they acquired new values that were important to preserve or protect; this triggered need for feeling secure within this situation. These revelations were manifest in three sub-themes: (i) when possible death becomes a reality; (ii) living with death as a reality, and (iii) a need for a feeling of security. And this main theme was conceptualized: making sense of life close to death. Results regarding patients in hospice ward care over a 10-year period revealed significant differences between women and men. More women than men were single, had cancer with relatively short trajectories, and were referred from the oncology department. More men than women were diagnosed with types of cancer with somewhat longer trajectories. Despite longer trajectories, length of stay was shorter for men than for women. The most frequent referral source was the hospital. But compared to women, men (particularly younger men) were more often referred from home-based hospice care. The findings expand knowledge about dying and its various configurations; consequently, care and support needs will vary. For the dying person, it is important to know that care is provided according to the person’s preferences and given when needed.

Introdução As Diretivas Antecipadas de Vontade, também denominadas Testamento Vital constituem um documento com o registro expresso do desejo de um cidadão de recusar tratamento, caso venha a sofrer de alguma enfermidade terminal. Dessa forma, busca desconstruir uma cultura centrada no paternalismo que reduz o indivíduo doente a um paciente que deve aguardar, resignado e submissamente, que deliberações acerca de sua vida sejam tomadas por outros, sem que possa se manifestar ou decidir, autonomamente, como quer ser tratado ou que tipo de práticas de intervenção está disposto a aceitar. Objetivo - O presente trabalho objetivou conhecer a representação do Testamento Vital para os enfermeiros que atuam na assistência à pacientes em situação de terminalidade. Método - Trata-se de pesquisa de natureza qualitativa realizada com quinze enfermeiros que atuam na assistência à pacientes terminais, por meio de entrevistas norteadas pela seguinte questão Fale a respeito do Testamento Vital. Após a aprovação do Comitê de Ética em Pesquisa, houve a obtenção dos depoimentos que foram analisados de acordo com o método do Discurso do Sujeito Coletivo com fundamentação na Teoria das Representações Sociais de Serge Moscovici. Resultados - A pesquisa identificou três categorias que compõem o Discurso do Sujeito Coletivo: o enfermeiro frente às diretivas antecipadas de vontade; o enfermeiro frente à família contrária à vontade do paciente e o enfermeiro frente ao médico contrário à vontade do paciente. Conclusão - O testamento vital representa, na perspectiva dos enfermeiros, a autonomia e o direito do paciente pelas decisões nas situações de terminalidade que devem ser compartilhadas com seus familiares e profissionais de saúde. Não obstante, o enfermeiro pode vivenciar conflitos éticos nas situações em que o desejo manifestado por meio desse documento não é respeitado por familiares e/ou médicos. Diante dessa situação, o enfermeiro pode perceber a própria ação como limitada e sentir-se frustrado com a impossibidade de atender o desejo do paciente. / Introduction: Advance Directives also known as the Living Will Declaration constitute a manifestation of will by means of a document written by a person fully healthy of his mental faculties in order to dispose of the care, treatment and procedures that whether or not he or she wants to be submitted in case of a disease that is beyond therapeutic possibilities and incapable of manifesting his or her will freely. Objective - To know the representation of Living Will Declaration for nurses who work with terminally ill patients. Method - This is a qualitative research carried out with fifteen nurses who work in the care of terminal patients, through interviews guided by the following question \"Talk about the Living Will Declaration\". After the approval of the Committee of Ethics in Research, the interviews were obtained, which were analyzed according to the Collective Subject Discourse method based on Serge Moscovici\'s Theory of Social Representations. Results - The research identified three categories that make up the Discourse of the Collective Subject: \"the nurse in front of the advance directives \"; \"The nurse facing the family contrary to the will of the patient\" and \"the nurse facing the doctor contrary to the will of the patient\". Conclusion - The living will declaration represents, from the perspective of nurses, the autonomy and the right of the patient for decisions in terminal situations that should be shared with family members and health professionals. Nonetheless, nurses may experience ethical conflicts in situations where the desire expressed through this document is not respected by family members and / or doctors. Faced with this situation, the nurse can perceive the action as limited and feel frustrated with the impossibility of fulfilling the patient\'s desire.

Hintergrund: Patienten mit hämatologischen Neoplasien sind in den spezialisierten palliativmedizinischen Versorgungsstrukturen im Vergleich zu Patienten mit soliden Tumoren unterrepräsentiert. Im Falle eines palliativmedizinischen Einbezuges erfolgt dieser deutlich später. Hierfür werden verschiedene Gründe diskutiert: Schwierigkeiten in der Prognosefestlegung, das Auftreten von akuten Komplikationen und plötzlichem Krankheitsprogress oder die Notwendigkeit von fortgesetzten invasiven Therapiemaßnahmen. Methodik: In dieser Studie wurden die deutschlandweit erhobenen Daten der Hospiz- und Palliativerhebung (HOPE) von 2006 bis 2008 sekundär ausgewertet, um die klinische Charakteristik und spezielle Therapie- und Versorgungsaspekte von hämatologischen Patienten in spezialisierten Palliativeinrichtungen zu analysieren und mit denen von Patienten mit überwiegend soliden Tumoren sowie mit den prospektiv gewonnen Daten von inkurabel hämatologisch erkrankten Patienten der Abteilung für Hämatologie und Onkologie der Universitätsmedizin Göttingen ohne Anschluss an eine palliativmedizinische Versorgung zu vergleichen. Ergebnisse: Von den insgesamt 5.487 in der HOPE-Erhebung erfassten Palliativpatienten wiesen nur 220 Patienten (4%) eine maligne hämatologische Grunderkrankung auf. Es wurden 50 inkurabel erkrankte hämatologische Patienten der Klinik für Hämatologie und Onkologie erfasst, die einen deutlich besseren Allgemeinzustand und subjektives Gesamtbefinden aufwiesen, weniger fokale Symptome, zeigten, jedoch häufiger an psychischen Symptomen litten, als die Patienten in den palliativmedizinischen Einrichtungen. Hämatologische Patienten erhielten deutlich mehr interventionelle Therapiemaßnahmen wie fortgesetzte palliative Chemotherapie oder Transfusionen. Diskussion: Die Ergebnisse dieser Arbeit zeigen die spezifischen Charakteristika und Bedürfnisse von Patienten mit fortgeschrittenen malignen hämatologischen Grunderkrankungen und machen so die speziellen Anforderungen an die palliativmedizinische Versorgung dieser Patientengruppe deutlich. Auch auf Grundlage dieser Erkenntnisse bedarf es der Entwicklung von neuen, flexiblen Behandlungskonzepten, um hämato-onkologischen Patienten den Zugang zur Palliativversorgung zu erleichtern bzw. eine frühere und bedürfnis- anstatt prognoseorientierte palliativmedizinische Mitbehandlung zu ermöglichen.

Introdução As Diretivas Antecipadas de Vontade, também denominadas Testamento Vital constituem um documento com o registro expresso do desejo de um cidadão de recusar tratamento, caso venha a sofrer de alguma enfermidade terminal. Dessa forma, busca desconstruir uma cultura centrada no paternalismo que reduz o indivíduo doente a um paciente que deve aguardar, resignado e submissamente, que deliberações acerca de sua vida sejam tomadas por outros, sem que possa se manifestar ou decidir, autonomamente, como quer ser tratado ou que tipo de práticas de intervenção está disposto a aceitar. Objetivo - O presente trabalho objetivou conhecer a representação do Testamento Vital para os enfermeiros que atuam na assistência à pacientes em situação de terminalidade. Método - Trata-se de pesquisa de natureza qualitativa realizada com quinze enfermeiros que atuam na assistência à pacientes terminais, por meio de entrevistas norteadas pela seguinte questão Fale a respeito do Testamento Vital. Após a aprovação do Comitê de Ética em Pesquisa, houve a obtenção dos depoimentos que foram analisados de acordo com o método do Discurso do Sujeito Coletivo com fundamentação na Teoria das Representações Sociais de Serge Moscovici. Resultados - A pesquisa identificou três categorias que compõem o Discurso do Sujeito Coletivo: o enfermeiro frente às diretivas antecipadas de vontade; o enfermeiro frente à família contrária à vontade do paciente e o enfermeiro frente ao médico contrário à vontade do paciente. Conclusão - O testamento vital representa, na perspectiva dos enfermeiros, a autonomia e o direito do paciente pelas decisões nas situações de terminalidade que devem ser compartilhadas com seus familiares e profissionais de saúde. Não obstante, o enfermeiro pode vivenciar conflitos éticos nas situações em que o desejo manifestado por meio desse documento não é respeitado por familiares e/ou médicos. Diante dessa situação, o enfermeiro pode perceber a própria ação como limitada e sentir-se frustrado com a impossibidade de atender o desejo do paciente. / Introduction: Advance Directives also known as the Living Will Declaration constitute a manifestation of will by means of a document written by a person fully healthy of his mental faculties in order to dispose of the care, treatment and procedures that whether or not he or she wants to be submitted in case of a disease that is beyond therapeutic possibilities and incapable of manifesting his or her will freely. Objective - To know the representation of Living Will Declaration for nurses who work with terminally ill patients. Method - This is a qualitative research carried out with fifteen nurses who work in the care of terminal patients, through interviews guided by the following question \"Talk about the Living Will Declaration\". After the approval of the Committee of Ethics in Research, the interviews were obtained, which were analyzed according to the Collective Subject Discourse method based on Serge Moscovici\'s Theory of Social Representations. Results - The research identified three categories that make up the Discourse of the Collective Subject: \"the nurse in front of the advance directives \"; \"The nurse facing the family contrary to the will of the patient\" and \"the nurse facing the doctor contrary to the will of the patient\". Conclusion - The living will declaration represents, from the perspective of nurses, the autonomy and the right of the patient for decisions in terminal situations that should be shared with family members and health professionals. Nonetheless, nurses may experience ethical conflicts in situations where the desire expressed through this document is not respected by family members and / or doctors. Faced with this situation, the nurse can perceive the action as limited and feel frustrated with the impossibility of fulfilling the patient\'s desire.

The main topic of this diploma thesis is support of informal caregivers taking care for dying loved ones or loved ones with life-threatening illness in the home environment. The theoretical partis focused on informal carers, the quality of life of informal carers, the quality of life of dying people and quality of life of people with life-threatening diseases, death and the stages of coping with death. It also deals with hospice and palliative care, their forms, methods and uses. The practical part is focused on the analysis and evaluation of questionnaires filled out by informal carers. The aim of my diploma thesis is to point out the need to help informally caring for dying loved ones or loved ones with life-threatening illnesses. Within the practical part of this thesis, it was intended to map helpful and, conversely, deficit types and ways of support. These outputs can then be the basis for improving the quality of support and services for informal carers caring for a loved one in the home environment. Keywords Informal care, formal care, hospice care, palliative care, quality of life, death.

This diploma work deals with hospice and a quality of care given to the clients of the hospice, that fully covers complex needs, changing during a life limiting illness, taking in account the dignity of the human being to the very last moment of his life. This care is a promise for a man, that he won´t be alone in the burdensome moments of his life. There are a hospice management and various forms of hospice care in Czech Republic described in a theoretical part of the work. This chapter is to be a handbook for providing companionship to the dying person and is to draw our attention not only to the changing priorities of the dying person and to stages, that he is to go through, but to an irreplaceable role of a caregiver at his bed. In a practical part of this work there are investigated the attitudes of the caregivers in hospice and public to the process of dying of the human being. The founded results of the research show, that people finding themselves in a final stage of the life-limiting illness change their priorities; the spiritual needs become more important, especially to attain a peace with self, with other people; clients trusting in God long for consilience with God; the results of the research show however, that most public is not familiar enough with the problem of dying and death, and that there is generally low knowledge on how to provide companionship to the dying person.